The Georgia Wimberlys

The Last Month Or So...

2012-01-06T21:00:00.000-05:00

Where to start... Ok here will be your order in case you need to jump around: 1) Medical Updates, 2) Pre-Christmas, 3) Christmas, 4) Post-Christmas, 5) Tummy Bug and ER Visit, 6) Disaster Return Trip to Macon

1) Medical Updates: Luke had his circ and defect repair the first week of December. I think we were more affected than he was. Within a day he was back to his normal self, although diaper changes were a challenge for a while. We went back to Atlanta today for a check up - he had some scar tissue adhesions that the doctor addressed in office (tears were shed briefly) and we will have to go back one more visit to be sure the adhesions don't return. SOOOO CLOSE to closing the door on one of our medical dramas from 2011.

2) Sam understood 'Christmas' this year...he understood Santa was coming and would bring presents if he was good, loved the tree and lights, and knew the wrapped presents under the tree were not to be opened until he had the OK on Christmas morning. It was fun to watch him get excited (or scared) when he would see Santa. We went to a neighborhood Santa Breakfast where we got our best "Santa" photo of our several Santa meetings this year. We went to our annual Christmas Party with Kids at Heart, the support group for children and families of children who have had heart surgery at Egleston. Sam got to see his heart friend, Emery, and made some yummy cookies (the highlight for him).

3) Christmas: We drove to Mobile for Christmas this year. Sam had started to become obsessed with the presents under the tree. You could tell it was driving him crazy to know he had so many he would get to open. He would just sit under my parents tree and move the boxes around, and call out which box was for which person. Chris and I went our for a run Christmas eve morning, and I somehow stepped wrong and sprained my ankle, right along Cottagehill Road in full view of a million cars driving by. I'm still limping. We went to Christmas eve mass at St. Pius with Fr. Savoie, who was very influential to Chris and I during grade school and high school. He called all the kids up to the alter during the Homily to read the story of Christmas...Sam ALMOST went, but then got shy when all the other kids got up there and came running back to us. Christmas morning, Sam was so focused on opening his presents, that he didn't exactly react to the Santa presents that were sitting unwrapped under the tree. He did his stereotypical Sam thing, and got upset that the arm chairs had been moved (to make room for Santa gifts)...ever the OCD kid. He he had a FANTASTIC Christmas...between Santa's gracious gifts (including a power wheel and bike), opening presents at my parents house, then having a second Christmas morning at Uncle Will and Aunt Bradley's house, then having a THIRD Christmas morning at Yaya and Pops house...trust me he enjoyed himself. Luke had a blast too! I can't wait until they are both jumping at the crack of dawn to get under the tree!

4) Post-Christmas: We kept busy while in Mobile. We had several 'dates' with old friends, caught up on some movies, and spent plenty of time with family. Chris and I broke away from the kids and went on a little anniversary trip to Biloxi. We stayed at the Grand Casino, and had a couples massage in their really awesome spa. We spent the night at Yaya and Pops house for New Years eve - a rare treat. Usually the inn is too full. But we took over and Sam got to wake up to Yaya's breakfast treat - Krispy Kreme!

5) Tummy Bug and ER visit: Unfortunately there was another little treat for us that morning...Luke was throwing up. At first I didn't think much of it...he just seemed to be gagging on spit. But then he threw up a whole bottle. Later in the day, Sam started throwing up. While Luke got better fast, Sam did not. By 6 pm, Sam was pale and lethargic. I went to wake him up from a nap to check on him and he was white as a sheet, with his eyes half open/ half closed. At first I thought he was looking at me, then I realized he was not. My heart stopped, as I honestly considered he might not be with me. I know that might seem irrational, but keep in mind what would be improbable for most holds a higher probability for us due to his condition. I immediately jumped on top of him, and he very slowly opened his eyes. We took him to the ER to get him checked out. His oxygen levels were quite low (74-76). The doctor said it was due to dehydration, so Sam got an antinausea pill and several glasses of water. Thankfully he was able to keep those down, and within a few hours of getting to the ER, he seemed much better (although very tired). His oxygen when we left the ER was where it was at our last cardiology appointment...79-80. A sad reminder to me that surgery is lurking ever closer. Sam slept great that night and woke up a little weak but happy the next morning.

6) Disaster Trip Home: We had accumulated so much stuff over Christmas that we had to take my parents trailer home. We loaded up and said some sad goodbyes. Sam was ready to go home though, and was pretty happy to get in the car. About 13 miles outside of Mobile, we blew a tire in the trailer! Chris got a 2 ton car jack for Christmas, and got to give it a try on the side of I-10! My parents had to come meet us to give us a correct sized trailer spare. Sam got a few more minutes of being spoiled. By the time we got going and finally got home, it was late. Kids went to bed fine, but the trip messed up our schedule. It was a rough start to the next day. It didn't help that Sam got moved up to the next classroom and had to start with a new teacher. He LOVES his old teacher and old classroom, and ol' OCD Sam had a very difficult time switching to the new. He is used to the change now, and very happy with his new classroom which has LOTS of new toys! But our disaster last few days in Mobile still linger...the tummy bug hit ME yesterday and has had me down through today!

Ok...I know that was pretty disjointed, but that should catch you up through today. One of my many resolutions is to keep this updated better through 2012! One last happy thought: I have a very good friend who just adopted their first baby. They will make amazing parents, and have fought through some adversity to get a hold of their beautiful girl. I also have another good friend who just recently announced they are expecting their first baby. They, too, are an amazing Christian couple, who have suffered the pain of miscarriage. Both couples so much deserve children, and I am so happy for them.

~Kathy

3rd Birthday and Continued Medical Dramas

2011-12-06T21:00:00.000-05:00

I swear, between Sam and Luke, our insurance is probably freakin' out over all the medical junk they have had to shell out cash for recently. Long story short: Sam has his normal cardiac stuff, then heart cath, ENT stuff with a new set of tubes, and new GI issues that are now sending us up to Atlanta. Luke had a fall at daycare that resulted in a skull fracture with subsequent visits to the ER and Atlanta neurology, and just had his 'hypospadias' repair with upcoming follow-up in Atlanta, not to mention he just got his first ear infection. GUH! By the end of the year, we will have seen specialists in cardiology, gastroenterology, neurology, urology, audiology, and otolaryngology...all of those in Atlanta. I'm not complaining about the Atlanta thing though...we would be fools to think anyone in Macon could come close to being as good as those doctors and that facility.

I will return to the medical dramas in a minute. First, this past Saturday was Sam's THIRD BIRTHDAY!! What a milestone. We decided to mark the occasion with a birthday party in our back yard. We didn't want to drop a ton of cash, so we put together a 'homemade' idea. We took medium sized boxes and put them together and painted them to look like cars. Sam and his neighborhood buddies decorated them and had a blast running around the back yard. We had a blast hanging out with the neighbors. Poor Sam got super fatigued after running around for an hour or so, and actually ended up taking a nap on our bed (he has ALWAYS refused sleeping in our bed up to this point) mid party. But he was revived and we turned the birthday party into a SEC championship game watching party. It was really a great day, and Sam thoroughly enjoyed getting attention and presents!

The day before the party, Sam had his normal 3 month cardiology follow up. While his doctor was clearly very pleased with the results of his heart cath, Sam's oxygen levels were lower than normal (around 79-80). Dr. Cardis feels we may be headed into the Fontan surgery sooner than later. He wants us to consider April of this upcoming year. Sam's most recent heart cath would still be 'valid' and we wouldn't have to do another. Also, it would be after cold and flu season. I just wanted to go longer. I had given up hope for the longest prediction we were given, which was age 9. But I was hoping for Kindergarten or 1st grade age. Not 3 years old. But, I don't want to wait too long and get in trouble either. I definitely do not want to crash land into this surgery the way we crash landed into the last one. And when Sam ended up begging for a nap mid birthday party, it became very apparent to me that April may have to be the time. We will see what his oxygen levels look like in March and make a decision then.

Little Luke had his urological repair yesterday. It was a simple surgery, but a compounding cold (and hard to find veins) kept us in the hospital most of the day. Poor little guy got brought back to me from surgery with a nasal cannula and on 2L of oxygen. The doctors were worried because his oxygen saturations were around 93...I had to chuckle a little...Sam has NEVER seen 93...93 sounds like a blessing from God to me! Luke took a while to recover from the medicines, but has basically acted like nothing happened to him at all. I have to take the bandage off tomorrow though, which should be fun. He's so sweet and carefree, I hate to see him in distress at all. But he (and Sam) is a trooper, and I am amazed at what he has gone thorough in his short life with a smile on his face!

~Kathy

Cath Master!

2011-10-16T21:07:00.000-04:00

So Sam had his heart cath on Friday. It went far better than expected!

We stayed the night in Atlanta at the Georgia Power House (like Ronald McDonald House). We had left Sam in Macon with Chris's parents, and surprisingly, Sam wasn't too sad about leaving them all behind for a car ride with Mommy and Daddy to go visit "Sam's hospital." We got up early and checked in at Egleston. Sam was pretty happy and wasn't too suspicious. The cath lab set us up with a room, got Sam a hospital gown (and a stuffed animal to keep). We had to wait a bit as there was one case before Sam's. When the nurse came with the Verced to make Sam sleepy, things started getting rough. He wouldn't take the medicine, and it had to basically be forced down his throat by the nurses. He was upset about it, and was crying, and then started gagging. Now, I just KNEW he wouldn't throw up, since he hadn't eaten anything since late late the night before (surgical precautions, and all). But suddenly he vomited a whole kidney bean shaped basin of chunky food....from LUNCH the day before!! OBVIOUSLY our GI issues did not end with that last barium study, and I have a feeling our GI will be doing a scope after hearing about this.

After the Verced kicked in, Sam was reasonably content, though he didn't want to see those nurses again! When it came time to take Sam back to the cath lab, he did NOT want to go with the nurse. They graciously allowed Chris to carry him to the lab table. Sam was silly happy by then, and happily allowed the anesthesiologist to place the gas mask on his face. Chris said he went to sleep while having a tickle fight with one of the nurses...adorable. Chris and I went down to the cafeteria and had breakfast and a coffee. We were touring the hospital and reminiscing about our stay during Sam's surgery. Suddenly, we got a cell phone call saying Sam was all done and the doctor was ready to talk to us!! Good or bad?!?!

We quickly ran upstairs and met the doctor. He said everything looked much MUCH more stable upon cath exploration than can be seen during an echo. While he did have some narrowing of his pulmonary artery, it actually was more of a 'kink' in the artery, and the pressure on either side was perfect and equal. And as far as the collateral arteries go, there was only one that would have required coiling (though he has many others that aren't necessarily a danger). That particular one, however, was super small, and he said it wasn't worth the effort. He expects it to grow slow, and not cause us any problems in the near future. Since we didn't have to do either an artery ballooning or a collateral artery coiling, we would get to go home as soon as Sam recovered from the anesthesia!

The best news all day was that the doctor feels that with as stable as Sam seems to be, we can continue to hold off on his next open heart surgery! He felt we could probably last as long as 2-3 more years (to age 4-5). Sounds great to us!!

Sam returned to our room, not too happy but not as bad as recover from his ear tubes. He didn't want the nurses around, so when they needed to do an Echo, he wasn't thrilled about being touched by the Echo tech. He eventually settled down by being put in his hospital bed and having Mommy laid up in the bed next to him watching Yo Gabba Gabba videos on Mommy's phone. Within an hour or so, we were being discharged!

We came home and relaxed with Chris's parents. The next day I had to remove his bandages (they went in for the cath in his neck and groin). They used big strips of tegaderm, and Sam fought like hell as clearly having the bandaged removed hurt. We'll have to request a 'Bandage Change' bead for that one...Ya Ya will need to get one too, as she had to hold Sam down while I worked on the bandage. I'm pretty sure she's got some bruises! Speaking of beads, Sam earned 3 more "Beads of Courage" beads...an IV bead, a Cath bead, and an Echo bead (which is the coolest one, because it glows in the dark).

To cap the weekend off, we went to the Georgia State Fair. We didn't stay long...just long enough to see the cows, pigs, horses, and the wild animal petting zoo complete with giraffe and zebra. Sam got to ride a pony, which was the highlight of his weekend I think!

We couldn't be happier with the results of the Cath. It was completely unexpected to not have to go through some interventions and have to stay the night...and we feel so blessed. Sam has really been nothing but a miracle when it comes to all of his major heart events. Looking at it all in hindsight, it seems so guided and planned. I just get the overwhelming sense that this is all meant to be. Sam is meant to be. Just the way he is. And he is meant to be here. And he will be here for a long time.

Beads of Courage

2011-10-12T19:54:00.000-04:00

Sam has officially gotten his Beads of Courage bead collection started. If you haven't heard of this organization, please check out their web site. If your child or someone you know might qualify, check the list to see if their hospital participates. To date, Sam has 129 beads, each representing a cardiac treatment, doctor visit, or event. He will earn several more this Friday, when we go to Atlanta for his second heart cath. We have started his journal, which will help him remember what each bead represents so he can know just how much he has been through. This is what we wrote on the first page of his journal.

When I first heard about the Beads of Courage program, I thought it was a truly genius idea. Complex medical conditions that affect a child and require lots of treatment are difficult enough for adults to understand. How can anyone expect a child to fully comprehend such a condition, its consequences for their own life, and its consequences for their family? Often times our instinct is to forget our ‘bad’ experiences in life. But you can’t just forget what you have to live with everyday. These conditions just become part of your existence and your personality, whether you want them to or not. How should a family turn the ‘bad’ of that type of condition into ‘good’, and help their child accept and embrace what simply cannot be changed?

That’s the real genius behind Beads. Giving a child a bead that signifies each event of treatment can turn an event that is unexplainable, painful, or scary into something that can be counted, and showed off as unique and special. It can provide a physical history of treatment, but in a language more appealing to children.

When Beads of Courage came to Children’s Healthcare of Atlanta, you had already been through two years of treatment. I sat down with the Bead tally sheet and our baby journal for you, and started to tally up your treatment history. I was saddened and joyful at the same time to discover you had earned 129 beads in your first 2 years of life! I was sad because it reminded me of all the things you had been through as a baby, and how unfair it is that any baby should suffer. But it made me joyful to think of what you have overcome, and reminded me that if you have survived these trials, surly you were meant for great things.

Tonight, I am starting your journal for your beads. I want you to be able to not only know you survived a particular treatment, but the story behind each one. Each bead and story should serve as a testament to your own strength, the love and support that surrounds you from your family and friends, and the blessing of top notch medical care that has brought you this far. I can’t wait for the day that you can physically help me write the story of each bead in this journal, and then one day take over writing this journal yourself.

I hope that these beads bring you a sense of accomplishment. I hope that you look at them and feel pride and strength over what you have experienced. I hope you take the beads with you to show-and-tell, write an essay about them in English class, carry them with you to college, display them in your first apartment, share the stories about them from your journal with your wife, and count each one with your children.

Don’t look at these beads and feel sad or cheated. Yes, these beads also symbolize a condition that may have severe consequences for your life span. Yes, these beads may represent pain and suffering. But you must remember that nothing is promised to us in this life. We were never told we would not suffer. We were never promised perfect health and happiness IN THIS LIFE. A person who is born perfectly whole and healthy could find themselves in a more dire situation than yours in a moments time.

Everyone carries a unique cross through life. These beads define yours. Always remember that this cross was chosen for you, and just for you. You have to make the most of your cross, turning the sad and unfortunate into something grand. Our cross is to have to watch our first born suffer, but raise him to overcome and strive for greatness anyway. I hope we succeed.

Medical Updates

2011-09-29T20:24:00.000-04:00

We have had (or are in the middle of) a month of medical crazyness with the boys.

Sam had his tubes surgery last weekend in Atlanta. We did preop at Egleston and then went to the Atlanta Aquarium. Sam had a great time, although by the time we had been there an hour or so he was spent. We stayed the night at a facility run by Georgia Power. It is a house for employees of GA Power who have to stay in Atlanta for medical procedures - like Ronald McDonald House. We woke up bright and early the next day for Sam's tubes. He was NOT a fan of putting on a hospital ID bracelet, and NOT a fan of putting on the gown. But he was flying high after getting some Versed. The surgery went fine, and Sam was brought back to us flying higher than when he left. He was loopy, and agitated. He puked a few times, which I thought was a bad omen for the rest of the day. We loaded him in the car carefully (he still needed total assistance to keep his balance), but sleeping on the ride home and then taking a nap when he got home helped tremendously. He apparently didn't have that bad of a time (or at least he has already totally forgotten) because he asked to go BACK to the doctor the next day!

And back he went. We had our GI appointment in Macon this past Tuesday. The GI feels that Sam's vomiting is highly unusual, and the fact that he throws up OLD food is highly unusual. We are being sent for an Upper GI Series next week (Barium milk-shake and xrays) to look for any obvious anomalies. If that isn't satisfactory, we will be going for a sedated scope...sigh. Anything with sedation is a risk with Sam, so I'm sure it will be in Atlanta if we have to do it.

In the mean time, lil' Luke came down with a rough cold. Then he started drooling a ton as he is already getting some teeth moving through his gums. Combined, they caused one cranky baby. He got sent home from daycare on Monday due to loose stools (surely the snot and drool he's been swallowing). So Luke got a trip to the Pediatrician for himself on Tuesday - of course all is fine. He went back to daycare and has been fine ever since.

BUT he will be going to the Urologist tomorrow to see what (if anything) needs to be done for his hypospadias. It will be just me and Luke headed to Atlanta for that, so I'm planning a little trip to Ikea for us both...you know, to de-stress from all these medical things!

Our last and biggest medical event is Sam's heart cath, which will be October 14. It can't come soon enough. Sam is certainly getting out of breath quicker, although he doesn't seem to care or notice.

Baptism and Appointments List

2011-09-20T21:10:00.000-04:00

We headed to Mobile for Luke's Baptism this past Friday. We got to go to a Mcgill (our high school) football game and see my brother-in-law in the marching band. We got to watch our oldest nephew's soccer game, shop, and went to TWO frozen yogurt bars in one day. Luke's Baptism was sweet. One of our favorite priests, who has known Chris and I since seventh grade, performed the sacrament. Luke, who is so big he was literally busting the snaps on his little outfit, had no problem with the water being poured over his lil' noggin! We had a family gathering afterward at Wentzl's, who set aside a whole room just for us. It was really lovely. A few pics below. John (my brother) is the Godfather and Lydia (Chris's sister) is the Godmother.

Up next: about 300 doctor appointments. It all starts Thursday with preop for Sam's tubes, then tubes on Friday (all in Atlanta at Egleston). Next week: GI for Sam in Macon, Urology for Luke in Atlanta. Week after: Pediatrician check up for Luke. Sometime (still pending scheduling) in the next two weeks: heart cath for Sam in Atlanta.

Two prayer requests: Say a prayer of thanksgiving and of health for Chris's cousin Josh and his wife Kimberly, who are 11 weeks into a miracle pregnancy! Say a prayer of peace for two heart families we know who have tragically said goodbye to their babies this week.

~Kathy

Sad Day at the Cardiologist

2011-09-15T20:22:00.000-04:00

Well, I guess we were bound to get here, one way or the other. Just was hoping to hold off longer. Our Cardiologist wants to do a heart cath in the next few weeks.

We (Sam and I) went for Sam's regular 3 month Cardio visit today. Chris is out of town and I was able to drop Luke at daycare before the visit. Sam was SO good. I can't even emphasize that enough. He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach. He weights 36lbs and is 41.5 inches tall....whoa! Where did my baby go!

Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath. He really can't play too long before he gets winded. This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded. Now, if you know Sam, you know he vomits A L L THE T I M E. He's a gagger...it's just what he does. But the vomiting just when winded is a fairly new development. Cardio is going to send a referral to GI, just to check it all out. He doesn't THINK it's heart related, which is good. But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.

After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung). It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before. He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right. He thinks the lop-sidedness might be causing the out of breath moments. He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint). While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming. More of those have formed since last time too, which might contribute to shortness of breath. He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more. Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated. I didn't think we would make it that far anyway, but hoped we would making a little further than this. He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer. We'll just have to see what they find and how much the coiling and ballooning help.

He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery) kids on Asprin and Lisinopril to help heart function. He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation. He said all 3 will be life long. I hate that. But whatever it takes, right?

Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage. It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience. This is a new program at CHOA. But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally! My job will be to string them and start a journal for him for each bead on the string from birth to the present. I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns. He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is. When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!

It may have been a blow, but we are prepared. I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery. It will be a rough few months for Sam, unfortunately! He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away! Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!!

On a whole different note, little Luke is growing like a weed! He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits! He has the BEST disposition, and hardly cries. He eats like every meal is his last, and sleeps like a champ. He is starting to giggle, and loves to talk. If he keeps being this good, he might earn himself a sister some day! Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias. I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta! I would LOVE to snag a pediatric therapy job there!

Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip. We will then be headed to Mobile for Luke's baptism. I don't think the fun ever ends in our house!

~Kathy

California, New School, and Birmingham...Oh My!!

2011-08-19T22:03:00.000-04:00

So it has been a very busy few weeks for us...when is it not?

A few weeks ago, I flew to California with Sam, Luke, and my sister Amanda. We met up with my parents, and spent the week visiting my Dad's mother and siblings. I was VERY pleasantly surprised with how well both Sam and Luke did during the flight. We opted NOT to bring supplemental oxygen this time, since Sam has done so well without needing it on previous flights. He did great in the high altitudes too, with no obvious increase in cyanosis or his other cardiac symptoms. Sam truly enjoyed playing at my grandmother's mountain cabin, and loved my uncle's jacuzzi and his house's proximity to the beach! This was Sam's second trip to the Pacific, and he could have cared less how cold the water was, he was ready to dive in! Luke was an angel, and decided it was time to start sleeping 6-7 hours at a time! I hardly know what to do with a baby who sleeps! The flight back was a little more rough, although not altogether bad. Sam and Amanda sat together in a row in front of me. Luke and I were literally squeezed in between two obese men, which made breastfeeding not only impractical but impossible. Thank God I packed plenty of formula

The Monday we returned from California, Sam started at his new school. It was tragic. He hasn't been out of school more than few weeks since his birth. This summer, not only has he been out of school for 8 weeks straight, but he has had a truly eventful 8 weeks full of Nana's and Yaya's and aunts and cousins...who would want to go back to school after all of that?? But his new school is great, and his sweet teachers have been so good. I think they were totally baffled and freaked out when I informed them about his heart...I think they thought he might drop dead on them any second. After a few tense days though, Sam has gotten used to his new friends and teachers, and they have relaxed about him! He happily walked into his classroom today, and has spent everyday since the first day talking his head off about the new toys and new playground and new friends when I pick him up at the end of the day.

With Sam being out of the house, Luke and I have had some one on one bonding time...which really hasn't happened much since he was born. Luke is SUCH a laid back kid...NOTHING like baby Sam. Here's a photo from one of our recent busy days of doing nothing:

This past week, Chris had a business trip to Birmingham, Alabama. The whole family came with him, even the dog. We stayed at a nice little Embassy Suites. We had an eventful 32 hours, which included one room change at the hotel due to leaking sinks, Sam puking in the lobby AND in his bed (sinus drainage caused a cough which caused a gag which caused...well, you know Sam...), and a brave trip to the zoo! Which Chris was at work, I decided to take the kids out. It just so happened the zoo was RIGHT next to the hotel, and (bonus) it was half price admission day! Biggest problem: we didn't bring our stroller. Thankfully, the rental stroller at the zoo was just big enough to squeeze Luke in his car seat and Sam. (Note: stroller rental was NOT half price...) It was warm, but not humid - a real rarity these days. We thoroughly enjoyed our day. Sam has a short attention span still, but loved seeing the animals. I laughed out loud when he called the ostrich a dinosaur. His favorite exhibit, however, was a the 'kids zoo' that included a water play area. Luke, again, was an angel, and slept through most of the whole trip.

I have really enjoyed my maternity leave, though it has been extremely busy. I have rarely had a single day where I just got to relax with my babies. I don't know how, but the house seems to need more cleaning and more attention when me and the kids are home. I feel like I'm constantly cleaning. And I tend to get really bored in the house really quick. Even though I LOVE being at home with the kids, I am ready to go back to work. A) Sam's social nature and his super smarts have proven to me daycare is great of my kids development - I truly feel like he would be a different kid entirely if I had been a stay at home mom with him (and I don't mean in a good way). B) I am a terrible person and wife after being locked in the house all day. For my sanity and for Chris's, I need to be out and about. C) I have a whole caseload of developmentally disabled kids who need me back at work! For most of these kids, I'm their only option for PT. And I'm happy to get back to them and do what I do.

I have one more week at home, then it's back to our old routine. I'm ready. But I'm going to live up this last week!

~Kathy

WHOA, Time Flew By!

2011-07-12T22:22:00.001-04:00

I CANNOT believe it has already been 5 weeks since Luke was born! We have some busy weeks following his arrival. My mom stayed in Macon after Luke was born to help me with Sam, since Chris went back to work after just a few days. Chris's mom came up about a week after Luke's birth. Both Moms and Sam left to go back to Mobile, and gave Chris and I a week to ourselves to get to know lil' man. After that week, Chris and I drove down to Mobile for a week of vacation. Luke got to meet the rest of our families, including all his aunts and uncles (minus Uncle Mark and Uncle John) and all his cousin's. We all came back to Macon and have spent the last week adjusting to being a family of 4.

Naturally, Sam returned to Macon SPOILED ROTTEN. After a full month of having my mom's full, undivided attention, he has had a tougher time adjusting to being home with ME verses having a new brother in the house! He doesn't interact with Luke much, but doesn't seem bothered by his presence, which is positive.

Luke is a natural sleeper. He goes down around 10-11pm, and sleeps 3-4 hour chunks of time, waking only to eat and then goes right back to sleep. I could make a list a mile long of the ways Luke has been different from Sam...sleeping and nursing rank REALLY HIGH on that list!

Enjoy a photo of our sweet little Luke dressed as Yoda, which was Chris's Father's Day present!

Welcome Luke Christian!

2011-06-06T14:21:00.000-04:00

SUCCESS! We delivered our sweet boy Luke Christian on Saturday afternoon.

I went into labor on Friday after finishing up my last day at work. Chris had to go out of town for business, so my parents had just arrived to help me with Sam while Chris was out. I woke up from a nap in pain but not overly hurting. My parents, Sam and I went out to eat for one last dinner, and I placed a call and got Chris to start heading home. I went into the hospital with my Mom around 8pm but got sent home around midnight due to poor progress. They gave me a sleeping pill, and told me to go home, take it, and relax. I was a little hesitant but man that sure did the trick!

I woke up about 4 hours later in for real labor pain. Chris was home by then, and he and I went back to the hospital around 6am. Things flowed very smooth after that. Got my room, got my epidural, and by 1130 we were pushing. I'm a championship pusher (all the nurses told me how awesome I was,especially considering the epidural) and he was born after just 3 contractions worth of pushes. Seems like there should be some kind of lapel pin or bracelet you should get to wear around for that kind of awesomeness.

Anyway, Luke Christian was 8lbs 8oz, 21 inches long. It was truly different getting to hold the baby immediately, keep him in the room with us after delivery, actually NURSE! I can list forever the things that are already so different about this birth compared to Sam and the heart experience. We even got to come home WITH HIM after 24 hours! We got home yesterday afternoon, and have been enjoying figuring out what to do with a true newborn for the first time...it's like being a first time parent.

He slept great in the hospital, but decided last night to stay awake AAALLLLLLL night long...and try to use me as a giant pacifier ALLLL night long. Sigh. But we are having a great time. My Mom stayed after the birth to help with big brother Sam, who is far more interested in having Nana around than Mommy, Daddy, and/or baby. He does like to look at him momentarily, but would really just prefer to go to another room with Nana to play. That's fine. As long as we aren't having meltdowns over the baby like I thought we would, Sam will be fine.

Say a prayer for us that this nursing thing keeps going well. We pumped for 4 months with Sam and it was tortuous. Also, Luke is not without a slight congenital defect. He has a mild urethral defect that went undetected until birth that will need a specialist's opinion, with a possible outpatient surgical correction. But we'll take that over a heart defect ANY DAY, and we feel confident all will be fine. We are happy; we are blessed.

~Kathy

Can't Stay in there Forever!

2011-06-01T19:38:00.000-04:00

Yes...still pregnant.

But not for long! For one, I'm dialated to 3cm as of today. Two, this baby's getting evicted, whether he likes it or not, come Monday. Induction starts at 7am!

Chris just left town for 48 hours (he'll be 3.5 hours away). Think I'll go before he gets back?

Say a quick prayer for Cain, who just had his Fontan. Also for Alexis, who finally received her new heart after 8 long months in the hospital. Alexis's whole family needs special prayers, too, as they just received word that their unborn child will also have a severe CHD and will need multiple surgeries.

~Kathy

Yeah, Still Pregnant.

2011-05-15T21:43:00.000-04:00

I'm pretty over being pregnant. Work is rough, as I'm either on the floor playing with kids, picking kids up, or holding kids using my whole body strength most of the day. I'm hungry but can't eat more than a little bit at a time, thanks to a baby taking up my entire abdomen. It's hot. And I mean HOT. My back hurts, I have no energy...blah blah blah...I'm just done.

Two weeks ago we had our 35 week ultrasound to check on the baby's position and size. I was a little sad we didn't get to see his face since he was turned around backward, and we didn't get a single photo as a souvenir. Baby boy was head down (which is good news), and was measuring at around 5 pounds 12 oz, which was a little big for his gestational age but that's how Sam was too. I go to the doctor every week now, which gives me something to look forward to. Most weeks are boring. Takes all of 5 minutes.

The most excitement we have had so far was last Thursday. I had actual contractions (painful) for about 3 hours that night. They never became regularly spaced, and slowly faded away. Sigh. It was a new experience for me though. With Sam, my water just broke...I wasn't having any contractions. The only contractions I got to experience were the ones brought on by a big bag of pitocen, and those contractions SUCKED.

As far as the rest of the family goes, Chris participated in a Warrior Dash in North Georgia this weekend - an off road race with a lot of obstacles. He had a good time, and Sam and I kept busy with our own adventures while he was gone. I took Sam to Monkey Joes - a kid's playplace with a bunch of blow up moon bounce type stuff. Sam was a little small for most of the stuff, but he had a blast just running around and watching other kids bounce and play. Parents are allowed to get in and help kids under 4 climb in the bouncers, but I didn't exactly want to go into labor at Monkey Joes. Today, we went to our neighbor's daughter's birthday party. They had a blow up moon bounce-like water slide. Once again, Sam was a little too small for it. It was a double slide, and they had once side with water and one without. Sam was content with me shoving him up to the top of the dry side, UNTIL he saw the kids in the water. But it was unusually cold today, and when the water would spray on him he would shy away. I shoved him half way up the wet side a few times and he would chicken out as soon as the water would start to hit him. Finally, one sweet little girl coaxed him the rest of the way to the top and slid down with him. Of course, when he hit the freezing pool of water at the bottom of the slide, it took his breath away and he started screaming! He recovered quickly, and moved on to throwing water balloons at his own feet. Needless to say, he went to sleep so easily tonight.

A few prayer requests: A heart friend from north Alabama is having a very rough time with their child, who has a very serious complication in addition to HRHS (Sam's defect). He is in the hospital awaiting their next move. Another heart friend from Daphne with HLHS (opposite but similar to Sam) just had his Glenn (Sam's surgery), and is recovering. And a prayer of thanksgiving for Amelia - niece of a friend of mine. She was born at 24 weeks gestation the Sam weekend as Sam's emergency surgery 2 years ago. She stayed in the hospital almost a full year, and has been struggling at times to reach milestones. However, in the last few months, she has really started to thrive, and their most recent victory is that they are starting to gain ground with getting her to oral feed vs her G-tube. It's been thrilling to hear her progress recently, and I've always been impressed with how well her parent's have persevered and helped her get to where she is today.

~Kathy

Two Baby-Moons

2011-05-04T21:30:00.000-04:00

Our little family was lucky enough to have the chance to escape our Macon, GA world for two vacations in a row these last few weeks.

First we were blessed by our neighbors, who gave us a weekend at their Fripp Island beach house off the South Carolina coast. It's a private island, so the crowd was super small. This was Sam's first real beach experience, since the oil spill ruined our chances to hit up the gulf coast last summer. He had a freakin' blast. He saw the water on our first trip down to the beach, and saw all the kids running around without shoes and shirts, and immediately started stripping off clothes while running down the beach to the water. It was so much fun to see him explore and experience the sand and water. Our neighbor's beach house was awesome too, and Chris and I got in some good relaxation time.

The next weekend we drove up to Gatlinburg, TN to my parent's cabin. We picked up my sister Amanda at the Atlanta airport on the way, and then met Chris's sister Shannon and her family up there. We did a waterfall hike, and Chris, Shannon, Mark and the boys did a bike ride through Cades Cove. I hope they enjoyed the break as much as we did. After Chris's sister and her family went back home, my parent's drove up for the Easter weekend. They picked up my brother along the way. I didn't think Sam would ever recover from a full week of seeing his cousins and being spoiled by family. I'm finally getting to that point in the pregnancy where I would rather sit than do anything else, so I hope I didn't ruin anyone else's time...but it was nice to have a full week in the mountains to just hang out with family.

Speaking of the pregnancy, me and baby are doing fine. I have had 2 nights of braxton-hix contractions, but I'm pretty sure it's because I can't lay off the sweet tea and caffeine. We had our 35 week ultrasound today. Everything went great! Lil' baby had his face hidden, so we didn't get to sneak a peak. But he is measuring a little a head of schedule, and weighing in a 5lbs 12 oz. We should finish the last little touch on the room Sam and brother will share this weekend. Now comes the list of last minute details: pack the hospital bag, bring down the bassinet, buy the last little bit of essentials including little tiny diapers. I'm ready. I'm done wondering how this will all go down....I'm ready to just get started!

Kathy

Happenings

2011-04-06T22:20:00.000-04:00

A glimpse into 24 hours of life with Sam...

We had a big thunderstorm the other night. Sam (who has rejected his white noise CD ever since we accidentally forgot to hit 'repeat' a few times, causing a very scary heart beat track to turn on and scare the crap out of him) freaked out with the first big thunder boom that came at about 1am. By the time I got to the top of the stairs, he had his glow worm in one hand and his blanket in the other and was getting out of bed to get the hell out of his room. He has not slept in our room since he was 4 months old, and he has not slept in our bed since before his surgery at 3 months. But what other option did I have?

I laid him down between Chris and I, and covered him up. He was really peaceful for about 5 min, and I even saw his eyes close a few times. But, once he realized he was in Mommy and Daddy's bed, he started to play with the covers and ask for the phone (as I'm so sure Nana or Yaya would have wanted a call at 1am). An hour later, once the thunder had calmed down, I told him "Alright, back to your car bed"...he protested and then pretended to close his eyes. Too little too late buddy. Naturally he had no problem going back to sleep, but getting up the next morning was rough.

For one, he didn't want to get up. Then he didn't want to get dressed. Then he definently didn't want to get in the car without getting to watch an episode of his beloved Yo Gabba Gabba. I coaxed him into the car with a 'cookie'....a breakfast cereal bar. He broke the bar in half by accident, and had a total melt down, asking me to 'fix it fix it'. It was tragic.

Feeling bad about the broken cookie and rough morning, I took him to get some fries (his fav) at a new Burger King near our house. Daddy was out playing Ultimate Frizbee with his buddies, so it was a Momma and Sam date night. There is a huge play house in this BK...Sam's eyes lit up immediately. Unfortunately, the makers of this play house failed to realize children younger than 8 might want to play too. He wasn't able to get up into the tunnels because the stair case was GIANT....well, the first two steps werent, but after that they quadrupled in height. When I realized he would never make it up into the thing, I had to go in and up the first two steps and pull him, kicking and screaming, out of the play place. I (with my 7 month preggo belly) had to haul him in one arm and our food in the other out to the car, with him pitching a royal fit the whole way.

Once again, feeling bad, I brought him to an out door play place at a church that is right across the street from our neighborhood. You have to hike up a huge hill to get there, and hills really make Sam out of breath (me too, really). He got half way up before I had to, yet again, haul him and our food (with my 7 month preggo belly) up the rest of the way. The playground was wet and dirty from the bad rain the night before, and it didn't take long for Sam's pant butt to be covered in brown wetness. When another little girl and her mom came, I right away told them Sam had cleaned the slides for them - I didn't want them to think he had pooed! Not 2 minutes later, Sam made a very obvious poo (not audible or smellable...he spent about 3 minutes crouched in a corner grunting)! Not wanting to break his heart and pull him away from yet another play place, I let him play for a few more minutes and then we made our exit.

I changed his diaper as soon as I got him home, and set him up on the couch in front of the TV (I know, I'm a terrible Mom) so that I could clean the kitchen. About 5 min later, Sam started crying out for Mommy with a very sad little voice. I walked out to the couch, and he was holding up his hands to me. Both were covered in a peanut butter like substance. Suddenly realizing what it was, I looked at where he was sitting. Somehow he had pooed (again) and it had come completely out of his diaper (which had become bunched to one side when I put him up on the couch). Sigh. Spent the rest of my time cleaning poo off of Sam and the couch.

Lessons learned thanks to Sam: 1. It takes effort to teach your kids how to sleep in bed with you, and I'm too lazy to try it again - ever. 2. Cookies may carry deep emotional meaning to a child, and you should not lie about what is or is not a cookie. 3. Stick with playgrounds you KNOW are YOUR kid friendly. 4. Poo happens.

Glenn-iversary

2011-03-30T21:40:00.000-04:00

Today is Sam's second Glenn-iversary. Two years ago, after a sudden medical crash where he nearly died, Sam went through a successful Bidirectional Glenn surgery at CHOA-Egleston in Atlanta. It was at the same time some of the worst and best moments of our lives together as a family. We went from rock bottom to new life. Sam has started pointing to his scar recently. He doesn't get it at all. He looks at it like he looks at his belly button or his toes...it's just a body part. But some day I hope he will look at it and feel proud and empowered by what he has gone through. I remember taking photos of Sam without his shirt on before his surgery (before he got really sick) because I thought I would be so sad when I looked at his little scarred chest...I wanted to remember him 'pure'. But I love his scars. They mean life and hope, and remind me what the power of prayer and love can accomplish. Love you baby Sam!

Oh Collaterals...

2011-03-18T21:43:00.000-04:00

We have seen the Cardiologist at LEAST every 3 months since Sam's first open heart surgery 2 years ago. We have been truly bless by 'good news' appointments. It was only a matter of time before something turned. We'll discuss the findings in a minute. First, let's discuss the laughable disaster that was our visit to the Cardio today...

Sam and I talked about going to the doctor all the way to the office. He was perfectly happy when we got there, and smiled at everyone. He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day. Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers. Another little boy came in. He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery). But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam. Finally the nurse called us back. At the same moment, the fire alarm went off.

We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone. We were all standing in a circle talking about how this was their second alarm in 2 weeks. One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see. Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy. We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.

Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor. He cried through his EKG, BP read, and pulse ox read. His pulse ox was 84%. I was a little disappointed, since our most recent home readings were at 90%. Remember, they want him in mid 80s, and dropping lower would mean surgery time. So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good. Anyway, Sam was a good boy for his Echo. Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.

The results were not bad, but not good. Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs). They are forming because our bodies are smart. His body knows he has low blood oxygen levels. So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen. Sounds good. But it's not. I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try. But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs. It also increases the work load on the heart, which receives a then increased return of blood from the lungs. For a little heart already working double duty, this can quickly lead to heart failure.

The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity. Both of which we have seen. I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs. We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active. But this may be a sign of the increased work load on his heart. Maybe. We don't know. The only way to know for sure is to do a heart cath.

Currently, the echo can only detect the start of the collaterals. They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo. Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread. He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done. If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal. We'll see. Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.

So it's not total devastating news, but it's just not the best news ever. We got to pretend for the last 2 years that things were 'normal'...ish. Trust me, it never leaves my mind what Sam will deal with in his life. Now I can't stop thinking about freakin' collaterals and what they might mean or do. BLAH. I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications. It makes me bitter to have to add a complication to our list.

I kept Sam home with me today (today is my one day off from work during the week, usually reserved for cleaning the house and errands). I wanted to hold him a little tighter today. We went shopping for new clothes for him, new toys for him, and got a cupcake from a fancy bakery in town for him. He enjoyed it all, and enjoyed bossing Mommy around all day, too. I tried to take a photo of him in his new clothes (and his new hair cut from yesterday), but he wasn't having anything to do with the camera today. You'll have to live off of an older photo (from about a week ago...). I love him.

Fetal Echo was CLEAR

2011-01-29T22:53:00.000-05:00

We had been scheduled for a fetal echo months ago. After you have one child with a severe congenital heart defect, your chances of having another go up. Our doctor (who I love, but is a little ditsy at times) told me to schedule the fetal at about 20-22 weeks. I knew that was early. We didn't have our first echo with Sam until 27 months along. Well turns out you can do them as early as 18 months, but they do prefer to do them a little closer to 27. The echo tech said it didn't really matter to her, she was confident in her skills, but she said she could totally see our doctor telling us the wrong time frame.

The plus to doing it this early was that the echo looked more like a high class ultrasound. Sam was so much bigger at 27 weeks, and I don't remember being able to see him move or see other body parts. But since this baby was so much smaller (we are 21-22 weeks), I could see EVERYTHING. Legs, legs, legs for days. And he was moving the ENTIRE time. He was playing with the cord in his hands, and even kicking it with his feet.

Now, we had our 20 week US last week, and I knew we had a 4 chamber heart. That doesn't rule out all the major defects, but it was already better news that we had with Sam. I went into this echo feeling pretty confident. But within the first 5 minutes I started to sweat. The tech, who had been really chatty, stopped talking. and we didn't say a word to each other...for the next 45 minutes! Oh yeah that's right....on top of not talking, she was taking A MILLION photos. Chris has been out of town, and I was alone. I was thinking I wish he was here to hear the bad news with me, but then again I was glad he wasn't here bc he would be freakin' out. Over that hour long echo, I convinced myself that whatever the news was, we would be ok. I knew it would be bad.

Then, just like that, the echo was over and the tech says "well I think the doctor will be pleased". Oh....OK.... Suddenly relieved, I sat down in a chair in the room and watched as the tech brought in the doctor and started going over the echo photos. My stomach pitted again, as they began to WHISPER about the photos. The tech pointed out a series of photos to him, where she was worried about one of the fetal circulatory holes that exist until birth in the atrial septum. He kind of brushed it off and whispered an explanation to her. Then he turned to me and said that he can rule out all major, life effecting defects with this echo. However, he went on, the echo can't pick up with any accuracy small septal defects. He never said that is what they were discussing, but he said that he feels the baby's heart looks great, and if anything exists, it is too small to need surgical correction. Curious discussion...but having been where we have been with Sam, I do trust him that the baby's heart is healthy and we won't have anything to worry about.

Sam and I have been keeping ourselves busy over the last week. Chris had to go out of town, so we have been hanging out, watchin' Yo Gabba Gabba, going out to eat, and shopping. We bought some new clothes for the baby, and have started setting up Sam's room to be a room for two. Photos to follow when we get a matress on the bed, and when Sam gets his new bed spread (Yo Gabba Gabba, of course).

~Kathy

HEALTHY

2011-01-20T20:33:00.000-05:00

We went to our 20 week US this morning with much anticipation and under much stress. The tech was amazing and went straight for the heart. The first thing we got to see was a beautiful, perfectly divided 4 chamber heart. And then got to see that sweet face and the gender...

Baby BOY #2 is perfectly healthy and growing right on track! We couldn't be happier! Thank you everyone who prayed for us!

~Kathy

20 Week Ultrasound

2011-01-19T15:06:00.000-05:00

So our 20 week ultrasound is tomorrow. I would love to say I can't wait to find out if it's a boy or a girl. But I just don't think that even matters to me. How could it? After all, if there is one good lesson I learned at Sam's 20 week US, it's that the only person going into this US wondering what the sex is is the parents.

The real reason for this US is to check for the babies health. It's to look for defects, abnormalities, and syndromes. It is your first opportunity to find out whether the rest of their life, and yours, will be everything you dreamed and hoped. How dumb it seems now, that for Sam's 20 week US we walked in only wanting to know the sex. That we had planned to go out to eat for a fancy dinner afterwards and talk about names and nursery themes. Our innocence and naivety was shattered. We are no longer ignorant to the fact that babies are not created equal or perfect.

I remember every word of that 20 week US for Sam, and the high risk doctor's US that followed the next day. I remember every word as they fell from those doctors' mouths like bricks, slowly building the wall between what our lives and personalities were, and what they were to become. I don't even remember who I was on that day when everything changed for us; I only know who I am after that day. I had no idea one US could challenge your faith, your relationships, and your dreams for the future.

We are blessed. Beyond measure. And I wouldn't take anything back just so that we wouldn't have to suffer this. But I can't do it again. Not that I have a choice. It's not like I'll drop dead and be released from the responsibility of caring for another special needs child. No matter what is found tomorrow, we will have to accept it. But I don't want to do it again. Maybe for selfish reasons. Who wants the burden of extra doctor visits, questioning your child's every odd symptom as if it's signs of something mortally serious, and facing a future that may not include that child in it? But it's not just us who suffers. Some day Sam will have some harsh realities to face. Much harsher than ours. I just can't bare to see another one of mine go through that.

I have had some whacked up dreams lately. Pregnancy does that. But mix it with stress over baby's health and you get some really crazy results. I haven't said much about the stress of all this to anyone, but it's spilling over. I'm ready to know whatever this US holds for us tomorrow. Say a prayer for health and acceptance.

~Kathy

Big Boy Bed

2011-01-17T20:56:00.000-05:00

Sam had his first night in a 'big boy bed' last night. We got this car bed used, and Sam LOVES it. He went to bed super easy and stayed in bed all night. He napped in it today without trying to get out, too. We are on night #2, and when I handed him his cup of milk around 7pm tonight he said "night night in car?" He was ready to be rid of the jail bars of the crib! Now if potty training could be just as easy...

Snapshot

2011-01-03T21:36:00.000-05:00

Snapshot of a moment I want to remember and have ready for recall forever.

Sam, Chris and I on my king size bed. Chris tickling Sam until Sam begs in a raspy voice through the laughter "Daddy, No!" Sam, struggling against the softness of the mattress to stand up. Once steady, Sam saying of few words (only we don't speak toddler-ese so we don't know what he's just proclaimed) and then tossing his head and arms up in the air and throwing his body into the piled up blankets and pillows. Sam doing this over and over again while Chris and I play bumper pads until he is blue in the face with exhaustion. Sam, laughing so hard at the whole event that he throws up his recently eaten dinner.

~Kathy

December Happenings

2010-12-29T17:05:00.000-05:00

Yet again, I have failed to report in over a month. Let's recap December.

We started off the month with Sam's 2nd birthday. We had one birthday party at my parent's cabin in Tennessee, and one at Chris's parent's house. Sam didn't really understand either event. Next year maybe...

Then, I flew to Las Vegas for one last half marathon before I get too full of baby to run. I met some friends from work, school, and from way back when. It was a great race, beautiful weather, and I added to my half marathon finisher metal collection. The only down side was that my finish time was pathetic. For the first time ever, I had to stop TWICE DURING THE RACE to wait at a portapotty...running with a baby sitting on your bladder is no fun!

We attended Sam's Kids at Heart club's Holiday party, where Sam got his yearly Santa photo. Clearly, Sam wasn't so thrilled. Santa was a trooper, and commented that THIS photo will be the one we look back on and laugh at. Sam also got to see his heart buddies Emery and Matthew, and met some new heart friends. It always shocks me how many children there are with stories similar and yet so different from Sam...and these are just a sampling of children who are seen at Sibley Heart Center in Atlanta and Georgia.

We spent the last few weeks of December shopping and wrapping gifts and attending doctors appointments. Sam had a check up for his tubes which went great. His hearing is back in the normal range, and we don't have to go back for 5 months. Sam also had a 2 year pediatrician check up. She said he looked great, and he was a trooper for his one shot. To top off Sam's MD visits, he had a check up with his cardiologist. He was a trooper for the EKG (he hates the stickers for the leads). Dr. Cardis said keep on keepin' on. Nothing new on the planning for anything - still years away from the next big decision. I told him I was pregnant and he did schedule ME for a fetal echo. Once you have a child with a MAJOR heart defect, your chances of having another are increased slightly. We will have that done in late January.

Speaking of the baby, all is going well. I had my second OB visit and got to hear the heart beat. So far I have been able to keep the weight gain at zero, although after this Christmas break I will have probably shot up in size. We scheduled our 20 week ultrasound for mid January. Chris and I aren't nearly as excited about it as we were with Sam. We found out about Sam's heart defect at his 20 week ultrasound, and we have been scarred ever since. We are praying for a happier experience this time around.

We drove down to Mobile for Christmas. We did Christmas eve and day with Chris's family, who had all come in town for the event. Sam is wishy-washy about playing with his cousins. For one, he is not used to sharing Mom and Dad's attention with other kids. Secondly, he is still at the solitary play phase, when his cousins would rather have physical contact with him at all times. These, clearly, don't mesh well. He had a great Christmas, though, and got insane amounts of toys and clothes. He is splitting the rest of his vacation times between Chris's and my family. Tonight we are going to Bellingrath Gardens, where they have a huge Christmas light display. Tomorrow is Chris's and my 4th wedding anniversary, and we are planning on going out to a super nice dinner. It has been a great holiday, and we have lots of hope and excitement for the future.

I have to end with a quick note about some heart friends. Steve Catoe, one of the oldest surviving people with Tricuspid Atresia (Sam's defect) passed away at the beginning of this month. We are so so sad with his passing, but much more happy that he lived and contributed as much as he did to the CHD community. Also, a beautiful boy named Matthew, who is from our home region in South Alabama, has been born with HLHS and other defects. He has had a whirlwind life so far, including a trip to Boston for surgery and his first bilzzard! Say a prayer for him and his amazing family! You can follow their blog (Matthew's Journey) which is listed in "Sam's Heart Friends" blog list to the right.

~Kathy

Could Life Be Anymore Busy??

2010-11-29T20:48:00.001-05:00

I think not. We have had 3 busy busy weekends. So much for posting more often. And sorry for no photos in this post...takes too much time, and I don't have any to spare these days...

Three weekends ago Chris, Sam and I flew up to Fairfax, VA and met up with Chris's sister and her family. We left Sam with Chris's Mom and the rest of the kids, and Chris, Shannon, Mark and I drove to Richmond, VA for the Richmond Marathon (Mark) and McDonalds Half Marathon (the rest of us). With the exception of a HUGE fail moment (I, Kathy Wimberly, left my entire bag of running attire in Fairfax...don't worry I bought a whole new wardrobe the night before the race to make up for the mistake, and I appologized to Chris for blaming him even though it was my responsibility), the race was glorious. Rather flat course, fair amount of distraction, and beautiful weather. Being preggo, I didn't set out to break any records, but I ended up finishing far better than I thought I would! Everyone else had personal bests, including Mark in his full marathon. We drove back to Fairfax after the race and spent the next day limping around Washington, DC. Sam enjoyed the city, until it was past nap time. Sam has truly be around this country in his short life.

The next weekend we had Chris's other sister Lydia and her bf come for a visit. We had a pre-thanksgiving dinner, complete with my first roast turkey! It was beautiful. Sam, naturally, enjoyed having people around to entertain.

This past weekend we took an extra day off work and drove up to my parent's cabin in Gatlinburg, TN. We spent most of the Thanksgiving holiday lounging on the couch. Chris and I went for a run in Smoky Mountain National Park, we had a birthday party for my Mom and a pre-party for Sam's birthday, and, of course, made more food for Thanksgiving than the 7 of us could eat. Sam had a friggin' blast hanging out with Nana. I'm pretty sure he wouldn't have batted an eye if Chris and I drove away and left him for the week. He didn't so much enjoy my brother, John, who spent most of the weekend trying to annoy Sam. Anytime Sam would see him or get near him, he would start making little whiny noises and flicking his hand at John telling him to go away.

We were all back at work and school today, which was sad. But no fear...the busy times never end. Sam's 2nd birthday is Friday. We are taking the day off and heading to Mobile for a party with family. Then, Saturday I will be flying out to Las Vegas for the Rock n Roll Half Marathon with several local PT/OT buds, a PT school classmate, and an undergrad friend. Not to mention Sam's cardiologist appt, pediatrician appt, ENT appt, and my OB appt! Guess I should probably get some sleep!

~Kathy

Shutterfly is Awesome

2010-11-29T20:31:00.000-05:00

So I love a deal. I have recently become a master coupon-er. My friend just posted about a deal Shutterfly has to get free holiday cards. 50 free cards, to be exact. All you have to do is be a blogger! Ok, a few other things, but it's totally worth it. I have used Shutterfly for all of my photo cards in the last year, as well as all of our family photos. I have never been disappointed with the photo color, which is something that was always lacking at our local pharmacy photo centers. These are probably the three groups of cards I search for and print the most of:
Christmas photo cards: http://www.shutterfly.com/cards-stationery/christmas-photo-cards
Holiday cards: http://www.shutterfly.com/cards-stationery/holiday-cards
Thank you cards: http://www.shutterfly.com/cards-stationery/thank-you-cards
They have a great selection, clearly. Now, if you are a blogger, go RIGHT NOW and check out the link below for how to get your own 50 free holiday photo cards! Totally worth the effort!
http://blog.shutterfly.com/5358/holiday2010-blog-submission-form/

~Kathy

Strong Legs Run Results and Sam's BIG Announcement

2010-11-07T21:12:00.000-05:00

WOW it has been a month since I have posted! Many, many fun days have come and gone since then. Here is the brief recap of happenings and news, then the longer update will follow:

1. We took a trip to Florida to hang out with good friends and party on the Florida campus for the LSU vs FL game.

2. Sam had successful 'tubes' surgery and hasn't had any ear problems (knock on wood) in weeks.

3. Boo at the Zoo was wonderful.

4. Halloween was a busy day, with a 5K, birthday party, and Sam's first Trick or Treat adventure.

5. We raised over 3000 dollars for Sibley Heart Center for the Strong Legs Run thanks to good friends, faithful family, and wonderful coworkers.

6. The Strong Legs Run was a big success, and Sam had a glorious time being the center of attention of both my family and Chris's family this weekend.

7. WE'RE PREGNANT!!

Ok, so we'll start back at number 1. Back at the beginning of October we took a trip down to Florida to meet up with one of my best college friends and her wonderful boyfriend. They are getting their PhDs at Florida, and it was a good opportunity to visit and tailgate on Florida's campus for an LSU game! Sam had a great time hanging out with all of their dogs, meeting horses for the first time, biking around campus, and getting lots of attention from new people. LSU won...a bonus.

2. Sam had his tubes put in a few weeks ago. There was a slight hiccup, as the anesthesiologist failed to notice the note on our preop paperwork about a family history of an anesthesia allergy. They had to give him an IV instead of gas, and we had to stay in recovery longer. BUT he came through fine, and has really been sleeping better and talking more. We had a very 'David Goes to the Dentist' moment after they gave Sam his loopy meds to calm him before they took him back. The video is priceless.

3. The Kids at Heart group had their Boo at the Zoo event again this year. Sam was a little more interested in the animals this year, and he figured out the Trick or Treat thing (though he never actually said Trick or Treat). It was good practice for Halloween.

4. Halloween was nutty. We did a 5K early in the morning, attended our neighbor's kids 1st birthday party, and then took Sam for his first Trick or Treat. Chris pushed Sam in the stroller for the 5K and he did pretty well. Sam loved the party. Our neighbor made some super cute cardboard box houses for the kids to play in, and they had great finger food that was perfect for little Sam hands. With all of that stimulation, Sam was a little done by Trick or Treat time. He wasn't a huge fan of going up to people's houses. He did, however, LOVE hanging out at our house and watching the kids come to the door!

5. We have been raising money for Sibley Heart Center for the Strong Legs Run with our own team, called Sam's Lub Dub Club. We were OUTRAGEOUSLY successful. We had a ton of friends and family donate, and had some of our team members raise literally hundreds on their own for the team. Chris's cousin, Josh, who has battled and beat cancer TWICE raised almost 400 dollars alone! Then, my co-workers decided to help us raise money by having several in-office events, including a silent auction. They raised 600 dollars through those events, and then the company gave us an additional 250! Just amazing. We raised over 3000 dollars! For everyone who donated, thank you for supporting this cause. It means more to us than I could put into words.

6. Chris's parents and my parents came up this weekend to participate in the Strong Legs Run with. Needless to say, Sam LOVED the attention. The run itself was wonderful, although quite cold. Chris and I ran in the 10K. Chris had a PR, and I did pretty good, considering the circumstances (see 7). Our parents and Sam walked the 5K. Chris's cousin Josh and his wife also participated in the 5K. Josh, who has half a lung due to his last bout with cancer, ran his first 5K and had a PR, too! Josh's determination to train and participate and lead a healthy life have inspired us, and will certainly inspire Sam when he looks back on this weekend. Josh, with half a lung, and Sam, with half a heart, are real miracles.

7. WE'RE PREGNANT!! We are 9 weeks along and are due June 10. We told our parents when they arrived for this weekend's events. I had a tshirt made that said 'Big Bro'. When Chris's parents, who we told first, took off Sam's jacket, it took them a min or two to see the shirt. The same moment they were realizing what the shirt said and what it meant, Sam swung the computer chair around and hit himself in the head. He immediately started crying and then coughing, and then puked ALLLL over his shirt! We had to rush it into the washer and dryer to get it pretty again to reveal it to my parents! We had just enough time to put the shirt back on Sam when my parents got there. It took them longer to see the shirt and realize what it meant. I practically had to read the shirt to them. Of course, everyone is thrilled. Sam doesn't have a clue, and it's probably better that he just live out his last days of only-child-ness without knowing what the future holds! Please say a prayer of health for this baby! So far so good!

Wow what an update! We have some big weekends ahead of us, including a half marathon in Virginia next weekend! I'll try to update a little more frequently!

~Kathy

Strong Legs Run to Benefit Sibley Heart Center

2010-10-06T07:12:00.001-04:00

Yes, it is that time of year again! Children's Healthcare of Atlanta is teaming up with CVS to hold their 26th annual Strong Legs Run (the full name of the race is Strong Legs Run That Weak Legs May Walk). Last year we participated, along with my parents and Chris's parents, and it was truly a lot of fun.

Just like last year, we are participating both in the races and in the fundraising. All of the money we collect will be designated for the Sibley Heart Center Cardiology group, who are Sam's surgeons and physicians. Last year, as a family, we raised over 500$. I would love to raise more this year, and get more people participating!

Race day this year is November 6 (Saturday) at Turner Field in Atlanta. There will be a 10K, 5K, one mile fun run, and 100 yard dash. The 100 yard dash is just for kids 12 and under, and they race against a whole mess of local business mascots. If you enter any race, you receive a t-shirt, and kids who do the dash get a shirt AND a finisher ribbon! This year they have more planned for the spectators, including a moon walk. Please check out the main page of CHOA to see the details (http://www.choa.org/default.aspx?id=2061)

To raise money for Sibley this year, we have started our own team! The team, in honor of Sam, is called Sam's Lub Dub Club! There are a few ways you can help us raise money:

1. To make a one time donation, go to our team page and donate under one of the team members, or under the "General Team Donation" tab! (Team Page)

2. Join our team! If you can join us in Atlanta to run, that would be great! Register from the main CVS/Strong Legs Run page and select 'Join Existing Team' and then use the drop down menu to select Sam's Lub Dub Club. After you pick your race and participant t-shirt size, you will be directed to set up your own personal fundraising page. Once again, anything extra you earn through your own fundraising campaigne, will go to The Sibley Heart Center! (Main Race Registration Page)

3. Can't run with us? Join our team anyway! You can still join the team and fundraise, even if you can't come and race with us. Under the main registration page, where you select which race you want to participate in, just select one of the two options: "Phantom Racer" if you would like an official race shirt, or "Fundraiser" if you would rather skip the shirt but still raise money.

There are benefits to joining our team! If you earn $50 (not including your race entry fee if you are going to race) by TODAY OCT 6, you get a Sibley Heart team tshirt (I know, cutting it short right?? Last year they extended this deadline but not sure about this year). As you earn over 100$, you start to earn gift certificates towards your choice of grocery stores/ restaurants/ etc (last year they also did visa cards). We are also considering making a Sam's Lub Dub Club tshirts to sell and to give to people who earn or donate 100$ or more, so be on the look out for that announcement!

Please take some time and consider a donation, or consider running with us, or fundraising with us! Clearly we think this is a great cause...The Sibley Heart Center is the reason Sam is with us today! If you have any questions, please contact me by email at kathywim (at) gmail (dot) com.

Thanks for your time!

Kathy

Stuff Stuff Stuff

2010-10-02T21:11:00.005-04:00

It always feels like I don't have anything to write for weeks and then BAM I have 100 things to say.

First, I have a prayer request (or 3). My cousin-in-law Josh's wife Kimberly's mother died this past week after just being diagnosed with Leukemia. This was very sudden and clearly they are in shock. Please say a prayer for peace for them. Also, two heart families are in the fight of their lives. Joshua has had 2 open heart surgeries last week, and remains unstable. Ewan is stuck on ECMO after his heart surgery, and can't seem to ween off. Both of these children are mere weeks old, and both families are struggling to find peace in their children's suffering. Please say a prayer for them and their families as they face a true unknown with their babies.

The Wimberly family has had an eventful weekend or two here lately. After Sam recovered from his fever and ear infection last week, we made a trip down to Mobile and then Baton Rouge for an LSU game. We took Chris's brother over with us to LSU. We met my parents and brother there. We watched my sister warm up with the band (she's in LSU's marching band), walked the campus, met up with old friends, and scored some tickets to the game! Chris and Johnathan sat together on one side of the stadium and my friend Tamara and I sat together on the other side. Chris and Johnathan had great brother bonding time, Johnathan really enjoyed seeing a college game and a college band, and Tamara and I had plenty of time to catch up on years of back logged girl talk.

Once we got back to Mobile, we got to hang out with Chris's family a bit. We also met our new niece, Penelope Anne. Sam didn't seem to interested at first, but once he saw me taking photos of her, he wanted in on the action. He gave her about 10 kisses on the head while I took photos. He was very gentle, but I know he was more interested on stealing the spotlight than being sweet to her. She's beautiful though, and I can't wait to see her grow and gain her personality (as I'm sure she got quite a personality from BOTH of her parents)!

We had an uneventful week this week, with Sam's flu shot being the biggest excitement. We decided to travel a little north yesterday to see our high school band directors new band again at their football game in McDonough. Sam had a FREAKIN' BLAST. He danced and cheered, waved at cheerleaders, and got to play the drums thanks to Johnny. We left at half time to catch some dinner before the ride home. Sam hammed it up at the restaurant, and practiced all of his animal sounds. He got quite a few compliments on how cute he was and how good he was being. He slept SOOOOO well last night!

Coming up this week: Announcements regarding the Strong Legs Run to benefit Sibley Heart Center, me and Chris starting to get serious about running (we have now signed up for a 10K and a half marathon in Nov), and a trip to Florida to visit friends and tailgate for the LSU game!

~Kathy

What?! It's Mid-September?!?

2010-09-19T21:52:00.000-04:00

Holy geez...where is time going?!?

We kicked off September with a trip to Gatlinburg, TN to my parent's new cabin. They are slowing moving in furnishings to start renting it out as a vacation home. Sam had a blast running around the big wrap around porch and being the center of attention.

Sam finished his round of antibiotics from our most recent ear infection, but I could tell he wasn't quite right. This past Friday, he woke up a little warm. I took him to day care anyway because he didn't have a true fever, and he was acting normal. I was planning on calling the pediatrician to get a new antibiotic bc I knew the first one didn't do the trick on his ears. Before I could even get a mile from his day care, and before I could pick up the phone to call the pedi, the daycare called and said Sam had thrown up. I had to cancel my patients for the day, and Sam and I took a trip straight to the pediatrician who confirmed his ears looked quite bad. We started a stronger antibiotic and Sam and I spent the rest of Friday cuddled up together.

He was feeling a little better by that night, and we decided to go ahead with a small trip to McDonough,GA to see our high school band director at his new high school's football game. Johnny was always so great to us when we were kids...he always felt like one of 'us' and made us feel like we were equals with him. Some of Chris's and my best memories were with Johnny and the band. It was so nice to see him again and watch him interact with his students. Sam enjoyed it all too, and danced in the stands to the music.

Saturday, though, the fever returned with a vengeance. Sunday (today) wasn't much better. The fever finally seemed to pass this afternoon, but the crankiness didn't. This has been by far the worst ear infection...I'm starting to wonder if we have and ear infection AND something else. Hopefully he can kick this thing quick, and make it until tubes (Oct 20) without another illness.

Today I got to talk to a sweet lady named Joy. She is from our hometown, and just recently had a beautiful baby girl who was diagnosed with an apparently quite rare congenital heart defect. It was so nice to talk to her. We had a lot of the same feelings and internal conversations regarding diagnosis, doctors, and the future. I look forward to keeping up with her and her family and helping each other through the craziness that is CHD!

~Kathy

CHOA is the Best (and other News)

2010-08-31T21:56:00.000-04:00

Sam had his ENT appointment in Atlanta today. We nearly missed the appointment because somehow we got lost...even though the office was RIGHT outside of Sam's CICU stepdown room from when he had his surgery! Of course from the second we step in the door, we remember why we love CHOA so much. EVERYONE is nice, helpful, and truly cares. Everything runs efficiently, everything is clean...it's just the best place for anyone to take their kid to if they are in need of special care.

Anyway, the doctor was super great. He looked in Sam's ears with a microscope thing (of course the nurse and I had to totally restrain him which he of course fought with all his might). He saw right away that Sam has his 8th double ear infection. He also admitted that Sam definitely does need tubes. He immediately asked us if we had every had Sam's hearing tested. Of course we hadn't since he was born. The doctor ordered a hearing test and the audiologist came right away. Sam and Chris went into a sound booth and the audiologist did her thing. In the end Sam's hearing came out below normal, and worse on the left than right. She says it's probably just because of how clogged up his ears are, and we would retest after tubes were placed.

The doctor (who is the only ENT who does surgery with the cardiac anesthesiology unit at Egleston) looked at his surgery schedule to find us a date. He is clearly a busy guy. Not only is he the only ENT who does surgery at Egleston, he is also the only guy who does cochlear implants in Atlanta. SOOOOO his first open appointment for surgery was OCTOBER 20!! UGHSLKSHDFLHUGH! He did graciously tell us that if anything came open before that date he would put us in.

Poor little Sam, though. I knew he was getting an ear infection. Aside from our puke/diarrhea night, he has spent the last few nights crying every 30 min. I've been giving him Motrin every 6 hours or so for the last day, and he still had a 99 fever at the ENT today. He was a good boy the whole time (aside from battling me and the nurse). He didn't like the ENT too much after the microscope incident. As we were leaving, Sam, Chris, the ENT, and I were walking to the front door. Sam, who was walking with us, wouldn't take his eyes off the ENT...didn't trust him I suppose. Anyway, poor suspicious Sam walked right into a wall and dropped to the floor. Chris and I were laughing so hard, the ENT ended up picking him up off the floor. Poor kid.

So to recap: CHOA is amazing, Sam needs tubes (Oct 20), Sam walked into a wall.

~Kathy

Boooooo to Thieves

2010-08-30T21:02:00.000-04:00

So last night, our car got broken into. It was parked in our driveway right next to the house. Unfortunately, we left it unlocked. Naturally someone would be checking for unlocked cars on the ONE NIGHT we leave the car in the driveway AND unlocked. My husband had his Zune and Garmin GPS stolen. The person didn't take my purse, or some of Chris's work tools. Makes us think it was probably a teen. I wrote an email to everyone on our neighborhood directory and got back quite a few responses from other people who had stuff taken out of their cars last night, too. That really just ruins your sense of safety and confidence in your neighborhood. And we live in a good neighborhood, too. Sigh.

Of course, we probably came pretty close to catching the jerk. Last night, we were up every 30 min with Sam. He had a good tummy bug (diarrhea and puke). He was pretty dehydrated today but was fine. We stayed home together and vegged out. He did help me do something productive: finish shopping for all of our nieces' and nephews' Christmas gifts!

On deck for tomorrow: Sam's big ENT appointment with the only ENT in Georgia who will perform any ENT based surgery on children with congenital heart defects with Egelston Hospital's Cardiac Anesthesiology team!

~Kathy

Successful Cardio Appointment

2010-08-24T20:58:00.000-04:00

Sam had his regular 3 month cardiology appointment. In case you have forgotten our history, Sam is a major doctor-phobe. You could tell they were prepared for a fighting match. The intake nurses closed the door behind us when we got into the EKG room, and talked over a game plan. But Sam was surprisingly docile. He still isnt a big fan of the stickers for the EKG, but he let them get all the readings they needed. Pulse oxygen was at 83%, BP at 100, weight was 30lbs and heights was 36 inches (that's three feet tall people!).

Sam even made friends with Dr. Cardis and his intern and kindly let them listen to his heart with little fuss. Dr. Cardis ordered an echo which was unexpected on our part, but apparently it was time. I totally thought Sam would nut up but he was near perfect for the echo nurse. Dr. Cardis read the echo and said Sam looks great and very stable. So stable that he wants to cut Sam back to once every 6 month visits after his second birthday. YIKES...that feels like FOREVER between visits!

Let me take a moment and explain why Sam will be holding off on the Fontan as long as possible. For one, his anatomy will allow us to do so. Unlike many hypoplastic right hearts, Sam DOES have a pulmonary artery (even though it is small). This assists in a small way with getting 'blue' blood from his lower body to his lungs (his anatomy is quite complex now...I'll save the drawings for another post). But Dr. Cardis explained that in kids who don't have at least a minimally functioning pulmonary artery, the risk of developing small collateral vessels in the lungs rises, which leads to decreasing pulse ox rates and heart failure. This puts the kids in for the Fontan earlier than with kids who have a pulmonary artery.

After the Fontan, the count down clock to transplant starts. On top of that, there are consequences for other body organ systems due to the Fontan circulation. If we can hold all of this off, we will. Dr. Cardis told us we will go for the Fontan under 3 circumstance: 1)Sam goes into heart failure 2)Sam is unable to participate in regular daily activities due to poor oxygen levels 3)If we feel like we want Sam to participate in more advanced activities (like sports) in a greater capacity than he is currently able. Well trust me, as much as I want Sam to experience sports, we will NOT be putting his life at risk just to do it. Soooo, considering only circumstance 1) and 2) will lead us to surgery, Dr. Cardis thinks Sam could go YEARS before needing the Fontan...maybe up to age 10 or more. He has told us this before, but he gave a great "Sam's Anatomy" review and I understand more clearly how we will accomplish this.

All in all, a GREAT cardio visit.

Yesterday, a fellow heart mommy hosted a 'blog event' to help heart families link to each other. Everyone was to share their "Heart Story" and post a link on her blog. Our story is posted on Sam's Half a Heart page, and you can visit her web page (link below) to check out other families stories.

~Kathy

First Haircut and Other Goings-on

2010-08-22T20:49:00.000-04:00

Sam took a 2 hour nap today. When he woke up, his hair was INSANE. It was frizzy, knotted, standing up on end. It was clearly long past time for a haircut. We took him up to a little place right across the street from our neighborhood. I totally thought he would freak out the whole time, but he did SOOOOO good! And the lady was super good with him. All his silky baby hair is gone...he has big boy hair now. So sad. But he looks super cute. I'm going to get him some gel so we can spike his hair up.

Two other things I would like to briefly bring your attention to:

1. Head over to our other page (Half a Heart Full of Life) and read the most recent post. I have a prayer request for a beautiful heart baby on the other side of the world.

2. The Strong Legs Run is coming up in November. This is a fundraiser for Children's Healthcare of Atlanta's Sibley Heart Center (the group who saved Sam's life, and the group who will some day perform more surgery on him). This is a 10K, 5K, 1 mile fun run, and kids 100 yard dash with a lot of other fun events scattered in between. It takes place at the Atlanta Brave's baseball stadium. This year we are going to make a separate team just for Sam (looking for team name ideas if you have any). I will post the information as soon as I can. We may be making team t-shirts to sell as part of the fundraising. If you want to run/ walk with us, or just want to help us raise money for this amazing cause, keep your eyes open for updates soon!

~Kathy

Our Week Without Sam

2010-08-08T22:32:00.000-04:00

We took our first trip to Mobile in FOREVER two weeks ago. We drive down for a few reasons: to attend a baby shower for Chris's brother and his wife, to spend the weekend at a resort on Mobile Bay with Chris's family, and to leave Sam in Mobile for a week for his own personal vacation.

We had a super sweet baby shower for my brother-in-law and his wife who are expecting a baby girl. It was a big Wimberly Family Event, meaning most of Mobile was there. I brought Sam, since most of the people who were there were at my baby shower and haven't seen me or Sam since. We had a great time, and Sam was pretty good. He's still pretty shy. I've resigned to Sam's low oxygen being the cause of his anxiety with strangers and new places. We know anxiety is a common occurrence with heart kids, but I just assumed this was part of a normal kid's development. But he just gets so upset with changes in environment and people that I have to give it another cause. ANYWAY, it was a great shower...Bradley got some wonderful things, and I can't wait to see that baby's sweet face!

We also spent the weekend at the Grand Hotel in Point Clear, Alabama right on Mobile Bay. There was no oil to be seen, the weather was great, the food was amazing, the pool was really fun...we had a great time. Chris's two older sisters and their children were there, along with his parents and younger brother. Sam got to hang out with his cousin who is just a few months older. They are still in the solitary play phase, but had some pretty good interactions.

Chris and I left to home to Macon, but lil Sam stayed in Mobile with my family. He spent the week between my parent's house and Chris's parents house. I feel fairly certain he didn't think about us much. He had a great time...he went to the Explorium, went shopping with my mom and sister, hung out in the Wimberly's back yard with all 6 of his cousins. Chris and I, on the other hand, got all kinds of things done. We turned our attic into a new guest room/ office, went out for a fancy dinner and movie date, went shopping in Atlanta, and I attended a continuing education class. I missed Sam, but I didn't have a hard time leaving him in Mobile because I knew he would be well cared for and would probably have much more fun there than here!

Since Sam has been back, he's been a pretty good boy. He moved up to the next level class at school (older toddler room). He went shopping with me for some new clothes...he's super tall, and has hit 30 lbs! He has been talking in 'full sentences' for a while. NOT that you could understand ANY of it...he just babbles to you like you're supposed to know what he's talking about. But recently, I have actually started to understand some of it. Today, he asked Chris "What are you doing". He told my mom (over the phone), when asked where Relo was, that "he's outside". Let's be clear...it is very difficult to understand what he's saying...but I assure you, he is truly saying these things. He's so smart. I love him.

~Kathy

Things Sam Does

2010-07-22T22:31:00.000-04:00

Sam is growing everyday. He's getting taller, getting a sense of humor, and getting vocal. He has finally picked up a few more words other than Dada, Momma, and Bye Bye. He now also regularly says Stinky, Dog, Ball, Door, Shoe, Sock, Eye, Nice, Hey, Hi, Ruff Ruff, Car, and PooPoo. He can say a handful of names: Nana, Pop Pop (which he says in a whisper thanks to a funny incident on our camping trip with my family), YaYa (which he says when he sees the house phone), Pop, and Aunt Amanda (which comes out as a three syllable word similar to 'annannda'. He has also said a hand full of two word phrases. He can say 'Bye Bye Daddy (or Momma)' and 'Daddy, where are you' (which really sounds like "daddy, ahh ooo").

He especially loves all things Dog and all things Car. I had made a diaper cake for a co-worker, and there was a dog stuffed animal on top. I was carrying him out to the car and we passed by the cake on my counter. Sam took one glance and said "Ruff Ruff". As if I didn't think that was genius enough, we were merging onto the interstate yesterday and Sam said "Ruff Ruff Car". I thought he was just running through his favorite words, but then I realized the truck just in front and to the left of us had a dog in the back. SOOOO smart, right?? He really does amaze me, considering we went from nothing to a whole bunch of words in just a few weeks.

His walking is getting much better, although he still falls and trips frequently...more so than I think is normal but then again I don't have anything to compare him too. They daycare thinks he is doing great, and is already moving him up to the older toddler room. Even though he isn't as good of a walker as the other kids, the administrator said that he is really good during structured activities in his current room (unlike some of the other kids), and she thinks he would learn more in the next room up because it is more structured. I kind of hate it though...we JUST moved up from the baby room a month ago! As long as they don't come to me and say they are moving him on up to Kindergarten in a month, I guess we'll survive.

~Kathy

On Grief and Joy

2010-07-06T23:32:00.000-04:00

First, a Wimberly family update: Sam is becoming quite the walker...and door opener...and cabinet inspector. Chris and I are about to renovate and finish one of our larger attic spaces to make a playroom/office/whatever room. Our 4th of July was wonderful: bike ride, church (with a successful trial run with Sam in the child care room), great couponing grocery store visit, Sam played with our neighbors kids in the sprinkler, watched fireworks care of Arden Park Daddies, lovely steak dinner. All is well in Wimberly land!

But my thoughts have been other places these last few days. A beautiful heart baby, Ruthie, who we have followed for some time, has FINALLY been blessed with a new heart. On the same day, a beautiful 9 year old patient of mine passed away after 9 years of severe compounding medical complications of a genetic condition. In both cases, there is joy and grief.

For Ruthie, and her faithful parents, being on the transplant list since February has been a true test. They have truly been an example of how to give your worries over to God and trust in the notion that there is a greater plan out there for all of us. I have said it before, and must say it again: seeing these heart children survive waiting on the transplant list, and then successfully receive and thrive with a new angel heart is so relieving to me. I know Sam's fate will one day hinge on the results of the same journey. I marvel in these children and families who go from rock bottom to a birth into a new life. But to get there, to achieve new life, there must be death. Another family has to go from life to rock bottom. A mother and father, sisters and brothers, grandparents and family...all must say goodbye to a life that has hardly begun in order for another child to go on. Death creates life in a literal sense. It is beautiful and horrifying. It is a hard pill to swallow sometimes...that one day we may be praying for the death of another to bring life to Sam via the selfless generosity of a grieving family. That someone else's grief might bring us ultimate joy...it is a concept I doubt I will ever be able to fully grasp.

I had another encounter with grief and joy this week. I have been working as a pediatric physical therapist for 5 months now. In my first few weeks, I met a beautiful little girl with an extremely complicated medical past. Though her body and brain had been ravaged by years of suffering the symptoms of her condition, two things shined through: her perfect innocence, and her families unwavering faith. I felt at once completely overwhelmed by her impairments and yet completely compelled to do everything I could to help this child and this family. I researched what I could, spoke with other professionals, tried to find new medical equipment to ease the burden of caregiving. Just when I started to feel like a plan was coming together, she got sick. Within a week she was REALLY sick. Her years of suffering had finally broken her body. Her family was quick to point out, though, that this was a moment for joy. Her suffering would soon be over, and she would be dancing with the angels in heaven in a way she had never been able to dance on this earth. At the same time, I can't imagine the depth of this families grief, as the daughter they have literally built their lives around slips away. Their most recent CaringBridge post was two sentences long. It described the scene of this beautiful creature's passing from this earth to the next, as she and her sister fell asleep together wrapped in each others arms.

A few posts ago, her mother shared the thoughts of another mother who had also had to watch her daughter fade away. She said,"Grief and joy danced together as if they had a right to." I have contemplated that idea deeply over the last few days. I have decided that rarely do grief and joy NOT appear together, although it is often hard to see one or the other at the time. Grief and joy shape the most pivotal moments of our lives, and in times of extreme grief, we must find the joy in order to make sense of the pain and to move forward.

I would like to share one more story. Krisanna, the inspiration for my career, and her family are another example of allowing joy to wash away the grief. Though she had been diagnosed with a cancer that would almost certainly one day take her life, she continued to spread the most bright yellow attitude of hope and gratefulness. Her parents were the same way. Even now, almost a year since her passing, her mother writes often of the 'coincidences' throughout her day that remind her of her daughter's bright shining life. When reading the last few passages of Krisanna's life on her CaringBridge, there is very little grief. Don't get me wrong, the loss of their daughter was absolutely devastating. But even in this worst of the worst moments, her family chose to share every drop of joy they could find, which has left a true legacy of 'yellow' - Krisanna's self chosen color to describe happiness. One particular passage I reflect on often was a story Krisanna's mom shared from one of Krisanna's final days. She was beginning to sleep often and have difficulties telling the difference between reality, memories, and dreams. She had begun to tell her mother she was seeing angels. That alone gives me chills. Her mother goes on to write that Krisanna told her the angels wanted her to choose between two beautiful things. Krisanna never described what exactly the angels were offering her, but her mother believes they were trying to coax Krisanna away from her ailing body to her rightful place in heaven.

I'm so glad her mother shared that story. I don't know what exactly Krisanna was seeing, but I whole heartedly believe what she was seeing was real. It solidifies the sense that, in the darkest hour, there is something greater awaiting us. That in our greatest of grief, there awaits joy. I can see Krisanna playing in a beautiful yellow dress, perhaps the beautiful 'thing' offered to her by the angels. I can see a whole, able bodied little girl, my patient, skipping and smiling and doing the things she never experienced here on this earth. I see Ruthie's new guardian angel, birthed into a new life of his/her own in heaven, smiling down on the brave and generous family members who allowed his/her life to grant life to others. All three of these angels lived a heartbreakingly short life. But short does not have to equal sad. All three have touched the lives of many many others in a way that I feel I, in my 27 years have come no where close to doing. If I have learned one thing from these three stories (and trust me, I have learned MUCH more), it is to find the joy in the grief, and to allow the two to dance together without shame when the music is just right.

~Kathy

Vacation

2010-07-01T21:04:00.000-04:00

After Sam's disappointing ENT experience two weeks ago, we recharged on a family vacation!

We drove up to Stone Mountain Park in Atlanta for the first leg of the journey. My parents and sister met us there. Stone Mountain isn't exactly our idea of a great camping vacation, but we went there for a purpose. Chris and I signed up for the Muddy Buddy race months ago. This is a bike/run adventure race that benefits the Challenged Athlete Foundation, which provides special equipment and prosthetics to disabled athletes. The race is a team event with trail biking, trail running, obstacle climbing, and mud pit crawling. It was a lot of fun (even though it was 140 degrees outside).

After the race, we drove up to Great Smoky Mountains National Park. We camped in the park for 5 days. It was much better weather in the higher elevation. We did some beautiful hikes, played in the rivers, and tagged along as my parents bought their 'dream' retirement home in Gatlinburg, TN! Sam had a FANTASTIC time being TOTALLY spoiled by my parents and sister. He enjoyed camping, too, and got to spend every night on a queen sized bed all to himself in my parents pop-up tent trailer.

Even better, Sam learned to WALK! He finally caught the hang of it while we were shopping in a great outdoor sports shop that had a super cute crawl space decorated like a bear's den in their kids clothing department. I guess he got excited and curious enough to just go for it! Since then, he's practically mastered walking. AND he wants to walk EVERYWHERE. We could not be more proud or happy!

Unfortunately, he did recently master something else: the fine art of temper tantrums. He now REGULARLY throws himself down on the ground, kicks his arms, throws his legs, bangs his head, and screams at the top of his lungs. Usually, he does this for NO APPARENT REASON but to try it out. Ugh. We are doing out best to ignore it, but if anyone has any other suggestions, I'm willing to listen!

~Kathy

Soooo upset...

2010-06-16T20:14:00.000-04:00

Well, Sam was supposed to have tubes tomorrow. We went for pre-op today, and his anesthesiologist chickened out of the surgery bc she was scared of Sam's heart defect.

I got Sam to the ENT center for Pre-op at 1. We waited for 45 min. During that time, Sam and I had an experience I'm sure most mommas have at some point. He made a big poo diaper...and momma had no fresh diaper on hand. I improvised...cleaned up Sam and his diaper as much as I could and reused it. Totally gross, I know, but he couldn't sit it a totally dirty diaper!

After 45 min they brought us back and spent all of 5 minutes asking us basic questions. I made sure the doctor knew I was worried Sam was coming down with another ear infection. Sam has gotten a runny nose, and then this morning woke up with a croupy cough. He assured me they could still do the surgery with an ear infection. BUT he didn't even look in his ears. Oh well, I thought, move on.

After we finished there we went straight to the Medical Center's Surgery Center. Sam couldn't have the procedure at the ENT center bc of his heart. They just wanted him in a more acute care location incase he needed it. We waited in the Surgery Center for an hour. For the most part Sam was good. He did gag on a french fry and throw up all over himself, myself, and the floor. So if you're keeping track, we are on our 3rd hour of doctors offices, we have a had a big poo, and a nice juicy puke.

We finally got called back and once again, the whole process lasted about 5 min. They just asked us basic questions. The nurse was super nice, and wanted to know all about Sam's heart, and I totally indulged her. Sam, stressed out from the long waits and yet another small doctors exam room, fell asleep in my arms while the nurse and I talked...he hasn't fallen asleep in my arms since he was an infant.

Just before we were finished, I asked when we would get to talk to the anesthesiologist. I only asked because when our CARDIOLOGIST CLEARED US FOR SURGERY (an important part of this story), he told us to be sure the anesthesiologist was clear on Sam's condition. The nurse called and brought the head of anesthesiology to talk to us.

RIGHT AWAY, the anesthesi looked totally freaked out when she read Sam's diagnosis. She immediately started back pedaling, saying that we couldn't do the tubes procedure at the Medial center. She was saying that if something went wrong with Sam and anesthesia, the Med didn't have the know how to save him due to his complex heart. She said the best thing to do is cancel surgery and start this whole process again with a doctor at Egleston in Atlanta.

I was BAFFLED. 1) The pediatrician cleared him for this 2) The cardiologist cleared him for this 3) the ENT cleared him for this 4) we KNOW heart kids who have had tubes done at the Med. WTF!!!

Trust me, if the HEAD of anesthesi was too nervous to touch Sam, then I don't want Sam anywhere NEAR the Med. BUT I so upset we aren't doing this surgery tomorrow. He's suffered enough with these ears. On top of that, I feel like the ears are the key to him walking and talking better. From our checkbook and calendar's perspective, Chris and I have taken off MULTIPLE days to get Sam to this point with the ENT, not to mention multiple co-pays. Now we are starting all over.

The Anesthesiologist told us we need to do this surgery at Egleston, where they have a cardiac anesthesiology team. That's all fine and dandy, but that requires more days off from work and more co-pays and MORE TIME for Sam to continue to suffer with ear infections, poor speech, and poor walking. I'm so so sick of the medical center. After our bad experience the night he almost died and now this, I have pretty much decided we need to just move to Atlanta and buy a house across the street from Egleston.

In a way, that is a joke. But in a way, it's not. In reality, we are now an hour or more away from the only hospital who can help Sam with ANYTHING, not just his heart. Think about what that means for the future. Chris and I will never be able to just move anywhere we want...we will have to stay near a pediatric cardiac center. Sam will never just be able to move anywhere. We're already limited in our travels due to altitude concerns. I don't want Sam to be held down by this stupid heart thing but everywhere we turn, we hit walls.

So the next step is to get an ENT at Egleston and start this whole process all over again. Even that will be an act of congress, because our ENT in Macon didn't know anyone at Egleston to refer us to. To add insult to injury, we had to pay over 600$ today in 'downpayment' for Sam's tubes. After they officially cancelled the procedure, we were told they couldn't cancel the payment...that we would have to wait for 24 hours until we could put in a request for a refund.

And after all of this, we are still left with a little boy who is probably coming down with an ear infection. I got in appointment with the pediatrician tomorrow. Naturally he would get sick right before we leave town...

The two highlights of the day: Sam falling asleep on my shoulder, and my amazingly good couponing week at publix (spent $40, saved $95).

~Kathy

Tuuuuuuuuubes

2010-05-13T16:22:00.000-04:00

Poor Sam. He had an ENT appointment today. Since January, he has had 4 double ear infections and busted his right ear drum once. Clearly we have a problem here. Chris has hearing loss due to chronic ear infections, and my brother John had to have tubes. I figured this is where we were headed.

Other than the pediatrician and cardiologist, we haven't been to any other doctors. The ENT office was interesting. It was one of those offices where you just keep getting moved into progressively smaller waiting rooms over the course of two hours before you get to see a doctor. Sam was an ANGEL during all the waiting. I was so proud of him. Then when they FINALLY called us back to start checking out his ears, it just went down hill.

The nurse (who looked 16) told me they had just been delivered some new equpiment, and had just been trained on it, and to please 'bare with' her while she figured it out on my son. YEAH RIGHT. She started trying to stick this audiology device in Sam's ear and just COULD NOT get it right. After 5 min of Sam screaming his head off while I held him down just for this chick to NOT figure out how to use the equipment, I told her this wasn't going to work. She left to get some back up help. When she came back she said the Dr told her just to use the old equipment. Unfortunately that still required ear sticking and me restraining Sam.

After 5 min of fighting with everything he had, Sam was drenched in sweat and purple. When we were directed back into the small waiting room, every eye was on us. Including about 20 pairs of completely freaked out little children's eyes who had clearly heard every noise Sam was making in the room. I took Sam into the hall way so he could cry it out in privacy.

They called us back to another small room to wait for the Dr. Just going into a small exam room set Sam off again. The Dr came in with Sam already screaming, so he just got right to checking out his ears. After getting Sam settled down with a nice sucker, the Dr told me Sam's ears are full of old fluid that just isn't draining. He suggested tubes, and soon. FINE with me! I'm so tired of him hurting through ear infection after ear infection. The Dr also said he doubts Sam is hearing very well, and agreed with me that this could be adding to the reason why Sam hasn't started walking. I told the Dr we aren't gun-shy about this surgery...we've been through much worse. Sam won't even need an IV...they just knock him out with laughing gas and then the whole procedure lasts 5 min. Sounds like a plan to me!

We have to get some things squared away though. For one, Sam has to get a fresh Echo. That will be the first thing on the list to do tomorrow!

~Kathy

Where to Start!

2010-04-25T21:02:00.000-04:00

It has been a busy busy few weeks! Go get you a snack and a coke and get ready for a long read...

My parents, brother and sister came up to Macon for Easter. Sam was shy at first, but he quickly realized he had a house full of people to entertain. He was more active and playful than I have ever seen him. In fact, he COULD NOT go to sleep. He just wanted to play play play. He got some great new toys from the Easter bunny, too. He got a gigantic blow up soccer field/ball pit, a push car (he rides, you push), letter blocks, and books just to name a few items. He was so good for everyone.

The day after they left, Sam made up for his good behavior by being SUPER SUPER cranky and bad. By the end of the day I realized something more was up than Sam just missing his company. We had to take him to an urgent care (since it was so late in the day). Naturally, he had a double ear infection. This makes the third double ear infection in 4 months. They put Sam on a strong antibiotic, which totally messed up his little tummy.

The next weekend one of my best friends from undergrad, Gretchen, and her bf Jeremy came up for a visit. Once again, Sam was shy but quickly realized he had new playmates and new people to shower him with attention. They brought Sam a stuffed animal Gator Mascot from their PhD school (Florida), and brought Chris and I homemade bread and wine (FANTASTIC). It was so great to hang out and catch up, and they enjoyed meeting lil Sam.

We went to a two week follow up on Sam's ears. When she checked them, they didn't look any different than before the super stong antibiotic!! UGH. She put us on ANOTHER antibiotic, and a probiotic for Sam's tummy (at my request), and she is going to send us to an ENT. She said tubes are a possibility, but that since summer is coming, they may wait until the fall. I'm all for tubes tomorrow! I have heard nothing but good stuff from tube patients, and I'm starting to wonder if these stuffed up ears and constant ear infections are what is causing his delayed walking and low vocabulary. The day after his appointment, Sam was clearly in pain and even threw up. Needless to say, Sam and Mommy had a day off of school and work, and worked on getting him comfortable and happy. Once we got a few doses of the new antibiotic and Motrin in, he was much better.

This weekend was a big one. Chris's mom came up from Mobile to watch Sam while Chris and I drove to Nashville for the Country Music Half Marathon. Sam quickly got excited about having YaYa to play with, which made it super easy to leave him for the weekend. Chris and I drve to Nashville and met up with some friends of mine from my old job. The day of the race was a real adventure. Traffic was so bad, we almost missed the busses from the parking lot to the start line. We just made it to the line when the start gun went off. The race itself was fantastic. But the weather slowly got bad and by the time I was a mile from the finish line, rain was falling and lightning was poppin. Chris and my friends had already crossed the finish line, but we were all lost from each other in the crowd and ended up searching the finishline area for over an hour in the rain looking for each other. After a much needed nap at the hotel we went out to a local Thai food place and celebrated our collective good showing in the race.

We drove home today, and I think Sam was once again sad to watch his weekend attention factory drive away. He had a good time with YaYa, and was still so worked up from a weekend full of playing that he refused to go to sleep. Poor thing.

I'll post race photos as soon as I get them from my friend (who did a 100% better job than me of documenting the weekend)!

~Kathy

1st Glenn-iversary

2010-03-30T18:59:00.008-04:00

One year ago this past Saturday:

- Sam had problems sleeping and the doctor ordered supplemental oxygen

- A quick trip to the hospital to get the O2 turned shockingly bad, as Sam's supplemental oxygen needs went from .25 liters to 3 liters by midnight

One year ago this past Sunday:

- Sam was intubated so they could figure out why he suddenly needed oxygen

- Intubation didn't help...hours past midnight, his O2 dropped to 32%, his blood pressure dropped so low they couldn't read it, and his heart rate shot up to 220 (human max).

- Sam needed LifeFlight to Atlanta, but it was storming so bad they had to send the ambulance.

- We were told Sam had a 50-50 chance of surviving the hour trip to Atlanta via the ambulance.

- We were told if he survived, he would need ECMO (external lung), and may not be a candidate for life saving surgery.

- Chris drove 100 miles an hour in our car while I rode in the front of Sam's mobile cardiac ICU ambulance from Macon to Atlanta as the sun was rising through the clouds...I prayed the rosary the whole way, and had never felt so alone.

- The amazing doctors in Atlanta's Egelston hospital stabalized Sam in minutes, WITHOUT ECMO!

- Sam was alive, but comatose and on more IV drugs than I thought possible.

- They bumped all surgeries back so that Sam could be first on the caseload of the Chief of Cardiothoracic Surgeon.

One year ago TODAY:

- Chris and I, both literally sick from exhaustion and worry, gave our son one last kiss as they wheeled him through the operating room doors.

- We sat with both of our parents in a waiting room full of people who were waiting on their own miracles.

- Sam came through the operation, the Bi-directional Glenn, with no complications, and even came off the ventilator that same day.

- The first time we saw Sam, he was pink from head to toe...something I have decided only a heart family can appreciate the feeling of.

Today, our Sam is just like any other kid on the outside, with the exception of his scar. On the inside, he is stable and healthy. It is hard to believe he was so sick just a year ago. Sam brought many many people throughout this country and even the world to God in prayer, and together with God we all got to see a miracle. I can't thank everyone enough for the prayers and support we have received, even before Sam was born.

I think it took me a while to 'bond' with Sam after he was born. We were so scared about his heart and about his future that we didn't live in the 'now'. If there is one thing Sam has taught me, it is that we only really have 'now'. I had no idea what kind of gift I had been given in Sam until it was ALMOST taken away, and then given back to me! The second they told us he only had a 50% chance, I knew I could not live a second without him. And I can tell you that I cherish EVERY second with him...even the ones when he is cranky, crying, and throwing food off the table.

Happy 1st Glenn-iversary Sam! It is certainly a day we will never forget!

~Kathy

Bowling for Beads and Hunting for Eggs

2010-03-28T20:04:00.001-04:00

Another busy weekend...

We drove to ATL for the 5th time in three weeks on Saturday. We participated in a fundraiser for a program called Beads of Courage which is coming to the Sibley Heart Center (Sam's cardiologist/surgeon group). The program gives hand made glass beads for each procedure/hospital stay that a child goes through. The child/parent journal about each bead, and it is set up as a way for the child to claim an ownership over their medical achievements. The fundraiser was at a SUPER nice bowling alley at Atlantic Station, a SUPER nice shopping center in DT ATL. Sam met up with his heart friend, Matthew. This photo of the two of them looks extremely similar to the last photo I have of the two of them...Matthew is being soooo good and Sam is being a total butt. Fun was had by all, and I can't wait for Beads of Courage to start at Sibley!

Sunday was great, too. Our neighborhood (which is relatively new) finally pulled together an active neighborhood association. They had their first big event...an Easter egg hunt! We got to see/meet a lot our neighbors and their kids. Sam hung out with his friend James, who is just 4 days older than him! We met a family who's 3 year old daughter had open heart surgery at Egleston a year ago, and who's cardiologist is Sam's cardiologist! Sam found a few eggs, ate a really messy cookie, and showed off his bike cart to his friends!

Afterwards, Sam ate dinner and got a bath. While I was running the water, I stripped Sam down in the bathroom. He was kneeling by the bathtub and getting super excited to get in; I've never seen him jump up and down with excitement for a bath! When I finally lifted his naked butt into the tub, I realized he had left a little puddle of pee on the rug by the tub. Guess the excitement was just too great!

~Kathy

Cherry Blossoms and Coca Cola

2010-03-21T18:45:00.000-04:00

We had a busy weekend. Chris's sister Lydia and her boyfriend Mike came to visit. Thanks to some Atlanta traffic, they got her a touch late for Sam, but we braved going out to eat anyway. Naturally Sam nutted up in the restaurant, and threw up in a bread basket (a common occurance with Sam and restaurants). He showed very little stranger anxiety though, so that's some good news!

Saturday I took Sam to get some portraits made. We had a bad experience at this place last weekend, and ended up leaving after an hour of waiting. BUT they tried to make up for it this time...no pushing us to buy more, took her time, and gave us 45$ worth of freebies. Afterwards, we went to the Cherry Blossom Festival in downtown Macon. We watched the Dixie Disc Dog Championships...always fun. We saw some friends (yes, we do have friends in Macon now) and had a good time in the sun.

Today we drove up to Atlanta and went to the World of Coca Cola Museum. Sam didn't get a nap, and was pretty much a butt the whole time. He did like sampling cokes from around the world though. We went to the Varsity, said goodbye to Lydia and Mike, and then drove to the Tanger Outlets for some shopping. Sam got an adorable swim trunk/top, hat, and sunglass combo. Needless to say, Sam went to bed early and all is well!

Keep praying for Emery. She is having some pressure problems, chest tube drainage problems, and continues to have high antibodies. She is awake and alert, which is good and bad...she wants to be held but her sweet family can't hold her much because of the chest tubes. They are hoping for some resolution this week, and maybe to move to the step down unit. I know most of you don't know this family, but it is important that this heart transplant be a success, not just for Emery, but for Sam. Sam, too, will some day face a heart transplant if no other technology develops in the mean time. Emery's success is Sam's success, as it is the success of all of these babies who need transplants.

~Kathy

Poor Pinky's Finger

2010-03-16T19:30:00.000-04:00

Sam had a bit of an accident last friday. While at daycare, he got his 4th finger rocked on by one of the workers in the rocking chair. They called me at work and told me he was calm and not crying anymore, but that his finger was 'really bruised' and his nail was probably going to come off. BUT when I got to daycare, I couldn't even tell what finger it was...there was only just the slightest blue in the middle of the 4th fingers nail. I told the lady I understand they have to report incidents to me, but to not worry too much about bruises with Sam. He's on Asprin and he is going to bruise super easy, and I don't want them to make a big deal over it everytime it happens. I called his Pediatrician anyway, and they said just to watch it and call if it looked worse.

Over the weekend the tip of Sam's finger slowly turned more blue. Yesterday it got very red. Today, the finger nail looks yellow-white, and there is a slight bit of fluid coming out from under the nail. The daycare called me again just as I was getting off work to say they thought it looked more swollen this afternoon. So I picked up Sam and headed to the pedi for an eval.

I told the pedi what happened, and told him I was most concerned about a compromise to the circulation in the tip of the finger, since Sam's oxygen levels are already low. He did a good investigation and said the circulation looked intact, but the nail bed is starting to get infected. He prescribed an antibiotic. But he said if the swelling and reddness did not go away in the next three days, that we may have to have it xrayed. He said if it's broken, Sam may have to have it pinned. Ugh. But Sam is using it, and it doesn't seem to be bothering him so hopefully it's just an infection. The pedi said Sam will be more prone to infections in scenarios like this because of his low blood oxygen.

I guess Sam was mad about having his finger busted at daycare. He decided to get even. I got a report that Sam bit another kids finger at daycare Monday. Eye for an eye, right?

~Kathy

PS: Emery's pressures are high. They are trying a new, rarely used technique to get rid of all antibodies to avoid rejection. Please pray.

Same Old Same Old

2010-03-14T21:02:00.000-04:00

Chris's sister and her family came in Thursday night on their way to move to their new house in Virginia. Sam got to hang out with his cousins and did fairly well with the 'new' faces. We didn't get a ton of hang out time though, because Chris flew to Chicago Thursday night for the weekend to see a concert with old friends. His sister left Friday morning, which meant Sam and I had a weekend to ourselves...which we thoroughly enjoyed. We woke up early Saturday and ran a 5K in Forsyth, GA, went shopping, ate lots of bad food together...it was nice.

We went to pick up Chris from the Atlanta airport today. While we were there, we stopped by CHOA at Egleston and dropped off a little gift for Emery. She is recovering from her heart transplant slowly but surely. Chris drove around the block while I took the basket up to the CICU. I just left the basket at the nurses station and let them take it to Emery and her parents...I didn't want to disturb precious healing time and precious bonding time! But her newest update is that she is becoming more alert, and needing less pain meds. She needs to perk up more to eat and get up her energy, but so far so good!

Being up in the CICU was oddly emotional. I contained my emotions pretty well with Sam and his surgery last year. But walking those halls today brought a rush of stuff back to me. The thought of that huge CICU, full of little babies fighting for life...and the thought of my baby being in that line up last year...and the thought that he would be back there again someday...bleh. It was an unexpected emotional experience. That hospital is amazing though, and I am in awe of the miracles they work!

~Kathy

Emery Update

2010-03-12T21:36:00.000-05:00

Emery is doing amazing! She has her new heart and has been extubated. She did have one antibody that has a potential for causing rejection so they have started a 5 day process of clensing her blood via plasmapheresis (something I have never heard of and am frankly amazed at). They will run biopsies to check for rejection along the way. But so far so good. I am going to put together a little goody basket and run it up to her family on Sunday. Keep up the prayers because they DO work, and so far they are working miracles!

~Kathy

Pray for Emery

2010-03-11T07:15:00.000-05:00

Sam's CHOA heart friend Emery was placed on the transplant list yesterday because her heart was failing. Less than 24 hours later...at 3 am this morning...they got the call that they had a matching donor for Emery! I've never heard of a wait shorter than three months! Needless to say, they are happy, shocked, and scared. Please please say prayers for Emery, her family, and her doctors as they will be going into surgery any minute.

~Kathy

Three things...

2010-03-08T21:33:00.000-05:00

1. I love my new job. My part time pediatric physical therapy job is AMAZING. This is what I was made to do. I have a lot to learn, but so far there has not been one second where I have thought "do I HAVE to do this"...that was a frequent thought at my last job.

2. A dear friend who helped me through Sam's diagnosis when I was pregnant is now pregnant herself and is having a BOY! She and her husband have been through more than anyone can imagine, and NO ONE deserves this sweet baby boy blessing more than them. I can't remember the last time I was this freakin happy for someone!

3. Sam is the cutest kid on the planet. See evidence posted below.

~Kathy

A True Did-Nothing Weekend

2010-02-28T18:57:00.001-05:00

This weekend, we did NOTHING. I did have a good photo session with Sam, though. Enjoy. Sam's recently learned trick list: giving kisses, petting Relo and saying 'niiiiiiiiice' (of course it sounds more like 'daaaaaaa'), pulling up on EVERYTHING without thinking about how to get back down, and climbing the first step on our stairwell.

Also, say some prayers for Sam's little friend Amelia, who after being born premature last APRIL, will HOPEFULLY be going home for the first time this Wednesday. Please say some prayers for our dear heart friend, Emery, who will likely be placed on the transplant list this week.

~Kathy

BUSY BUSY BUSY

2010-02-19T22:25:00.000-05:00

I haven't updated in FOREVER...we've been quite busy. Let's start from the top...

I had my last 'full time' day at my old job last week. In a way it was sad...these people (who didn't really know me at the time) were there for me during my pregnancy and during Sam's struggles. Not once did anyone question my need to go to appointment after appointment, or take random days off (and weeks off) to take care of Sam. Everytime something came up with him, my co-workers quickly stepped in and picked up my slack. On top of that, they made themselves available to be a moral support crew. For all of this, I can never thank them enough.

After my last day, Chris, Sam, and I drove to Mobile for Mardi Gras. Sam took the ride like a champ, and although he didn't make it to any parades because it was so cold, he did see his third snow storm! Chris and I went to the Striper's and Crewe of Columbus balls and saw many many friends and family. Sam got to hang out with both sides of the fam, and got to meet his future BFFs (my friend Catherine's kids). Naturally Sam got a cold just before our trip. While we were in Mobile, he started running a LOW temp, but since he NEVER runs a temp, we took him to an urgent care clinic. OF COURSE he ends up with a double ear infection! How do we go a full YEAR without an ear infection and then get two back to back?! He (once again) didn't show us any signs with the exception of the fever...no pulling ears or grouchyness or anything! All is well though, and his antibiotic is working fine. All in all, a good weekend.

I started my two new jobs...one at the pediatric therapy clinic (The Speech Path) and one (just a PRN job) at Regency Hospital (a long term acute care facility). I LOOOOOOVE my new peds job. You just can't beat getting to play with cute kids all day. It will be tough for a while, since outpatient is very different than what I have been used to. But I expect that to smooth over quickly, and I already know I am going to love every second of it.

All my other CHD friends have made mention to this, so I feel compelled to spread the word: Snowboarder Shaun White, who just won gold for the second time in the Halfpipe in the Winter Olympics, is a CHD survivor. He was born with Tetrology of Fallot, and had two open heart surgeries before the age of one. It's hard to explain, but all these many types of CHDs tend to blend into each other as far as their characteristics are concerned. Sam has not been diagnosed with Tet, but he has pieces of this CHD. In fact, it was a piece of this CHD that went undetected, and nearly killed him one year ago next month. I can't tell you how uplifting it is to hear about the success of people like Shaun White. To be told at one point that Sam wouldn't live past the age of three, and then to be able to dream that he can do ANYTHING (even win Gold in the olympics) is so comforting. I don't expect Sam to be some type of fantastic athlete or anything (he DEFINITLY didn't get the genetics for that one), but to live a life with less of a burden related to his CHD would be such a blessing.

On a totally unrelated note, Chris and I have signed up for a half marathon in April (Country Music Half in Nashville). We're super excited. We're also taking offers for someone to babysit Sam for that weekend!

~Kathy

14 Month Birthday

2010-02-03T18:10:00.004-05:00

PHOTOS: Sam on his 'birthday'...reclined on our king size, watching tv with remote in hand, cheetoes at his side, complete with shoes on the bed...

Sam's 14 month birthday was today. He's such a big boy. Sometimes it is hard to believe he has a life threatening condition; and at the same time it's hard to forget it. We have truly learned to live for 'today' but worries about the future are ever present. I got a great email today from a stranger that helped me. I am going to post it hoping that it helps my heart friends, as well as our own friends and family, gain some perspective on what Sam's future could be like. I hope Elaine doesn't mind!

"Good Evening: Just read your story about your little boy and I also have a child born with Tricuspid Atresia as well as Transposition of the Great Arteries. My son is now 17 1/2 years old and life is pretty good. He has had three surgeries, being the PA Banding, Glenn, and the Fontan. He is almost 6 feet tall and lives a normal life. He is graduating this year from grade 12 and even has a girlfriend. I remember when he was small I often wondered what his life would be like. He is an awesome skier and does sports moderately. Just thought I would drop you a note and let you know these kids live great lives."

~Elaine P. Saskatchewan, Canada

THANK YOU Elaine! Every 'success' story I hear gives me hope for Sam and these other sweet babies! Happy 14 month birthday sweet baby Sam!! Can't wait to share your successes with the world!

~Kathy

This is Sam's "DON'T TICKLE ME...ok please tickle me" face!

New Tricks and a New Job

2010-02-01T18:43:00.004-05:00

PHOTO: This is from today, outside of Publix. He was mad because he wanted the cart to keep moving...he's a sensory seeking kid...

Sam has added to his trick list. He has pulled all the way up to stand! I actually found him sitting up in his crib the other day (a real first)...of course, to make it a little extra special, he had somehow worked one arm out of his sleeve and through his neck hole. He can point out where our noses are. He doesn't know where his nose is, though. He can open and close doors and drawers with minimal finger pinching (so far). He climbs over everything, and seems pretty happy kneeling at toys to play. He has finally started to take reciprocal steps when supported under the arms...one step closer to walking!

Today, though, we had a mishap with one of our new tricks. He was reaching to pull up on my night stand, where my large, heavy digital SLR camera happened to be sitting. He caught the strap and pulled the camera right onto his head. Poor baby got a goose egg right away on his forehead. I just KNEW he was going to have a 5inch bruise because of his dang aspirin. Luckily the only damage was a quarter size purple forehead knot...and lil' Sammer's pride.

I had my orientation at my new job today! I have a REALLY big office, my own desk, and my own computer (all are MAJOR upgrades from my current job). They are getting in all the new pediatric PT equipment this week. I'll be unloading and organizing it all on my first day, February 15! Check out their web site and my staff member biography: http://www.thespeechpath.com/

~Kathy

PHOTO: Chris and Sam at 6:30am. Good Morning, Mommy!

The First Do-Nothing Weekend in a While

2010-01-24T20:04:00.004-05:00

(Video is from my aunt's house in Cypress, CA on Christmas day)

This was our first nothing to do weekend in over a month. It was great. We took turns sleeping in and watching Sam (who woke up at 5ish both Saturday and Sunday). We drove up to Forsyth and went to a great independently owned pizza parlor and bakery called Jonah's. The pizza was great, the service was great, and the owner was super nice and gave us two fresh baked loaves of bread for free! We did a little shopping and a lot of hanging out...all in all a good weekend.

Sam has some new tricks. He says "thank you"...of course, it sounds nothing like thank you, more like 'ta ta' but we know what he means. He also said "dog" this weekend when we were playing with Relo. He stands a little better now, but I stay pretty close because he has no idea how to catch himself if he falls. He pulls up to a full kneel but doesn't pull to stand yet. He FINALLY is able to sit from a supine position, but doesn't do it often. He is really ready to walk but not physically ready. I wish he would hurry up and do it though, because he gets frustrated when he can't do what he wants to do.

Say some prayers for Sam's little buddies: Logan is home after his heart surgery and so far so good, with just a touch of pleural effusion. Jordan came home from heart surgery but had to go back after they discovered an infection in her incision that has become systemic. Derrick had a complication related to fluid drainage from his chest tubes, which means increased time with the chest tubes (which is supposed to be the most painful part of these heart surgeries). He's a trooper though, and so far is responding well to treatment. Natalie (who had the surgery that is next on Sam's list) has had a fantastic recovery, and is home and healing well...it is amazing what these heart kids can bounce back from. Sam's premie buddy, Amelia, had a GI surgery this past Friday. This little warrior has been in the NICU for 9 months and this is her third procedure. Please pray this is the fix that brings her home!

Upcoming events for the Wimberly Fam:
Mardi Gras Balls in Mobile (Feb 11-12)
New Job for Kathy (Feb 15)
Pedi Appt for Sam (Feb 19)

~Kathy

Birthdays and Tummy Bugs

2010-01-17T17:52:00.004-05:00

This week was mine and Chris's birthdays (not sure on how to make that grammatically correct...). Mine was Thursday. Chris surprised me with a cake. Since my Christmas present was big (a NICE Trek mountain bike), and was supposed to count for my bday too, his present for me on my birthday was to listen out for Sam while I took a super nice bubble bath. It was fantastic. I also got too pick dinner...5Guys Burgers and Fries. It, too, was fantastic.

Friday was Chris's birthday. It was destined to be a bad day. I woke up nauseous, but tried to go to work anyway. I lasted about 20 minutes at work before I realized it wasn't going to happen. By the time I got home I was hurling. I spent the entire rest of the day between the bathroom and the bed. By night I was feeling a little better, and wanted to make Chris's birthday nice. We attempted to go out to eat for something 'light'. We went to a Thai place called Lemongrass. I just ordered rice. But it didn't matter, Sam was a total butt and we had to get them to pack up dinner to take it home. I felt kinda bad for Chris, but we decided to get him nice Trek mountain bike for his birthday (which we picked up on Saturday) so I hope that made up for the bad day.

I felt much better on Saturday, but I guess my blood sugar/pressure was all out of whack because I nearly passed out Saturday morning. The rest of the weekend was quiet. We took Sam out for a ride on our new bikes and in his new bike trailer. We got him an adorable helmet, too. He liked the ride, but not the helmet.

Today, however, the tummy bug returned with a vengeance...this time for Chris. We were half way to church when we had to turn around. I had almost convinced myself I just had food poison, and not a bug. Alas, the bug has hit, and I am now super nervous Sam will be next. I'm saying a prayer it skips him. Of course, for all I know he gave it to us...he has a history of not seeming sick when he really is...

On another note, all our heart buddies are kicking butt in their recoveries from surgeries (weird how a whole group of them all had surgery at the same time for different reasons)! Little man "D" has his surgery tomorrow, so pray for a successful operation and recovery for him, as well as continued successful recoveries for Logan, Jordan, and Natalie.

~Kathy

Cardiology Appointment

2010-01-12T21:40:00.002-05:00

Sam had his every-3-month cardiology visit today. Usually, we check in, hang out in the wait room for about 10 min, and then the fun starts. Two nurses do a tag team job of measuring height, weight, blood pressure, oxygen saturation, and perform an EKG, all within literally 5 minutes. It's amazing. Then we head to another room for a 5 min wait before we get to see Dr. Cardis.

USUALLY Sam likes the 5 min tag team nurses. He's a big flirt, and they love to give him an audience. He's really never pitched a fit in any doctors office. TODAY, however, he threw a true tantrum during the tag team portion of the visit, and he never calmed down. Dr. Cardis was trying so hard to listen to his heart while Sam was screaming his head off. The only time he stopped screaming (and I do mean screaming) was when Dr. Cardis was leaving the room...Sam suddenly stopped screaming, raised a waving hand and said "bye bye".

No bad news today. His oxygen saturation was a little below our usual (around 83% when they usually run 87%). We also mentioned that Sam seemed to have a few more blue spells than usual. Dr. Cardis offered the idea that Sam may have built up some extra red blood cells during our time in the higher altitudes in Cali. In a normal person, this would help you oxygenate yourself in the lower oxygen altitudes. In Sam, who doesn't have the capacity to oxygenate anymore red blood cells than he already has, he just ends up with increased 'blue' blood verses 'red' blood. He thinks it will all work itself out in a few months. We'll see. Sam is acting just fine, eating just fine, sleeping just fine...no outward signs of any problems. We go back for an echo in three months, and maybe a full panel blood test just to check on internal function of other organs. For now, all's well!

Lot's of things to be thankful for today, both in our immediate family, our heart family, and in our circle of friends!

~Kathy

FINALLY!!! (and prayer requests)

2010-01-11T20:53:00.004-05:00

After literally MONTHS of hearing "Da da" over and over and over again, Sam finally said "Ma ma" tonight! Just in the last few weeks, he had mastered a few new syllables... 'ba' and 'na' being among them. But tonight was the first time we heard a distinct 'ma' come out of him, and he actually strung two 'ma's together a few times. So proud...

On another note, there are a couple of heart babies who need prayers. The first is Natalie, who has the same defects as Sam and who has had a VERY similar surgical/medical history as Sam. She is having her Fontan TOMORROW! Jordan will be be having her second, and an unexpected open heart surgery TOMORROW! Also, pray for Logan, who will be having his third open heart surgery in his third year of life Thursday! We have found the congenital heart defect community to be surprisingly large and small all at the same time. Everyday we are introduced to more families facing the same fears as our own. And every single one seems to be willing to bend over backward to help each other through it all. We may never meet, but we are forever connected. I think about them all quite often. Pray for these families, because they pray for us!

~Kathy

I Miss My Vacation!

2010-01-08T19:44:00.004-05:00

Well we made it back from California this past Monday. We had a fantastic time. Sam was such a good boy. He got to do so much in those two weeks. He saw snow in the mountains and touched the Pacific, met his great grandmother and extended family, saw the Rose Parade in Pasadena, went to the Griffith Observatory, saw the LA zoo, and ate lots of new foods. Chris and I snowboarded for our 3rd Anniversary. We looked like total fools but we REALLY had a good time. We flew home and Sam was pretty good. We finally pulled in to our house at 11pm-ish Monday.

Chris stayed home the next day to clean and put up Christmas, but Sam went to school and I went to work. When I picked Sam up from school, I noticed his right ear was literally oozing mucus. I rushed him to the Pedi, who casually tells me he has busted his ear drum. Apparently he had an ear infection and it just gradually filled up with fluid. Sam NEVER pulled his ear or had a fever. He never told us he was in pain. Sigh. Apparently it's not a big deal, though, and didn't cause any damage. He's on the pink antibiotic (which he loves) and an ear drop and he's doing fine with those.

Chris and Sam both got an extra day of vacation today. There was ALMOST snow here today, and out of fear the county closed all schools, which meant Sam's daycare closed, too. Naturally it hardly even rained. But Chris and Sam got to have a boys-day-in. Momma is very jealous, as she is still totally knocked out from the trip. And she has to work tomorrow :(.

The photos are from our trip. I doubt I could handle the cost of living or the traffic for extended periods of time, but I just love being in California!

~Kathy

Sam's Big Adventure

2009-12-28T22:46:00.002-05:00

My dad's mother and siblings all live out in Cali, and we decided a long time ago to come out here for Christmas this year. We left from Atlanta on Christmas eve at 830am. That meant we had to get Sam up and leave the house at 5am. It was pretty rough on us all. Sam was super tired by the time the plane took off, but didn't seem to have any problem with the change in pressure. As an added Christmas bonus, we didn't have to use his supplemental oxygen. We brought our pulse ox (which I haven't trusted since it sent us to the emergency room unwarranted about a year ago). Naturally, the pulse ox was reading A LOT lower than seemed possible based on Sam's general color and activity level (pre-flight it read 80% which is already much lower than usual, and then during the flight it read 74%). He wasn't blue and he was acting fine so we ignored the pulse ox and made it through the rest of the flight fine.

We stayed the first few days at my Aunt Jennifer's house in Cypress, CA. We had a big family Christmas there, and Sam got all kinds of toys and clothes. His 'stranger anxiety' has been surprisingly minimal, and he's let everyone hold him and play with him with very little fuss. Sam got to touch the Pacific Ocean yesterday, and is now up at my Grandmother's cabin which is surrounded by snow. Tomorrow, we plan on hitting the town of Wrightwood (where my Grandmother lives) and Chris and I plan on checking out skiing at their local resort. We'll be up here for a few days and then will head back to the L.A. area for the Rose Parade and (maybe) a trip to Disneyland. I'll post again when we get home, and will get photos on as soon as I can.

Hope everyone had a great Christmas and please have a happy and safe New Year!
~Kathy

Pediatric PT

2009-12-15T17:56:00.004-05:00

I started my journey to become a Physical Therapist when I was in grade school. I was a volunteer at one of our local hospitals. The last summer I volunteered, they assigned me to the outpatient pediatric therapy department. That was where I started to think about being a PT, although pediatrics was not necessarily the goal.

When I was in college, I got a job in a local outpatient clinic that treated people of all ages for all conditions. That job sealed the deal as far as me wanting to become a PT, and my boss and co-workers really helped me prepare for applying for and then getting though PT school. While at that clinic, I got my first exposure to kids and PT. One girl in particular, Krisanna, stood out to me. She had some pretty amazing deficits and hurdles to living a 'normal' life, but she was living it more than most people I know.

Once in PT school, I got very little hands on exposure to pediatric PT. What I did get, I loved. But pediatric PT isn't something you jump out of school and do. So I did the next best thing. I got a job at a facility with a heavy neuro population. And I have loved that job, and the people I work for and with. They have been there for me through everything with Sam, and I can't thank them enough.

But, last month, Krisanna passed away. I haven't seen her for a few years, but her bright spirit left its mark. While reflecting on her, and on our interactions, I made the decision to start a transition into pediatric therapy. Now, to be honest, my plan was to just take some peds classes and get some books in preparation for a FUTURE peds job. Providence had other plans.

About a week after I heard about Krisanna, I got a postcard in the mail from a pediatric speech clinic here in Macon. They were planning to expand their practice into physical therapy, and were looking for a PT. I felt like this happened for a reason. So I got an interview.

I loved the clinic, I loved the people, and I loved the position they wanted me to fill. I got the job.

Today, I turned in my letter resigning my full time position at my current facility. It was hard for me, and some of the reactions I got made it a little more difficult (a mix of happiness, tears, and shock). It is hard to find PTs in our area, and me leaving will make it hard on my co-workers for a while. But I just feel like this is serendipity...I feel led to this. And I don't usually talk like that. It is going to be hard at first, and I'll have to do a lot of research and studying over the next two months (the job will start February 15). But I feel fairly certain this was just meant to be.

Thanks, Krisanna.

~Kathy

"Kids at Heart" Christmas Party

2009-12-12T19:55:00.003-05:00

Today we went to the Kids at Heart Holiday Party in Atlanta, thrown by the Sibley Heart Center at Children's Healthcare of Atlanta. The Kids at Heart group is a support organization for kids who have had heart surgery at CHOA. The party was so nice. They had a lunch buffet, build a bear station, gingerbread house decorating station, Christmas choir, and the REAL Santa (see photos) all free of charge. Sam was a good boy, and didn't shed one tear when he sat on Santa's lap. Of course, he didn't know who was holding him, and we kept his attention away from that fact. I'm sure Sam will really enjoy this party and the other Kids at Heart events when he gets older, and I'm so glad they are available to us.

Other than seeing Sam have fun, the best part of these events for Chris and I is to meet/reunite with other families who are on this 'heart' journey with us. We saw little Matthew and his family, and met Emery and her family (photo below). Both kids are very close to Sam's age. All three have very different and yet similar conditions, and all three have had/will have very different and yet similar medical/surgical journeys. It's hard to explain. But it is comforting to us to see their smiling faces and to compare stories and experiences with them. I can't wait to see them at these events through the years, and watch them grow and thrive despite their broken hearts.

We also met a family today with a 14 year old girl. While she looked healthy, her mother told us they will soon be going on the organ list, awaiting a heart and lung transplant. What a sobering thought. When you are healthy, and all is right with the world, you tend to unintentionally ignore the fact that terrible things are happening. Even worse, you tend to believe that these terrible things can't happen to you. Chris and I did everything right in our lives. We both went to college, waited to live together until we were married, went to grad school/co-oped to give ourselves the best start in our careers..I could go on and on. If you do everything 'right', doesn't that mean these terrible things skip over you and your family? Despite everything we did right, our child will suffer. It's hard not to feel like it is a punishment at times. Punishment for what, I don't know. But I guess that is the challenge. OUR challenge is to thrive joyfully for the glory of God inspite of our lot in life, and to teach Sam to do the same.

But there is another challenge. It is to do what you can for those in need, the way that you would hope others would do for you. We have always had our needs taken care of, without ever having to ask. I have recently been searching for ways to do the same for others, particularly others suffering from congenital heart defects. I came across a wonderful family in the CHD community. Stefenie and her family have started a campaign called Cuddles from the Heart. This is a blanket donation program, where new homemade/store bought blankets are distributed to children and their families during their hospital stay to give them a sense of comfort and support. Originally, Cuddles from the Heart benefited the University of Iowa's Children's Hospital, where Stefenie's son was treated for his CHD. Cuddles has since spread, and I have volunteered to start a Cuddles branch in Georgia to benefit patients at Children's Healthcare of Atlanta. I have not set a donation or distribution date yet, but when I do, I will be sure to post on how you can assist me in answering this challenge!

~Kathy

Check-up, 5k, and Christmas Fun

2009-12-06T19:02:00.005-05:00

Sam had his 12 month check up this week. I missed it (got locked out of my car...long story) but Chris went. Sam is growing like a weed. He is 32.5inches (100%), 23lbs (60%) and I don't remember his head circumference but it is in the 95%. We went from the bottom of the charts, to the middle, to bursting out the top. Dr. Sims said he looked great, and gave her own OK for our California trip. Everyone marvels at how well he is doing...I don't blame them.

Sam participated in yet another 5K (this makes 3 for him). We ran in the Macon Reindeer Run 5K to benefit Children's Hospital of Macon. I have a love/hate relationship with Children's of Macon. Their main pediatric floor contributed to the down-slide of Sam the night he almost died, and hesitated for hours before calling in our Cardiologist. BUT their PICU halted the down-slide and, by cooperating with our cardiologist and the cardios at Egleston, stabilized him enough to get him to Atlanta. Regardless, I'm sure they do wonderful things there. We ran with some friends and neighbors, who brought their kids too. Poor things...it was pretty cold. They all survived though, and Chris and I did pretty good (finished in 35 minutes).

Under the suggestion of our neighbors, we went to the Bolingbroke Christmas Parade. This little town doesn't even have a stop light, so naturally their parade was 'country'. Anyone with a John Deere tractor, big wheels on their trucks, a 4wheeler, or an antique car was asked to join in the line up. There was a group of civil war reenactors. Every 50 feet or so they would load their muskets with a blank and fire. Naturally all the kids started crying and screaming. Sam had on his snow cap, so he couldn't really hear the gun fire. Relo, however, almost peed himself in fear. The highlight for me, though, was the "Macon 1800 Club". This little group of all ages dressed in 1800 style clothes walked in the parade. One of the ladys, however, paraded in her 1800 style dress on her brand new HoverRound. Classic.

Goals for the rest of the week: finish shopping, finish wrapping gifts, run at least 4 times, and start a packing list for California!

~Kathy

Sam Turns ONE, Savannah Style

2009-12-03T21:23:00.003-05:00

Chris and I took off work today to celebrate Sam's birthday. We found a hotel that would accept our dog, and drove to Savannah last night. Sam donned his "First Birthday" clothes, and we hit the town. He had plenty of strangers tell Sam happy birthday, and we had one stranger actually sing him the whole song. We did the 'river walk' shops, Broughton Street, and the City Market. It was really pretty, and if we had more time we would have hit up some of the more historic places.

We did eat a BIG birthday late lunch in honor of Sam. We went to Paula Deen's restaurant, Lady and Sons. Sam ate the following: cheese biscuit, pan fried cornbread, green beans, black eyed peas, mashed potatoes with gravy, sweet potato casserole, macaroni and cheese, fried chicken, banana pudding, and butter gooey cake. And let me say, the mac and cheese was disturbingly cheesy, but sooooooooooooo good. We had a hard time walking to the car after that...

We ended the day with a quick trip to Tybee Island to see the Atlantic Ocean. We took some great photos, touched the ocean, played in the sand, and sang Happy Birthday to Sam with the sun starting to set behind us. He won't remember a thing. But we will. And we made some great memories today.

Happy Birthday to my baby boy, who has been through more in one year than most people go through in a lifetime. I am in awe of you, and thank you for everyday you give me in your presence. I love you.

~Kathy

Thanksgiving, Sam's First Birthday, and Blogger Award

2009-11-29T21:36:00.006-05:00

We left Macon on Wednesday for Mobile for the long holiday weekend. We stayed at my parent's house but spent most of our days with Chris' family (since we'll be with my fam at Christmas). We had a great Thanksgiving dinner at the Wimberly's house. Sam's 'stranger' anxiety has really amped up in the last month, and he wouldn't let anyone hold him without pitching a fit. He did get some good time in with his cousins, especially Noah (who is only 2 months older). And Chris, Shannon, Mark, and I got some good runs in. We did a 10k distance on Friday and then just over a 10K on Saturday. I still doubt it even made a dent in the calories we took in.

We had Sam's first Birthday Party on Friday at the Wimberly's house. All of Chris's siblings and niece/nephews came, all of my siblings came, and we had a great turn out of our dearest friends. It was a little cold, but we had a cook out in the back yard. Sam had a pretty good time, considering he would only let me, Chris, or my mom hold him. He opened his presents and clapped at the end of just about each unwrapping. When it was time for cake he was starting to crash. He didn't understand what he was supposed to do with the cake, and then got pretty mad when we tried to 'show' him what to do. Needless to say, the cake was followed by a nap. He got some really wonderful gifts, and OUR gift was to be with our friends and family to celebrate such a momentous occasion. Thanks to everyone who helped put the party together and who came to enjoy this time with us. Chris and I are working out a plan for a special family day on Sam's actual birthday (this Thursday) to complete our celebration.

One last note: I was nominated for a little blogger award this past weekend by a 'heart mom' blogger, Sundie. The award is called the Heartfelt Blogger Award. It is super sweet of Sundie to nominate me. Her daughter, Sydnie, is a heart hero, and I love reading about her adventures and seeing her develop into a little lady in their blog called Sydnie's Sweet Heart! Here are the details of the award:

Here are the rules for the award:

1. Display the award logo

2. Nominate up to 9 blogs that make you feel warm and fuzzy inside

3. Link to your nominees and leave a comment on their blog telling them about the award

4. Link to the person whom you received the award

The following blogs are my nominees, and I check up on all of them frequently!

Amelia's Progress - Micro preemie Amelia and her courageous parents' blog. Amelia was born in April of this year, and has yet to come home from the hospital. Her journey has been truly moving, and her parents have come through it all in the most graceful and uplifting of ways.

Our Journey Together - My husband's cousin and his wife's blog. Josh is not much older than Chris and I, and he has already battled colon and lung cancer. His strength to push though, his fight to raise awareness, and his wife's never ending, steadfast love truly amaze me.

The Houston Branch of the Woodard Family - My BFF from LSU's blog. Tamara and her husband Mark are just a super sweet, wonderfully christian family. I love reading up on their adventures in 'newlywedhood'!

Oh boy... - Tamara's little sis's blog. Although I have spent very little time actually hanging out with Ali, her blog is freakin' hilarious. The way she writes about her adventures in hospital radiology and marathon training really crack me up.

... then came Grayson in the baby carriage - Grade school friend's blog. I have known Morgan from WAY back in the day. He blog about her ever sassy but always sweet daughter Grayson always make me smile. I LOVE her "Little Miss Chatterbox" section!

The Moses Family - Chris's cousin's blog. Amy has a cute little blog highlighting the new edition to this growing Catholic family, Benjamin. Her husband has a great Catholic centered blog too: Aggie Catholic

I follow a lot of blogs and could nominate them all. Thanks again to Sundie! Hope everyone had a wonderful and safe holiday!

~Kathy

Sam's "One Year" Photo Shoot

2009-11-22T21:50:00.003-05:00

We had really wanted to have some "pro" photos made of Sam, but after I got my Nikon, I just kept putting it off. I finally went and had some photos made at Portrait Inovations. Naturally, Sam cried the WHOLE time. She got maybe 5 shots where he wasn't crying. Oh well...probably a sign I should just keep to my Nikon photos! Here are the best ones though!

~Kathy

Successful Race and Fundraising!

2009-11-14T21:23:00.003-05:00

We left for Atlanta early early this morning for the Strong Legs Run (a fundraiser for Children's Healthcare of Atlanta...Sam's hospital). Chris and I ran in the 10K race. We both ran faster than we expected, and both set personal records for our 10K times. My parents and Chris's parents came up to support us, and to do the 2K race. We all walked the 2K...Sam rode in his stroller. Sam met up with his 'heart buddy' Matthew (photo above), who has a similar condition to Sam's, and who has the same Cardiologist. We had a REALLY great day, and can't wait until next year.

The race was also a fundraiser. Between my family, we raised $850! We were part of a larger group of teams who were raising money specifically for the cardiac services research team at CHOA. Together, these teams raised $36000! I'm proud of us, and we plan to do more for the race next year. Thank you to everyone who sent in money for this cause!! Not too long ago (just 24 years, in fact) there was NO SURGERY to help babies like Sam. They just died. Only recently have cardiac research teams developed surgeries (like the one Sam had in March) to extend these heart babies lives. I know it's not millions and millions of dollars, but every penny you donated to this cause will go to further research and development of new techniques to keep Sam's life going. And I can't ever tell you how much that means to me...

~Kathy

Last Call for Runners/Donors!!

2009-11-10T18:54:00.002-05:00

Chris, Sam, and I are running in an event this weekend to raise money for the Sibley Heart Center at Children's Healthcare of Atlanta. These people SAVED SAM'S LIFE and will be the ones we call on again when Sam needs his next surgery. We would love to have you come up and run/walk with us (there is a 10k, 5k, 2k, and several just kid races). If you can't come and be with us, you are welcome to donate to this cause. The links are below!!!

~Kathy

My Donation Page
Registration Page
Children's Healthcare of Atlanta Race Info Page

LSU/Bama Tailgate

2009-11-08T22:03:00.003-05:00

We drove to Birmingham and Tuscaloosa this weekend for a tailgate and to hang out with family. We stayed at Chris's sister's house, and Sam got to hang out with his cousins. They love him a little more than he can handle...as in, he LOVES watching them, but isn't quite ready to snuggle up and sit in their laps yet. He did let me get a few good pictures though! Saturday, we met up with friends from PT school for a tailgate on Alabama's campus for the LSU/Bama game. It was perfect weather, and Sam was an angel for most of the day. PT school was the three hardest years of school I experienced, but I met the MOST amazing group of people there. I value any chance I get to be with them, and this weekend was no exception. As an added bonus, my sister Amanda was with the LSU band at the game, and when the game was over, we rushed across campus and got to see her before they loaded the buses. I wish every weekend could be spent with friends and family (and a victorious LSU team...)!

~Kathy

First Halloween

2009-11-01T15:54:00.003-05:00

Sam's first trick-or-treat took place on Monday, at my hospital. Staff and patients were invited to bring their kids up for trick-or-treating in patients' rooms and for a little party after. Sam met up with his friend Connor (son of a co-worker) and went to a few of our favorite patients' rooms and showed off for the nurses.

Halloween day started early...630am. Chris and I (and subsequently Sam) did a 5k race benefit for Jay's Hope, a local group who supports local families with children suffering with cancer. Sam dressed in his costume, and was in no mood to be awake and dressed in a costume. He made it through the race though, and after a much needed nap he watched us carve pumpkins.

Sam was getting cranky early, and we didn't think he would make it to trick-or-treat time. It rained here for a bit too, right at 530pm and I almost gave up hope for Halloween. The rain stopped around 6 though, and Sam got dressed one more time in his skeleton costume. We went to our neighbors house for Sam's first trick-or-treat. We have great next door neighbors, but they have been out of their house for a while, thanks to a busted pipe. I guess Sam didn't remember them (and he was really tired) because he cried and cried when Larea tried to hold him. He settled down though and watched a bunch of our neighborhood kids come and trick-or-treat for candy.

After a few more photos, Sam went to sleep. All in all a successful first Halloween!

~Kathy

Boo at the Zoo

2009-10-25T19:43:00.003-04:00

This Saturday was Boo at the Zoo in Atlanta. We got free tickets through Children's Hospital of Atlanta's Kids at Heart (a support group for kids and families of kids who have had heart surgery at Egelston Hospital). The Atlanta zoo is small but nicely laid out, and Sam had a pretty good time. All of the kids were dressed up (as was Sam) and there was a really nice family atmosphere. Part of the festivities was a private catered party for Kids at Heart families. The best part was meeting two families we have followed via CarePages for a while. Both are Hypoplastic Right Hearts (like Sam) and one of them goes to Dr. Cardis, like us. It was in some way comforting to look around at the Kids and Heart party and see so many kids and families. I hate that so many people/kids are suffering, but it made us feel not so alone in the world.

After Boo, we drove home and stopped at the Tanger Outlets. We picked up a ton of clothes, shoes, and accessories for all of us. I love a good shopping trip. Sam was still dressed in his costume, and got plenty of attention.

The first thing I wanted to do when I got home was upload our photos from the day. To my shock and horror, they were GONE...no where to be found on the card. I flipped out, and laid in bed pouting for a while. When Sam woke up from his nap, we went out to dinner at the new Mexican restaurant across from our neighborhood. I fed Sam refried beans...damn the consequences. I was super bummed. I made Chris get us ice cream, as I figured that would be the only thing to make me feel better.

I hatched a plan, did some research, and with a recovery software, was able to recover all my lost photos! I know it's dumb to be upset over photos...it's not like I don't already have 4 albums of Sam pictures! But they are back now and that is what matters!

One final story: Today at church, Chris had Sam standing in the pew seat facing the back rest. Naturally, he bumped his mouth. He only cried for a minute but I thought he was giving a funny face. Sure enough, his newest tooth was bleeding near the gum. Sam is on Asprin (and a hefty dose, in my opinion), so he bled and bled and bled. He was swallowing it for the most part, but he got tired of that after a few minutes. He started spitting it out...spraying it EVERYWHERE...all over our new clothes. I grabbed a bunch of paper towels from the bathroom, and had a pile of bloody towels next to me in the pew. This lasted about 3o min.... Man, I hate to think of the adventures when he starts running and jumping and climbing and doing general boy things....

~Kathy

Another Mobile Weekend

2009-10-18T21:46:00.003-04:00

We went to Mobile again this weekend. This time for Brian Cobb's going away party. He is taking a job transfer/promotion to Chicago, and his family threw him a little party. I have known Brian and his family since preschool...his Mom was our teacher! It was really nice hanging out with friends and I hope Brian enjoyed it.

While we were in Mobile, we took Sam to a pumpkin patch. He wasn't a big fan. It was cold and windy and he had just woke up from a nap. Super-crank didn't smile for hardly one picture. We'll have to find another pumpkin patch and go when he's in a better mood.

When we got home tonight, Chris and I lowered Sam's bed, since he is getting really close to pulling up. While we were working, Sam decided he could commando crawl! This is the first time we have seen him doing any form of crawling. I was getting worried that he was taking so long to get to this milestone. He's already proven himself a total faker recently, so for all we know he's been crawling for months, just not in front of us! But we are super proud of him, and are ready to start a new stage in parenthood...the stage where you do nothing but chase a baby all day...

~Kathy

Sam, the Faker (and Vacation News)

2009-10-14T21:13:00.003-04:00

We've been pretty busy recently. We went to Mobile for two more weddings this past weekend. Amazingly we made it to both (they were only an hour apart) and hit up both receptions, too. Sam didn't get much sleep our first night in Mobile, and he never really recovered until he got a nights rest in his bed here at home in Macon. He was super grump all weekend. But, in his defence, he has cut more teeth. He now has two on the bottom and four across the top.

On Monday, when I picked Sam up from school, he was holding a bottle....which is something he doesn't do at home. I was so excited and told the teachers that he hasn't been able to do that and that I was so happy he was learning. They looked at me like I was crazy. They said he's been holding his bottle FOR MONTHS. That Sam had me and Chris fooled! My Mom's theory is that kids have to be a little more independent at daycare, but at home they know Mommy and Daddy will just do it for them. Little punk. Since then, we have made Sam hold his own bottle...which he does LIKE A PRO. And I seriously thought he couldn't do it....

Today, Sam had his cardiologist appointment. He had an echo and EKG, which all looked great. He weighs 22.8 lbs, and is 30 inches long. His oxygen percentage was great...87-89%. He flirted with EVERYONE. And he sat so still during the echo and EKG, which is pretty rare for him. Dr. Cardis thinks he looks wonderful. I rehashed the conversation about the vacation to California. After telling him the exact plans, he still believes we need supplemental oxygen during the flight. But he thinks we will be fine without oxygen in Wrightwood (the mountain town where my grandmother lives). That's a big relief. We'll keep our O2 meter with us, and if his oxygen looks low, we'll have the contact of a durable medical equipment company in California that we can get a tank of oxygen from. But Dr. Cardis doesn't think we'll need it. Sam may have a true white Christmas in the mountains!

Please say some prayers for baby Amelia. She was born premature in April and is still in the hospital working on getting strong enough to come off of supplemental breathing support. This has been (and is becoming more so) a painful journey for her parents and family, and they need to bring her home healthy and happy and SOON!

~Kathy

A Busy Week, Indeed...

2009-09-25T21:11:00.005-04:00

We have had a very busy week, so get ready to sit and read for a while...

This past weekend we went to Mobile for several events. We watched Chris's little brother's marching band perform at his high school football game. I used to 'coach' the color guard in the band, and it was nice to see them perform, too. While at the game we ran into my HS friend and college roomie Catherine and her sweet babies. I got pooped on while holding her youngest, but babies are so cute, it was easy not to care! We also ran into the drummer from Chris's old band, who is now coaching the drum line in the marching band. Quite a nice little evening. Sam didn't make it to the game though...he had a LONG drive and made it apparent when we got to Mobile that he wanted nothing to do with anyone unless they were putting him to bed.

Saturday we went to my grade school best friend's wedding. Angela married a friend from HS, Patrick, which meant the wedding was basically a HS reunion. The wedding was beautiful, Angela rocked her dress, the reception was warm and lighthearted, and hanging out with friends who stay the same wonderful people no matter how long it has been since you have seen them last was priceless. Sam had a blast, too. He met his future wife Sophia (daughter of Mitch and Mary Alice). They had a photo booth and we took way too many photos with friends. I'll scan and post them soon, I promise!

Monday was a weird day. This is a topic I will only bring up once on this blog, and then bury it for Sam's sake: circumcision. When Sam was born, our doctor would not let us do it because at any moment he could have been heading into surgery, and they didn't want to introduce an infection risk. Now that he has some time to kill before his next surgery, we inquired about performing it. Our Cardio agreed, and told us it would be a good thing to do, since it would prevent future UTI/Kidney/Bladder infections. He referred us to a pediatric specialty group in Atlanta, since Sam would need special care with regards to the administration of anesthesia.

We drove to Atlanta Monday morning in terrible weather. On the way, Sam coughed and then threw up his 8 oz milk bottle all over himself and in his car seat. After a bad dive, we meet with the Urologist, who acted like we were bad people for ever considering this procedure. He blew it off as an 'old cultural tradition' and said there was no good study to support the fact that it prevents future infection. He also said that if we decided to do it, they would HAVE to do the surgery at Egleston (Sam's heart surgery hospital) because the cardiac anesthesiologists would have to administer his meds because of his heart. On top of that, he has to stop his Asprin therapy (which poses a stroke risk). AND he would have to stay over night.

Needless to say we left conflicted and a little let down. It's not like we feel religiously or culturally attached to the procedure, but if our Cardiologist thought it was a good idea then we were willing to do it. It would have been done at birth anyway, if it weren't for Sam's heart. We're going to talk to our Cardiologist again in October, but we probably won't go through with the procedure now. I doubt NOT having it done will affect Sam in anyway socially, or at least in anyway that will be lasting. It poses weird situations for us...what do we tell him when his brothers look different, or his cousins look different? He's a special kid in many ways, so I guess we'll just lean on that explanation.

Sam had a pediatrician appointment today. He weighs 22lbs (50th %) and is 30 inches long (85th %). The MD said he looked amazing, and she commented that you would never know anything was wrong with him if you didn't know his back story. We hear that a lot. We're on a wait-list for the H1N1 vaccine because of Sam's heart, and will be first in line for it when they get it in...IN LATE OCTOBER!! The whole world will have had the virus by then! Oh well. She also got him set up for the Synergis vaccine (the RSV vaccine) which we did all of last winter. Poor Sam has a lot of injections in his future...

Speaking of Sam: he's so dang cute. He sits up like a pro now. He still hasn't crawled, but he can turn a circle on his tummy and rolls to get to far away toys. He is ALMOST pulling up to sit from laying down. He's a little behind with his mobility but the Pediatrician was not concerned. He laughs and laughs, especially when Relo barks. He went to dinner with me and three girl friends from work the other night...he flirted the whole time. He has just a tad stranger anxiety but really only when he is tired. He says Dada like a pro, and is almost saying bye bye and uh oh. No mama yet. Sigh. He's the best though, and we can't get over how much we love him...

~Kathy

Sam's First 5K

2009-09-07T18:32:00.005-04:00

Well, Sam finished his first 5K! Chris, Sam, a few friends, and I ran in the Macon Labor Day 5K this morning. Sam was one of about 8 stroller kids. There were over 1000 people in the race so there was plenty for him to look at and be distracted by. He didn't fuss the whole run (although he rarely fusses in his jogger) and really enjoyed watching all the people around us. I forgot my camera (soooo disappointing) so these are photos and video from my cell phone. Next on Sam's run list: Jay's Hope 5K Oct 31, Strong Legs Run for Egleston Hospital Nov 14.

~Kathy

Diaper Cakes

2009-08-30T14:44:00.005-04:00

Think I should sell diaper cakes?

~Kathy

Sam's Icky week

2009-08-29T19:48:00.003-04:00

Census is low at my work right now, so we are rotating PTs and OTs having a day off during the week. My day off was Tuesday. Sam and I stayed home from work and school and got all kinds of things done. When I took Sam back to school on Wednesday, there was a sign on his classroom door that said "ROTOVIRUS CONFIRMED IN THIS ROOM"....oh joy. But I thought maybe he'd be alright since I had kept him home on Tuesday, and maybe he'd missed the initial spread of the bug. However, as I discovered, rotovirus has a two day latency...he had actually picked it up on Monday and by Wednesday mid day he was showing symptoms.

I picked him up from school with a fever of 101 and he did throw up a few times that day. He had a low fever and diarrhea for the rest of the week. Chris stayed home with him Thursday and Friday. He woke up a much happier boy today! But still...in Sam's 9 months of life he has had two fevers and one bout of bloody stool...pretty good record, I think.

On an unrelated note, ALWAYS question your medical bills. We have discovered that literally ALL the medical bills we have received since Sam's birth have been in error in some form or fashion. If we had just paid them, we would have paid about $10000 in unnecessary payments. This past week I did A LOT of work going through hundreds of insurance EOBs and found huge errors. If they had been smaller and fewer bills we probably would have just paid them. But when you get $4000 bills, you naturally tend to question their accuracy! Long story short, we owe nothing.

On another unrelated note, I have become a master diaper cake maker. They are great baby gifts, and super adorable! I'll post some photos when I finish handing out the three that I still have sitting on my counter.

~Kathy

In Honor of Sam

2009-08-14T20:45:00.003-04:00

We received information about an event to benefit Children's Healthcare of Atlanta (the hospital where Sam had his surgery). It is called the CVS Strong Legs Run, and all money goes to benefit this hospital system, which is world class in children's oncology, neonatal care, transplants, and CARDIAC SERVICES! Chris and I decided right away to participate in honor of Sam.

The event is a 10K run/walk, 5K run/walk, 2K family run/walk, All Kids Can Race 75 yard dash (disabled children only), and a Mascot Trot (for all children, who will get to race popular college/business mascots). Basically there is something for all. The event is on November 14 (Saturday) at Turner Field in Atlanta.

We are participating on the Cardiac Services team (Team Strong Hearts), and 100% of the money from our registration and any donations we receive will go straight to the Cardiac Research team at Children's Hospital...these are the people who SAVED SAM'S LIFE and who will give him new life again when the time comes for his next surgery.

We are hoping to get a lot of friends and family involved in this. How can you get involved, you say? Well here are two ways:

1. Run/walk with us! Go to the link below and register for any of the events. Strollers are welcome! Everyone gets a long sleeve t-shirt for participating, and kids who race in the two kids races get finisher ribbons and tshirts. When you join, BE SURE TO JOIN THE STRONG HEARTS TEAM so that your money can go to Cardiac Services!! Once on the Strong Hearts team, if you earn an ADDITIONAL 50$ in donations, you will get a Strong Hearts Team t-shirt!

2. DONATE! If you can't be there with us but still want to support Sam's hospital, you can send a general donation. You can either donate on my web page (listed below) or send us a check.

If you can come and race with us, there may be a bonus for you: We are hoping to organize a 'tailgate' at Turner Field for after/during the races to celebrate with family and friends!

We're really excited to participate in this race (we're going to do the 10K) and help out this seriously amazing hospital, and in particular the cardiac services department. These people save babies and kids every day, and are constantly researching new approaches to help extend the lives these children. They already saved Sam once. We are praying that their research will give Sam a chance at the full live expectancy that all of us take for granted. Every dollar really will make a difference!

Contact me if you have any questions!!
My Donation Page
CVS Strong Legs Run Page
Children's Hospital of Atlanta Race Info Page

Another Eventful Weekend

2009-08-09T22:01:00.005-04:00

We had another travel weekend. This time we went to Mobile for the wedding of a friend of ours from high school. Chris had flown to Houston during the week for business, so my mom, Amanda, Sam, and I drove to Mobile on Friday. We got in late, and then I had to go pick up Chris, who flew into Pensacola from Houston. Randomly Chris met up with a friend of ours from grade school in the airport, and we drove him home from P'cola, too. It was a nice surprise, although I wish I had been more awake to have a better conversation...it was 2am when we finally got back to Mobile.

Saturday was Matt Shelby's wedding. It was at the Explorium in Mobile, which is a great place to have a wedding if you have a lot of kids present...or a lot of adults who act like kids. We had such a good time playing in the Explorium, and it was so nice to hang out with friends we have had since 4th grade! The wedding was super sweet, the reception was too much fun, and to top it off, we took the after party to Mobile's newest night club...a dueling piano bar! Sam was present for the wedding and then went home with Chris's mom. But he had a great time meeting our friends...he even loved up on my friend Angela, whose purple dress he was particularly drawn to! A little LSU fan, I guess!

We also went to meet our friend Catherine and Thomas's new baby boy, Thomas Michael. He is so freakin' adorable, and so small! He weighs 8lbs, and yet looks so tea tiny. I can't believe Sam was ever that small! Sam got to meet little Thomas, and his big sister Addie. Addie, who is 14 months, waved at Sam, and Sam hugged on her little leg like he was totally in love! Adorable...

A prayer request: There are a ton of things and people to pray for right now, and it's hard to give you just one. But in particular, my friend from high school and her husband are pregnant with a baby girl who has a trisomy condition. They have been told she will not survive outside of her mommy. They are having a tough time reconciling with this, as anyone would. I think and pray for them everyday. We talked a bit tonight, and like she said, sometimes it is hard to know what to pray for. But Chris and I learned the value of prayer with Sam. There were times when I didn't feel like praying, and times when my mind was too busy to pray. It was in those times when I was comforted to know that there were other people doing the praying when I simply could not. Say a prayer for them and their baby girl, so that when they are too disheartened to do so themselves, they too can know someone else is getting the prayers said!

~Kathy

An Interesting Friday and Redeeming Weekend

2009-08-03T07:10:00.003-04:00

Last Friday, around 4 am, Sam woke up crying. He rarely wakes up crying, so I went to check on him. He had a dirty diarrhea diaper, and I guess it burned his little butt cheek a little. I changed him, got him a bottle, and he happily went back to sleep. When he got up in the morning, I went to change him again. He was dirty again, but this time there was a hint of blood in the diaper. Chris and I debated what to do, since I knew the daycare would NEVER keep him with diarrhea, especially with blood present. 5 min later, Sam made another diaper. This time it was MOSTLY blood. We freaked out.

We called the doctor, but the office was closed. Their nurse answering service took our information and determined it wasn't an emergency but that he would need to be seen ASAP. She confirmed my two fears: this could be resultant from Sam's aspirin therapy, or a bacteria like C. Diff. The latter runs rampant at my hospital on occasion and I would probably quit my job out of guilt if it is C. Diff.

We got an appointment and took him to the Pedi. She said that since he is eating fine, sleeping fine, acting fine, and was happy, it is probably a milk protein allergy. I find this hard to believe. She wants us to switch to soy formula for a while. She also sent us to the main hospital to get a stool sample cultured, so that we can rule out the C. Diff. Sam acted fine the rest of the day, although he still had the diarrhea with the occasional blood spot. We tried the soy...Sam's not a fan. We also decided to narrow his food choices down a bit, just in case it is one of those that is upsetting his tummy. I will let you know the results of the culture when I get them!

As a side note, we saw a horrible wreck right in front of the Pedi's office. Chris called 911 while I jumped out and stopped one of the ladies from getting up and walking around. The whole thing happened right in front of a Chiropractors office (Chris thought that was great) and the Chiropractor stopped the other lady from moving around. We talked later, after the emergency people took over. He was a nice guy. I'm not a fan of Chiropractors but I may keep him in mind if I have back problems with my next pregnancy like I did with Sam.

After being cleared by the Pedi, we continued with our plans to go camping with my family at Lake Martin in Alabama. This was Sam's first camping trip. I was really worried about it being too hot for him, but it stayed cloudy and cool the whole time. Sam swam in the lake and played with his aunt and uncle. He didn't sleep in the tent with Chris and I though, since we were still worried about it being too hot. He slept on his own queen size bed in my parent's air conditioned pop-up tent trailer. He saw ducks, watched the boats in the little lagoon right at our campsite, and took a hike in his back pack. Of course, everyone who saw him told us how adorable he was!

He had a great time camping, and then capped off a nice weekend by cutting another tooth! He cried and cried and cried last night. It was so horrible. Now I wonder if all the diarrhea and stomach upset from Friday had to do with the tooth. Add to that the fact that this 20 lb baby takes half a baby aspirin (when full grown adults take one whole baby aspirin), and I wonder if just a tiny upset may have caused his intestines to bleed a little. Who knows. I just hope the culture is clear!

~Kathy

Great Weekend

2009-07-26T21:26:00.004-04:00

We had a great weekend! We drove to Birmingham to see Chris's cousin, Josh. Josh has battled cancer in various places over the last two years. He had half his lung removed on Thursday. They came to visit Sam in Atlanta when he had his surgery, so Sam HAD to go visit Josh! I didn't bring him the first day we went to visit, since Sam still has this cough from the Lisinopril...I didn't want to bring a kid with a cough into a room with a guy who just lost half a lung. But we brought Sam in today and Josh and his wife seemed glad we did. Sam has gotten to the stranger anxiety phase, but wasn't at all scared of Josh or Kimberly. They both held him, and until he got fussy because he was hungry, he had a great time. Josh was discharged shortly after we left, and is home recovering. We are so happy for him and his wife!

While we were in the 'Ham, we stayed at Chris's sister's house. Sam had a great time with his aunt, uncle, and cousins. Russell kept saying how much he loved Sam. He also mentioned that he wished baby Noah had the same name as baby Sam so he wouldn't have to remember two names. Kim and Jason watched Sam while Chris and I visited Josh and toured downtown B'ham. Even if it's just for a few minutes, it is nice to have time to ourselves. But we always miss our Sammers.

When we left B'ham today, we stopped and had lunch with some of my PT school classmates. Most of them hadn't met Sam yet, so it was fun to introduce everyone. They are seriously some of the coolest people I know. Everyone is doing great with their jobs, getting married, buying houses...it was wonderful to catch up. I really miss them and being with them...I guess when you spend at least 8 hours a day, everyday, for three years, you tend to get attached. I'm crossing my fingers for an Alabama/LSU football game reunion tailgate this year...

~Kathy

Cardio Appointment

2009-07-22T17:06:00.003-04:00

Sam had his cardiologist appointment today. It has been two months, and we had a lot of questions that needed answering. Chris took him to the appointment. He said he was mostly good for everyone and cooperated with the EKG and such. Here are the results of the appointment:

1. Sam's heart sounds good, his lungs are clear, his oxygen saturation is within expected limits, and all in all he is doing remarkably well.

2. Sam's cough, which has lasted since his surgery in March, may truly be a result of his blood pressure medicine (which he started after his surgery). Dr. Cardis said that the medicine is really just 'sprinkles on the ice cream' when it comes to pediatric cardiac meds....as in you don't really need it necessarily. SO he took us off of the medicine to see if the cough stops. GREAT news for us...I hate giving him adult medicine.

3. Sam has been cleared for circumcision. Barbaric, I know, but it actually reduces infection risk in the long run and the fewer infections kids with chronic illnesses have, the better. We will have to go to Atlanta to see a specialist because of Sam's heart, but Dr. Cardis agreed it was time to go ahead and start that process. We had to hold off originally because they didn't want it too close to his first heart surgery as it is an infection risk while healing.

4. Sam's next heart surgery could be pushed back until he is 10! Dr. Cardis says Sam is doing so good and staying so stable that we will hold off as long as possible. Of course, we will play everything by ear and just take one day at a time. But Dr. Cardis's theory is that the longer we wait, the more time we give Sam to live. Once the next surgery is completed, 'the clock starts ticking' to when Sam goes into heart failure and needs a transplant. The down side to this is that we are adding more years to the amount of time that Sam's body (especially his brain) is exposed to low blood oxygen levels. I did some research and there are studies that show kids with heart conditions have increased risk of ADHD and similar learning disabilities, but there are some that show there is no correlation. Only time will tell. I would rather have Sam alive longer than have him be a genius.

5. Vacations officially just be came more complicated. We were planning a vacation to California in December. While there, we were planning on staying at my Grandmother's house in the mountains (approx. 6000 feet elevation). Dr. Cardis said all of that is fine...HOWEVER we would have to have supplemental oxygen. He said the airline will provide oxygen for the plane, but while in the upper elevation we would need to bring oxygen with us. UGH. Sam HATES the nasal cannula thing and the thought of dragging around oxygen tanks freaks me out. We will do whatever it takes though, because we really want to go and I don't want to keep Sam from experiencing things because of this condition. But I have to explain that this makes me incredibly sad about future vacations. My best memories as a kid were camping in Colorado, Utah, and California, usually at REALLY high elevations. I wanted to share that with Chris and Sam. Now it looks like we will have to avoid these places all together. On top of that, how do you recharge portable oxygen units in a campground?!? Chris didn't get really specific with Dr. Cardis, and there is potential that these restrictions are just until he gets through his next surgery. But still, I am really sad about the thought of not sharing the best parts of my childhood with Sam during his childhood.

All in all the appointment went well, and we are happy with Sam's progress and health. In other news, we joined a few heart groups, including a program run through the Egleston Hospital Cardiac Services team. Through them we were asked to send a photo for a casting call! Everyone keep their fingers crossed...Sam might be part of a PSA commercial for congenital heart defects to be filmed soon! I got an email back from the film people who said he was a 'cutie' and they would be contacting us as soon as they had details!

~Kathy

5Ks and Such

2009-07-18T22:47:00.004-04:00

Chris and I just finished a 5K in downtown Macon. Yes, I know...running in the south in July...we're crazy. The weather actually wasn't bad at all, and was probably the coolest day we have had in a LONG time. We walked a couple of tenths but ran (slowly) the rest. Two great girls from my work ran, too. The one in the middle (Stephanie) is leaving to Arizona soon, and I am going to miss her terribly. She's my team OT and she is the best OT I have worked with while at the rehab hospital. Or ever, actually.

Sam stayed at our neighbor's house. He was so funny when we dropped him off. You can tell he is starting to recognize faces as either familiar or not familiar, and he was staring down my neighbor like she had two heads. But apparently after we left he played and flirted with their beautiful granddaughter, drank a full bottle, and fell right to sleep. When we picked him up he was knocked out, and he woke up on the walk back to the house. I thought for sure he'd be up for a while but he fell right back to sleep when I laid him down! What a good kid.

For all those runners, joggers, and non-athletic-philanthropic peoples out there, I want you to know about a run coming up on November 14. CVS pharmacy is hosting a 10K, 5K, 2K family run, and 100 yard dash for kids all to benefit Egelston Hospital (the hospital in Atlanta that saved Sam). We are recruiting people to run, walk, or donate money. All the money we raise will go to the Cardiac Services team, who truly gave Sam a second chance at life. When I get more info, I will post it. I want to get people to run or walk with us...it should be lots of fun for a great cause.

Now...off to my celebratory McDonalds fries!

~Kathy

Nana's Visit

2009-07-12T07:26:00.004-04:00

Sam's daycare closes for one week each year to re-carpet, repaint, and bleach EVERYTHING. My mom came up to watch Sam for us. I'm relatively sure she was in heaven. We got to sleep in, catch up on a movie, and 'train' for our upcoming 5K run. Sam, on the other hand, got spoiled.

Sam HAD been sleeping totally though the night. If he DID wake up, he would fall back asleep within a few minutes without us going up to him. When my mom was here, if Sam made a peep at night she would rush in to spoil him with an extra bottle and attention! I am a little worried about how that might switch up his schedule. BUT on the flip side, she did teach him to eat! He just wouldn't eat for us, and would pitch a fit if we tried to feed him solids. She was really persistent with him and now he bottoms out a jar of baby food in minutes! I'm really happy about that!

Sam will miss the one on one attention from Nana. And Chris and I will miss sleeping in. Sigh.

~Kathy

First Fourth...and First Tooth!

2009-07-06T17:25:00.003-04:00

Sam has been quite busy recently. He has sprouted his first tooth! We noticed it last weekend while we were in Mobile. Today I noticed his second tooth (both on the bottom front)has started showing, too. He has also (FINALLY) started to sit up. He can hold himself up for a few seconds before falling to one side or another. He had his first bath in a tub (since he has pretty much outgrown his sink tub)! He still needs help holding himself up but he LOVES to kick the water around.

My parents come over for the weekend and the Fourth of July. Sam got plenty of attention and Chris and I got to catch up on our movie back log. Sam missed our 'big' fireworks, but he got to see some sparklers, which he loved! My mom is staying for the week and Sam will get plenty of Nana time. Chris and I will get a chance to go running together, see a few movies, maybe go out to eat, and I have an hour massage scheduled for Thursday...ahhh so nice.

~Kathy

Sam Has a Girlfriend!

2009-06-29T20:38:00.004-04:00

We drove to Mobile on Thursday for my dear friend Kathryn's wedding. When I picked Sam up, his teacher told me he has a girl friend! Apparently a little girl who is a few weeks younger than Sam was playing with his toes. Then a few minutes later they were holding hands! Adorable!

Kathryn's wedding was great! Sam came to the ceremony and a few minutes of the reception. He got to meet our friend's baby, Charlie. He JUST missed meeting his future wife, Shannon. Both babies are just a few months old, and Sam looks like a grown man next to them! Fun was had by all, and even though it was super hot, it was a wonderful ceremony and perfect reception.

I would be writing more detail but my mind is too busy. Just recently, I have been reminded over and over how lucky Chris and I are to have Sam, heart defect and all. I have had two people in my extended circle of acquaintances who have lost perfectly healthy babies in the 9th month of pregnancy. Today, a Hypoplastic LEFT Heart baby that I have been keeping up with died suddenly. I don't know how you go back to living your life after such losses. I don't think I would have been strong enough. When the doctor gave us a 50/50 chance for Sam just before he was rushed to Atlanta by ambulance, I told Chris I would die if Sam died...and I meant it. I can't stop thinking about these families and how they are supposed to go on...how do they go back to work, how do they come home to a house full of baby toys, how do they get out of bed? Having a chronically ill baby is NOTHING compared to losing a baby, and I've been close enough to know the difference and to feel just a fraction of the pain they must be feeling. We are SO blessed to have Sam. Even with a rough future ahead, I KNOW we are the luckiest people alive to have him with us. Chris and I feel like we KNOW this...other people with healthy kids THINK they know they are lucky or blessed. We KNOW because we have been to the edge and back. Please say a prayer for these families and families who have been through similar experiences.

~Kathy

Father's Day and 6 Month Shots

2009-06-23T19:59:00.002-04:00

Chris had a good First Father's Day (as far as I can tell, anyway)! Sam and I made him his requested breakfast: cinnamon rolls and a tomato basil omelet. We bought peg board and tool holders to complete (or almost complete) Chris's work station in the garage. I have to admit it looks pretty good, and clears out some much needed shelf space!

Sam went to the pediatrician for his 6 month check up. He weights 17lbs 10oz (30%), is 27 inches long ( 55%), and has a head circumference of 17.5 inches (60%). She said he looks great! I asked her about the need for therapy and she thinks he is doing just fine, and doesn't need anything at this time. We also asked her about this chronic cough. She doesn't have any experience with Lisinopril side effects, so she wants us to ask our cardiologist. She said his lungs are clear though, and said if the Lisinopril isn't the culprit, that we can try a prescription antihistamine (in case this is allergies). We'll see what Dr. Cardis thinks. I actually thought the cough was getting better last week but all the sudden last night it came back with a vengeance. Needless to say, Chris and I were very tired this morning.

Sam also got his 6 month shots. It was tragic. He survived though, and hopefully we won't have the fever like we did last time.

Exciting news: A Publix store is opening TOMORROW right across the street from our neighborhood. We can't wait.

Sad news: I doubt I will make it to Kathryn's Bridesmaid Brunch, rehearsal, or After Rehearsal Dinner. I worked a couple of weekends, and knew I should get compensated a weekday off of work. I guess I requested the date too late, and now they can't find coverage (someone to take my patients for the day). I'm super sad. And once again it will be a whirlwind weekend in Mobile where we drive in just long enough to NOT get to see anyone and then drive right back to Georgia. I was also looking forward to taking a day off of work for something OTHER than a Sam Episode. The wedding should be great though...I hope my dress still fits...

~Kathy

Pool Time!

2009-06-15T22:06:00.003-04:00

The last time we were in Mobile, my mom bought Sam a baby pool. We finally got a chance to blow it up and use it today! Sam was a little apprehensive at first but he loved it in the end. He's getting so much better at holding his head and shoulders up, and we noticed today that he is really getting to where he can support himself momentarily in a sitting position.

One of Sam's teachers said she felt like Sam was behind with his motor skills. I knew this, but it felt kind of harsh to hear it come from a relative stranger. She thinks (in her non-medical opinion) that he may need therapy. I personally don't think we are at the point of needing therapy yet. I think he lost a month of development around his surgery, and I'm sure he'll catch up. He has a pediatrician appointment coming up so we'll see what she thinks.

Sam still has a cough. He's had it for about 8 weeks now. We discovered that his blood pressure medicine (lisinopril) has a side effect...a cough!! And he's been on the lisinopril for about 8 weeks. We'll see what the pediatrician thinks on this one too, and maybe we can change his meds and nip this thing for good!

Sam has found his voice. He LOVES to make a super high pitch squeal (like when you pinch a balloon opening). He especially loves to do this in the middle of church! He has also started to laugh a lot more. He laughs at Chris mostly...he's definitely a Daddy's boy.

On an unrelated note, I'm tired of lugging Sam's baby fat around. Not HIS baby fat, but the fat he left on me after he was born. I started Weight Watchers. My sister in law is having great success with it so I thought I'd give it a try. I looked at a few gyms in the area but they are WAY too expensive and I really don't have time. When Sam gets older and I feel more comfortable leaving him in the gym daycares, maybe I'll get a membership. For now, kickboxing videos and Weight Watchers will have to do.

~Kathy

Funeral

2009-06-03T23:10:00.003-04:00

Chris and I drove BACK to Mobile (the third time in 12 days) yesterday. We woke up early this morning to attend my grandfather (Daniel Scully)'s funeral. My mother's siblings and their children came in town and got to hang out with Sam before we made it home. I think Sam had a good time in Mobile without Chris and me. I'm relatively sure we didn't cross his mind once...

The funeral was very very nice. I didn't expect so many people to show up, and Deacon Pryor did a great job with the homily. An honor guard met us at the cemetery. I totally thought it would be just a bunch of punk ROTC high school kids but it was the cutest group of little old men! They did a great job and really topped off a wonderful ceremony for a wonderful man.

The drive back to Macon wasn't too bad...Sam was the best he's been so far! I'm only awake now because I have no pants clean for work tomorrow, and I'm waiting on the washer to stop! The photos are of Sam hanging out with friends/family over the last couple of days.

~Kathy

Good and Bad

2009-05-31T22:28:00.003-04:00

We drove back to Mobile on Friday to attend a birthday/anniversary/graduation party for Chris's brother and parents. Sam did great on the drive but got a little too much stimulation too late in the night once we got in town and it took us a while to get him to sleep. He got to see all of his cousins on Saturday at the party, including his cousin Noah (in the photo) who is just two months older. Good times were had by all, and Sam did great with all the new faces.

Sadly, my Mother's father (Daniel Scully) passed away early early Saturday morning. He had been sick for some time, and while this is a sad event, it also brings some peace to our family knowing he is no longer in pain. The funeral will be Wednesday at 10am at St. Mary's in Mobile. I don't have a ton of vacation saved up at work because of Sam's surgery, so we drove back to Macon tonight and will drive back to Mobile for Wednesday to attend the service. Since the drive back and forth in such a short amount of time would be too hard on Sam, we left him with my parents. They were thrilled, clearly. I'm missing him a bit, but we'll see him again in 48 hours! It will be our third trip to Mobile in 12 days. I hate the reason for our 3rd visit, but I'm excited to see some family that we haven't seen in a while, and I'm excited for family to meet Sam.

I'll post more photos when I get my camera back (I left it in Mobile so Mom could take photos of Sam with our family as they arrive in Mobile).

~Kathy

Much Needed Update

2009-05-26T20:16:00.003-04:00

It's been a few weeks...time for an update!

Sam is doing fantastic! He had a cardiologist appointment last week. He weighs 16lbs 1oz, and is 26.5inches long. Dr. Cardis ran an EKG and an Echo. He said everything looked great and was functioning as best as could be hoped. He took us off the Lasix entirely (finally), but we will stay on the Lisinopril and Asprin indefinitely. He is going to start spreading out our appointments (the next will be in 2 months). He thinks we will make it a long time before we have to do the Fontan surgery. The only thing I hated was he said, "We want to give you as long as we can with him before that surgery." I don't know...draw your own conclusions for the many ways you can take that statement. But on the whole, Sam's heart is doing wonderful.

Sam's cough, however, will NOT go away. He has been coughing for almost 5 weeks now. No fever, not really even a runny nose, but he coughs and coughs and coughs all day and night. Especially at night. He will spend literally hours coughing ever 2 or 3 minutes, like he can't really clear his throat. Interestingly, this rarely actually wakes him up. It DOES wake Chris and I up...and makes sleeping really difficult for us. The doctors office originally told us there was nothing they could do for him if he didn't have a fever. You can't give kids under 4 years old ANY cough medicine anymore. But I'm getting super sick of this and plan on calling again tomorrow.

We drove down to Mobile last weekend so that I could attend a Bachelorette party for one of my bridesmaids. I had far too much alcohol but hanging with the girls was wonderful. Sam spent his weekend between grandmothers' houses. He was pretty happy the whole time, and didn't seem bothered by all the 'new' faces and people handing him around. He did great on the drive TO Mobile, but he was a total butt on the drive home. My sister came back to Macon with us, so she got to handle the crying baby in the back seat for a 7 hour drive that should have only taken 5.5 hours.

We are getting ready to do it all again this upcoming weekend. We are going BACK to Mobile for a graduation/anniversary party at Chris's parents house. Hopefully Sam will behave! Enjoy the new photos!

~Kathy

Sam's First Party and Mommy's First Mommy's Day

2009-05-10T21:44:00.003-04:00

Yesterday we went to Sam's first birthday party. Our neighbors' beautiful little girl turned 3. They had a big party in their back yard, complete with McDonalds burgers and Chick-fil-a nuggets (kid and daddy food essentials). There were a ton of kids there, and the birthday girl got WAY more presents than I ever got on any one birthday! She was clearly having a blast! Sam had a good time too. He met a bunch of new faces, including the birthday girl's 3 month old adorable cousin! My clinical instructor from one of my internships happened to be there (his daughter was an invitee). It was really nice to catch up with him and hear about his new clinic.

Today was Mother's Day. Chris kindly got up with the baby in the middle of the night, and then again when he woke up at 7am. While I slept, Chris and Sam made breakfast for me. We all went shopping for new clothes. Sam ended up with the most swag, naturally. We went to church. Sam has learned that he has a voice...and he decided to use it....ALLLL during mass. The obstetrician who delivered Sam sat right in front of us. We spoke after, and she was so surprised at how chubby Sam is getting! We went grocery shopping after church and spoke with our super sweet pharmacist, who is expecting a little girl in September. She was surprised, too, at Sam's growth. He's just thriving...what can I say!

It was a good weekend. I hate that it's over already. I hope all the momma's had a good Mother's Day. I have so many friends who are new mommies this year...I hope they especially had a good one! Say a special prayer for new mommy Christina (Catherine Cannon Arensberg's big sis) who spent her first Mother's Day in the NICU next to her first baby. Mom's go through a lot for sure, and she has already been through more than any mom I know.

~Kathy

First Fever

2009-05-06T13:58:00.002-04:00

Sam had his first fever today. I'm actually pretty impressed we went 5 months without a fever. And I'm pretty sure this one isn't because he's sick. He got his 4 month vaccines yesterday. (We had to skip the 4 month vaccines at 4 months because he was fresh out of surgery...we are now trying to make up for lost time!) He woke up warm, but not feverish this morning. He was, however, super cranky and really didn't want to wake up at all. I brought him in to school anyway since he didn't have a fever. Naturally, school called an hour later saying he had a 100.2. Their rule is when you hit 101 you have to take your baby home. They were just giving me a heads up that his temp was rising and that I might have to pick him up.

SOOOO by lunch I had to pick him up! But now that he is home, had a warm bottle and a dose of Tylenol, his fever is reducing. He is napping now, and I feel pretty confident he'll feel fine by tonight. He didn't react this way to the first vaccines, but apparently it's really common for kids to get a little feverish. Poor baby...

On a more positive note, Sam is now sleeping in his own room! Now that I don't feel like I have to keep a close eye on him due to low oxygen, he has been moved to his crib in his nursery at night. He sleeps great up there, up to 11 hours at a time on occasions! And while it is nice to have our room back to ourselves, I can't help but wake up and stare at the baby monitor sometimes in anxious paranoia, just waiting for a little cry to come over the speaker.

These photos are from the weekend. Check out that battle wound on his chest! The girls are gunna go crazy over that scar when he's older!

~Kathy

So Proud!

2009-04-25T21:52:00.000-04:00

I just had to drop a quick note and say that Sam just fell asleep completely by himself, without a peep! You just don't know how proud we are. Just weeks ago (presurgery) it would take hours of Chris and I walking and rocking Sam to get him to go to sleep. Since surgery, it hasn't taken longer than about 15 minutes for him to put himself sleep once I lay him in bed. And tonight he was totally awake, I laid him down in bed, tucked him in, and walked out....and straight to sleep he went without a single noise. I love him.

The photo is from today. Chris, his mom, and I planted some new flowers and such in our front flower beds. Sam hung out in his bouncer and watched. One of our great neighbors came by and talked for a bit. Their beautiful little girl (who is almost three) apparently prays for Sam every night! AND they told us they are expecting baby number two!! We are super happy about that...Chris is hoping it's a boy so Sam has a playmate!

~Kathy

Doctor's Visit

2009-04-23T21:39:00.000-04:00

We had a visit with Sam's cardiologist today. Sam did great this time, and stayed still, quiet, and smiley through the whole thing! Everything looked great! The cardiologist is decreasing the lasix a bit, but the blood pressure medicine stays. In fact, the blood pressure medicine is apparently a forever thing. He also started us on aspirin, which will also be a forever thing. This kind of bothers me. Not that it's difficult to give him medicine. I just hate the thought of putting medicine in his tiny body and him being on any medicine long term. I don't know...I guess whatever keeps him happy and healthy is fine.

Chris's mom is in town so she got to come. The cardiologist was great and spent a lot of time talking to us and filling us in on the plan of action for Sam. He said that even though the surgeon said we would have Sam's next surgery at age 2, the reality is that we will wait as long as we can. He said that could be anywhere between age 2 and 6. That's great news to us! The bigger, the stronger, the better!

He also talked more about long term stuff. Once again there really isn't a lot of long term data for the outcome and side effects of these surgeries. Once Sam has the second surgery and officially has a "Fontan Circulation" system, he will be at risk for side effects involving random organs and other such things. Dr. Cardis said that there is a wide belief that all kids with "Fontan Circulations" end up with heart transplants at some point. Scary. But we knew this coming in. It's why we saved his cord blood. We're placing our bets on some pretty amazing stem cell research (NOT embryonic stem cells...cord blood is stem cells too) and technology to save his life some day...and I have a feeling it will. If we can make it another 20 years before we need a transplant, and current data says we have a good chance of that, then there is no telling what new technology will be available.

All in all, I am slowly starting to feel like Sam's life will be longer than we were originally prepared for by our doctors. And not just long, but full AND meaningful. You will never know just how warm and uplifting that realization has been for us.

~Kathy

Surgeon's Follow-up

2009-04-15T19:20:00.001-04:00

We drove to Atlanta today for the follow-up appointment with the surgeon. Sam got chest xrays (which he didn't like), and then got a quick look over by the PA and head nurse. They took off his steristrips and took out his stitches (which he REALLY didn't like). His incision looks soooo clean! There is barely any scab left, and the scar is so thin and smooth feeling. The surgeon came in and looked at Sam. He said he looks fantastic. The surgeon estimates that Sam's next surgery will be somewhere between 18 and 24 months of age. It certainly should not be an 'emergency' situation like this one was, though! Until then, our only instructions from the surgeon was to "treat him like a normal kid!"

We have been kind of impressed with Sam's development over the last two weeks since the surgery. I don't know if it is BECAUSE of the surgery and subsequent higher oxygen levels. Sam is using his hands and arms SOOOO much more. He sleeps a million times better at night...he is getting 8-9 hours at a time now! Actually getting him to bed has become a breeze. After his last bottle, I let him get to the drowsy stage and then just lay him in his bed...he does the rest. He is far more alert, and smiles at everything. He is just a much happier baby all around. Don't get me wrong, he still has his cranky butt moments. But we kind of feel like he is the baby that we always imagined. I don't know if low oxygen pre-surgery had anything to do with it, but it's hard not to blame it on that a little.

The bunny ears are from Easter (clearly). He wasn't too happy with them on his head but I HAD to get a photo of him with bunny ears!!

~Kathy