3rd Birthday and Continued Medical Dramas

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!

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

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

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

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

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!!

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!

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!

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!

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.

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

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

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

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...

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

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

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

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

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

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