I'm bad at blogging...and other life updates.

So this is by far the longest I have gone without a good update.  We've been busy, that's for sure.  But I really have no excuse.  So here, in brief, are the biggest updates.

1. Sam was teetering on the brink of needing the Fontan surgery now vs. waiting a bit longer.  After some much better oxygen saturation numbers, we opted to wait.  He had a 3 month check up today, and remains stable.  He was SUCH  a big boy, and not only bravely did everything he was asked, he did it by himself, without us holding his hand or motivating him in any way.  Such a big boy.  For now, we will just live 3 month visit to 3 month visit, and hold out on the Fontan as long as is safe.  I am nearly certain he will have it done before Kindergarten (a full 2 years from now), as we want him to be able to fully participate in all of the activities his classmates will be doing (PE, field days, etc).  But for now, we just love him for who he is, which is a pretty darn amazing, miraculous boy.

2. Sam's GI problems seem to be leaning towards a diagnosis of Celiac Disease.  We are still waiting the results of a genetic blood test.  I will update as soon as I know!  I'd be fine with this diagnosis, but the kid only eats bread so I'm not too sure how we will work out the diet change!

3. Luke turned 1 year a few weeks ago.  I just can't believe it.  His baby-hood flew past.  He is crawling like a mad man, pulling up, cruising sideways on the couch, and standing independently now.  He will walk if you hold his hand, and I feel sure he will be walking by himself very soon.  Physically he is 100% my clone.  He has a handful of words and a few funny tunes that he has mastered.  He babbles constantly.  He bites (oops).  He and Sam L O V E each other.   Aside from recent back to back to back ear infections and some rough teething moments, he is a really good, really playful kid.  I can't imagine Sam without him or him without Sam. 

4.  I had to leave my job at the pediatric clinic due to an unreliable patient census.  With two kids now, we just need more steady income.  I am back at the adult inpatient rehab clinic and things are going well.  Except I miss those kids.  I keep up with a few of my favorites still, and melt when I see any new photo of them.  One will be heading to Atlanta in July for his open heart surgery, and I have great faith that not only will he fly through the surgery with ease, but that this surgery will make an enormous difference in his physical development.  Say a prayer for this sweet one and his family!

5. I worked super hard from January until May and lost 20 pounds!

6. Then, I found out I was pregnant!  Yes...number 3 will be here in early January!  We were shocked but plenty happy.  Sam is 95% sure it's a sister for him....we shall see.  I had no pregnancy symptoms with the first two, and have had none with this one either.  We will be going to Dr. Cardis around 25 weeks for a fetal echo, as the chance of having a child with a major heart defect does increase slightly vs the average person once you already have a child with a major heart defect.  And my plan is to gain the least amount of weight as is safe, and I have my OB's blessing.  So all my hard work to get skinny and healthy is not lost! 

I'm sure there is much MUCH more that could have been updated over the last, oh...4 months or so.  I'll try to do better! 

~Kathy

The Last Month Or So...

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

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