Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Sunday, June 24, 2012

Trey's 1st Birthday

Trey is officially 1 year old today!  So hard to believe that my youngest (and last!) child is now ONE!

1 year ago today, on a Friday, I gave birth to a "healthy" 7 lb 8.6 oz, 19 3/4 inch baby boy at 9:10 pm.  

The boys were so excited to have a little brother.  Especially Bryce... he waited at the hospital for a long time so that he could finally meet his youngest brother.  He couldn't wait to see what color his hair was!  We determined that he would probably be a red head like him but it was difficult to figure out since there was very little hair!

We went home on Sunday with our healthy baby boy.  Little did we know what the next year would have in store for us!

1 year later we celebrate his birth.  While this day is a big deal... I think his surgery date might be more significant for me.  Today is the day he was born but September 14th is the day he was saved!  We celebrated today with family.... both sets of grandparents, his aunts & uncles, his brothers and us.  We had dinner and dessert on the deck.  The weather was gorgeous and we had a great celebration!

Trey didn't quite know what to think of the candle.  We had to hold his hands down because he wouldn't stop reaching out for it.  I think the entire thing just confused him!  I don't know why we did it though because it's not like he even knew to blow it out.  Really, we just did it for a picture I guess but then of course we had to restrain him so it's not like the picture turned out that great anyhow!

He really didn't know what to do with the cupcake at first either.  It took him awhile to figure out he could put it in his mouth rather than just play around with it.  Surprisingly he puts everything else into his mouth before playing with it though!

He finally figured out that it could go in his mouth and it tasted good!  Aunt Kari (David's sister) made the cupcakes because I cannot make cupcakes for the life of me.  I have no idea what I do wrong but every single batch I have ever made end up sticking to the liners... and I've tried every kind of liner out there!  So many thanks to my sister in law for making the cupcakes!  Trey is still on his soy formula and we are unsure if he can have dairy but I made an exception for his birthday.  He didn't seem to have any reaction to it so hey, hopefully the transition to milk in the near future will be an easy one!

Bryce and Cole had a blast opening Trey's gifts for him.  Trey had no desire to do that for himself.  He was way more interested in eating the wrapping paper.

I am just so incredibly thrilled that my baby boy was here to spend his 1st birthday with us!  I look back and this year has been unbelievable.  He has gone through SO much this year.  It's amazing that his little heart is on the mend though and that we will be able to put a lot of this behind us pretty soon!  He will always have the scar on his chest and will have to go to the cardiologist annually but his heart is on its way to full recovery!  God is absolutely amazing.

My boy is amazing.  Every little thing he does amazes me and I am so glad that he can continue to do so.  I pray that he has a joyful future ahead of him filled with happiness and excitement.  I pray that he grows up and is able to do whatever he puts his mind to.  I have so many hopes for this little boy.... but right now I am extremely content to just watch him play with his new toys!!

Friday, June 8, 2012

Grieving for *those* parents...

I've been thinking lately about what we have gone through in the past year with Trey.  There were so many signs before he was diagnosed that we should have picked up on but didn't... and I don't fault us for that, we didn't know that signs of heart failure and we certainly didn't expect it in a newborn that was weeks old.  I've been thinking of when we first went into the Montgomery General ER and how he couldn't breathe, nor could they get him to stabilize.  It was an insane scene, so surreal... almost like I was watching it on ER, the TV show instead of living it.  I remember hyperventilating and not being able stop crying.  I couldn't even stay in the room and watch.  There were so many people running in and out, I just didn't want to be in anyone's way.

I then fast forward to the day of his diagnosis.  The shock of hearing something was wrong with his heart.  I remember thinking, crap, how am I going to find time to go to doctor appointments and schedule surgery?  I didn't realize that we weren't going home.  That Trey was going straight into the ICU until his surgery could be done.  I remember not being able to contact David and let him know what was happening because he was teaching a class at Johns Hopkins.  He knew I was at the ER but we had been there before and we weren't too concerned.  In fact, I told him not to leave work to come to the hospital.  I told him to come after his class.

I think about us then as if it wasn't really us.  I grieve for those parents.  I want to just hold them and tell them it's going to be alright.  I think about those parents and want to take it all away.  It's so... odd.  I look back and remember going through the motions.  I remember people asking me how I was handling it... they couldn't imagine what I was going through.  At that time though, you just do it.   There's no choice.  I know I've said that before... but now we're at 9 months post surgery and wow, I am starting to not even be able to imagine how I did it.  My heart aches for that mother... that mother that watched her child just bleed.

Yet, I don't want to forget one single thing about my experience.  I just would rather not remember in third person.  I want to be able to remember it all in first person.  I want to remember the incredible faith I had during that time.  During the entire journey not once did I doubt God and his plan.  During the darkest times I knew God was carrying me through, I had no doubt that he was supporting me.  I have no idea why this happened to us and I still don't... but it was for a reason.  I may never know what that reason was but there is a plan and God is great.  Now that we're "normalizing" it's hard to keep that incredible faith up all the time.  It's definitely there.  God is steering my life but I notice that sometimes it's hard not to want to take over myself.  When we were in the hospital, I couldn't take over... I had to surrender all.  God had to carry me.  Now, not so easy.  I have to stop myself now and remind myself that things will work out.  Whether the house is clean or not... we will be ok.  God will bring us through this hectic time of having 3 young ones (now all mobile) and things will work out just fine.  We'll survive and be happy.  If only I could have that extreme faith from the hospital back to help me through these mundane things (laundry, dishes, messes).  What I experienced in the hospital was amazing.  I grieve for *those* parents but gosh, I also envy those parents.  God showed me how strong I really am and in the end... showed me how incredibly awesome He is!


Friday, June 1, 2012

8 1/2 Months Post Surgery - 11 months old

Things here have gotten extremely busy and I'm not totally sure why.  I mean - I know why... but I don't know why I am finding less time to get on the computer now than when Trey was in the hospital/first home.  I think back then I was just running on auto-pilot.  I look back and wonder how, after I got home (anywhere between 8 and 10 pm), I would find time to get on the computer, do anything at all to the house or even watch a TV show.  By the time the kids get in bed now, all I can think about it getting myself ready for bed!  We usually watch 1 TV show and then it's off to sleep we go.  I find it so hard to do anything at all on the computer anymore.  I have a ton of pictures that I keep downloading from the camera in a temporary folder on the computer, just waiting to be sorted and looked at.  I used to come home every night and go through my photos from that day right away.  Not anymore!  Plus, Trey is doing so well that there really isn't that much to update anymore... thank goodness!

Trey is now about 20 lbs - he's my BIG baby!  Neither of the other boys were even close to 20 lbs at almost a year.  Which.... I can't believe it... but in 23 days Trey is going to be 1!  It'll be so much easier to tell people his age... one!  What's interesting now is that when people do ask me his age... I have to stop and think.  I usually think of his post-surgery "age" first and want to say that... then I realize, that's not his age!  That's how I think of him though, his surgery date is more of his "birthday" for me now.  I can spit out his diagnosis date, September 12, so much faster than I can his birth date, June 24.

He just started crawling around towards the end of last week.  He had been shimmying around a lot prior to last Friday but I would say he all of a sudden became somewhat quick on Friday.  He just boggles my mind.  There's something new everyday now and he is SO happy about it!  His speech therapist and occupational therapist were here yesterday and they were amazed at how much he's changed in just 2 weeks.  He just seems  more composed too - more "organized", which makes him happier.  He seems to be able to figure things out quicker now.  He still has some meltdowns but I can calm him down by putting 1 hand on his stomach and the other hand on his back if I can't figure out what the reason behind the meltdown is (hungry, sleepy, etc).

He still isn't eating the greatest.  He'll suck 150 mL out of a 200 mL bottle down but has recently started refusing the last 50 mL.  I think of everything in mL now... that roughly 4 out of 6 ounces for those that don't!  According to the calculation rule the Gastro dr game me... he's taking in enough to be hydrated but not enough calorie wise at all.  Yet, he still seems to be gaining weight, so again I'm not toooooo worried.  I just don't want him to get too behind that he decides he doesn't want to eat again and we're back to discussing a tube.  We go back to the Gastro on June 14 so we'll see what she thinks then.  Since he's turning 1 I have a lot of questions for her!  He's still on soy formula so not sure if we'll transition to soy milk, stay on the formula for a bit longer or try a transition to cow milk and see how he does.  He's eating puffs now too but has no desire for any other finger foods.  He also gets the puffs stuck in the back of his mouth a lot and gags... this causes him to throw up.  It doesn't happen all the time... but definitely enough that its a pain.

The other problem is that he's really constipated.  We give him a tsp of Maalox every night in his last bottle and he'll go days in between bowel movements.  If we don't give him the Maalox it involves a lot of crying and bleeding when he has a movement.  It's not pleasant.  Surprisingly, the constipation doesn't seem to make him too fussy unless he's busy going.  That's what is the worst right now... the painful constipated bowel movements.  That's something else we'll have to discuss on the 14th.

Happy boy on Mother's Day!
He loves the water!  I think I see some orange fuzz up there on that head!

On another note, please pray for 2 other heart babies that have been placed on my heart.  Over spring break a mother emailed me that had found my blog.  Her son, Liam, had ALCAPA as well.  His story was SO similiar to Trey's.  I haven't heard from them lately but they've been in my prayers.  He had his surgery in March and the last I heard in April is that he was "stable" but had some feeding issues after being discharged from the hospital.  His were so severe that he became dehydrated and had to be re-admitted.  Please pray for Liam and his family.

Another baby, Jaxx, is a local baby that was born a little over 3 months ago.  He has Hypoplastic Left Heart Syndrome (HLHS) and has had some major complications along the way.  HLHS requires a series of 3 surgeries in order to rework how the heart circulates blood through the body (since the left side of the heart is either very small or missing).  Jaxx had the first surgery but then had some complications.  He was transferred from Children's Hospital in DC to Pittsburgh, where it was thought he may need a heart transplant.  In Pitt, they ended up doing the 2nd surgery instead of the transplant and so far he has been doing "ok".  He was on ECMO for awhile but was just weaned from it on Tuesday.  Prayers are needed for a smooth recovery for him.  Thank you!