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....

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!

1 comment:

  1. He is so so cute! And I cant believe he's almost a year!