No Right Click

Tuesday, December 10, 2013

Noah's Heart

Yesterday Noah got a heart catheter done.  Daddy finally got to see what a rockstar Noah is at the hospital!  He did so well for the whole 13 or so hours we were there.  He has also made a few nurse girlfriends just in the three visits we've had at CHOP. ;)

Nora spent the whole day with us in the hospital, too, and was a rockstar in her own right.  She gave our nurse lots of laughs with her giggle fits. :)

Chillin' in her little cocoon :)

Noah's catheter was smooth.  We found out his pressure levels in his lungs are okay, which is great news!  So, the pulmonary artery band he got when he was 1 is working.

It ended up being a really long day because Noah's oxygen levels never got back up to his normal point (which is already low to begin with), so they had to monitor him for longer than planned.  They ended up letting us go home late in the evening even though his levels never went up.    

Noah is in recovery today. Poor little guy was hit hard by the cath and the meds they gave his tiny little body.  He also had an allergic reaction to something from yesterday.  And on top of that, little man is all congested.  But he's quite the trooper and is sleeping the day away.

We don't have any answers yet about whether heart surgery is possible.  Basically it will be up to the surgeon, but we are hopeful.  Since the pressure in his lungs is okay, that helps make surgery a possibility.  But his left ventricle is very small and only has 1 muscle in it (instead of the 2 muscles it is supposed to have), so the question is if his right and left ventricles are divided surgically (currently he has no walls separating the four chambers of his heart), will the left one be large enough and strong enough to pump blood?  Since this surgery is typically performed in the first 6 months of life, Noah's case is much more complex.  His oxygen rich and oxygen poor blood has been mixing in his heart for five and a half years.  Also, they don't know how his other organs will respond if they do the surgery.  The cardiologist did tell us if he does have surgery, medically it will be a high risk surgery (as in chance of death) because of his down syndrome.  We're not sure if he just has to tell us that, but either way it was definitely hard to hear.  The nurse didn't seem as worried about that but did say at conferences they teach that down syndrome cases are high risk.

So, we have some big decisions to make in the future.  Surgery is not an immediate need, though, which gives us some time.  We should find out in the next few weeks whether the surgeon is willing to perform surgery and we will go from there.

Hanging out in our hotel the night before Noah's catheter.
You can't tell from the pics, but the kids loved the hotel! 

While this is all hard for us and we've shed lots of tears just talking about it, we are amazed at God's grace in preparing Noah for all the hospital appointments.  We were worried about how all this time he will have to spend in the hospital will affect him attaching to us.  But Noah already started attaching to us what felt like pretty early on while we were still in Eastern Europe.  He expressed his needs to us and wanted to be held a lot.  He changed so quickly from the hardened, unhappy boy who didn't want to be touched we met the first time we visited the orphanage into a happier, silly boy who craves affection and attention.

One of the sweetest moments during his time in the hospital yesterday is that when I couldn't pick him up (due to all the wires attached to him), he reached over to hold my hand.  Heart melted. :)  God has worked so much in Noah's life and helped him to trust us enough that he is comfortable in a new environment, even in the hospital when we are by his side.  He lets us reassure him and comfort him.

We're thankful for how the Lord helped Noah in the hospital and we are thankful to be home now.  We're especially thankful for small gifts, like hearing Noah giggle when we walk in the house and he looks around and realizes he is back home. :)

Thank you for all of your prayers!


  1. Thank you for the updates on your adorable kids! I also went to Penn State and found your blog through ReecesRainbow. I am so excited to get to follow along and see how they are doing now that they are home! :)