As we come to the close of our stay here at Vanderbilt, it occurs to me that our journey has just begun. Ty has won one tiny battle against CHD, but for him the war rages on. Our little heart warrior still has much to accomplish.
We have gotten so many great reports and to look at Ty in clothes, you'd never know his heart was working so hard! His little feeding tube coming out of his nose is the only indication that he's not the perfectly healthy boy that we had hoped for. He is so much more! He is a strong baby boy who fights with every beat of his heart!
Ty has had his aorta repaired and bounced back from open heart surgery at day 9 of life. What he still as to contend with are the results of that coarc repair and the remaining defect.
I want to share what Ty is still fighting because I covet continued prayers. So many people have been so faithful in praying for our precious son and we are grateful and have seen blessing upon blessing because of those prayers. I ask that you continue to pray. I simply pray for God to heal Ty's heart and for him to be a healthy boy. Here are the specifics of what he's up against:
Ty is still on 2 diuretics to help him get rid of fluid that builds up in his system. This is a very common side effect of open heart surgery. He will slowly be weened off of these medications. He is tachypneic - his respiratory rate has been consistently high and occasionally his little head starts bobbing when he's really working to breath. This burns extra calories and we sill aren't sure why he continues to have this issue. They are running a test today to rule out diaphragm paralysis (update: his diaphragm is just fine). The good news is, he always seems comfortable and it doesn't seem to be bothering him, so this is something we will likely just keep an eye on. He can't tolerate full oral feeding, so he gets a small 10ml by mouth every 3 hours followed by the remaining 56ml through a feeding pump. We'll be learning to put in a feeding tube and have already learned how to operate the pump (prayers for mommy and daddy on this one). He'll be slowly weened from the feeding tube - for some kids it takes days and for some it takes months. Because of his tachypnia, they are being extra cautious - not wanting to overly tire him out with feeds when he's already working a little extra hard to breathe. His discharge echo had some interesting findings. There is a flap of tissue kind of hanging into the aortic arch where his repair was done. This is causing the blood flow to be turbulent. This is something else we just watch and hope that as his tissue grows to encompass the patch that was used on the aorta that it will grow over this flap as well. In addition, his pulmonary pressure (blood pressure going to his lungs) is higher than the rest of his pressures. The medication used to treat this would cause his AVSD, that has yet to be repaired, to worsen, so it is something that we will just have to watch. Because of his existing AVSD (hole between his upper chambers and leaky valve) he has an enlarged right side of his heart. We are told after his AVSD is repaired, it will level out to be more balanced with the rest of his heart. In addition to his little heart, he has a genetic mutation of the y chromosome that may (or may not) impact him later in life as far as being able to have children of his own.
With all of the aforementioned issues, they are planning (here's hoping nothing changes) to send us home this weekend. This is why we need prayers and why it dawned on me this morning that our journey has just begun. As bad as all of that stuff sounds, it is all mild compared to what he has already been through and accomplished. God has brought us so far and we have no doubt he will continue to walk with us each day. We are so excited to bring Ty home and so nervous as well.
So here are some words of warning to all of our friends and family who can't wait to see Ty and hold Ty and love on Ty. Please bare with us. Please be patient and understand. We have been through the wringer and have much more in our future, including another open heart surgery. We are also coming out of an ultra-protective environment and have been educated on all the "risks" out there and precautions to be taken when bringing home and caring for a heart baby. So, be prepared loved ones. Chris and I are already a little over-protective when it comes to our kiddos and now we are shifting into high gear! We'll be heeding every word and taking every precaution. Please don't even think about suggesting a visit if you or your kiddos have been sick, exposed, or recently immunized. Be prepared for hand washing... like scrubbin' in for surgery kind of washing...and blanket barriers, and, well, everything short of putting on a hazmat suit. You might even be issued tutorial on how to hold, where to touch, and what to avoid to keep him comfortable - his little chest will take a full 6 weeks to fully heal. Also know that we will probably be living like hermits for a few weeks, so if you want to see us, or him, you'll most likely need to come to our neck of the woods. We have been in the hospital for 23 long days and counting - when we get home we plan to stay a while. We've been advised to keep him out of indoor public spaces as much as possible for as long as possible. Ty will not even be allowed to get his own immunizations until he is cleared by cardiology at a future follow up date, so we will be on major germ patrol! I know you'll understand and would do the same for your own kiddo.
The good news is, as over-protective and slightly paranoid as we will be, they are sending us home with everything we need to keep our little guy safe. I know many parents have joked that they wish kids came with an instruction manual. Turns out, when you have a heart baby, they do! Mommy and Daddy got classes on how to care for him and Ty will come home with lots of instructions, a feeding pump, a pulse-ox monitor, and even a home health care nurse to visit and check in on him for a few weeks! It's a different experience for bringing home baby, but we'll take it.
The cardiologist on service this morning said we'd probably go home "in the next few days." The case manager, after rounds, pulled me aside and said she was "the needle in his side" and she would keep poking him in hopes of getting us home tomorrow. So, here's hoping, that tomorrow I will be updating you from the comfort of my own couch with our baby boy by my side. For now, I'm spending another long and really short day at Vanderbilt - that's just how the days are when you are here.