So after that terrible Sunday, we spent the next few days in shock trying to figure out what exactly this meant. What it meant for his future, for our future.
There were so many things up in the air. They told us he would need surgeries, but no one wanted to discuss or explain what these surgeries were because "why plan for it - you can't take a crashing baby to the OR". Well, that's true - but at the same time, what on earth was happening?
It was hard enough to deal with the fact that I didn't have a baby at home, I had a baby at the hospital. A very sick baby. A baby who might not be the same after it is all said and done. All while wondering if I would have a baby to take home in the end?
They explain that the only thing that was keeping him alive was the PDA vein that was open and allowing blood to flow through his heart. He has a very small aorta, combined with no left ventricle there was no blood pumping to the body. A few days after birth is when the PDA begins to close on its own. And when that happened is when he started crashing, that's when my baby started struggling to live.
At the hospital they continued to do various testing to determine his organ functioning. After a few rounds of FFP (Fresh Frozen Plasma) they were able to get his liver back on track so things would clot. They were checking his blood gases so frequently they had to give him more blood. He was still on a vent - they were having to add nitrogen to it as to not flood his lungs. He was breathings sub-atmospheric air. We breathe 21% oxygen, he was breathing only 17%. His heart rate of course was still elevated and they were having a hard time getting his heart and lungs regulated the way they would like.
His kidneys weren't having any output. He was on TPN. He had MRIs/Echos/Ultrasound of Head. PICC lines inserted, arterial line removed from his umbilical cord and moved to his arm. That is how they check the blood pressure.
The head ultrasound showed that there was blood on his brain. Brain bleeds from lack of oxygen and build up of lactic acid. They weren't sure how severe so they did an MRI. MRI showed grade three - but the pediatric neurologist said there was also tissue damage which is a grade four. He mentioned that he wasn't sure how it would affect him, that it is rare for full term babies to have this sort of ischemic issue. The pediatric neurologist wouldn't come out and say "stroke" or determine really how things looked. He just mentioned over and over that it is too early to tell what may happen but he is likely to have issues as a result. We won't be able to tell until we want him to start hitting those developmental milestones.
So that was like a kick in the chest, where you lose all your air and you can't breathe for a bit afterwards. I knew it was likely and had been warned, but that doesn't make it an easy thing to hear.
The very next day I met with the pediatric cardiologist who wants to perform the surgeries on little C. She is quite a trip to listen to. She mentions that because of his brain bleeds he will not be a candidate to start the 3 necessary open heart surgeries as they all require heart and lung bypass. With brain bleeds they are guaranteed to make it worse, so they are unable to do anything of that sort. She explains he will have to have FOUR open heart surgeries now - the first one is called a Hybrid. This one involves placing a stent in his PDA vein to keep blood flowing through there and banding the pulmonary arteries. This will essentially "buy" us a few months for his brain to heal before he will need the first major open heart surgery called the Norwood.
As she explains all of these surgeries and how they are done - it's amazingly scary to hear. They literally will rewire the plumbing to his heart - and in the end my sweet little boy will essentially only have a two chambered heart - and it will do all of the pumping of blood to the organs, as they will have the rest of the blood drain directly to his lungs, making that a passive blood flow. It is absolutely insane to think of what it is that they can do.
Anyways - the surgeon is still quite a trip. She sort of talks circles around me. She gives us two options for how to proceed with the Hybrid - either by stent placement or injecting something into the PDA vein to keep it open. She gives these options - then basically tells us to pick which one - giving absolutely no direction to take. She was almost unhelpful when it came to that.
She mentions also that each time he goes on heart and lung bypass it will affect his brain. She explains heart and lung bypass as "literally freezing your child until there is no activity in any of the organs" and states that kids after being put on heart/lung bypass do not have normal MRIs afterwards. Then she reminds us that he will need this three times, on top of whatever damage has already been done to his brain.
He has so many obstacles to over come, and he's not even three weeks old!
He has his first surgery tomorrow - the stent placement and banding of the pulmonary arteries. It is taking place in the afternoon and will last four hours or so. If you are free - please take a second to send up some prayers for my little guy and for the surgeons working on him as they place the stent, crack his tiny chest and work on his walnut sized heart. I pray for steady hands, optimal decision making with stent size and placement and for God's will to be done. Thank you so much for your thoughts and prayers!
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