After our call at 12:30ish am it's amazing we got any sleep. As my friend Glennon Doyle Melton says " Jesus loves me this I know, for He gave me Lexapro" (and Perecocet) We got to the hospital early again and went back at 7:30 on the dot.
Our primary nurse, Lauren, was not happy. Which made us worried. We got back there and Shea was very agitated and uncomfortable . We have not seen this side of him and it was just pitiful. He was so fidgety and crying. We felt just helpless as parents. We held his hands, kissed his forehead, and held his paci in his mouth for him. He was on 100% oxygen and 4 liters of flow...not good. And Shea's feet were so puffy. they also had turned on the prostaglandin again. This is the med he had before the cath to keep the ductus open.
Overnight they had put him on Lasix to help empty the fluids from his system. When we changed the diaper. It was clear that it had worked. Y'all, I have changed a million diapers and never seen anything like that! When Lauren weighed it, it was 140mg, he has been averaging 40mg a diaper.
Paul and I spent most of the day in NICU by his bedside. Throughout the day Shea had an echo and xray right there in his "room". I was able to comfort him during the echo and help with wires and positions. I think Shea liked the massage he got with the ultrasound wand. So let's go through the results of all the tests he had:
1. Blood work: showed that his hemoglobin was great aka he has enough oxygen in his blood...WIN!
2. X-ray: clear as a whistle. No infection or fluffiness...WIN!
3. Echo: the ductus was starting to close and the pulmonary artery valve was still thin (even after procedure) and disrupt the flow of blood in the heart.
After talking with the neonatologist and the cardiologist there were two options on the table. The BT shunt (first open heart surgery we had already planned for) or trying beta blockers. The thought is that the muscle below the valve is constricted and the beta blockers would slow the heart rate down, allow the muscle to relax and the heart to fill up with blood. There is a 50/50% chance of it working and there are no risks to trying it. So after talking with both doctors we decided to go ahead and try to beta blockers. We will know in the morning after the echo if it helped.
I will admit yesterday was very hard for us. We were in the NICU for most of the day (7:30-5:30) My parents did come up and spent an hour or so with Shea so we could go to lunch. After we fed Shea at 5pm he was super mad (we only gave him 15ml) and started getting angry colors. In normal babies you don't worry so much about that, with heart babies, you try to make them breathe. For now it seems like giving Shea a paci reminds him to breathe normally. He also likes lying on his side cuddling up to a blanket.
My parents took us out to dinner. It was the first meal I've had that wasn't at the hospital or RMH. I kept staring at my phone. I also enjoyed a glass of wine. Not going to lie there was a little buzz going on. Food was great and my parents really tried to keep my mind off my tiny little world. So thankful for my parents and Paul. They truly are my rocks right now.
We did the 8pm cares- diaper changing, temp, weighing (he lost some of the fluid weight!), Paul even got to help with ng tube feeding. Shea was more awake during this time. And we were really happy to see our little one getting back to himself. Before we left the respiratory therapist came in and turned him down to 2 liters..less flow..yeah!!! I called during my midnight pumping session and Shea continued to do well. Beta blockers were started at 11pm and he was doing well.
Paul and I are so thankful for your understanding of us holding back. We are getting new information all the time and trying to process it. We love you for your support and constant prayers!!
No comments:
Post a Comment