Maurice is struggling today. He is having trouble taking in enough air. His little nostrils widen with each breath. He is retracting and pulling his chest in at the ribs. He is visibly working too hard to breathe and his respiratory rate is almost double what is should be. His skin has also lost all of its nice healthy pink color.
He has been tachypneic (breathing fast) for over a week. We stopped his caffeine, tried increasing his oxygen and nothing has made a difference. Today his hematocrit and hemoglobin dropped from 28 to 24. He needs blood .. again. A blood transfusion is used to increase the number of red blood cells that carry oxygen to tissues and vital organs. His little body is working so hard to make new cells and his retic count doubled but it’s not enough. They can use blood from the same donor he had prior in order to minimize the potential complications. His bone marrow will become a little suppressed after but at this point the benefits outweigh the risks. We are all hoping this will be the boost he needs to start growing and thriving. I can’t stand to see him work so hard and it’s almost impossible to take my eyes off his monitor. He seems to be tolerating the blood… More machines.. more tubes and wires and more procedures for this strong little man. He is a champion. I just want to pick him up and hold him… It brings back so many frightening memories.
Peter is on the complete opposite end of the spectrum. He is taking 100% of his bottle feeds and today I fed him 3 full bottles. We cuddled all day long. He weighs 5.66 lbs and looks like a newborn. He seems uncomfortable and they are adjusting his iron but all his numbers look ok. They will recheck blood work on him in the am.
We spoke about Peter coming home. It’s no longer a dream.. it’s starting to become a reality. Tomorrow am.. if he continues to tolerate all his bottles.. his feeding tube will come out. For the first time he will have no tubes or wires in him. I can’t wait to see his beautiful face. He still will have to pass his car seat challenge ( be able to sit in a car seat for 1.5 hrs). We are repeating his echocardiogram of his heart and sonogram of his head July 9. If everything goes well the nurse said he may be coming home next weekend. I’m happy, sad and scared all at once.
It’s impossible not to compare when I see how much progress Peter has made. We are moving in the right direction but my heart is still broken. To take one baby home and leave another behind will be another challenge to overcome. The days are going slower .. time almost stands still. It was even harder to leave you tonight my boys.. 💙💙 one day closer