Today I got to see my son Peter’s face without any breathing tubes. He has been on room air only for 24 hours and is doing such an incredible job! I can see his little lips without a tube in his mouth .. his feeding tube was moved to his nose to help him when he is drinking bottles. It’s hard to get a good seal around a bottle while it’s in his mouth. It will have to stay in until he is taking 100% of his feeds by bottle. Right now he is doing about 70% which the doctors tell me is “pretty impressive.” He had a huge weight gain last night of 115grams and now weighs 5.13lbs. He still has some periods of breathing fast, has some swelling and a little upper respiratory congestion but overall we are making some great progress.
My Maurice weighs a whopping 3.33lbs and gained 55 grams. He is so alert. I love the way he opens his eyes and looks at me. He continues to be tachypnic (breathing fast) and he is pale. The fellow is new to us (they rotate for about a month ) and again suggested a blood transfusion but everyone agrees he is stable enough to wait. It’s always better to have him make the cells on his own. A transfusion could signal his bone marrow to get lazy and not pump out red blood cells on its own. I agree and we will wait. We cannot decrease his breathing support yet. On Monday he will have new blood work and can make a decision if needed at that time. He continues to be so strong as he has been since day one.
The “wait and see” is the hardest for me, but it’s a popular theme in the NICU. They are at a point where we have to give their bodies a chance to do things on their own. “You don’t know until you try”.. is what they say. You watch for episodes.. when the oxygen drops low or when they stop breathing.. the scariest part is that if their tiny body doesn’t get the oxygen it needs .. even if just for a few seconds .. their heart and brain can be injured.
They are so beautiful .. their faces filling in.. eyes brighter ..I love them .. it’s a love so so strong and being away from them is so so hard. I miss them every minute of everyday and live in a constant state of happiness and sadness. It’s a new feelings that I have never felt before and there is no one word that can describe it. We would have been 36 weeks today. Time is going so fast and still so slow 💙💙