Today has been one of the best days I’ve had since this journey began. I have been anxiously waiting for the day my boys could be back together… each day it’s one of my first questions and it’s always answered with “when they are stable enough.”
They have been down the hall from each other. Maurice the first room when you walk in and Peter the last at the end of the hallway. I would feel a little bit of guilt and watch the clock to make sure I spent equal time with each of them when I visited. James and I would even separate to make sure they each had a little of us.
Today I walked in ready for rounds and everyone was standing by Maurice’s room. A nurse quickly took my arm and told me they have been moved.. right away I knew.. the tears started immediately and a few other nurses wrapped their arms around me. They took me into another section.. where the “stable ” babies are.. and right there in the very first room were my boys. Together after 13 very long days apart. They were so connected .. even their blood flow dependent on each other for survival … and now they are back. I thought to myself this is how it is meant to be and this is how they will always stay.
I met my new nurse For the day. She was gentle and kind and listened to our story like an old friend. Maurice and Peter are her only patients for the day. She immediately told me Peter has a “personality” .. her nice was of saying he was fiesty… he has some reputation already. I love it. She helped me decorate. New blankets for the top of their isolettes so the lights won’t damage their retinas and little NICU cards with sayings like “be brave little one” and “I am loved.” Each of them have a picture of our family and a blessed medal. It’s not a nursery but this brings some comfort.
The doctor came in shortly after. We started rounds. First Peter or “baby A the recipient.” Born at 28 weeks and 5 days and now 30 weeks and 4 days. He is 13 days old. For respiration support, he is on “high flow oxygen” which is a step down from Cpap but still a little more than a regular nasal Cannula. It still provides some pressure. He was decreased from 4 liters to 3 liters with no issues. The next step would be one liter and then nasal cannula. They are not changing today but in the next few days that’s the plan. He did not have any episodes of bradycardia ( low heart rate) or desats ( periods of not breathing). He continues to take caffeine to help “remind him to breathe” at 8 per kilo. His echocardiogram from 6/21 showed moderate left ventricular hypertrophy ( thickening of the heart muscle) and a pfo ( hole in heart). His blood work is ok and his bilirubin is 3.2 so he is off of phototherapy. He weighs 1285 grams (2 lbs 13 oz) and gained 40 grams overnight! He had one small spit up but overall is tolerating feeds well and today we are advancing .. right now he is on 24 calories and 7ml of breast milk and donor milk 3 hours on and one hour off. The plan today is advance feeding ( up to 8) and hopefully get off of TPN tomorrow night. One he is on full feeds and off of TPN we can get rid of the PICC line ( his central IV ) and this makes me very happy!!
Next is Maurice or my “baby b the donor.” 13 days old. He continues on Cpap for respiratory support set at 5 and 21%. He is not yet ready for high flow because of his size. Without the pressure of Cpap his lungs could collapse. We will have to wait until he is about 1000grams. He also continues on caffeine at 8 per kilo once a day. He has a murmur and a vsd ( hole in heart) but his cardiac function is improved. We are planning a repeat echo on 7/9. His weight at birth was 790 and today 860 grams 1.9 pounds) . He did not gain and weight last night but the night before went up 30 grams. His IV came out last night and he is on full feeds at 5.6 ml and hr 3 hours in and one hour off. He will go up today to 6ml. His last bilirubin 5.8 and he no longer needs phototherapy. His sodium is 148 and went up a little but we will recheck that tomorrow.
Our plan is to eat and grow. My boys have come such a long way. I know now that they are together they will thrive even more. They can feel each other. They are twins and never meant to be apart .. they both grew to the same beat of my heart. 💙💙