I couldn’t wait to get here today. The girls woke up so happy ..we had such a wonderful weekend together. Mia sang .. “ohhh I just want to feel this moment..” the whole time I did her hair getting her ready for camp. We made pancakes together and off she went to auntie’s house. Jules was playing with her nana and babies and was as cute as could be.
When we were about 15 minutes away from the hospital the doctor called me. My heart drops. Maurice’s hemoglobin is low and he will need a blood transfusion today. I told them I was close and now even more so couldn’t wait to get there. When I walked in the doctors were still nearby and came into our room to explain everything in detail. I listened closely as I stood over Maurice’s isolette, wanting so badly to pick him up and hold him close.
They explained that it is common for babies born early to develop anemia of prematurity. His bone marrow, which makes blood cells, is not able to keep up with what his body needs right now. He has a good reticulocyte count, and this means there are some new red blood cells being produced, but it is not enough. Hemoglobin is the protein inside the red blood cells that carries oxygen. When levels of hemoglobin drop too low, vital organs don’t get the oxygen they need and it can result in a stroke or heart attack. With Maurice’s small size and underlying heart issue ( hole in his heart) it’s even more important that we do whatever is needed to maintain healthy levels. I’m glad the doctors found this on his routine blood work.
He looks pale in color and his heart rate is high. These are all symptoms of anemia. He already has an IV in his tiny vein in his leg and they have started to give him blood over 3 hours. We will recheck his levels in a few days and I’m praying he does well.
He lost some weight the day before and now gained about 15 grams. He is back to 975 grams or 2 lb 2 oz. Overall he is struggling with weight gain and after his transfusion we will revisit this. Today I also found out he had some abnormalities on his newborn screening blood tests. Newborn screening labs are used to check babies for potentially harmful or even fatal disorders that are not apparent at birth. Each state tests for different abnormalities.
According to the doctors they found some abnormal levels in Maurice’s labs. There are many false positives and they will have the genetic specialist review it as well. I understand that this is a screening test and not a diagnostic test so I’m trying not to panic. Initial screening provides only early information that is then needed to be followed up with more specific tests. My poor little guy can’t catch a break. I know he will be the strongest of them all one day!
Peter had a hard night as well and had to be put back on high flow oxygen. He was working too hard trying to breathe on nasal cannula and , after a good trial , we had to go backwards. He’s not ready yet. He did gain some weight again and is now 1590 grams (up 20 grams ) or 3 lbs 8.1 oz. Today we are condensing his feedings to over 30 min. He seems comfortable and I even dressed him in real clothes.
Throughout the past week, the boys have been getting accessed for a big milestone, bottle or breast feeding. When they turned 32 weeks the nurses began to watch for cues. Cues are their way of talking to us and telling us when they are ready to start eating by mouth. Behavior, facial expressions, movements, breathing and wakefulness are all signs. Each of these signs correlate with a number or score. When they are at mostly 1’s and 2’s for about 5 days they will be ready to try. They also need to be off any significant respiratory support and the feeding tube is usually moved from their mouth to their nose so it doesn’t interfere. Peter is mostly scoring 3 and 4’s and is still on high flow so it will be a while. Maurice is on Cpap and bottle feeding for him still seems so far away as well. The idea of holding them while they eat and not have it passed through a plastic tube in their stomach is something I’m dreaming of.
I knew in the beginning blood transfusions were a common thing in NICU but that doesn’t make it any easier. I feel guilty that I wasn’t here yesterday but I know in reality that would not have changed anything. I held Maurice first while we waited for his blood. I didn’t want to let him go. I’m starting to get into a routine here. Pump .. hold one baby .. pump again .. then hold the other. There are no windows and it’s east to loose track of time. There are other moms here, across the hall and next to you.. we all exchange half smiles when we make eye contact .. connected by the pain and beauty of a mother’s love.
Today is a hard day. I’m so thankful for the beautiful weekend I had with my family. It helped to recharge me and get me through. Our nurse told me today that they look like me.. this was the highlight of my day. I can’t take my eyes off Maurice and will stay with him until I can be reassured he tolerated his transfusion well. It will be a long night. Please keep your prayers for my babies during this little bump in our path.