Transfusions - Day 54

Rex during his cares 

Rex right after I held him today with his drool slug coming out of his mouth ;)

Rex

Can you see the itty bitty clear binky?

Ellie during her cares

Rex at 7 weeks old (30 weeks gestation)

Eleanor at 7 weeks old (30 weeks gestation)

We got more blood work on Sunday morning at 4 am to check the twin's hematocrits. They were hoping that because the reticulocyte count was good that the bone marrow would kick into gear and make more red blood cells so they wouldn't need a transfusion, but they did. Their hematocrits were so low that the doctor ordered two transfusions for each of them. Instead of doing one transfusion at the regular rate they each got two at a slightly slower rate, which means they got more red blood cells overall.

They needed two IVs each, one for blood and one for nutrition since they can't eat before, during, or directly after a transfusion. We haven't had IVs in a month! We skipped holding them on Monday since it was going to be an eventful day with continual monitoring during the transfusions. Our nurse Justin said that they are getting to the point where they know what they like and what they don't like. Obviously they don't like being stuck with an IV. He gave them a little bit of sugar water on a Q-tip to  help with the discomfort. In their first week of life they got transfusions almost every day, and getting a new IV was no big deal because they constantly had IVs. Especially when Rex was going through treatment for his fungal infection he got new IVs daily because they would go bad so quickly. Now that they aren't intubated we can hear them cry and they cry when they get a new IV. 

The reason they can't eat while getting a blood transfusion is the risk of a GI tract infection called Necrotizing enterocolitis or NEC. NEC can be extremely serious and even fatal. Often it requires a surgery where they remove portions of the babies intestine altogether. We have been fortunate to not have any NEC scares. After their blood transfusions they started eating straight breast milk without any fortification. Then 12 hours later they fortified the milk up to 24 calories, and tomorrow we will go back to the 28 calorie milk they were on before. Gradually reintroducing the fortified milk will help to avoid NEC. 

They both really needed the transfusion, but Ellie has been looking so pale up until the transfusion. We were told after a transfusion babies oxygen needs typically are lower because they have more of the red blood cells that carry oxygen from their lungs to the rest of their body. The day after the transfusions they both were down on their oxygen needs and their heart rates were lower as well! 

We held them on Tuesday and they were feeling much better after the transfusions. They even had a harpist in the NICU Tuesday morning. We sat and held them for three hours and listened to the music and talked. It felt like a little bit of heaven to me. Charlie keeps saying that Rex is getting so big he can't hold him with just one hand under his little bum anymore! 

While we were holding, the secretary for the pediatric ophthalmologist came into talk to us and told us they were going to have their first eye exams that day. They are now 31 weeks gestation which means that they need to start checking their eyes for ROP or Retinopathy of Prematurity. ROP is a condition where life outside the womb along with receiving supplemental oxygen causes blood vessels in preemie's eyes to grow incorrectly. In the most extreme cases it can lead to blindness as the blood vessels pull on the retina and sometimes completely detach it. They watch it very closely and start checking it very early to avoid this. The main risk factors for developing ROP are: 

1. Low birth weight
2. Low gestational age
3. Receiving supplemental oxygen

So basically Rex and Ellie will have ROP, we just don't know to what degree. The exam itself isn't super fun for anyone involved. Charlie watched, I didn't. They dilate the babies' eyes then use an instrument to hold the eye open. While holding the eye open the doctor uses a little stick looking thing to hold their eye in the correct position so they can see the blood vessels. This exam was just to establish a baseline so in two weeks when they have another exam we know what change has occurred. The doctor said that their eyes are still so premature they can't diagnose to what degree their ROP is quite yet. 

They both let us know that they didn't appreciate their eyes being pried open and poked. Even though their little cries are so sad I am just grateful that we can hear them cry now! After the exams they did fairly well and settled back in to sleep. 

I hope that update wasn't too scatterbrained or too detailed. I like to include the details so that I can go back and read what happened and how I felt about it. The next step is to get Rex and Ellie onto bubble CPAP instead of NIPPV. Last time we tried bubble CPAP Ellie lasted five hours and Rex lasted one before they needed the extra support NIPPV offers. They weaned their ventilator settings today to 15 back up breaths per minute and they want to get to 10 before we try CPAP again. 

I can't forget how blessed we are. We had a new doctor this morning who came in to examine them while we were holding them. After listening to their lungs and talking with us about her plans for them she said, "They are 23 week twins and they are still here." I teared up and felt so grateful to be sitting their holding my little boy on my chest. The latest statistic I heard was that 25% of babies born at 23 weeks survive, and that percentage is lower if it was a multiple pregnancy. Since their birth I have met two moms whose 23 week twins passed away. I have met a mom who is here with her surviving twin in the NICU. And I have seen a couple walk out of the NICU without their baby, the mom holding a pink teddy bear that had her angel baby's heart beat recorded inside. I don't know why some parents have to go through such excruciating pain, but I do know that what each of us go through is what God picked for us to experience. I want the experiences he hand picked for me, even if they are excruciating. Jesus Christ knows how excruciating my experience is and He knows the pain of the mom with the pink teddy bear. With His help she can make it through, and I can make it through.