Millie did have to go on the ventilator last night. She was working too hard to breathe and needed a break. They intubated her last night and have already moved the ventilator down 2 settings. It will now be a process of weaning her off it and getting her back to the CPAP. I have no idea how long she will be on the ventilator, but my understanding is that they will keep trying to lower the settings and wean her off, and it depends on how she tolerates that. Dr. K also heard a pretty significant heart murmur this morning when he was assessing her, so he ordered a cardiology consult.
The cardiologist came to see Millie this afternoon and did an echocardiogram (ultrasound of the heart). She has a widely patent ductus arteriosus (PDA). The ductus arteriosus is a blood vessel that allows blood to bypass the lungs in the developing fetus because their oxygen comes from the mother and not from breathing air. In full term infants, the ductus arteriosus closes soon after birth, but it frequently stays open in premature infants. Millie's may have closed initially then opened back up yesterday with the stress of working so hard to breathe. The treatment is nothing right now, and they will give it 10 days to close back on its own. If it does not close on its own then there is medication that can help close it, and if that doesn't work then they do surgery. Dr. K told me that these days it is a small percentage of babies that need surgery. The good news is that Millie's heart shows no sign of enlargement or hypertrophy. She had an enlarged heart as a result of the twin to twin transfusion syndrome (those of you not familiar then just know that I will address that in a future post). Up until several weeks ago her heart was still showing some hypertrophy on ultrasound, so it was really good news that it was normal today.
Millie and Ruby are having trouble tolerating their feeds. They attempted to give them 1 cc of breast milk to stimulate their stomachs, but I am not surprised that they were not ready for that. They know that because they can check to see what to see what is left in the stomach after feeding and both of them have not been able to digest the breast milk. They are holding their feeds for now. They may try again tomorrow, but I am not sure of the exact plan.
Ruby's nose was getting smushed (not a medical term) from the cpap mask. Preemie's noses and faces in general are so fragile, and they have to fit the masks so tight. They decided to give her nose a break and try a nasal cannula (prongs that fit in the nose). It is still pressurized air (cpap), but it doesn't seal like the mask and they weren't sure if she could handle it, but she is doing great. She has been on the nasal cannula all day and doing fine!
Several people have asked about the girls' weights. They have both lost weight, but I don't even know what their current weight is. Losing weight is expected and actually means they are getting rid of the extra fluid they are born with (just like term babies), so that is a good thing. Ruby is the small baby, but she is doing better than Millie because weight doesn't have anything to do with it. Millie's water broke two weeks ago and amniotic fluid helps lungs develop. Ruby's water never broke, so she had more of a chance to develop in the last two weeks.
I am being discharged tomorrow. I am sad to leave the girls, but I have actually never had the experience of leaving the hospital with a baby since both Jake and Emmett were premature too (Jake came 5 weeks early and Emmett came 6 weeks early). Nevertheless it is always emotional to leave. Even if I am not up in the NICU all the time right now, I still feel better being physically closer to the girls. It will be good to get home to Jake and Emmett as I have missed them terribly while being here.
Prayers for Millie's lungs to get stronger so that she can get off the ventilator and also for her PDA to heal. Prayers that both girls' stomachs will start tolerating their feeds when it's the right time. Prayers for both Scott and I to handle the anxiety we feel over the future and the girls' health in general. We're trying really hard to stay in the moment and take everything day by day. Elizabeth
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