Today was another good day, although Andrew is falling a little behind again. Last night, he tired for two of his feeds and they had to use his feeding tube again. In order to get his NG tube out, he was to go 36 hours without needing it. This means the clock reset this morning around 6 am. He has also had difficulty keeping his temperature up in his open crib. They have been swaddling him in several blankets and I even brought in a warm outfit with feet to try to help. He is still barely meeting the criteria to stay out of his isolette and we won't be surprised if he ends up back in it by the morning. None of this is a huge shock (remember the roller coaster we are on??) and it definitely means that he won't be ready to go home quite yet. Paige is ready though and we are planning on her discharge on Friday regardless of his status. Although we are sad that Andrew won't get to go with her, we definitely don't want to push him too hard and bring him home sooner than he is ready.
As tomorrow is Thanksgiving, I've done a lot of thinking about how much we have to be thankful for this year. After a very stressful nine months, we have two wonderful babies that are healthy and doing so well.
Our pregnancy was anything but easy. It seems like we had every complication possible -- high blood pressure for me, preterm labor, growth discrepancy which turned into growth restriction for Andrew, cord blood flow abnormalities for Andrew and ultimately preeclampsia. At 28 weeks, we found out about Andrew's cord abnormality and saw that he had dropped way off his growth curve. They also found disproportionate measurements and we were told we had an increased risk for a genetic problem with him. Our OB team felt our risks were too high and wanted to deliver shortly after this, but our high risk team allowed for hospitalization and close monitoring. It was a constant battle between the two teams about which path to take: wait and risk an emergent delivery and more problems or deliver and face all the risks of prematurity. No one seemed to know the right answer and we were given up to a 40% risk of intrauterine mortality for Andrew.
We met with the neonatal team several times and had very candid discussions about how neither of our choices were great but they felt the prematurity risks (especially with Andrew) outweighed us delivering at that point. We pushed it to 31 weeks, but they continued to warn us about four major complications that would have the greatest impact on overall outcome and development. The first was respiratory distress syndrome, which they both had minimal issues with. We were off CPAP within a few days and off oxygen completely within two weeks - unbelievable. The second big concern was necrotizing entercolitis (NEC), a serious intestinal problem. Andrew was especially at risk for this, as he had restricted cord flow and head-sparing intrauterine growth restriction. This means that more blood was shunted to the head to help brain development and less to the lower half of the body (such as the intestines). Although we introduced feeds at a frustratingly slow pace, they both escaped this, which was one of my greatest fears. The third big issue was intraventricular hemorrhage (IVH). This is essentially a brain bleed due to the breaking of very fragile, premature vessels after they are exposed to changes in blood flow and oxygen post delivery. These bleeds can be minor and have minimal effects or can be more severe and be devastating. Paige and Andrew have both now had three head scans and they were all normal and showed no evidence of bleeds. The last big concern we discussed is retinopathy of prematurity, which is basically the abnormal development of retinal blood vessels that can lead to scarring and detachment. In severe cases, this can cause blindness. They both had their first eye exams today and although the vessels are still premature, there were no abnormalities seen. They will follow-up again in the eye clinic in a couple weeks.
As of today, we have now crossed all of our major complications off our list. We will deal with the weight gain battle, feeding problems, and possible developmental delays for several months to maybe even years, but that is nothing compared to how things could have been. When things get hard for us at home, which they inevitably will, we will remind ourselves of this. We have two perfect babies and we have overcome quite a bit in just a short time already. Happy Thanksgiving!
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