Gestational age: 33 weeks, 6 days 

Day of life: 63 

Beckett: 4lb, 9oz 

Juliette: 4lb, 14oz 

 

Beckett has been super puffy since his surgery. He received a bunch of fluids during the procedure and with all of his sodium supplementation, he has held on to a lot of it. They can’t give him a diuretic because he’ll lose some of the sodium he needs, so he will just be a little puffy boy for a while. 

 

Last week a nurse noticed what she thought was blood in Beckett’s stool, so they ran some tests to see if there was something going on. The GI team looked at his stool and on further inspection, it looked more like an oily substance rather than blood, so they chalked it up to digestion and weren’t concerned. However, one of Beckett’s blood tests showed inflammation markers, so they did a urine and blood culture and discovered he had a UTI. It was another week of pokes and prods, but he got to move across the hall into a room with a door on Tuesday, so at least he was able to actually get some good rest during all of it. 

 

Last week during eye exams, Juliette’s good results stayed the same from last week, but Beckett’s eyes got worse. They think that the inflammation from his UTI could have caused the issue, but they increased his oxygen to be safe. Until a certain age, too much oxygen can be bad for a premie’s eyes, but eventually it is actually good for their eyes. They’re hoping this Wednesday’s eye exam will show that he’s either the same or better. 

 

Dan and I spent Thursday morning on a two hour phone call with Social Security to get on the waiting list for a disability determination for the babies (in case we need it). I made this appointment over a month ago and the wait list is 5+ years long, so it was a big deal but it was also very annoying and stressful. There is nothing like a long, administrative task to dampen your day. Luckily, the day was salvaged later in the afternoon because the twins got moved next to each other!! They shuffled some babies around so that Beckett could take the room next to Juliette and we can open the doors between them. This was a huge relief for us, makes us feel better that the babies have each other near, and has made the logistics of our days much easier. 

 

Juliette was switched to the next breathing support system on Saturday, which is another form of CPAP called RAM. Instead of a tube going down into her nose, it’s a nasal cannula. They were going to wait to switch her because they are worried that she’ll get moved to level 6 of the children’s hospital since she’s doing so well (and we JUST got them together again), but her nose was getting pretty bloody and irritated from the CPAP nasal tube, so they made the switch. Fingers crossed she does not move to another building because we could barely handle a hallway. 

 

We also got news from our favorite neuro doctor that they’re decreasing Beckett’s head ultrasounds to every other week because they have been “rock solid” and she’s really happy with how they’re looking. She said that she is pretty hard to please, so this made us happy to hear. This doesn’t change the original determination or damage, it just means the bleed hasn’t gotten worse and is beginning to break down. She also told us that she physically cornered surgery (she did a basketball guarding move when she said this) to ask about when Beckett’s contrast study will happen and they said this coming week. We’ve been trying to get an answer on that for a week and a half now, so it was nice that she was looking out for us. Beckett also started a steroid today in hopes that his extubation will happen this week. 

 

My parents have been watching our dog, Ellie, for us since I went into labor, but had to take a trip this week so Dan and I have been taking turns staying at home, then switching each afternoon. While it has been weird because we have spent nearly all of our time together for the past 60 days, it has been a good break from our usual 8:30-6:30, 7 days a week hospital schedule. We know that we still have quite a road ahead of us, so breaking up the monotony for a week is good for us. Plus, we get to spend time with our very own therapy dog.