Gestational age: 32 weeks, 5 days 

Day of life: 55 

Beckett: 3lb, 11oz 

Juliette: 4lb, 5oz 

 

The NICU staff is working on getting the twins back together again, but there hasn’t been a lot of movement or free rooms to switch babies around, so they’re still on opposite ends of a long hallway. Unfortunately, Beckett is still in a curtain room, which is very noisy and wasn’t the greatest for surgery recovery since he’s in an open-top warmer bed while he’s intubated. We asked for little sticky earmuffs to help him rest, which he sometimes tolerates and occasionally hates. 

 

His recovery has been going okay and they were able to wean pain meds pretty quickly. They also restarted feeds and have been slowly increasing the amount of milk he’s been getting, keeping an eye on his ostomy output. Surgery has been pretty happy with how everything is looking. 

 

A week after his surgery, Beckett was doing pretty well and his care team thought it might be time to extubate and put him back on NAVA. We were excited about this change because he understandably hasn’t loved being intubated and this could mean switching back to an isolette to help muffle the noisy hallway. He did okay at first, but started needing more and more oxygen help and we had to cut a hold short to help him regulate his breathing. This continued for the rest of the day and we could see that he was working really hard to breathe. They eventually decided to re-intubate him because he just wasn’t quite ready to work on his own yet. It was a tough day for all of us, but we’ve been trying to remind ourselves that progress isn’t linear and healing takes time. 

 

Surgery let us know that they wanted to do a contrast study on Beckett next week, which involves injecting a dye into the lower portion of his intestines (the section after the ostomy break) and taking an x ray to make sure that there aren’t any blockages or disturbances that would cause issues with digestion in that section. If all goes well, they would start “refeeding” soon after, which means taking stool from his ostomy bag and refeeding it into the other side of his stoma through a catheter to help with nutrient absorption and essentially wake up that section of intestine since it hasn’t done any work in a while. This would hopefully help with his sodium levels, weight gain, and help him be more prepared for an eventual reconnection surgery. 

 

Because the twins are getting older, there are some changes to care that pop up more often. When they hit 32 weeks, their oxygen saturation parameters went up. When they’re really small, too much oxygen can be bad for their eyes. They initially kept their oxygen rates between 80-90%, but now want them to work a little harder and stay between 90-98%. At 33 weeks (which is this coming week!) they’ll get another big change and will have their room lights left on during the day. Until now, they have kept the lights off as much as possible, but they are developmentally ready to experience day/night cycles. 

 

Juliette successfully made the switch back to CPAP and has been doing well. We think that her previous setback was due to being sick with a UTI. Sometimes when you’re not feeling well, you just need some extra support. She has an occasional spell, but they have been mostly booger-related because gunk can block off tubes really easily. Wednesday eye exams can cause some extra secretions, which caused a bad spell on Thursday night but she has been doing well since. Their eye results had no changes from last week! 

 

The 4th of July NICU celebrations were pretty fun. The staff really goes all out for holidays and they picked out fun outfits, made nice scrapbook pages for us, and spent a lot of time choosing festive bedding. Juliette’s nurse picked out 3 different outfits for a July 4th fashion show and Beckett’s nurse spent a lot of time getting him ready and presentable for a photo shoot with a knit, patriotic top hat. We watched fireworks from the 12th floor of the children’s hospital and had some good views of both the big display and all of the small neighborhood fireworks at once.