Beckett passed his birth weight and Juliette hit 2lbs! Beckett started feeds yesterday with very small amounts of breast milk. Juliette has continued increasing her amounts of milk and they are considering taking out her PICC line, which delivers IV nutrition, to switch her to breast milk only. Juliette has remained pretty stable and Beckett has continued having short spells, but usually bounces back pretty quickly on his own. They adjust his vent settings regularly to try and combat the spells. Both twins have both eyes open now! 

 

With Beckett starting feeds, they want to keep a close eye on his belly to make sure it doesn’t get distended and stays soft. If it looks very full, you can see the outlines of his intestines (which they call “loopy”), or feels firm, it could be an issue that food isn’t moving through as it should. We get regular checks from the surgery team to make sure everything is okay. 

 

In addition to surgery stopping by, we also get regular check-ins from neurology, neurosurgery (as a precaution in case we need to pursue that option), GI specialists to make sure Beckett is getting optimal nutrition with an ostomy, a nurse who specializes in ostomy care and education for parents, our assigned social worker, lactation consultants, the children’s hospital chaplain, the research team, palliative care doctors to discuss future care plans for both twins, discharge coordinators who help with benefits post-NICU stay, and the usual nurses and doctors we work with. We never know when anyone is stopping by, so we try to make sure one of us is in the room most of the time in case someone comes (and sometimes multiple teams try to drop in at the same time). In addition to these surprise visits, we participate in rounds each morning to hear health updates and care plans, which can take place anywhere from 9-12pm. We also try and be available to help with cares at 12pm and 4pm. Introducing holds is another element to work around because it takes a lot of planning, prep work, and at least an hour of time to hold (we’ve both held each twin now!). I also have to pump every 2-3 hours, which really sneaks up on you during a busy day. Dan and I both started working from the hospital this week to save up our parental leave for when the twins come home. We can fit in working between all of these things, which are usually pretty short in length, but it can be difficult to plan around. 

 

It’s a lot to juggle and even when the twins have a good day, we still often struggle mentally with balancing it all and the general weight of everything. I was able to start therapy through the UIHC Women’s Center, which has been a really helpful resource and outlet.