Gestational age: 37 weeks, 6 days 

Day of life: 91 

Beckett: 5lb, 15oz 

Juliette: 6lb, 12oz 

 

For the last month, we have had Beckett’s reconnection surgery on the calendar for Monday, August 11th. This past Monday, the GI doctor came to check him out and we noticed that he had bleeding ulcers on his prolapsed stoma, which had also become alarmingly big. The surgery team was still fine with the prolapse because of the color and softness, but it has been tough to see. GI wanted to start continuous stool re-feeds, which involves removing the stool from his ostomy bag and putting it on a continuous pump, which feeds into his mucous fistula (the lower half of his intestinal tract) slowly through a catheter, replicating the normal rate of digestion. Not long after this conversation, we learned that Beckett’s surgery was scheduled for a day that only looked wide open because there were no available anesthesiologists and that the day we had been planning on for weeks was actually not going to work. We learned the soonest date they could get him in was September 3rd. We were very upset because this scheduling error hadn’t been caught until the week before he was supposed to have his surgery, and the amount of issues popping up with his ostomy continued to increase. He also couldn’t move forward with any of the things that he would need to do in order to be discharged until he was reconnected. 

 

GI and surgery met the next day to talk about all of their cases and it was reported back to us that they couldn’t get him in sooner unless there was a cancellation. After a long talk with the nurse practitioner about all of our concerns, someone from surgery came in to let us know that there was a cancellation and they could get him in on Friday! It was a rollercoaster of emotions to start the week, but we were so relieved that we wouldn’t have to wait three and a half more weeks for this surgery. 

 

The rest of the week for Beckett involved a lot of tests to make sure he was healthy, snuggles with mom and dad, and his first big diaper blowout. So long stool ball. 

 

His surgery on the 8th went well, but they decided not to fix the hernia and instead just focus on reconnection. They told us the hernia could be fixed when he’s a little older as an outpatient operation. While they were working on him, they needed to remove another 10cm of bowel and also remove his appendix. The surgeon told us he still has about 85cm of small intestine left. We are waiting to talk to the GI doctor this coming week to see what the total loss of intestine might mean for him, long-term. 

 

The surgery meant that he needed to be intubated again and recovery is always hard because he has to be weaned from both the ventilator and pain meds. It seems like such a slow process and it’s hard to see him so out of it, but his doctors assured us that he’s bigger and stronger than he was during his last surgery and the extubation process should go more smoothly this time. He is also very puffy and having some spells, which he hasn’t had in a while, but he’s doing okay and getting lots of rest. They started him on some antibiotics today due to some swelling and redness around the incision site. 

 

This week’s ROP exams gave the same results as last week, but the eye doctor told us to expect Beckett’s eyes to get a little worse due to inflammation from his surgery. Juliette’s results were the same, but the eye doctor said they looked a little better overall and it’s possible that after next week, she might be able to move to every other week exams instead of weekly. This seemed to be the magic words for Juliette’s doctors, because they told us that once her eyes were stable enough to move to bi-weekly exams, we could start talking discharge. She’s been doing really great with oral feeds, moving to phase 4 of 4 and basically calling the shots on when and how much she wants to eat. They even removed her feeding tube! We’re very excited for a possible discharge for her, but also a little nervous to not have the constant care we’ve had since she was born so small and fragile. It’s also a little bittersweet knowing that when she does get discharged, we won’t actually be going home and we’ll have a newborn in our small Ronald McDonald house room and still be going to the hospital every day. Like all of the 90 days before, we’re just trying to take it one day at a time.