Gestational age: 38 weeks, 6 days 

Day of life: 98 

Beckett: 5lb, 8oz 

Juliette: 7lb, 3oz 

 

Beckett has been working on healing this week. He was extubated on Tuesday and was able to hop right back onto RAM! This was a huge relief for us because of the failed extubation attempt after his last surgery, but he did great with the help of a short steroid course. He was slowly weaned from his morphine over the week, finally off of it on Wednesday. The steroid combined with the weaning of morphine made for one cranky baby, but he has been more like his sweet, happy self this weekend. 

 

Throughout this past week, he has had a suction tube going through his mouth and into his stomach, with the goal of sucking out any icky stuff from his surgery. We were hoping that he could start feeds sometime last week, but they were getting bloody secretions from the suction that didn’t clear up until yesterday. Hopefully he can start getting milk again soon! He hasn’t ever gotten full feeds because of his digestion issues, so he has always had additional IV nutrition through a PICC line. He has been getting the nutrition he needs this past week through that line, but the poor kid has to feel hungry after 8 days of not eating. 

 

His incision from the surgery was pretty red and angry throughout the week, so they started antibiotics to clear up any infection. It started looking better on Friday and there are finally some good signs of healing. We met with GI and they said that the amount of intestine he has left is favorable and babies can often adapt to what length of remaining intestine they have. The important thing is that he still has all the functional parts of a digestive system, just less small intestine. We won’t know anything for sure until he starts growing, getting bigger, and we see how his body responds. 

 

As expected, buddy boy puffed up after surgery and put on quite a bit of water weight, which they’ve been chipping away at this week with a diuretic. We’re hoping once he starts eating again, he can start gaining some real weight back. 

 

Wednesday ROP exams went well this week! Beckett’s eyes stayed the same again. We were worried that the inflammation from surgery would show they had gotten worse. It’s still possible they will get worse before they get better, but we’ll take the win of stability for now. Juliette’s eyes improved and one of her eyes has healed while the other has made improvements toward healing! 

 

The eye doctor told us she could move to exams every other week for her eyes, which were the magic words to start the ball rolling on discharge. The plan was for her to be discharged on Friday and we were in the thick of scheduling oxygen training and gathering supplies when we found out that an echocardiogram she had showed her pulmonary hypertension was back. This put a pause on all discharge planning and she got started on a stronger diuretic to see if that would help. She will get a repeat echo on Monday and that will determine whether we discharge next week or if discharge is off the table for now. The echo was for a cardiology baseline for future follow up appointments. Juliette has an atrial septal defect (ASD), which we’ve known about for a while and is basically a hole in the wall of the heart between the upper chambers. This can sometimes close as a baby gets older and sometimes requires a procedure to fix, later on. It’s just another thing they’ll keep an eye on. 

 

During the discharge prep, they did a room air trial for Juliette, where they shut her oxygen off and see how long it takes for her oximeter to dip below 90%. Sometimes this takes a matter of seconds and sometimes it takes longer - the amount of time helps doctors determine whether the home-going oxygen is more for eyes or lungs as well. This particular room air trial is for insurance purposes because they won’t cover oxygen unless it’s proven a baby needs it (even if it’s only for their eyes), so a quick blip below 90% will count. In future follow-up visits, they will be a little more picky about how long they dip and how quickly they pull themselves back up above 90%. Juliette lasted a couple minutes before her quick dip, which exceeded our expectations! She still needs her oxygen, but it’s a positive sign that she might not need it for very long once her eyes heal. In fact, they’ve already weaned it once and she’s handled that well! 

 

This week also started some new policy measures in the NICU because of the uptick in measles cases in the state and Johnson County. Since babies and preemie babies are at highest risk, the hospital takes it very seriously. Masks are now required in the NICU and the number of allowed visitors is down to four people per two week period, including Dan and I. Not much of a change for us, just some coordination on visits from the Grandmas and Grandpas of the world.