Gestational age: 34 weeks, 6 days 

Day of life: 70 

Beckett: 4lb, 0oz 

Juliette: 5lb, 1oz 

 

Beckett started his 10 day steroid course to prep him for extubation last Saturday. He had some roid rage the first few days and was pretty hard to calm down, but it has been getting better as it tapered off and his extubation on Thursday went great! He has already gone down several NAVA levels (which is the pressure of the as-needed support breath) and has been doing really well. His voice is slowly coming back, but his cries are still pretty squeaky. 

 

Both twins had an echocardiogram done on Tuesday to check how their hearts and lungs are developing. They both have mild pulmonary hypertension, which means that the blood vessels in their lungs are experiencing too much pressure from the oxygen ventilation they have needed. The doctor assured us that they test for this earlier than most NICUs to catch it when it is mild and doesn’t mean that the twins will have high blood pressure long-term. They are both on a diuretic to help with this while watching Beckett’s sodium levels to make sure he isn’t now letting go of too much sodium. This course of treatment is complicated by the fact that oxygen can make the issue worse, but the twins need a higher oxygen amount to help with their eyes (Beckett’s eyes stayed the same from last week, but Juliette’s eyes got slightly worse and are similar to her brother’s now). They’ll be watching both closely and balancing treatments as much as they can. The doctor told us that any medical intervention for premies comes at the cost of something else, so everything they do is a delicate balance where they have to weigh the costs and benefits. 

 

With the diuretic, Beckett has lost a lot of the water weight he was holding onto, so he is no longer a puffy boy. Unfortunately, that mixed with the steroid boosting his metabolism has made him lose quite a bit of weight and now the plan is to help him put some of that weight back on. He finally had his lower GI contrast study done on Friday and they didn’t find anything concerning, which was great news! They are hoping to start stool re-feeding this week, which will hopefully help with nutrient absorption and weight gain. 

 

Beckett’s stoma has been slowly prolapsing again, but the surgeon isn’t concerned since the color doesn’t indicate a loss of blood flow and it’s still soft and looks healthy. The prolapse was pretty significant on Friday, which had us worried because the last time this happened he needed surgery, but it’s just one of those things that is fine until it suddenly isn’t so they’re keeping a close eye on it. The surgeon mentioned that it might be good to get a date on the calendar for his reconnection surgery, but he needs to get his weight up first and stay healthy. Beckett’s ostomy bags have had a habit of falling off during every diaper change during the last week, so his poor skin has been irritated and we think it probably hasn’t been helping his stoma either. 

 

Juliette started breastfeeding this week! It has been going really well and she took to it immediately. Phase 1 of oral feeds includes two attempts of either breast or bottle feeding per day and if she nurses for 5-10 minutes, she gets half of a regular feed. If she nurses for more than 10, she doesn’t get her regular feed. She is able to move to phase 2 (which adds more attempts per day) once she forgoes her regular feeds for two days in a row. Based on how she’s been doing, we think she’ll be moving through phases pretty quickly.