Gestational age: 28 weeks 

Day of life: 22 

Beckett: 1lb 13oz 

Juliette: 2lb 5oz 

 

Beckett has been having less spells in the past few days, which has been great to see. However, whenever we’re feeling a little too comfortable with how things are going, something new pops up. We were about to leave the hospital on Saturday when a nurse came in and told us they were concerned with Beckett’s sodium levels. Each morning during rounds, the care team discusses various nutrient levels, so we’re used to them adjusting nutrition depending on what is high or low. We didn’t think anything of them saying that Beckett’s sodium levels were low and they were adding a saline drip. However, after the saline IV he was given, his levels continued to drop which was very concerning to his care team. Low sodium levels can cause seizures or neurologic issues so they wanted to make sure it didn’t dip further and also wanted to know why it began to drop in the first place. 

 

They ran several tests and everything came back normal. They called us with several updates on our drive home that there was no sign of infection and that his sodium was starting to slowly rise again (which was also a concern because rising too quickly can be dangerous). They currently think it could be related to his brain injury, which can impact the signals it sends to his kidneys to let go of sodium rather than hold onto it. They called the endocrinology team and the current plan is to start him on a steroid to increase his cortisol levels and see if that helps trigger his body to hold on to the sodium better. We’re relieved that this is a fairly non-invasive plan and may even help his lung function while he’s on it. Later, they will slowly wean him off of the steroid to see if his body will maintain sodium levels without it. 

 

Both twins have upped their feeds, with Beckett getting 4ml of milk every 6 hours and Juliette now getting exclusively milk at 18ml every 3 hours. They removed Lettie’s PICC line today, which was a very Big Girl Move. Beckett also had his ostomy bag put on because he was producing enough stool to graduate to that step. The nurse that specializes in ostomy care and parent education gave us a lesson on how it works, how to change it, and how to be involved in his ostomy care while we’re still at the hospital. He has the smallest size they make, which is still very big on him. It’s definitely too big for him to fill, which is good because he has mostly been using it to create a tiny baby toot balloon. 

 

Before I was discharged from the hospital after giving birth, a social worker helped sign us up for Medicaid. If your baby has to stay in the NICU for longer than 30 days, you qualify for Medicaid and it helps pay medical bills that your insurance doesn’t cover. This was a huge relief because we knew that a months-long NICU stay for two babies with serious health issues was going to cost many millions of dollars and nobody should be worrying about how much their infant son’s life-saving abdominal surgery costs. Our patient care coordinator has also been helping us figure out the different hoops we have to jump through to get assistance in case either of the twins has a disability when they’re older. In order to get a disability determination, we needed to schedule a phone interview with social security for July to get on a 5-7 year waitlist. We may not even need a disability determination, but we have to take the steps now just in case we do. Because of their birth weights and Beckett’s brain injury, both twins will also qualify for in-home visits from various therapists to help them with whatever they may need developmentally. We didn’t know anything about these resources before this, but we are incredibly grateful that we have access to help for our children and it is (mostly) accessible.