We knew Day 7 would be a big day…and we were right!
We were at the NICU by 8:30 to make sure we didn’t miss morning rounds. The crew came through in the morning to discuss the care of L and N, and since we were there we were able to listen in on the details, the plans, and ask questions.
They discussed their feeding, caloric intake, weight, and other growth related items. J and I have spent the last few days obsessing over their feedings. Probably because there wasn’t much else going on. I mentioned that on Friday they backtracked a little. Apparently that was very normal for babies their age. As of today, they both still have tubes, but they attempt the bottle first with each feeding, and we use the tube for whatever they won’t drink by bottle. L is up to 40 mls and N is back up to 30 mls. (Feedings are every 3 hours). Each of them finished an entire bottle at least once today. We watch these numbers closely (I am accountant and J is an engineer…we like nerdy details)…but in general, they are doing great for 34 week babies, and these feeding goals are typical ones unrelated to their brain issues. In fact…they are surpassing expectations. I give daddy a lot of credit for this. He takes ownership of the feedings, and the boys do better for him than they do for the nursing staff.
On another feeding note, yesterday afternoon marked the first time they started taking bottles of breast milk consistently. So far, J believes they have an easier time drinking it, and it seems they are keeping more of it down. (They had some high residuals with the formula, which for lack of a better term is the tube equivalent of spit up. In other words, they might get fed 30 ml, but then 10-18 ml were coming back in the tube, often undigested.) So…we’re anxious to see if they start gaining weight after a day or two of expressed feedings.
Weights as of tonight: 4 lb 12 oz, and 3 lb 8 oz.
Both boys are still in warming isolettes. L is close… In fact, at the morning rounds they said to move him in to an open crib to see how he did. He failed… He was in the open crib less than an hour and couldn’t maintain his temp. But the warming isolette is only helping him a little. So if he starts gaining weight back, he should get better at maintaining temp in no time. N isn’t ready to think about a move yet. But he’s much smaller, so that’s no surprise.
I’ll also point out this is a typical preemie issue, and not related to their brain issues.
Both boys have been on room air since Day 2 / Wednesday. Obviously, the steroids gave them a boost, and that’s why they aren’t battling typical preemie issues here. But let’s not skip over how significant this is. Some Dandy Walker / Lissencephaly babies have such a hard time with this area alone, that they do not survive. I’ve read about multiple families who lost their baby within the first few hours. We are SO thankful that these boys came out with the ability to breath, and on their own no less.
We met with an endocrinologist today. With both the agenesis of the corpus callosum, (ACC) and absent CSP mentioned on the early ultrasounds, pituitary gland issues can be a problem. The boys will receive some blood work to assess hormone levels and help us see whether or not they seem to have issues. This will be something that requires follow up later on in life as well. BUT…this is also a very manageable issue. If it turns out to be a problem, hormone replacement therapies can be very successful. For now, we’ll be on hold until blood work comes back. (Possibly by the end of this week).
The ophthalmologist also visited. The initial exam was to test their reaction to light, and see if their pupils had any abnormalities. Both were normal. The second exam was to look through their dilated eyes to examine their optic nerve. The DR said theirs is healthy, but it is a little small. Her assessment is that the boys DO have vision, but have the potential for some vision issues. (Rather than far/near sightedness, think more in terms of the brain being able to interpret what the eyes are seeing). No way to predict severity or if they will even have issues, but confirming that they will have vision was a huge relief.
No one has been by to talk about this, but the general consensus of our family is that they can hear. They react appropriately to sudden noises, and even seem responsive to voices.
The boys had renal ultrasounds last night, and both were normal. This may seem like an odd test, but with several of the disorders, kidney issues would be expected.
We also had visits from lactation, and social visits from a case manager and a neo natal doctor, both of whom we met during the tours.
All in all, this was a very very good day. The MRI didn’t get performed today, which means we’ll be lucky if it is dictated and reviewed by neurology by Wednesday. But there is a LOT of good news in the above assessments, and so much to be thankful for. There are a lot of assessments and blood work pending, but so far the only issues we have identified are:
- Low tone
- Small optic nerve, with an expectation of some vision issues
These boys continue to amaze and inspire us. We are in love. God is good.
If you are still reading after this novel, then bless your heart, you deserve some photos!