No Place Like Home

So, when can Matt come home? That is the big question. All along we have been told it would be around his due date (April 5). We found out last week though that that wasn’t going to happen.

He is supposed to get 100% of his milk by mouth two days in a row in order to come home without a feeding tube, and right now he’s only getting between 10-20% on a good day.

I spoke with one of the neonatologists today and he said that while it’s still possible, he doesn’t think Matthew will be able to make enough progress to go home without a feeding tube even here in a few weeks. But since technically by gestation, he is a newborn, he should just now be learning to eat by mouth anyway, so they want to give him 2-3 more weeks to try to work it out, otherwise he will be sent home with his NG tube. Even then he really needs to be eating about 50% by mouth in order to go home with the NG tube, so he still has quite a bit of progress to make. If they try to send him home and he’s eating less than 50% by mouth, there’s a good chance that his eating problems will last much longer.

At about 44-45 weeks, Primary Children’s Hospital will evaluate him for a G tube (in the stomach instead of the nose). That requires a simple surgery but it’s a little safer and a better long term option if Matthew needs that. Because of his Trisomy 21, they may be willing to evaluate him a week early but that’s not guaranteed.

Matthew’s doing fine with his current oxygen level (about 24%) and flow (.3%), and they are moving him toward the level and flow that he will be sent home on. So we know he will be sent home on oxygen, but that’s not what’s keeping him from coming home- it’s really just the eating.

So basically we are looking at about 2-3 more weeks in the NICU and then home for a week or so before going to Primary Children’s. But we will just have to see what happens. Matthew Lucas is a strong boy with a mind of his own, and so we will see what he shows us over the next few weeks. He tends to surprise and amaze.

With the neonatologist, we also talked about putting Matthew on Primary Nursing which means the nurses that work with him will be limited to a pool of about 8 or so who already know him well. That way, there is more consistency with his care, especially with his eating.

Now that he’s 40 weeks old, he is awake a little more often, so we are making adjustments at home that will allow us to be up at the hospital more frequently to give him the love and attention he needs.

The nurses up there are fabulous, and I do feel more comfortable knowing that those who will take care of him from here on out are all ones that I know well and trust (at least at night because that’s when I am usually up there), but still they aren’t able to give him all their attention all day every day.

So we are so grateful for all the angels in our life that are helping to make it possible for us to be up there more as we finish up these last few weeks at McKay-Dee. We can’t tell you how much we appreciate you and all those who have sent love, support, and prayers. We love you all.🥰