It is now Friday evening, about 8:00. Sara is being discharged and we are heading home here in a bit. Samuel’s still hanging out in the NICU with folks that can take better care of him than we can at this point.
Today was rather uneventful until this afternoon. Samuel has been handling his feedings better (thru the NG tube) and they are slowly increasing the amount of food they give him. He has a far way to go as a ‘full’ feeding is 45ml and he is currently taking in 7. Alas, we are making progress in that area.
This afternoon was a little rough emotionally. We met with 3 specialists back to back to back who all had a lot of information to tell us. The Geneticist filled us in on his ‘laundry list’ of observations - the list seems to keep getting longer. I’m not sure how helpful it will be for me to try to run down that list as some of those things might wind up being nothing of significance. One way or the other, the Geneticist did indicate that none of the things we’re looking at is life threatening at this point. Much of what we have to do right now is watch how he does - is he digesting food? is he gaining weight? etc.
The Cardiologist was next (Dr. Ben Horne, for those of you who know him). After finishing his assessment and looking at the ultrasound from yesterday, he did run through the 4 or 5 areas of concern that he has with Samuel’s heart: 2 holes, aorta is a little small, the heart is turned a little to the right. The holes will require surgery, most likely by 6 months.
Then we met with the Neonatalogist (i.e.,
After the Neonatologist we met with the occupational therapist who we enjoy meeting with because she actually gives us practical things we can be doing to help our son physically as opposed to just giving us more information.
Apparently Samuel is still in the process of transitioning from life in the womb connected to Sara to life outside and on his own. All of his bodily systems are having to figure it out and start working on their own. That means some of the issues we’re seeing could get better and resolve on their own OR there could be issues that will arise as his body continues to take over.
At this point most of the doctors seem to be indicating that Samuel will be in the NICU for at least several more days most likely a good bit longer depending on how he is handling feeding etc. and what they find as test results continue to come in.
So, if you would, please pray for Samuel to eat well. Please pray also that we would have wisdom to figure out how to do the 2-kids-at-home-and-1-in-the-NICU-30-minutes-away thing. Sara’s mom comes in tomorrow (Saturday). My parents have been real troopers with Anna Catherine and Colin at the house. They’re heading back to PA on Sunday. Sadly for them the time they got to come up to the hospital this afternoon to see their grandson was taken up with him getting a kidney scan and then taking in two specialists’ reports. I think in the end they got to see Samuel for about 15 minutes of their 2 hrs here. So it goes, I guess.
Thank you for your prayers. I thought this was going to be a quick email, but alas, here we are again at the end and it was longer than I intended. Thank you as well for your perseverance in all of this with us.
On our way home,
grant
