Your prayers are more appreciated than I can express. Your emails back are, while hard to read at times, encouraging and challenging. Thank you for expressing Jesus’ love to us in the midst of this.
After yesterday morning (what with my tears and all), it basically got worse. No worries, Samuel is fine (for Samuel). But he just had a rough afternoon and we got more hard news.
The rough afternoon started with us trying to bottle feed him. While he did get in 2ml through the bottle, it totally wore him out and he wasn’t able to handle both breathing & sucking and swallowing - since in order to do the latter you’ve got to stop the former. So we didn’t push that envelope too much and didn’t even try today. He is improving in his ability to handle greater volumes of food, however, through the NG tube. When I left this afternoon, he was up to 55ml a feeding. The 45ml ideal that I had mentioned previously, was, as it turns out, the low end of the ideal amount. The ‘real’ ideal is 68ml (something like 150 cal / kilo / day). So, on the current plan he should hit that target by 1am Wed morning. But yesterday afternoon was a bit rough for him and after we tried the bottle feeding we weren’t allowed to hold him for rest of the day. He also continued to have some trouble keeping his Oxygen saturation level up - that’s the percentage of cells that have Oxygen attached to them, as I understand it. The higher the better, even up to 100%. Anything under 85% and he starts beeping and if it is sustained (as it was yesterday afternoon), nurses and doctors start paying attention and getting nervous. Not what you want in the NICU; the less attention on your kid the better. At any rate, he was able to get it figured out after a little while, but it only added to the ‘weight’ of the afternoon.
The news we got that was difficult to hear came from the Pediatric Ophthalmologist. He confirmed the suspicions that the collaboma that Samuel has (the misshapen pupils) do involve not only the pupils, but also the retinas and the optic nerves. Collaboma basically means something like “missing tissue.” So his pupils basically look like ovals and the retinas and optic nerves didn’t fully come together and fuse. Bottom line, he will never see well and is rather likely to be closer to the blind side of the spectrum. There is no repair for this issue.
While we do not have a diagnosis (we’re awaiting the results of several blood tests that might narrow down the possibilities) and therefore no prognosis, we are beginning to interact with the likely reality that Samuel will have significant special needs throughout his life. We are yet, I believe, to have a Dr come to us and say, “Actually, things are better than we thought.” It has only been that more items get added to the list. That’s exhausting.
This morning, however, we were able to hold Samuel for about 3 hours. That is such sweet time. I think we might need it more than he does. Pray for more of that. Pray that he would continue to handle his feedings well - especially since they stopped his IV last night (a good thing). The more tubes we are able to disconnect him from the more steps we take toward getting him home. There are several significant hurdles that need to be gotten over before that is a possibility and it isn’t likely to happen for a few weeks at any rate. But we do rejoice in small things and are thankful for them.
God has been good to us in all this. He’s expressed his love through many means: song lyrics, John Bunyan, corporate worship, his Word, and especially through you and your kindnesses to us. Thank you. I attached a few pictures from the last 24ish hours. Thank you. grant
