The last 24-36 hours have been rather encouraging for us - not that there has been a bunch of ‘good’ news, but there hasn’t been much hard news - and none today! We really praise God for that. We were kind of burning out on the difficult-conversations-with-specialists thing.
So, here’s a brief sketch of where we are. Samuel is at, and has been for almost 24 hrs now, his full feeding of 68ml every three hours. As well, he took 18ml thru a bottle this afternoon! We were so excited to see his little jaw moving as he tried to (and did!) suck. It may have been the Occupational Therapist, the new nipple she tried on his bottle, Samuel growing up and getting more used to the idea OR all of the above. But whatever the reason, we were really excited that he seemed to be getting it. Now there is a real long way to go before he’s anyway near being bottle fed. Those 18ml took probably 20-25 minutes with frequent breaks for swallowing and catching our breath. At that rate, a full feed of 68ml would take over an hour - if he could muster up the stamina. And then to have to do it in another 2 hours and 7 more times that day. Poor guy has got a lot working against him.
To better facilitate his feeding (and therefore growing - which is very important as heart surgery is almost inevitably in his near future) we are having a G-Tube placed in his stomach tomorrow. This is also called a PEG (which stands for words that mean, I think, thru the skin (P), with a light (E) and into the stomach (G)). With this in place, he’ll be done with the NG tube running through his nose and we may be able to get him home sooner than if we tried getting him to be fully bottle fed. They do call this surgery - for it is. They have to take him to the OR, put him under anesthesia, cut a hole in his stomach and place this tube-jobby and then bring him back out of anesthesia. We’re not all that excited about our 8 day old son having to undergo surgery (especially since he has many more in his future). But maybe it’s a good thing we are starting with something rather ‘minor.’
So, that is scheduled for 12:30 tomorrow (Thursday).
Today, during the day and then again this evening, we have been able to just hold our son a good bit. He’s out from under his tanning light, so we are more free to handle him. He also is off of the IV, so with one less chord to worry with it’s hard not to snatch him up and snuggle him as much as we can. But, alas, we must say goodbye to him every day (sometimes several times). The photo attached is from this afternoon ... thought we’d get him good and cozied up before we left. When we got back 3 hours later after dinner at home and some play time with our other two children, he was in exactly the same position. It’s a good sign when he hasn’t been moved much.
Thank you for your ongoing prayers and support and encouragement. Please do pray that his surgery would go well tomorrow; that it would be event-free and that it would facilitate his growth and speed his coming home with us.
I remain indebted to you all,
grant
