After a pretty rough day yesterday (OT, PT, Speech Therapy, rounding Drs, feedings, an ECO) Samuel had a much more restful (sleepy, really) day today. It was in fact a pretty great day.
He really did sleep almost the whole time we were with him today (about 12 hours). When he would get worked up (when changing a diaper or something) he was fairly easy to calm back down. Yesterday he required a bit of O2 because when he finally did get to fall asleep his O2 saturation levels were too low. He lost the O2 support last night and did pretty well all day today without any extra oxygen. That is a good thing. We'd really like to not take him home on O2.
Some other highlights from the day:
· he slept
· he had a 'swallow study' today to determine whether or not we could attempt bottle feeding him. He failed. He's not real good at swallowing. And when he does swallow, a decent amount goes down the wrong tube. If he gets too much liquid down in his lungs, that can lead to pneumonia, which is a really bad thing for newborns (it's actually life-threatening). So, we're holding off on any further attempts at any oral feedings. We're not sure what we're going to do about this at this point. The Speech Pathologist called in a 'retired' expert to get her opinion and she too was a little stumped with where we go from here other than through the G-tube.
· he slept
· they have further compressed his feeds. He is now getting his full feed of 70cc over a 45 minute period. It had been over a 3 hr period a day or two ago so we're progressing nicely. The goal is to get him to tolerate that volume in 30 minutes. Hopefully we'll be there tomorrow.
· he slept some more.
· Today, for the first time in his life, Samuel went outside! They actually let us take him off of his monitors and out of the hospital, if you can believe (see the attached pics for proof). Granted we were granted a 30 minute leave, but we loved every bit of it.
· he, as you might guess, then slept
· He got rid of his IV today. Not b/c they took it out but b/c it got clogged or something. It's basically unusable, so they will likely remove it tomorrow.
· In talking with his doctors this morning, we have made the tentative plan for discharge on Friday. We will be coming back to
· Between now and Friday we will be learning how to use his feeding pump; how to do PT with him; give him his medications and who knows what else as we prepare to bring him home.
We are very excited about this prospect and hope to have a few days in our own house getting situated with Samuel and his care before the older two return from PA & MD and the zoo opens up in our house. As well, we're a little apprehensive about having Samuel on our own, like a normal newborn. There has been so little about this experience that has felt (or been) 'normal' that we're not really sure what anything should look like. Paradigms that we had with our other two kids we just haven't been thinking in those terms with Samuel ... where ICU, monitors and hand-sanitizer have been the norm. So pray that God will give us the grace, mercy and wisdom to find our way in this new normal.
As well, before I sign off for the night, I'd ask that you pray for a little girl named Ellie. She is the newly adopted daughter of some fellow Greenvillians (Greg & Denise Horrocks) who was scheduled to have her 2nd (I think) operation tomorrow (Wednesday) on her spine. However, her parents got news today that she has a Staph infection and surgery has been postponed a week until she can get a full round of heavy antibiotics. The Horrocks have already been here 20 days and with 5 other children at home they've got a difficult road. Please pray that Ellie's infection would clear up quickly and not turn into anything worse, that they might all get home and be a family finally.
Thank you for your confidence before the throne on their and our behalf.
grant
