Week 3: Will is growing, up to 6 lbs today. He's had a lot going on this past week. After a very brief but much needed respite to the north woods last weekend, we returned Sunday night to our strong boy doing exceptionally well. He nursed great, almost an entire feeding and wowed the staff the entire 48 hrs we were away. On Monday the team decided after some discussion that he was close enough on his oral feeds that he could trial having his NG tube (feeding tube) removed and see how he does. So instead of getting a fixed amount on a scheduled basis, he would transition to ad lib feeds, with a goal amount to accomplish in a 12 and 24 hr window. The first day he of course impressed everyone and exceeded his goals. In fact he looked so good they started talking about discharging him at the end of the week, maybe as early as Thursday!
Now we have been anxious for him to come home of course. But honestly hadn't done enough at home for him to be there yet. Between months of bed rest, and then spending days in the NICU it all of a sudden felt like we had a LOT to do. So we went into overdrive with laundry & cleaning (along with a lot of help). I stayed the night here on Tuesday to get into the "real" rhythm of around the clock cares/pumping/naps etc. We were excited, but I'd be lying if I said we weren't nervous...maybe even terrified a bit.
Will had his own agenda, as usual. The entire day he didn't feed as well, although seemed to perk up in the late afternoon. But then overnight his body temperature was abnormally lower, he was exceptionally sleepy and again did not eat well. He was having more episodes of low oxygen levels. He didn't quite make his 12hr volume goal and that was with a lot of effort on every one's part. I was exhausted from only 3 hrs of sleep - which was divided into separate 1 hour intervals, and especially concerned that he was not his usual self. His night nurse agreed as she has taken care of him before, and we asked the doctors to take a look at him early Wed morning. It all could be a simple point of Will reminding us he is only 35 weeks gestational age, and is tiring from the work of eating all on his own and just being premature. However with the constellation of things happening at once his team was concerned he may have some kind of infection causing all these changes.
At this point discharge was put on hold along with the "little things" he needed to do before leaving (car seat test, hearing screen, heart screen). Labs were checked and while some were reassuring, not all were normal. By now Chris had sent me home for some real sleep (defined as anything longer than 1 hour) which was needed, because all I could do was cry and worry. Will was started on antibiotics, planned for at least 48 hrs or as the culture results dictate. Unfortunately that meant restarting an IV, or in Will's case they tried. And tried and tried. He was a tricky one at delivery too I was told. After more pokes than Chris likely told me about, they still weren't able to get his IV in so had to give him IM shots for the antibiotics. Another ouch! But necessary. He got an additional two shots 12 hrs later, and then last night they were successful with another forehead IV to finish his antibiotics.
Luckily he has perked up a little more in the last 12hrs, so is taking enough of his feeds yet that he so far doesn't need his feeding tube replaced. His body temp and color are much better. He is still sleepier than before, but appropriately mad when they poke his heal and likely needing a little extra time to recover from all the activity. Cultures are negative so far.
We may not end up knowing for sure what caused his little set back, but I am happy he already looks better. It could have been a start infection that we won't pick up on tests but the antibiotics are kicking in. It could have been just too much work to eat & gain weight & maintain his temp & coordinate breathing only 24 hrs after asking him to do it all on his own for a guy who wasn't supposed to be born yet! Or a combination of those things. Today the team thinks his trying & failing to maintain his temperature at least was part of it, and he had a cold shock as it were. The rooms were noticeably cooler that night (happens in every hospital I've been in with weather changes - building is too big to keep up) and he wasn't in a footed sleeper but a short-all with socks under his blankets. This effort took so much out of him that the other points suffered. At least now we know he may be more temperature sensitive and can plan accordingly for home.
So today things look back on track. His other tests are being set up to finish in the next few days. If he keeps improving again, we are so close to all going home. But we are still terrified!
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