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9/5/19 - Day 16, More Snuggles

I get from other NICU families that you never really stop counting the days... it’s been 16 here so far. Trending positive, but still no word about a timeline for heading home. We did hear that we might be able to do a bris in the hospital sometime next week, though. At least now Ronen is snugglable. Apparently he breathes better lying on his tummy, so he mostly hangs out that way. (Not worried about  SIDS like you would at home since he has a myriad of sensors and bells attached to him that would alert his people immediately if something was wrong.) He likes to sleep with his hands up by his ears, proving that he’s related to his brother. As for meds, he’s been weaned off both morphine and medazolam, and is now only being administered pain meds as needed. He’s no longer on IV nutrition (TPN) and is being fed 60 mL breastmilk through his NG tube every 3 hours. Extubated yesterday, he’s now tolerating the CPAP in his nose... so he’s a better man than I, for sure. In the meantime, he’s kvetchy today, and that means we get to hear his voice. No complaints here.  We’re still in the day to day, but slowly becoming aware of what this might mean for the rest of Ronen’s life — that optimistically his surgery may be one and done but that it’s possible he will need treatment and services in the long term. One step at a time. I’m a little biased, but if Ann Geddes ever comes out of retirement for a newborn NICU shoot, I have the perfect model, “pipes” and all.

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