A new schedule

So far things at home have been moving along. I’ve been trying to keep Sebastien on his hospital schedule. It mostly works, every once in a while gets shifted. Typically we feed on the 3, 6, 9, 12 schedule.

The boy is an eater! He likes food. Mostly, that’s the only time we get full-on screams out of him, if we aren’t ready with the food. He’s getting mostly bottles of BM, two are formula per the NICU’s guidance (for extra nutrients). I do want to BF him more, but he takes soooo long, and then he’s hungry again within an hour. There’s definitely enough for him to get a full feed, but since he has to work so hard for it, I think he burns too many calories right now. So pumping while feeding it is. I don’t mind actually since with a bottle, he can be done in 15 min or so, which is important for the overnight feeds.

He’s been a bit fussier the last couple of days, but I’m thinking it’s because he needs to poop. The formula may be plugging him up. Poor baby.

We’re working on tummy time each day — he’s really strong and can completely lift himself up, but he sure yells about it and doesn’t appreciate being forced to work hard. His vibrating bouncer is the best invention ever! I love the Moby wrap, though he doesn’t always like to have his head covered, but he doesn’t have enough head control to leave it out either….a conundrum we’re working through. He only lasts about 10 min or so in the swing before he’s done.

***********

Ah, little Sam. He’s doing very well. The big bummer is that his doctor doesn’t think we should expect him home until around August. He’s doing well, but he still has so far to go, so much to work through.

His feeds are at 2.5 mL/hour. He’s mostly tolerating (the last two nights he threw up a bit so the feeds were held for a couple hours, then resumed). The closer we get to the 3 mark, the more nervous I get. That’s how far we got before the last time he no longer tolerated.

He’s rocking his CPAP settings at a PEEP of 5. If we were to look purely at his blood gas numbers, any doctor would wean him down further, maybe try the cannula. I wish we could just to make him more comfortable. But because his belly is still so large, we can’t. He needs the extra pressure to combat his lungs getting pushed up from the belly. The doc thinks that Sam might need to grow into his liver/spleen rather than those shrinking.

The docs also seem to have figured him out better, know how to treat him, help him along. The pulled one of his old PICC lines because they thought it might be causing issues (his platelets started dropping, his CRP rose slightly); sure enough, blood from it tested positive for staph epi. So he’s on antibiotics again, but he thankfully didn’t get ‘sick’ again.

Doc also thinks that even though he’s doing well now that at some point we’ll have to go in and surgically examine his belly. He still has contrast in there! So the thinking is that it’s caught in the duplication cyst. But since he’s tolerating, we continue to wait, continue to feed, continue to work on the liver. The conjugated bili levels are coming down! Sam is still quite jaundiced, but he’s no longer my Oompa Loompa.

His eyes have now progressed to stage 2 ROP. He has an inguinal hernia that will have to be repaired at some point. His echocardiogram showed that his VSD is still causing pulmonary hypertension; at some point they’ll most likely start him on Viagra. Did you know the original purpose of this drug was to treat pulmonary hypertension? I sure didn’t. Researchers then found out the side effect, and then it was rebranded as Viagra. So as long as it helps Sam’s heart, and he doesn’t have a hard-on lasting for too long, I’m ok with it. 🙂

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3 thoughts on “A new schedule

  1. Rebecca from FF says:

    Little Sam as defied every expectation so far – praying for a homecoming much earlier than those silly doctors think! (((hugs))) for you all! Keep up the GREAT job!

  2. Mom says:

    Oh GOD please bless that little Samuel and touch and heal every thing in his body. He is so cute and I love him so much.

    I am so thankful that Sebastien is home. I can’t wait to hold him again.

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