Updates

So things are going well.

Having Sebastien at home is a blast, most times. He eats like a champion, a little piggy. He’s been to the pediatrician twice since he’s been home…gained half a pound in a week! On Monday he was a solid 8 pounds. I’m kind of bummed because I bought so many newborn outfits assuming he’d be home well before he was released. Some still fit him, the rest hopefully Sam will wear one day soon.

He loves being awake and involved with everything. Why sleep? There’s an entire world to see, things to do. Yes Sebastien, but momma needs to sleep, so please sleep. That’s what I tell him each morning. We’ve been keeping to a schedule similar to what he was sent home on, the standard 3 hour schedule. We’re no longer doing 3, 6, 9, and 12, but for the most part he eats every three hours. Though yesterday I swear he ate every two!

Samuel is still chugging along. His doctor’s focus right now is on growing him, not trying to make other drastic changes. When asked about moving him to the cannula or an open crib, he said that those changes would require Sam to work to hard, that we need to conserve his energy for growing. I’m perfectly ok with those reasons because I do want him to grow, not work hard yet.

He’s now 43 weeks though, an ‘old’ baby for the NICU. He’s much more alert these days and very aware of what’s going on. So we’ve talked to his doctor and his nurses and come up with a plan for developmental stimulation….We’re now popping the top of his isolette when he’s awake so that he can see things, hear everything, so people can see him and come over to talk to him and interact with him. Anytime he’s dozing and someone comes over to talk to him, he immediately opens his eyes and grins. We also put a crib music and light box in for him so that he can get further stimulation. One of his nurses even made him a little sign so that everyone could see it and be aware.

One of his nurses had the idea to drench a couple q-tips and his pacifier is some of the remaining breastmilk from his syringe and let him suck on them. He LOVED it! Eyes got big, started sucking away. So I’ve asked all the nurses since to do this as well. So far everyone has been amenable to this.

As far as all his systems go: his conjugated bili levels are now the lowest they’ve ever been (he’s finally losing some of the oompa loompa look, though still very jaundiced), his heart is stable, lungs are fine. He’s had several tests run recently, checking his growth hormone levels (normal), his pituitary gland levels (normal), thyroid (normal), etc. His feeds are still slowly, ever so slowly increasing. He’s now getting 3.2mL/hour. They’ve been increasing 0.1mL/hour about every 12 hours or so.

Sticking out his tongue at all the people who thought he wasn’t tough. I’ll show them!

Hehehehe, I’m SAM!

Yesterday we got the worst news that we’ve had in a while. And really, it was pretty expected, nothing I’m actually upset about. His eyes have progressed to Stage 2 Plus for ROP. Last week he had Stage 2 for the first time, but this week there was a severe degradation. This means he’s a prime candidate for the laser surgery to correct this (we don’t want him going blind after all!). The surgery is fairly routine, supposedly quick and painless, similar to LASIK surgery I guess. The question is: will he have to be intubated for it, or what? They can’t do the surgery around the CPAP….but is he ready for the cannula? We already know his doctor isn’t in a rush to try it since it will require him to work harder. But today, they decided to try!

When I visited with him today, he looked comfortable for the first time in a long time. His oxygen was up significantly, but also very expected since going from CPAP to a cannula is a HUGE, drastic change. At first his breathing was very rapid, but it started to level out. Funny enough, his first blood gas on it, just an hour and a half into being on the cannula was good, very good in fact. They’ll do another one at 4am, just a couple hours before his eye surgery. My fingers are crossed that he’ll get to remain on the cannula, but I won’t be surprised if he returns to CPAP. His doctor didn’t want him on it; one of his former doctors was there today and tried it out.

Ahh, but it’s so nice to rest for once.

Hi there!

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4 thoughts on “Updates

  1. Mom says:

    OHHHH! I see Samuel has his hair growing. He looks so cute. I am so glad he is improving.

    The pictures of the twins are so cute. Mandy and I loved looking at them.

  2. Imelda says:

    Too precious, love those angel faces on your boys. We will pray for Sam and his surgery tomorrow. Isn’t it crazy how all the feedings bleed together. I always felt like bill murray on the movie groundhog day. It gets better but those growth spurts are a challenge. Thanks for the updates. Keep up the great work for these guys. You guys are doing awesome.

  3. jessica says:

    They are beautiful and to hear all the great progress of Samuel, lighted up my day god is good, and Sam has been putting great strength .

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