Riding the coaster

They said the NICU experience was like being on a roller coaster.d

They weren’t lying.

Some days I’m flying high, other days I’m down in the deepest valley.

Both boys are still doing well.

Since my last update, the bili lights have made reappearances for both, they’ve been taken away, brought back. I just cherish the visits when they’re gone b/c then we can see their eyes open, look around. I know they can’t really see yet, but seeing their eyes, that’s when I feel the biggest bond.

Sebastien is still chugging along. He finally got to start on breast milk yesterday — they’re keeping a close eye on his belly, but so far he’s tolerating the feedings. His feeding tube still bypasses his belly for now though.

That kid is going to be an athlete! I’ve yet to capture it on camera, but sometimes when he’s laying on his belly, he arches his entire back up, like a yoga down-dog position, then kicks out his legs, lifts his butt, pushes his chest up. A preemie push up.  He’s going to crawl out of the NICU!

I got to do some kangaroo care last week, a simple hold the next day. Scott got to hold him for the first time yesterday (and Sebastien made the sweetest cry you’ve ever heard). I’ll go in and do kangaroo care later today.

Sebastien does have a PDA, a very common issue with premature babies. Right now the doctors aren’t going to do anything about it; they want to see if it closes on its own, especially since the latest studies are showing that closing the opening doesn’t necessarily help babies in the long-term.

Samuel, Samuel, Samuel

He’s our fighter, our little Scrappy.

They still haven’t been able to get a feeding tube down Sam’s throat; and they’re not sure why it won’t go down. Maybe b/c the other tube is just taking up too much room, and he’s so small. We don’t know yet. He’s not starving though, he’s getting IV feedings of other nutrients. But I so want that boy to start getting milk! But if they have to watch Sebastien’s belly closely, they’re more than doubly concerned with Samuel’s belly. Is it even ready to accept anything, even if the food does bypass the stomach and go straight to the intestines. This will be the biggest concern we have for the next many weeks ahead.

Samuel also has a PDA in his heart. He also has two other issues: VSD and ASD, basically two other holes in his heart. These aren’t related to prematurity. What’s interesting to me is that he has these two holes but his brother doesn’t. The VSD will need to be fixed, if it still exists when he reaches 8-10 pounds. Fixing it will require open heart surgery, basically a bypass. Right now they think it’s big enough that it will not likely heal/close on its own. When this requires surgery, they wait till the babies are big and strong enough, maybe at 6 months of age, or 8-10 pounds. The ASD often does close on its own.

Maybe these heart issues are why he’s having such trouble with some of his monitors. The other day was scary beyond belief b/c all his numbers were going crazy. Turns out they moved one of his monitors from his arm to his foot….when it was on his arm, everything was stable and normal. When the monitor was on his foot, everything went haywire — his oxygen kept having to be adjusted, his fluids, his well, everything. One nurse finally moved it back to his arm, and viola!  all stable and normal again. This is another instance where they can’t come up with an answer.

On a positive note, Samuel pooped today! Took him 1o days but he finally did it!

In other positive news, yesterday was the first day I didn’t cry at Samuel’s bedside. Every other time I’d been there, I kept seeing him in the delivery room, replaying everything in my head. Yesterday I was able to be 100% upbeat and positive. I just tell myself that he’s been such a huge fighter up till now, there’s no way he’s going to give in now. I guess I’m still just terrified of losing him. This week I started reading him books. The first one I read was Dr. Seuss’s Oh the Places You Will Go. Big mistake — I started bawling. My biggest complaint about the NICU experience so far: nothing is private. So it was recorded in his chart that I cried, the social worker came to see me the next day, the patient advocate person came to see me, all of Samuel’s nurses knew. Geez, can’t a stressed mom have a break?!

I feel better about things now, even with the new heart issues we learned about yesterday.

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3 thoughts on “Riding the coaster

  1. I think you never know about Samuel! He is really uncharted territory, so the current body of medical knowledge may not apply to him. That heart thing could be something Sebastien had at Samuel’s body’s developmental age that is natural and went away on its own. Abnormalities on him could just be things the doctors don’t even know about because babies have them so young the machines don’t pick them up–because they’re still in utero! I will keep my fingers crossed that that is the case. Keep your spirits up Sandi and keep reading to and touching both of them! I know they love you being there. Take care.

  2. teamla says:

    (hugs)

    We went through the same thing. I cried over my smaller baby a lot. You’re right about the lack of privacy – luckily they tend to understand. I used to cry during rounds because I would press them for answers, and so much of the NICU “dance” (two steps forward, one back, as I am sure you are discovering) is a waiting game and they simply don’t know.

    FYI, our smaller baby had a PDA which they did try to close using indocin. It went from moderate to small without any side effects, then turned into a PFO that is benign, but they are watching.

    Thinking about you and your babies and sending positive thoughts your way.

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