One of a kind

We sort of always knew that my pregnancy was unique, that our kids were unique. Of course, everyone says that, but we got a bit more confirmation today, especially concerning Samuel. After all, we had mono-di twins (identical twins, shared placenta, two sacs), severe, selective IUGR affecting only Samuel. Sebastien was on cruise control in utero, Samuel’s always been fighting.

Dr. Specialist in Baltimore once commented to us that he had gone beyond the standard textbook protocol with us. Starting at  week 20, his recommendation was that we get cord occulation done for Samuel. We just couldn’t do it; we weighed the risks of continuing, giving him a chance, gambling a bit with his brother. How much has that gamble paid off?

Today we met with Samuel’s primary doctor; unfortunately he’s rotating out and we’re going to have another primary doctor for him for the next 5 weeks. We’re sad to see him go because we feel his instincts have kept Samuel alive. He’s also a unique doctor in that he’s actually mentioned the word ‘miracle,’ suggested we pray, referred to God. Not many doctors do that.

Most of his discussion today involved the many unknowns with Samuel. First, there’s no script or track record we can follow for his care. Why? Because there aren’t 27 weekers who weigh less than 400 grams. Most babies who are born smaller than 400 grams are under 25 weeks. All really. He said that this hospital has never had a 27 weeker at this weight, no doctor or facility has had this. We’re in uncharted territory.

We talked a bit about his delivery. The doctor said very few doctors and hospitals would have revived a baby at less than 400 grams. They’re survival rate is typically very low and/or they have major issues. He said that a lot of times they’ll do it, if the parents request it. He said he’s not sure if he would have done anything different in the delivery room, but we begged them to try again. We did; Samuel’s been remarkably stable.

Most of our unknowns still stem from the actual delivery, the trauma he experienced? How will that affect him in the long-term? We don’t know, they don’t know. Most of the major signs that would point to future problems haven’t come up. We do have one to watch for soon….a sign that won’t show until about 6-8 weeks after birth.

Since Samuel has always been stressed, he might not suffer any effects from the low oxygen/lack of oxygen after delivery. He was already used to it. All tests they ran on him right after were positive, showed good signs.

Overall, he’s more than pleased with Samuel’s progress, everyone is. Our current goal is to get him growing, gaining weight, getting larger. We’re working on it! We also have to get him off the oscillator/ventilator. When that will happen, we don’t know.

Our biggest concern right now is the VSD, the hole in the middle of his heart. His PDA closed, the ASD is relatively small, but the VSD is large. We need it to close. If it doesn’t, it’ll start causing major problems, especially in his lungs. If it doesn’t close, he’ll need open heart bypass surgery when he’s bigger and stronger (about 8 pounds).

He’ll have his first eye exam in a couple weeks. The doctor didn’t seem too concerned about his eyes because he was 27 weeks.

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.