The state of things

a list of things, in no particular order, a bit of a ramble of what’s on my mind.

1. I’m sad, that’s obvious.
2. When I first started this blog, I promised to keep it up, no matter the outcome. That’s not going to change now. We may have lost Samuel, but we still have Sebastien, a thriving, healthy preemie who’s now a solid 11.5 pounds. I’ll be posting about his adventures, but also still my dealing and recovering from the loss of my son. After all, right now they go hand in hand.
3. We’re going to take some time off, travel a bit, take time to recovery, heal, move on. The next few weeks may have sporadic updates. This has been a long journey, a painful one, we need time away.
4. We’re not immediately holding a funeral for Sam. Instead, we’re waiting until we’re ready, and we’re going to have a dedication service/memorial at our house in the mountains. Our plan is to plant a tree in his honor, a large evergreen that will continue living and growing. We’ll also have a nice granite plaque created and placed at the foot of the tree. Sam may not physically be here anymore, but his spirit will always live on. We want to celebrate his life, however short it may have been, celebrate the joy, the hope he brought so many people. Though he wasn’t here long, his impact on us and other people has been profound.  I’ll post information about the service later.
5. We’ve gotten requests for information about flowers, what people can send us. Right now, nothing. Flowers will be better served for his dedication. We’re also contemplating creating a fund for people to donate for the tree, the plaque in his honor. We’ll figure this out as well.
6. What keeps me going right now? Sebastien. He needs us to be strong, to be the best parents possible for him. I look at him lying right next to me, and I can’t help but smile. Every once in a while though I see a flash of Sam. They have the same mannerisms, the same expressions. But Sebastien will keep me going. I wish I knew if he remembers his brother, if he already feels the loss. The night Sam passed, a few hours before we were called to the hospital, Sebastien was sleeping and he awoke abruptly with a cry that wasn’t normal, one we’ve never heard before. He looked scared, I couldn’t calm him. Did he know? We’ll never know of course, but I’d like to think that he knew something was wrong, that Sam was reaching out to him.
7. I’m grateful for the nurses and doctors at the hospital. I hope to remain in contact with several — they’ve meant so much to me. I’m grateful for the doctor on duty that evening. He’ll always have a special place in my heart: he was the first one to give Sam a chance on CPAP, to allow Sam the opportunity to show us what he could do. I have certain, special memories of all the doctors, of all the nurses. I thank you all for taking such wonderful care of my son.
8. I’m trying to remember all the positive, the good things, the good experiences with Sam. We had a lot. Yes we had some bad times, but we also had a lot of good visits, laughs. Times I floated out of the NICU on such a high. The little boy had so much personality. That’s what I’m holding onto.
9. Samuel may not have survived this, but he will have left a lasting impact. Hopefully, especially, the medical community, both for prenatal care and postnatal, as well. He was never supposed to make it to birth. Once he did, he was never supposed to live for long. He did both. He had five months, five months longer than anyone ever thought possible. I hope the doctors learn something from him, further their skills even more, and are better able to help babies like him in the future.
10. So what happened? The abdominal surgery was a success, but his recovery was rough. Sam’s cardiopulmonary function worsened. His heart was working like crazy trying to pump enough oxygen to his lungs and organs. And it just couldn’t do it anymore; his heart gave out. He was also in so much pain, I’m sure that didn’t help matters, didn’t help his will to live. It’s hard to think of him giving up after having some so far, but it’s not his fault, he did everything he could and more.
11. Sam, my little Scrappy, my Sam Sam fighting man, Sam Superman, I love you forever.

Goodbye

Our son, Samuel Bradford, lost his fight this morning. He gave everything he had and more. We love you so much our sweet baby boy.

Samuel Bradford Stambaugh
1/27/11-6/28/11

Bad To Worse

The hospital called at 11 PM. They said Samuel is not doing well and we should come to hospital right away. It is now 1:30 AM, still here and situation hasn’t improved. Hoping for something…anything to help him recover.

More mysteries

The EEG is done. Results: inconclusive. They didn’t see any real signs of seizure activity, but the neurologist had a hard time reading the report. Evidently Sam’s cardiac electricity is so strong it was overwriting his brain’s electric waves. I don’t understand that really, but from what I understand, the EEG picked up both waves and the cardiac ones were on top of the brains, making it difficult to read. Sam’s doctor said this is rare but does happen. At least he’s not having seizures.

Sam’s doctor also said that his pulmonary hypertension is sort of a misnomer, that he doesn’t have the classic case. Mostly what we’re dealing with is the stenosis of his veins. Having his oxygen so high makes things worse. But for a while it had to be that high else his blood oxygenation would drop into the teens-twenties. What they’ve done now is start a drip of versed to keep him calm. Because as long as he stays calm, his saturations are fine.

He spent almost a solid day at 100% oxygen. When I visited he was wide awake, more alert than I’ve seen him recently. He looked like my Sam. What I could see in his eyes, my Sam was there, he seemed to tell me he’ll be fine. I gave him another massage and just spent time holding his hands. Before I left they were able to wean the oxygen down to 75. On our recent phone call to check in, he was down to 40. The pressure is still even higher than its ever been at 25.

Has all this been just a blip on the radar? Is something more serious happening? What concerns me is how difficult it’s proving to be to get him off the vent. They warned us, but I didn’t believe it. In addition to vent weaning, we’ll eventually have to wean him off all these pain medications. Will his body remember the morphine if at one point in his adult life he decides to experiment? Will he be at greater risk of becoming an addict because his body will remember?

We were just starting to make preemie steps….feeds resuming, vent weaning. Two steps forward, oh, 10 steps back.

Mystery update

Echo shows pulmonary hypertension is worse. Can’t treat it because of the PVS. The EEG probes have been attached to his head for monitoring over the next 24 hours minimum.

Still not sure what’s going on. Doctor thinks we might have to take action soon, possibly contacting Boston again, maybe having them take over? He’s stable enough right now that they’ll be working hard on him this weekend.

A Mystery

We don’t know what’s going on with Sam. Here’s what we do know:

• His temperature is shifting all over the place: hot, cold, warm
• He’s having “spells” — they think he might be having seizures
• His blood gases have gotten bad and his vent settings are way up
• He’s not easily calmed down and settled

He’s getting another echocardiogram to see if it’s his  heart. A 24-hour EEG has been ordered to monitor his brain activity so they can better determine if these spells are indeed seizures.

The only positive news we have right now is that they’re started feeds again: 0.5mL/hour. Because of everything else going on, they most likely will not increase them much right now.

The other thing is that Sam does love getting his body massages that I’ve been giving him. He visibly relaxes and lets me massage his arms, legs, head, bit of his chest. Even the nurse commented on how much he responds to me. At least I can give him some pleasure.

In other news, Sebastien, in the last two nights, slept for 6.5 hours and 5 hours.

 

Update on the boys

Samuel:

Sam’s morphine is down to 4. Yay, progress! The CPAP trial didn’t work so well. He last less than an hour on it today. But he’s had a few bad gases recently (not sure why); the doctor still wanted to give him a chance. He’s back on the vent with a larger tube–so we’ll try again later. The doctor is hoping to restart feeds tomorrow, or Friday at the latest. Whoo hoo! Doc is more worried about his liver than his lungs, which he thinks are fine.

Sebastien:

Sebastien had his assessment this morning from the Early Intervention program. He’s measuring right on track for an 8-week old baby, his adjusted age. So far there aren’t any signs of delays, but we’ll be keeping an eye on things. Our homework is to keep working on tummy time, try to get him tracking with his eyes more, grasping and holding objects. The stronger his neck gets, the more his head should round out and get rid of his torticollis and flat head.

On to pictures of Sebastien: walking with the dogs, crying in front of the grill (who is this kid?!) and sleeping so fricking cutely.

From Jun 22, 2011

Sam Superman

Thanks to the ladies at The Preemie Palace for Sam’s AWESOME onesie! For now it’s in is isolette, waiting for the day that all his central lines have been removed and he can wear clothes.

What’s smaller than a baby step?

That’s what we’re making right now.

Sam’s morphine has been weaned from 6 to 5. The vent is now back on auto mode, which means he’s doing all the work. It also gives him a backup though and will kick in if he doesn’t breathe.

He’s still adjusting to the decreased pain meds…he needed an extra dose of Ativan last night to help calm him down. And this morning for his eye exam (to check on the progress of his laser surgery), he had a pretty nasty desat.

There’s also debate today about the vent. His current breathing tube is slighty too small, causing him to breathe around it. (it does sound really cute b/c there’s a slight quacking sound, and I pretend it’s him cooing at me or snoring when he’s sleeping). The thought is that since there’s such a gap, the tube/vent is sort of acting like CPAP, so they might try him out again on it tomorrow. The nurse today though doesn’t want him to get switched — she thinks Sam needs a bit more time to rest and recover. The doctor who will make that decision is the first doctor Sam had, the one who got him through his first 3 weeks of life. We trust him, and I’m curious what he’s going to do the next several weeks on his rotation. Will he be able to get him just as healthy and stable as he did those first three weeks. After all, we attribute one of the facts that Sam is here because he made it through those crucial first weeks before getting sick.

Happy Father’s Day

Happy Father’s Day to all the daddies out there!

Today Sam’s had a good day. Some days he has bad days, some are good. Yesterday was a bad day; he was probably the touchiest I’ve ever seen him. I would simply place a finger on his arm and his entire body would tense up. The stress was visible. Everywhere I tried to touch him — the same reaction. Visits like that kill me because as his mom all I want to do is cradle him, yet physically touching him is so obviously distressing.

He settled down later. They even tried weaning his vent settings, decreasing the pressure. That didn’t go so well and only lasted about an hour.

Today was a better day. We just need to keep having better days, get him off the vent again. I know he can do it, he’s done it before. I wasn’t expecting it to take quite this long this go round.

Now on to pictures…..

Sebastien saying ‘Hi.’

Sam saying ‘Hi.’

The nurses made little signs for all the daddies.

A few hours later I realized…I want to see just how much bigger Sam’s footprints are. I pulled out his original ones, and, well, wow. I place a lighter next to them for scale.

We’ve come a long way.