Month: April 2011

Due Date

Today is my due date. Today I should be meeting my babies for the first time; instead, I’ve known them for 13 weeks (funny, I found out we were having twins when I was 13 weeks pregnant; that seems like a lifetime ago now). I wish I was just now meeting them; instead, I’m already learning their personalities, learning their smiles, learning their screams.

They’ve come so far in 13 weeks.

Sebastien was born at 2lb 1oz.

Then he started to fill out.

Today he’s a hefty 6lb 11oz.

Right now we’re waiting on him to be able to take all of his feeds by bottle, the final criteria for him to come home. Most people unfamiliar with the NICU assume babies can come home when they reach a certain size. I too thought that before this experience. Sebastien’s taking almost everything, but he will get tired out and not be able to finish, so the rest goes through his feeding tube. If we were a full-term baby, this wouldn’t even be an issue. If he were home, we could let him sleep until he woke up hungry. The NICU has him on a strict 3 hour schedule. No matter what, every three hours it’s time to wake up and eat.

Samuel was born at an incredibly tiny 12oz. 3/4 of a pound!

Before his birth he wasn’t given much of a chance; at his birth we were told we should say goodbye to him, that he wasn’t responding, that he wouldn’t live, that they couldn’t get his heart to stabilize. We weren’t ready to say bye (they brought him to us all bundled up, we kissed him, talked to him; he moved, he had a heartbeat), he wasn’t ready to leave either. We asked the doctor to try again with him, she did. The little stinker said ‘nope, I’m SCRAPPY, you give me a chance!’ And he took that chance. He’s been with us ever since, fighting all along the way, surpassing all expectations. Don’t get me wrong, he hasn’t had an easy go of it,  he’s had more obstacles than any baby should EVER have to overcome.

He grew.

And grew

And he’s growing still.

Today Samuel’s a solid 3lb 9oz. His growth has been, in short, amazing. He still has some obstacles to overcome before he can come home. He’ll get there; it’ll just take a him a bit longer. Right now he’s doing better than he’s ever done. It’s amazing really, baffling, but the boy has a strong will and he’s going to go far.

Alert

Pics from holding Sam yesterday:

I also have a short video, if I can figure out how to convert it to a WordPress format.

Weekly Meeting

Not much to say actually. Sam is still doing well, back on CPAP. So far his blood numbers are better than they’ve ever been.

His abdominal u/s results were weird. The radiologist wrote in the report that there is “debris with a sludge-like consistency” in his intestines. Our neo wasn’t really sure what that meant. Could be the hematoma breaking down, could be something else. Sam is scheduled for surgery on Tuesday, May 3. It’s easier to cancel surgery than to schedule. He’ll possibly get another upper GI before then and also get another abdominal u/s to check for any changes. Otherwise we’re going in and see if there’s something to fix, to make it easier to get him feeds.

I held him for an hour late this afternoon; he was more alert and awake than I’ve seen him in a long time, so I just talked to him, told him about our family, our dogs, etc. I have a couple of pictures I’ll post later tomorrow. They’re all on my cell phone and I need to get it charged and connected to the computer.

A better day

Wouldn’t you know, our little Sam, got extubated again. Yep, he’s back on the CPAP. They had him on the lowest vent settings possible and he was doing more than ok. What I find interesting about that is this morning, when Scott was visiting, he wasn’t awake or moving, was completely riding the vent, rather than breathing over it. By the time I got there, just a couple hours later, he was back on CPAP. So far his settings have been good (at 21-23% oxygen), though his PEEP is still high at level 8.

His blood numbers are more back to normal; his conjugated bilirubin isn’t though and is now at 24!!! We have to get him feeding.

He had an abdominal ultrasound today to check on the status of his intestines. Is whatever’s there smaller, so maybe a hematoma? Is it the same, maybe the duplication cyst? We haven’t gotten any results yet. Tomorrow is our meeting with his doctor so we’ll know something soon, what plan of action they need to take. I don’t think we’re at a point where we can just sit back and watch/wait. We need to make some concrete plans.

Update on the event

Talked to the doctor on duty today. Sam had a full cardiac arrest last night. They started bagging, still wasn’t coming up. At 3:18AM, full flat line on his heart rate monitor, epi was ordered. Chest compressions began. At 3:20AM he had a heart beat. Because it was low, he was still given the epi. His heart rate has been stable since.

Doctor said that there’s no way to know what, if any, brain damage happened because of cardiac arrest. Some babies have no issues, some do. She said that babies who need suctioning down by the vocal chords, where he needed it, while on CPAP, well, they just take them off CPAP and put them on the vent.

So because my little baby needed fricking mucus sucked out of his throat, his heart stopped beating.

*******

Update, Sunday evening.

Over the weekend, Sam stopped peeing. His docs consulted with several nephrologists and put him on a cocktail of meds. Today he’s peed 2/3 of the weight that he’s gained in the last two days. Seriously —  he’s up 300g from his Friday weight. Today he peed at least 200g.

I just got back from seeing him; he opened his eyes briefly, seemed to acknowledge me (started breathing over the ventilator rather than riding it and letting it do the work). He also started tugging on the tube again — it was going in and out of his mouth. I gently unwound his hand and told the nurse that she might want to tuck him in better. I’d love for him to be off the vent, but we can’t have him self-extubate again, at least not right now.

This week will be interesting; our weekly meeting with his doc is on Tuesday.

Here we go again

Last weekend I argued with one of my favorite nurses for Sam; she wanted for me to get on a holding schedule for him, to just hold him every other day. I told her I couldn’t agree to that because at any point he could go back on the ventilator, that he could get sick again. I wouldn’t want to agree to it, hold him on a Friday, for example, plan to hold again on Sunday, then just have him get sick on Sunday, then who knows when I’d be able to hold him again. She understood and so I’ve been calling every day to see whether or not it’s a good day for holding. I mostly want to do kcare since that has the most proven benefits for babies, but they’ve only allowed it once: first his belly was too big, then his PEEP is too high, the list goes on. So just holding is it. Until now.

Usually during holdings Sam does incredibly well. Every time I had a new nurse pull him out, she was always surprised by how well he did. Thursday though was a different story. The nurse suctioned him before she pulled him out and place him in my arms. Then she went to deal with another family….Sam started to desat. He came back up, but then dropped a bit and just hovered around 85. He couldn’t go any higher — very unusual, and there’s usually a reason for that. I could see major globs of gunk in his mouth. A piece was actually hanging out, so I tugged and well, it was gross. I could then see into the back of his mouth and it was completely covered with thick, thick mucus. The CPAP causes this: so much air is being blown in through his nose, but his mouth remains open because of the replogle and feeding tube….he can’t easily swallow down the secretions so they build up in his mouth. They’ve gotten worse it seems. I was finally able to flag down a nurse since mine was busy and have her suction him while I was holding him. The gunk that came out was incredible. I sort of scolded my nurse when she came over about it, that she needed to please be on top of it. She argued that too much suctioning is counter-productive and can make things worse. Maybe so, but he clearly needed to get that crap removed, so please remove it.

After he settled back down a bit, I had her put him back. I always hate willingly putting Sam back in his isolette, but in this case it was best for him. He just wasn’t having a great day. Hell, I was stressed holding him after all that. Not good for baby or mommy. As soon as he returned to his bed, he crashed. He bradied. Recovered. Bradied. Recovered. Serious brady. Bagging, recovery. Luckily at this time, respiratory therapy just hovered but didn’t have to intervene.

On Friday we were busy all day and weren’t able to get to the hospital till that evening. From our several phone calls we found out he wasn’t having a good day again, repeat episodes and spells. Crap. Doctor was worried he was getting an infection, so he was started on multiple antibiotics again, feeds held again (haven’t even started them actually). We got there early evening, and poor Sam is puffy again from all the fluids. Poor baby. We didn’t stay too long or touch him much because we wanted him to rest.

This morning at 4am the phone range. Saw the number, immediately said Crap before I answered it. I’ve always dreaded the middle of the night calls — so far this was actually our first one. Overnight Sam crashed hard, he’s now on the ventilator (no more holding for us). He had a brady episode so bad that even bagging was not working. They had to do chest compressions. They had to give him another shot of epinephrine to get his heart going again. Turns out he had a plug so deep and thick that he couldn’t breathe. Normal suctioning couldn’t get to it. Luckily he’s been very stable on the ventilator, his gases have been good. I asked the doctor about a pain med; she agreed and said she’d already ordered the fentanyl drip to make him comfortable, make him tolerate the vent better.

The doctor then had to run, literally (she got paged for an emergency delivery), so I couldn’t question her more. Are all these secretions the source of the latest issues? Rather than an infection? We’ll find out more later.

For now, surgery will be even more priority. But if he does have an infection, we have to get him well first. And I’m definitely more on board with the g-tube so that he doesn’t have to have the damned feeding tube down his throat. Lately I’ve just been saying over and over ‘Damnit Sam!’ Someone who heard me might think I’m mad at him, but that’s not the case. I’m mad at the circumstances, the constant crap he’s having to deal with, that he doesn’t deserve, hell, that we don’t deserve.  This poor baby just needs a freaking break. [/rant]

Making some of this more difficult is that Sebastien is getting closer and closer to coming home. He was moved to Room 200 [cue the chorus] yesterday. Room 200 is the step down room, the next step out the door. He’s now allowed to take all his feeds by mouth, but if he doesn’t finish, whatever is left over will be put through his feeding tube. Yesterday morning he took his entire feed by bottle, but then he was so worn out that he didn’t wake up for his next feeding. Since then he’s taken about 30 of his 45mL each time. He still has his desats at times.

It’s hard because I’m so excited he’s close, but then it’s going to get more difficult juggling one baby at home and another incredibly sick baby at the hospital. I’ve got to figure out what we’ll do, especially if Scott and I both need to be at the hospital. The nanny search begins….so if you know of anyone, I’d love recommendations!!!!

Surgery’s getting closer

We had our meeting today with Sam’s doctor. Sam’s still not getting feeds yet since they couldn’t get his feeding tube in where they wanted it. But he hasn’t bled anymore either. The GI docs say that he’s too small to insert a scope down him to see what’s going on; even if he was large enough, they wouldn’t be able to see anything, much less do anything.

The surgeon said that if she opens him up and finds that the issue is just a hematoma, she’ll immediately close him back up, that she can’t touch that. It’s scary though knowing that they have no idea what they’ll find, and they won’t know, until they go on. Reminds me of when I was pregnant and they’d say that about him then, that they didn’t know what type of condition he’d be in at birth.

The doctor wants to get another x-ray in the morning, and based on how it looks, maybe try small feeds again. He’s also ordering another doppler study so that they can determine if he does have a hematoma — they should be able to see something based on blood flow.

If they end up doing the surgery, it’ll likely happen next week. While they’re in there, they’ll also want to go ahead and insert a g-tube. If he does have a duplication cyst, they’ll remove it, he’ll heal, feeds will resume. If it’s a hematoma, we’ll have to wait till it heals on its own. I asked what would happen in the meantime if it takes forever to heal and reduce in size — no good answer to that.

The surgeon says he’s plenty big enough for surgery (even at his tiny 3lb 3oz size). It’s the combination of the high bilirubin levels and the bleeding that’s making us pursue the surgery since he may bleed more. His liver won’t get better without getting him feeding.

I just wish the poor baby could get a break.

Lack of updates

The recent lack of updates has really been because I haven’t known what to say. We’re still in a holding pattern. They couldn’t restart Sam’s feeds today because he started bleeding again last night, but they think it was from irritation from their trying to reinsert his feeding tube. After repeated attempts, they still couldn’t get it transpyloric. The neo doctors are now leaning towards doing surgery. We have our weekly meeting tomorrow; by then they’ll have talked to the surgeons and GI docs and then update us.

Sebastien’s been getting better with the bottle feeds. Last night Scott fed him and they both did great.