Tuesday, June 24, 2008


I started the day with a migraine and from there, it mostly got worse.

I suppose that's not entirely true. Really most of the day went well, but when it went to hell, it went to hell.

After running some errands (car in the shop- thank God it's under warranty) in the morning, I got to the hospital a little after 1:00. Robbie was doing pretty well. He was bundled up and peaceful. His oxygen was in the 40s which was higher than it's been, but not unexpectedly.

After he woke up, we kangarooed for a few hours. It was a little frustrating because the CPAP mask just wouldn't cooperate well. They were constantly fussing with it to get it to blow right. When it's working the way it should, there is a bottle of saline that bubbles. He kept "losing his bubbles."

As I said, I had a migraine and really just wasn't very comfortable. My plan was to hold Robbie a while and then go home early and lay down. Which is what I was trying to do around 5:00.

They moved him to a new bed. His now has a regular isolette instead of the super premium one he needed when he was even tinier. This one is still covered and heated, but it's less fancy and not humidified. Honestly, I don't really like the thing, but they say it's normal for him to move up. I don't think he "graduated" so much as they needed his old bed. I guess the NICU is at full capacity again- 80 babies.

Anyway, as they put him back to bed, I went to pump. I came back with the intention of telling him goodnight and going home. But as I came back in, he was a little fussy. So I sat with him a few minutes trying to calm him. He started to have a couple of decels (where his heart slows down- not enough to make the machine alarm, but enough so I noticed. His heart rate is usually in the 160's and it would slow to 110ish) so I called his nurse over.

Fortunately the nurse who was on during this time is really, really good. I REALLY REALLY like her. She didn't blow me off. She came to watch and he did it again. So she monitor watched with him for a while. Next thing you know he had a brady. That's in and of itself isn't that terrible- it's expected. But he wouldn't rouse. His oxygen saturation dropped into the 30's. She had to bag him. He finally started breathing on his own again.

She called another nurse over to stand with him while she went to get the nurse practitioner. She was afraid he was wearing out.

The 3 minutes she was gone, he had to be roused again. It happened easier, but it was happening. She came back and said that they said they'd watch him closely tonight but he might have to be reintubated by morning.

A few minutes later, he did it again. And then again. She called for someone to watch him again and went to get the NP. This time more insistantly. She came back and they were going to reintubate him.

I was torn between relief and disappointment. On the one hand, I had hoped he didn't need the vent anymore. On the other hand, he very obviously did and watching him bottom out is pure terror.

Fortunately, the intubation went incredibly smoothly. I was standing 10 feet away and I didn't even see it happen. His numbers went up immediately.

They came to talk to me and explained that after wearing out like that, it was likely he'd need more oxygen than normal tonight but that they'd wean him down by morning. Even in the time we were talking, though, his needs were coming down. Honestly, I was calm.

But then they put his CO2 monitor on him. As it read, it his 90. I flipped out. That's WAYYYYYYYY too high. X-ray came to take his chest film to make sure the tube was in the right place.

The c02 monitor results came in only a minute or two before the film. The NP turned his breathing rate up and we all stared at the CO2 monitor. It started to fall a little. WHen they saw his chest Xray, they came in and ratcheted up his airway pressure a while. His lungs were almost white. Damn near collapsed. They needed to inflate them.

They decided to give him 30 minutes for his CO2 to even out and if not, more tests. Fortunately it fell fairly quickly into the 60s- which is what we needed to see.

But his heart rate was high. I mentioned it and they checked. He was very agitated. If I'd hold my hands on him, I could calm him into the 180s, but that's still fairly high for him.

He finally fell asleep and I prepared to leave again. Not relaxed, but at least feeling that he was stable. I went to pump again. When I came back, they'd moved him to a new spot in the NICU, and did his cares, repositioning him. He was agitated again.

His heart rate was up around 200 again. I tried to calm him. This time, it didn't work. I called his nurse over. She dismissed me saying that he was agitated, had a long day etc etc. I scowled, but went back to trying to calm him. A couple of minutes later, his vent alarmed. They asked if he was breathing fast. Yes.

The vent needed to be recalibrated.. finally he calmed down a bit. But still, he heart rate was around 190. Better than 200, but still high. I fumed because I had been dismissed when I was clearly right.

Then he got really, really agitated again. Just screaming. You can't hear him, of course, but you can see him. He was inconsolable. None of my tricks were working. I didn't even want to talk to his nurse again, afraid she'd ignore me AGAIN.

Finally I asked one of the other nurses to call for the NP again. The one assigned to us was at a delivery, but one of covering NPs came. She listened to what I said and acknowledged that I was there a lot and knew my kid. She'd get his file and see what we could figure out.

So we went through it together. She agreed that his normal heart rate is usually lower. It had crept up towards 200 again and was normally in the 160s. His usual remarks were that he was calm or resting or awake and alert, but the last few hours, he'd been noted as agitated. Hmm. I guess I'm NOT nuts.

Finally she decided that it was possible he was in pain. They had restarted the fortifiers in his milk yesterday, though very slowly, but you never know. he'd been reintubated, of course. We didn't know. She called the doctor on call. They agreed to try to give him some fentanyl.

About 10 minutes after they gave that to him, his heart rate slowed ino the 180s and stayed there. He stopped screaming. He was still fussy and wouldn't settle down, but he was markedly improved.

His nurse suddenly was paying a LOT of attention to us. She repositioned him a bit and then sat and watched. I suggested wrapping him and his snuggli in a warm blanket (we couldn't do it earlier because he'd gotten fairly warm) and she brought me one. I tucked him in and he FINALLY went to sleep.

My NP had returned from the delivery. She came to talk as well. And the covering NP was in as well. The two of them, his nurse and I sat and watched him a while. His heart rate was still around 180 which is high for sleeping, but I hoped that once he got some rest, that would return to normal.

I finally felt like I could go home. It was nearly midnight.

The covering NP was concerned about me driving home so late and so tired. She asked me to call when I got home and I agreed.

When I got home- around 12:45 am- I called and asked how he was doing. Still sleeping. I was home safe.

I collapsed. I had intended to tell David good night and then get up to pump again. I woke up 6 hours later. The first thing I did was call to check on Robbie. Heart rate is in the 160s and and he's been mostly sleeping all night. He's on room air. (21%) Relief.

The 2nd thing I did was pump. Somewhere close to 5 oz out of each breast. Considering I normally pump closer to 2, you can imagine MORE RELIEF.

It was a long day. But it's over. Here's hoping today is a better one.


P.S. I went to add that while I do not like the nurse he had last night, everyone else all day was wonderful. After he was reintubated, the NP who was on then came to talk to me several times even hugging me before she left. The nurse who caught him giving him stayed an hour past the end of her shift to get him taken care of. The two NPs who sat and watched him with us gave me quite a pep talk about being a good mom and doing really well with him. I love most of the people in the NICU. And I think I made my point quite clearly to his nurse last night. Since I called for the NP, she's been VERY. VERY. attentive. And almost pleasant. If I ever feel like I've been dismissed again, though, I will be making a formal complaint.

I don't have a reputation as a bitch for nothing.


Anonymous said...

Sounds like you had quite a day, but I'm so glad that you spoke up and even went above your nurses head - mommies know best!

Great big bear hugs!!!


Jess said...

I can't imagine the stress level you were at yesterday while dealing with a migraine. I'm so sorry hon. I wish I could magically make him big so you could take him home and he'll be safe and sound in your arms.


Lots of prayers for you and Robbie.

Two Hands said...

I'm just glad that Robbie is doing okay again. What a scare that must have been! He will come off the vent again, when he is ready. You are doing a tremendous job and I'm so happy that you are sticking to your guns and following through on things that concern you. So many people have blind faith in health care professionals and take them at their word, forgetting that they are people too.
Thinking of you both often.

Anonymous said...

I'm so glad they got him back to normal and more comfortable. That sounds so scary, Trish. Ditto Two Hands...he will come off the vent again when he is ready.

I hope today is a much better day for everyone. ((hugs))


Heather said...

I'm so sorry you had a rough day yesterday. I hope today is much better.

And you did the right thing about the nurse. You are the best advocate for your baby.

LJ said...

I've been a crap-assed commenter and blogger lately, but wanted to just say hello.

I am so sorry you have to go through this with Robbie - but you are doing amazing!

Best wishes,

Ariella said...

You are a great nicu mom, Robbie is one lucky little baby!

Stacie said...

You do know your baby and good for you for going over the crappy nurse's head and getting the NP. I am glad that the NP listened to you and got RObbie the help he needed!

You can request to not have the nurse you had last night again. Considering what happened, I doubt that anyone would bat an eye. With a full NICU, there are plenty of other babies for her to work with.

And as for being a bitch, I am right there with you. At one hospital (the boys were in two different ones), it was even notated in their charts that I was "overly involved" with their care. As if you can be overly involved with a preemie.

Hoping for a better day for Robbie today.

AngelsAmid said...

You do know your baby :) you're a great Mom. I'm glad you got that NP.

*big hugs*

Amy said...

Oh man. I am so sorry!! Glad he's doing better now. I am sorry about the one mean dismissive nurse but glad everyone else was wonderful. You really are Supermom. (No surprise there!)

Mathews said...

Sorry you and Robbie had a rough day!

What's Robbie's weight up to?