Meeting today

Today’s meeting with Sam’s doctor wasn’t that informative. Mostly because we’re still waiting on things….

We did ask about Sam on the ventilator, that isn’t it true the longer he’s on it, the harder it is for him to come off. Yes. But because his abdomen is so swollen, they don’t really want to make any changes.

Today his abdomen is fuller, he’s gained weight again (we don’t want him gaining weight right  now),  most of the distension is his liver. The doctor ordered an ultrasound with doppler to get a better look at his liver, looking for hypertension in the blood vessels. At this point, they don’t want to drain the extra fluid in his belly.

At one point my heart dropped. We asked where we stood with things: are we not doing anything because we want to see what will happen, see if things get better, or are we not doing anything because we CAN’T do anything, there’s nothing that can help him. He said that we definitely aren’t at that point, but if we got there, Sam would have to go another hospital that could operate on his liver, a hospital with a liver transplant program. Heart drop.

Quickly recovered though because we aren’t at that point. So I’m not going to think about it.

The doctor then got a phone call, stepped out, so we continued talking about our overall concerns with the social worker.

The doctor comes back with news….

Sam self-extubated!

I couldn’t help but laugh. That kid! We were talking to the doctor last week about when Sam could get back on CPAP, and he said they weren’t going to rush it with everything else going on. But if by some chance he self-extubated, they’d give him another trial. While the doctor was talking, Sam was watching, paying attention. Of course I know he can’t understand what’s being said, but his eyes were following and focused, his eyebrows raised. We joked then that he was going to do it and to make sure that we weren’t blamed.

Last night he kept pulling on the tube, clearly uncomfortable with it. Today he yanked hard enough on it to dislodge it out. So they put him back on CPAP to see how he’d do. If he goes great, then awesome. If he tires out, he’ll just go back on the vent.

Part of me is so proud of him. Part of me is excited that maybe I can finally hold him soon (oh please Sam, please make it a few days). Part of me is nervous that he’ll get tired, something will happen again.

In other news, Sebastien is now wearing newborn sized clothing. Some of his preemie outfits still feet, but the onesies he’s worn this week have all been NB.

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5 thoughts on “Meeting today

  1. I’m glad to hear Sebastion is pretty much in NB clothes! Sounds like he is growing great!!
    I will pray that Sam doesn’t have to have a liver transfer. I will also pray he doesn’t have to go back on vent so you can finally hold him!

    Did you have to ask for the meetings with the Doctors? It seems like every time I want to know what is going on I have to ask to speak with someone. They don’t automatically update me or have weekly meetings with me and it can be quit frustrating sometimes. Jackson is pretty much just going with the flow, eating and gaining. He may have up 1-3 Brady’s a day I think but never when I am there.
    Addison though… she keeps desatting! Her heartrate and respiration are still good when she does it (HR is mostly in the 160’s even if she desats to 40’s – 60’s.) She is still on canula but they have to increase her oxygen from 21% to 23% sometimes to keep her “happy”. They thought maybe she had sepsis or some infection but all the tests have come back negative so they stopped the antibiotics… Now they just think “she’s tired”. Ok I know preemies get tired but that isn’t a good enough reason for me when she was doing so great.
    sorry didn’t mean to go on and on like that… It’s just that no one around me really seems to understand….

    • Samuel’s original doctor made a point to always come find us when we were visiting (assuming the nurses were instructed to call him). One of the doctors completing her fellowship program also took an interest in Sam and knew when I was usually there and came to see me each day. When Sam’s doctor rotated out and we got a new one, we felt a bit lost because we went almost two weeks without even meeting her! After 3 weeks of daily doctor visits/chats, we were a bit put off. Then Sam got sick so we demanded a meeting to find out what was going on. (this was also after we had an actual sit-down meeting with Sam’s original doctor when he was rotating out; the new doctor was supposed to attend so that we could meet her and find out what she planned to do). We had meeting with the new doctor, the social worker, the primary nurse, and the cardiologist. Since then we’ve had weekly meetings scheduled. Some are really short — things are good right now — some are long and difficult.

      At this point we almost always have lots of questions ready at any given time, so whichever doctor is on that day typically comes to see us. Not always, but usually. We also have no problems asking the nurses to page the doctor and have him/her come see us.

      What we’ve learned is that if you want information, you have to ask for it. So definitely ask for a meeting with the doctor(s) to find out where your babies stand, how they’re progressing, and what they plan to do.

      Be careful saying that Jackson is going with the flow! (we’ve become superstitious in the NICU) I only say that b/c we used to say that about Sebastien as well, that he was on cruise control. He then got sick with an infection. As far as Addison, they do say that babies outgrow the desats. You’ve also probably heard about the 2 steps forward, one step back. It’s so frustrating but true in some ways. Seb only had that once really; for Sam it’s all the time. It’s also hard juggling two babies who are in different places, when one is doing so well, and the other is struggling. The entire NICU experience is isolating; the only people who really understand are other parents who’ve been there, and not just those who spent a couple days in the NICU. I definitely understand you’re frustrations, so feel free to ping me anytime!

  2. Rebecca says:

    I’m praying for your amazing little boys! Sam and Sebastian rock!

    We got so tired of hearing “delicate balance” that we could’ve puked. I can imagine you all are in the same place.

    I’m so happy for all the good milestones you’ve made it to so far. Hugs.

  3. tpowers@bellsouth.net says:

    Eyebrows raised, just like his mother! LOL! I can just see it, lots of love to you all. You are in my prayers and I’m diligently following your blog. Can’t wait to meet these little fellows.

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