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!!!!


3 thoughts on “Here we go again

  1. mary says:

    I’m sorry, hon. This has got to be so hard. I’m keeping Sam constantly in my thoughts.

    About Sebastien’s feedings — jsyk 60 ml is about 2 ounces. I say this because my Medela pump bottles have both measurements on them. Noticed it yesterday. So it sounds like Sebastien is getting about 1.5 ounces every feeding right now.

    Good luck on finding a nanny. Alice is starting daycare on Monday… My MIL is no longer able to help as much as I need with everything that is going on for her obviously. So we found one close by that friends recommended. The ladies in the infant room are pretty awesome.

  2. cheryl says:

    I’ve been reading your blog for a while now from FF, although I’m not sure if I’ve commented or not. So let me start by saying that I am constantly impressed with your resolve and tenacity… it is clear where your little guys get their spunk from. I’m pulling for them, and I’m so thankful you’re willing to share.

    I had a rather bumpy pregnancy, and we recently moved to a new area far from family and friends so when also had to look into hiring some help. I put an ad on CraigsList, but I also used an online site called with an amazing amount of success. You do have to pay a fee to find someone, but I thought it was well worth it given the number and quality of responses we got. You can post an ad with your job description OR you can search through local sitters/nannies and send them messages without posting. I would say half of my respondents had some time of nursing experience, which might be helpful or reassuring for your needs. It might be worth looking into… the fees for Nanny services here were astronomical, so this was definitely a better fit for us, especially since we didn’t know exactly how long we would need help.

    Good luck with everything. I hope Sam gets the break he needs soon.

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