We hate PICCs and ostomies

The first few days after our last post went pretty well for Eliza. She started to get overheated in her isolette, so after some discussion, on the 10th, she was moved out of her isolette and into a big girl crib! She didn't like this very much at first (it's a lot noisier out in the open, especially in the TCN) but she soon adapted. It's really something seeing her out in the open now.

We have continued to work with Occupational Therapy and Speech Therapy on feeding Eliza from the bottle and the breast, and she's been a quick learner. She got her first "latch" on the 14th, and on almost every try with the bottle she's taken as much of it as they'll let her drink.

The two-week followup for Eliza's ROP showed that the laser procedure hadn't cleared everything up as well as they'd hoped, so she had to go through a second round of lasering on the 16th. She did pretty decently through the procedure and afterward, but we're definitely hoping that's the end of that.

While everything else was happening, Eliza started dumping (having high amounts of output from her ostomy) again, which is a problem since it means her food was passing through her system undigested. So they went down on her milk volume and increased her TPN (intravenous) input to compensate for it. This seemed to work for a while and she was continuing to grow reasonably well. But on the 15th, her PICC line got clotted and they weren't able to flush it clean, so out it came, and there she was - back on nothing but milk (plus the usual assortment of additives and supplements, of course).

Since we'd previously seen that milk alone just wasn't enough for her to grow, priority one was to try and get a new line put in, but unfortunately her veins are already in pretty rough shape from the amount of poking and prodding she's already been through in her short life so far. One of her nurses tried on day shift, but didn't have any luck. On night shift, another expert nurse was going to try for the PICC, but things hit an unexpected snag. She's one of the nurses that we had during Charlotte's stressful last nights, and we'd asked not to be assigned her as a caregiver again - but not because of any concerns about her technical skills, only her people skills. So we had no objections to her handling Eliza's PICC placement, especially after multiple people told us that she was absolutely the best person for the job.

Unfortunately, that apparently didn't get communicated to her, or something, as we found out when we called later in the shift to check in that she had bowed out of doing it and asked another nurse to do it instead. Supposedly this other nurse was just as experienced, but she had no luck either, and the next day, when we were checking on Eliza, we saw that she had at least a half dozen separate puncture marks, each of which was associated with a pretty bad bruise or vein blowout. We're still trying to chase down exactly what happened overnight, since we would have been fine with the original nurse trying, and each nurse is only supposed to try at most three times before giving up, and we have to wonder why Eliza had so many blowouts if the backup nurse truly was "just as good". We don't have the answers yet, though. We're starting to feel like "problem parents", but we won't let that stop us - Eliza's care comes first!

Since the PICC wasn't working out, it was decided to give her a few days with just the milk feeds to see how she could do. Eliza started to show signs of dumping again, so she got switched to continuous feeding (previously she'd been on on-2-hours/off-2-hours or on-3/off-1) to give her the food more slowly and hopefully digest better. She still kept dumping, so they replaced her "MCT oil" supplement with "microlipids", which are supposed to slow the passage of food through her digestive tract and give it more time to be absorbed.

Unfortunately, the microlipids are very slippery, and ever since that change was made, her ostomy bag simply would not stay attached to her skin for any length of time, and became very prone to leaking. When the bag leaks, it needs to be taken off and completely replaced at the next available opportunity, since semi-digested food on the skin is acidic and irritating. At its worst, she had to have her bag changed 4 times in one shift (it's normally only changed every 24-48 hours). So even though it was working to make her digest more thoroughly (and she did manage to gain a little weight last night after losing the previous two nights), we worry that the amount of stress she goes through with so many bag changes (it can be a lengthy process, and having stuff peeled off and then new stuff maneuvered into place and then glued to her skin really makes her mad) ends up sabotaging any gains she's making. Plus she's starting to have some skin irritation from all the bag attaching and detaching she's been through.

In short, she's back between a rock and a hard place again. Microlipids make her bag fall off, damage her skin, and stress her. TPN requires PICC access, which is proving very difficult to obtain and retain. If she gets neither microlipids nor TPN, then she can't get enough calories to grow with her digestive system the way it is. And until she grows a bunch more, they won't be willing to do the surgery to reconnect her bowels. So frustrating.

Tonight one of the nurse practitioners is going to try to put in a different type of PICC line (an axillary PICC, which goes in through the armpit instead of an arm or leg), which only NPs are permitted to try and insert. If that doesn't work, our next fallback option is surgery to put in a Broviac catheter. Surgery is obviously the less desirable option, so here's hoping the latest PICC attempt works.