The boys had a busy day today.
Sebastien had his hearing test (fine), his eyes checked again (still Stage 1).
Samuel had his eyes checked (still Stage 0) and an ultrasound with doppler on his liver/upper GI. We’ll know the results later.
We had our weekly meeting with Sam’s doctor as well this morning. As has been usual recently, things are both good and worrisome.
Good:
Sam’s still on CPAP. So obviously his lungs are fine, he’s holding his own (even if the PEEP is at its highest setting).
OK:
The latest blood numbers show that his CBC is normal, that his CRP is stable (currently at 2.5) — this is still elevated and typically a sign of infection, but considering it’s been as high as 20, this is good news, it’s also not going up anymore.
Bad:
We HAVE to get Sam feeding. The surgeons and GI docs have all been conferring about what to do; they’re arguing over what’s better to do first, an enema where they insert a dye and see his intestines from the bottom up, or go in through the top and see top down. The least invasive procedure will be bottom up — no tube or insertion down his throat. They want to do this to get a clear picture of his intestines, look for a blockage, look for strictures.
If there’s a blockage or a major stricture, he’ll need surgery: remove the blockage, remove the part of his intestines, insert a g-tube? There are lots of possibilities of things that could happen. We can’t know more right now because we don’t know what’s actually happening. The doc did start talking about a possible g-tube as a long term solution….it would be a way of feeding him without having to use a feeding tube and having something down his throat — it would also make it more comfortable for him while he’s on CPAP. A lot of babies also go home with g-tubes and have them for years. Does anyone reading this have a baby who has a g-tube, or as had one that is now removed?
As far as the GI study, which will happen within the next day or so, if he has a total blockage, he’ll need surgery for sure. If it’s a partial blockage, they might try feedings again and try to determine if it’s a minimal blockage or more severe.
Sam’s liver numbers are still mixed. His conjugated bili levels are still concerning. Again, we need to get him feeding as that’s really the only way to get those numbers in the normal range. He also agreed that if Sam had a congenital liver defect that we would have already seen issues and that all of his numbers would be bad, and that’s simply not the case right now. We asked about the Omegaven and how it’s working, but it’s hard to know right now because of all the infections he’s battled and the lack of feeds. He did think it would be very surprising and unexpected for the bili levels to not decrease once we get Sam feeding. (in the meantime Sam’s just rocking the oompa loompa look).
We also asked why his platelets continue to stay low and constantly drop. Doc thinks they’re going to his liver. They could also be accumulating around his PICC line (the u/s this morning was also to look for this).
The final thing we discussed was holding Sam. I want to hold him! No one has let me hold him again since last Thursday. At first I was ok with it because he did get a bit sick, but he’s been more stable for days now, not great, but stable. If any baby in that NICU needs holding and cradling, it’s him. The nurse last night recommended I get the doctor to write orders for it, that it’s ok for me to hold him — as long as he’s stable and the nurse feels comfortable. I hate that it’s still up to the nurses’ discretion, but it’s progress. I wouldn’t feel comfortable asking anyway if it was a nurse who’s never had him before; after all, he does have a lot of issues and has the potential to drop rapidly.
Hopefully tomorrow I can hold him again (since he had such a busy day already, I don’t want to add to the stress).
From a Speck... 
Hugs! My daughter has a gtube (for diff reasons) but i do know quite a lot about them, and also know someone whose daughter has one (26 weeker twin) and it was temporary. Ours is likely permanent, but contact me anytime, i love our gtube – its a lifesaver when sick or havig other issues too. Especially later on. But i know its a tough thing. Hugs!
Thanks Jenny! I’m sure I’ll have Qs, so you’ll be one I’ll ask.
I am from the preemie board, my name is Amy. My daughter Ailyn has a feeding tube. When she got it back in Jan. I asked the board and they gave me great advice! I’m here if you have questions about it.
Thanks! I’m sure I’ll have questions soon, especially if we get one. I’ll also post soon in the preemie boards.
One of my twins has a g-tube – she`s now 4.5 years. Hers is for different reasons, I’m sure (severe reflux, swallowing issues (now resolved), feeding aversion, failure to thrive). She was my teeny-tiny twin, too (1lb 4oz @ 28w3d) and spent a loooong time in the NICU. I was terrified of it at first, but now it’s a snap. Takes some getting used to, but it’s so much nicer than an NG tube! We hope she won’t need it forever – she *can* eat, she just *won’t* eat. We’re hoping when she’s older and can be reasoned with, along with lots of OT, we can get her off it. However, one day at a time….which is also th emotto of the NICU, as you well know.
Hey, it’s Trish from TPP. Robbie has a G-tube. He left the NICU with it, then had it pulled 6w later because he was eating great. Then a few months later, he stopped and we had to put it back in. He was 10 months old then, and has had it ever since. He’ll be 3 next month and I’m hoping to get it out maybe before his birthday.
This is SpeasHill from TPP. Becca has a g-tube. We got it last summer right after she turned 2. It’s made a huge difference for us. We ALMOST got one in the NICU (due to reflux and aspirating), and I really, really, really wish we had then. It would have saved us so much trouble – not just in the convenience sense, but I’m pretty sure that she’d be eating much more by mouth now (at almost 3) if she had been spared the pressure before. My best guess is that we’ll use it for a few more years and maybe have it pulled around kindergarten. One of the best things about it is that it gives you a way to give nutrition when there are other problems going on – maybe of which can’t be resolved without good nutrition – even basic kid issues like a cold that become major issues for preemies. Let me know if you want to talk more about it!