Decision number 1 has been made.....now what did I do with that magic wand?
After a lot (a LOT) of discussion and research, Jay and I have made our first decision about Ruthie's surgery (more on that in a minute). We've sought out medical journals, other preemie parents' opinion and experiences, and professional opinions from people we trust. I talked to one of Ruthie's NICU primaries tonight and she validated our current plan. I'm awaiting calls from her first resident dr (that we've remained friends with) and our favorite neo - I'm very interested to hear what he has to say. Aside from being a neonatologist, he is also an ordained minister and a wonderful Christian man. We grew to love him in the NICU - he is honest, sometimes brutally so, but always respectful and caring, and we value his opinion probably more than anyone else's.
While we are still researching and praying about where to go after Ruthie's surgery, we have a peace about our first decision. We will be getting the g-tube for Ruthie, but we will NOT allow the Nissen fundoplication procedure. There are too many risks, potentially immediately and in the future, and we want it to be a last-ditch effort if nothing else works. Right now there are a lot of other avenues to explore. And as a fellow micro-mom pointed out, a g-tube surgery really isn't a big deal - it's easily reversible (just pop it out and let it close up) and we can explore other options while she's being g-tube fed. The Nissen, on the other hand, is irreversible. Permanent. Forever. While it would be great to have her reflux "fixed," it is not worth it to us to have her be miserable, either short-term or longer. She will eventually grow out of the reflux, and we HAVE already noticed a difference in it with the addition of the Prevacid. She still throws up and retches and gags several times a day, but we're learning this is just going to be Ruthie.
The g-tube will allow us the freedom to feed her as we are now, without dealing with tape and steri-strips constantly being yanked off coming off and the meltdown from the Drama Queen at having her head held stationary while one of us tries to retape it without moving the tube. (SOOOO easier said than done.) I absolutely hate having to check the tube placement, primarily because I hate the idea of putting needless air into her stomach. I know it's not much, but heck, I'm giving her meds 3x/day, 6 bolus feedings, and 1 continuous feed - that's a grand total of 30mls of air being pushed into her little tummy every single day and I don't like that. The g-tube will be easier to take care of (in the long run) and then we start focusing on fixing the motility issue, which we both believe will, in turn, help with the reflux.
We were noticing tonight, as we gave her her bath, how distended her little belly looks, and how tight it felt. It had been three hours since her last feed and it should not have looked that way. There is no way this child digests her food normally. I plan on calling the surgeon first thing Monday morning to ask if he's willing to do the surgery minus the Nissen. If he isn't, I'll go to the next dr in that office. If none of the three of them are willing, we'll find another pediatric surgeon, in Columbia, if need be. I don't think he'll have too big of a problem with it, as it IS our choice - I think he wanted to do it due to her severe reflux. We'll see.
Then I plan on calling the pediatrician and the GI to get their thoughts on starting Miralax after the surgery. While Ruthie is not and has never had issues with constipation, another micro-mom told me that Miralax made a big difference in her son's slow motility issues. Worth a shot. I'd rather try something like that over a prescription. The GI had mentioned giving her Reglan, but I am very anti-Reglan b/c of the severe neurological side effects it can cause. Not to mention it has lactose. We'll cross that bridge when we get to it. Right now, first step is seeing whether or not the surgeon will do the surgery w/o the Nissen.
We really covet your prayers right now. This is going to be a busy week with a lot of difficult decisions to make. To say I'm feeling overwhelmed is an understatement. Lately I just feel like I'm on autopilot.....do this at 6am, do that at 7:15, now it's time to feed, gotta clean the bathrooms now.....I'm just struggling to stay sane.
Pray that we all stay well - times like these it's so easy to get sick due to stress and being overtired.
Sometimes autopilot is all you can do... make it through the next minute, hour, day. You will get through it! I am praying!
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