Tough Decisions

Tonight, I feel in need of (and on the verge of ) a very good cry. I'm feeling incredibly overwhelmed...we're facing a huge decision with Ruthie and I'm so scared we'll make the wrong choice. Not to mention there are about 20 different possibilities we could choose and I have no idea which way to go. I've been researching for the last four hours and everywhere I turn, there are pros and cons to all of them. The pros are so-so but the cons scare the crap out of me.

Today's pre-op with the surgeon went crappy okay. I didn't care for him too much but I wasn't there to make a new friend anyway. I understood him to say he wouldn't do a g-tube surgery for Ruthie without a Nissen fundoplication, and I absolutely would never do am STRONGLY opposed to a Nissen. Ruthie was scheduled to have a nuclear scan for gastroparesis (delayed gastric emptying) next Friday, but we have to make a decision about surgery by Wednesday, as she is on the docket for a 9am surgery. Of course, we have the option of waiting longer, but the surgeon is backed up for weeks, if not months. We were only able to get in this quickly b/c Dr. Siddens (Ruthie's tear-duct dr) made a phone call to get her in sooner so he could get her tear duct surgery done at the same time.

Anyway, we're all in agreeance that Ruthie definitely has slow motility - whether or not it's gastroparesis is really beside the point right now. Doing a Nissen on a baby with slow motility basically turns the stomach into a pressure cooker. She wouldn't be able to throw up if she had to, which would be ideal for her reflux issues, but horrible for her motility issues. If we're filling up her belly with milk she can't digest for hours, she has nowhere to put it. It can't go up and it will take hours to go down - resulting in a miserable, uncomfortable baby. I'm not willing to do that.

In talking about it this afternoon, we're still not completely sure her only problem is an oral aversion, nor are we sure just how "aversive" she is.....sometimes she'll take an ounce or half an ounce of her bottle, then get disinterested...she rarely gags on a bottle anymore and she doesn't panic over having it in her mouth like she did a few weeks ago. However, she gagged at the mere sight of applesauce on a spoon yesterday. She's not averse to a pacifier or toys or fingers in her mouth - she's just not interested in drinking a bottle. We both feel that we've been screaming through the rooftops saying for MONTHS that she doesn't eat b/c she's simply not hungry! She used to take 2-3oz every 3 hrs, but she has rarely been interested in eating. There have been times when we've been late on a feed and she's been more "into it" - maybe she wasn't feeling so packed at the time like she usually does. All of that points to slow motility - she doesn't digest as quickly as she should, therefore, she's not hungry at feeding time. The downside to that, however, is that we cannot stretch out her feeding times. She HAS to get in a certain amount per day just to sustain herself, much less gain, and in the times we've tried to stretch it out, she won't necessarily take in more, she just seems more interested than her usual, "Oh, you want me to drink this? Well, I don't really want it, but okay."

So here are the options we are looking at.....

1) G tube w/o a Nissen - this would allow us to basically continue doing what we're doing right now, only through her stomach and not through her nose. This is used for long-term feeding issues, which is probably what we're looking at.

2) G/J tube - this would let us feed her straight into her intestines, bypassing the stomach and therefore not having to deal with slow motility. The g-tube would allow us to "vent" her to get out excess air/gas/stomach acids that may bother her. Downside - the "J" part of the tube can get pushed back into the stomach, causing pain and requiring "re-threading" back into the intestines

3) J tube - I don't know if these are done w/o the g-tube extension, but there are cons to this in that her bowels/intestines can get twisted over time and possibly become necrotic and require removal of dead bowel. 

4) G-tube w/ Nissen - there are far too many complications and risks to this procedure, and if this surgeon isn't willing to do a g-tube surgery w/o it, we'll be looking for another.

So many things to think about. I'm already super overwhelmed. I don't know what to do. We're waiting on a call (hopefully) from our favored NICU neonatologist. When Ruthie was in the hospital, I personally asked to speak with him and the nurse promised to call me either way (if she was able to get a hold of him) - I never heard back from her. I called the NICU tonight and asked again and was told my number would be passed on to him first thing in the morning. We would like to ask his opinion on these things and what he would do - we really value his judgement from a Christian perspective. So until then...