Monday, July 19, 2010


So Thursday night Maggie pulled her tube out about halfway. The nurse told me that I could push it back in and check for placement and it should be fine. To make sure it is in the correct spot I am supposed to listen with a stethoscope and puff a little air into her tube and if I hear it puff it into her stomach, then I know it is in the right place. I wasn't sure if I heard it or not. So I checked the second way I was taught:  I put a syringe on the end of the tube and draw back - if it is in her stomach then milk will pour into the syringe. And it did. I was a little uneasy about not hearing the puff, but then again I knew if it was in her lungs she'd be gagging and choking and she wasn't doing that.

Over the next six hours I fed her twice using the tube and everything was fine. But in the middle of the night she started wailing uncontrollably - so hard she started gagging. I rocked her and she calmed down and went back to sleep. Same thing when she woke up the next morning. I tried to put her in her high chair and she started screaming like she was in pain (Maggie rarely cries the "pain" cry so I knew something was amiss.) I immediately yanked the tube out knowing it was something I did wrong. I called again and was told that actually you can push the tube too far down and it can get into her intestines and cause pain and discomfort. Great. No one told me that. I was just thinking I needed to keep it out of her lungs, and never considered it going past her stomach (another reason I can't believe they let moms do this stuff...)

Needless to say I was hesitant to put it back in and thought that maybe we should try a few days without the tube. I had this realization that things were not going well as we were doing them. I had tried feeding Maggie every three hours while she was awake. The therapists told me it was "cheating" to feed her while she was asleep (because eventually they don't sleep as much and you can't feed a baby solids in their high chair if they are asleep). So for the past 6 weeks I have been struggling to make her take two oucnes while she was awake. If I get her to even start sucking it is a victory. If I get her to take an ounce, that's another victory. I can't remember the last time I have gotten her to take a 2 ounce bottle while she is awake!

This is why the ng (nose) tube was so liberating. I could try and feed her, and if she wouldn't take it then I got put the rest in the tube. And, I have to admit, many times I just skipped the trying all together because why would I sit there and struggle for 30 minutes to get her to take an ounce when I could just put it through a tube in two minutes? Justin and I both needed a break and so I don't feel guilty about doing that all...

Anyways, I decided that what we were doing was not working. As much as I tried, the baby will not eat enough while she was awake. And feeding her every three hours doesn't allow this now six-month adjusted baby to get on a solid nap schedule.  So I decided to switch her from a three hour to four hour routine. And I would feed her as much as I could while she was ASLEEP!! I know I am not supposed to, but it's what we are doing is NOT WORKING!! And when I made this decision I felt like if I could get her to eat her daily goal while she is sleeping, and then the solids a few times a day could be a calorie bonus, then maybe, just maybe we could get her to gain weight and get through this.

So since Friday we have stuck to this new plan:
5 am feed while sleeping
7 am wake and eat solids
9 am feed during nap
11 am solids
1 pm feed during nap
4 pm solids
5 pm feed during power nap
7 pm bed
8 pm feed while she is sleeping
11 am feed while sleeping

Anyways, it has worked surprisingly well. She has nearly met her goal every day, maybe an ounce less than her goal but I figured with solids three times a day that has to make up for it, right?

Wrong! I took her to dietitian today for weigh in and she did not gain anything in the past week. I have no idea how because she had the tube until Thursday and then she did really well on my new plan this past weekend. I was almost mad about it. How could this be?

The dietitian said that she is probably getting a lot more active and burning more calories so suggested we need to up her goal daily intake of milk. I responded that was probably impossible because I can barely get her to take what she needs now but said I would try. So new plan is if at our Thursday weight check she didn't gain any weight we are going to drop a new tube. Then we are going to give it three weeks of trying to feed her as much milk as we can through bottle (and the rest through the tube) along with solids and then we will reevaluate the G-tube.

I am sure everyone reading this is thinking why I don't just go ahead and do it. I know it's not a huge deal, but it's surgery and there are complications with surgery. And my child will have a hole in her stomach for several years - what does that mean for normal childhood activities? And, I know this is stupid, but I can just hear her now complaining about the scar on her stomach when she is 16 and wanting to wear a two-piece to a high school party. (It's okay,though, I'm sure Daddy won't allow her to wear a two piece anway:).) I want to be able to tell her that I really did do everything possible to avoid it.

I swore I never get to this point but I see now what my doctor was talking about with the long-term risks of the ng tube - me putting it down the wrong way into her intestines scared me to death. What if I put it down her lungs and she could got aspirating pneumonia and died?. And I see what he means about how it will relieve our stress. I thought that the care of having a tube in her stomach would be so stressful, but I really think our your daughter only take an ounce at a time is much more stressful than that.

Interestingly we went to the pulmonologist (lung doctor) last week and he told me that this winter Maggie could get a lot sicker than last because the antibodies she had from birth and from breast milk are gone, so her reserves are a lot lower than a normal baby her age. I asked him what we could do to avoid it or help her fight it, and his response was: "Make her grow bigger; if she gains weight then her lungs grow and that is the best thing for her."  Ha! If it were only that easy!

But maybe this was said to give me a boost in the direction we should go...but who knows really? Okay, I guess God does and I guess I need to be praying diligently for the next three weeks....

1 comment:

  1. Hey Lee,

    Just wanted to say that I completely understand that this must be such a hard decision. I can totally see both sides to the peg, and I know if I were in your shoes I'd be going back and forth about what is right. You really are doing a GREAT job with everything, I know it is just so much. Still praying for you guys, for wisdom, peace, energy, trust, and for Maggie's eating. I know that God will sustain you through this one day at a time. Thanks for continuing to post!