Wednesday, July 11, 2012

Baby's got a new pair of shoes!

Those of you that see us often have probably noticed that Eliza is usually barefoot or just wearing socks. It's not (just!) that I am too cheap to buy shoes for a non-walker. It's actually (you guessed it) another micro preemie thing. She has extra small feet for her size but in addition to that she's always had very little movement in them. Typical children move their feet around a lot, figuring out how to make them work, putting pressure on them, and uncurling their toes (this all stimulates growth and change in feet too). Eliza has just started doing this in the last couple months...before that she always held them still and stiff (which is really bad for blood circulation too). Being barefoot encourages the movement in her feet so her Physical Therapist has always recommended to keep her barefoot as much as possible. But now we have a new pair of special shoes for Eliza from her PT! We call them her 'clod hoppers' cause they are extra wide and heavy to give her a bigger base to try standing. They are so cute on her and they really help with making her feel more relaxed while practicing standing. Eliza is doing an amazing job at pulling up to stand! As with all Eliza's motor skills we have to work on it over and over and over and over! But it sure pays off....


Tuesday, July 10, 2012


Last month, we spent a week in north Georgia on vacation. Heather's parents rented a cabin in Ellijay and invited the whole family to come stay with them for the week.  It was a very relaxing week, with nothing on the agenda except good food, good company, playing with babies, playing board games, and occasionally tubing down the river that ran through the back yard. While we were there, we also got to celebrate her parents' 35th wedding anniversary! Here are a few pictures from the week.

Happy anniversary, Pops and Nana!

...So much baby love...

Eliza and her Uncle Bizzy

Cousins - you just KNOW these two will be causing trouble together soon!

 Baby Benjamin, relaxing with his parents

Glenn's parents were able to come visit for an afternoon

 Eliza showing off her "monkey face" - what more is there to say?

Monday, July 9, 2012

Feeding Tube Tribulations, Part 2

Continued from this post...

Everything went pretty smoothly that Friday night. Saturday morning we noticed that it was much more awkward to connect her extension tube to the button but we didn't really think too much about it. Saturday night Eliza started puking formula. If you've been paying attention you know that that's not supposed to happen while being fed through the J port because there shouldn't be anything in her stomach. Sunday too we could tell she was a little more uncomfortable during her feeds but since it was the weekend we just tried to hang tight until Monday.

After talking to the GI nurse on Monday she asked us to come in for an X-ray and possibly to have the tube replaced. She said that if Eliza was puking formula during J feeds then the J tube most likely had changed positions and was coiled in her stomach instead of feeding into her intestine like it should be. I asked if this was a common occurrence for G/J tubes and she said "It does happen, but never this quickly."

And exactly as predicted the tube was curled in her stomach, in the wrong place. Fortunately the re-placement of this tube went much smoother. I requested some lidocaine for her belly since she was already so sore. The resident was extremely quick, efficient and actually acknowledged Eliza and talked to her throughout the whole procedure which probably took 10 mins. After questioning the radiology folks about why this happened so fast they said we needed to make sure we weren't rotating the exterior "button" of the tube. This is fine with her old G tube, but not with a G/J tube because of the problems it can cause with the J tubing inside her, as we had discovered. It would have been nice if anyone had warned us about that, because when we'd had the button previously placed on Friday, they'd put it in "upside down" so that when we hooked the feeding tube up to it the tube was running up her body toward her face instead of down and out of the way. Naturally after a couple of rounds of that annoyance, Glenn had just turned it around right side up to fix the problem - whoops! Thankfully this time it was put in right side up from the start.

After all this chaos I talked to our Gastroenterologist and we discussed if there were any more problems with the G/J tube we would have to come up with a plan C or D since we weren't willing to continue subjecting Eliza to this. Fortunately we haven't had anything else this dramatic happen with her tube since then (knocking on wood here). She had several weeks of soreness and sensitivity that made everything a little tricky and I think it took her a while to get used to NOT having anything in her stomach at night.

All in all I think the G/J has helped us get a little closer to some of our original goals. The puking is a little better. The interest in eating was (yes, I said "was"!) better. Her comfort at night seems better.

But after a couple months I think we've realized that it's not going to be the only answer. The GERD and interest in eating aren't enough better. So we've continued looking into additional ideas, trials, medical professionals and approaches. We have also been advised to start considering an intense in-patient feeding clinic. There are a few around the country but none in North Carolina. We are looking at ones in Virginia, Maryland and New Jersey. I've heard and read that these can make a huge difference in a child with feeding issues so we are hoping to get on the waiting list for one in the not too distant future. A few of the negatives - questionable insurance coverage, 6 month waiting lists, 4-6 week stay at the clinic (for all of us- no idea how this would work for Glenn). So nothing definite so far, a lot to research and think about, but it's a next step we're considering.