May 19, 2010

O-U-T spells OUT!!!!!!!!!!!

Today I got the news I've been waiting for: a surgery date for my daughter, A. On July 15, she will go into the O.R. where she will be seen by 3 of her surgeons. Her ENT will do a scope down her tracheostomy to see if she is a "candidate for decannulation" (his words); her GI doctor will do an endoscopy down her esophagus to look for any signs of reflux; and another surgeon will remove her g-tube (feeding tube). She will spend one night in the hospital, to watch for infection after the removal of the tube and the subsequent stitches.

This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.

So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!

A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).

A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)

Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.

Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.

Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.

I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.


  1. Bread and blue cheese huh? She's got great taste!

    I'm so happy for you all, I know you celebrate each of the little steps she takes but these big moments, these milestones and developmental leaps and bounds, they're huge.

  2. I loved reading how you've gotten to this place of not depending on the g-tube. It's been quite the journey and what an accomplishment it is! Thanks for sharing the tip on the doidy cup - I'd never heard of it before and I think it'd be perfect for teaching Elijah how to drink from a cup (he can drink from a sippy on his own - which is actually a fairly new skill).

  3. Thanks Lisa! You should totally try the Doidy cup for Elijah---I found it randomly by doing a search online for "teaching cups". It's great!


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