Meet Addison… my ex-26 week preemie… twin sister to Blake.
Addison is primarily G-tube fed.
What is a G-tube? A G-tube is a gastric feeding tube that is surgically placed directly into one’s stomach for the purpose of providing nutrition. Medical advancements have come a long way since the first G-tube, now days many individuals sport what we call a “button”.
No more long tube set left to dangle, to be tugged on or tucked away in effort to disguise. The bottom portion (including the balloon) stays inside the stomach while the top part lies against the skin. The balloon is filled with water and is deflated to insert or remove the button. There is a“snap” on the top that opens and allows the extension set (feeding tube) to be connected for feeding.
Why is Addison Tube fed? As a preemie Addison faced several obstacles, one major obstacle was reflux. Her case was so severe that the NICU refrained from even attempting oral feeding via bottle. To complicate things even more she was diagnosed with a cleft palate (opening in the roof of her mouth that did not close in utero), which hinders her ability to gain good suction to suck on a bottle. Those two things alone paired with a very very late start to oral feeding since created a huge obstacle including major oral aversions as well as never developing the suck swallow breathe reflex.
At 3 months 2 weeks (actual)/2 weeks (adjusted) of age doctors performed surgery to place a Nissin Fundo (to control reflux and prevent aspiration) and the G-tube, (these two almost always go hand in hand). After she recovered she was discharged to home and begun feeding therapy. We meet with OT thru Early Intervention once a week, and practice eating by spoon & drinking from a Sippy cup 3 times a day. Some days she does pretty awesome and will eat up to half a jar of Stage 1 purees, other days she is less then interested and we are lucky if she will take one bite.
Feeding a tube fed child is a fine art, a balance of tube feedings and oral feedings. It’s a fine line between making sure Addison isn’t getting over full from tube feedings (and hence making her not hungry, and refusing to eat by mouth) and making sure she is getting adequate nutrition. It’s also a lot of trial an error to find out what works to get the best results.
In our case, instead of just filling a spoon and putting it in her mouth, we have to do what I like to call “warm ups”… Exercises where we stimulated her mouth and help Addison get organized to eat. This begins with brushing her gums with a Nuk brush, 3 times on each side of her mouth & tongue, while giving her a moment to swallow in between…we repeat this about 3-5 times each. Then we encourage her chewing reflex by placing a Chewy Tube (shaped like a T) near her molar area and allowing her to bite down & chew. After 5 seconds we take it out and give her a chance to swallow and repeat. Then comes the spoon and Sippy.
Like I said…it’s quite the process. We are also learning that she really isn’t all that crazy about baby purees and she really likes “self feeding”. She is a lot less resistant if she is the one putting things in her mouth, so we try to give her lots of opportunities to do this as well.
Her oral surgeon promises that things will get MUCH better once she has her cleft palate repair this summer, and her GI doctor is convinced we’ll be saying “Bye Bye Tube” by age 2. Until then we continue to work with her every day, and pray.
It can be very overwhelming. In public people stare and wonder why you aren’t feeding your child, and what is worse is they even stare when we’ve tube fed her in public. I understand children being nervous and curious but grow adults stare and gawk which is frustrating. We also meet a lot of misunderstanding or even denial, from grandparents, family & friends. None of which have ever fed Addison. It’s not their fault and all we can do is teach them.
I think one of the biggest fears as a tubie mom is that someone will naively feed Addison something that is not safe without our permission. And again that’s why knowledge is so important. Holidays such as Thanksgiving can be especially tough with all the food around. But there are also many positives to the feeding tube, when she is sick, I never have to worry about keeping her hydrated and I can administer meds without any fuss or fighting. If it wasn't for her feeding tube things could be very different. In the beginning I had a love/hate relationship with her feeding tube, but now I know it was the best choice and I couldn't love the tube more (but I will still be glad to see it go).
She continues to develop, thrive, and astonish us all by defing all the odds. She is your typical little lady, in fact for the first time since their birth she's actually outgrown her "little" brother. Now if I could just get her to lay still and stop trying to run away when it’s time to “eat”. J
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