Thursday, May 9, 2013

How We Tube Weened Addison

(Updated 9/29/2013)

This post (and the ones that will follow) are long overdue. Almost a year over due in fact. But first lets back up and recap a little first in case you are just finding this blog and you are looking for guidance (or support).

Most importantly - we did this under the blessing of our Ped (who slightly disagreed with our GI, whom we too did not agree with), and Addison was monitored every few weeks for weight gain. (Plus I may or may not have weighed her every few days at home.)

For our first time readers - Addison is a twin, born at 26 weeks weighing 1lb 10ozs. She spent 153 days in the NICU before coming home to us with a G-tube (and Nissin Fundo). With the exception of only TWO horrifically failed attempts in the NICU, Addison had only ever been fed by a feeding tube. In the NICU it was decided that due to terrible reflux, a Cleft Palate and a very uncoordinated suck/swallow reflex she was unsafe to feed orally. From the day we brought her home we spent countless days in therapy and working on oral stimulation and slowly working towards oral feedings.

She came home from the NICU being fed overnight as well as every few hours during the day. After a lot of research and consulting with our Ped, we made the very conscious choice to begin decreasing her overnight feeds by adding 5mls to each of her day time feeds and decreasing her overnight feed by 20mls a night. We increased those day time feeds by 5mls every 3 days as she tolerated it. If she retched a lot or seemed uncomfortable we'd hold steady and try again a few days later.

After her first birthday and her Cleft Palate repair, we condensed her feeds again, down to 3 a day at 8 ounces each. It was at this same time that her GI decided we should change her to Pediasure to one with a higher calorie content per ounce, and began working even more aggressively towards eating orally. Once she was able to take more then one bite at a any given time she had another MBS (Modified Barium Swallow) to make sure she was safe to feed and not aspirating, that came back all clear and it seemed the only thing standing in our way was the fact that Addison was just simply not hungry.

On Oct 25 2012, we had an appointment with our Ped to address Addison's sudden and dramatic weight gain since changing her formula. We talked in depth about Addison's progress, she was now eating up to an ounce of purees - twice a day if I was lucky, and how she always did best in the morning after not eating all night. It was then that our Ped said, based on all the information I was giving him that we needed to consider that developmentally we were slowly closing in on the window of opportunity where Addison would learn to eat. It was time to push her hard.

Mind you we had moved to a new state just a few weeks before this and had no OT to work with us on this initially. (We were still commuting to see our old Ped though.) Our OT from our old home was great, and helped us so much. It's with her help that we made it that far.. but what now? I was flying solo. Thankfully I had a lot of resources from our first OT that would get me started and I was still researching more. One blog that I found incredibly helpful was The Crunchy and the Smooth. I must have read her blog a million times over, pulling ideas and insight and taking notes.

I came home from the Ped that first day, had a pep talk with Addison and vowed we weren't going back. I tube fed her before bed, just like always, but the next morning - I offered her a breakfast puree and Pediasure in a cup this time. She ate a little... like just a few bites and drank enough just to wet her mouth. I tried to feed her every hour on the hour, even if it was just a few bites. I counted every ounce and every calorie.

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