Month: July 2014

Breath: Check; Eat: Hmmmm

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Audrianna’s trach allowed breathing to be possible…..and no longer a struggle…..

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But the the struggle to maintain her own basic life functions (again, something that we take for granted everyday) was not over….she needed to learn how to eat……

Audrianna did really well after her trach surgery and was given the go ahead to begin oral feedings fairly soon after…..

Up until that point, Audrianna’s breathing related¬†concerns were so significant that learning to eat became less important.

So, to promote oral stimulation, we ensured that Audrianna was given a pacifier during every tube feeding, hoping that we would learn to associate sucking (on the pacifier) with her belly feeling full (while the syringe full of milk slowly flowed into her stomach).

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However…..if you’ve read Audrianna’s story thus far, you might have come to notice that Audrianna doesn’t follow those “supposed to” rules….

So nevermid that from the day that they were born (until they were 14 months old), I was still pumping every two to three hours (always), that our schedules were made around my pumping schedule, that I never missed a pumping session, that my pumping bag came with me everywhere, that I pumped anywhere, that I set my alarm to wake up every two to three hours overnight…..

She refused to nurse….she refused breastmilk in a bottle…..she refused every feeding….for weeks…..

And then….one feeding….one amazingly wonderful nurse offered a different perspective…..and asked if we would be open to trying formula….

And we were……deciding that if it would encourage Audrianna to drink orally, it didn’t matter if it was breastmilk or formula….

And (thankfully), drink formula she did……

Beginning, at first, with 8mls……and eventually…..full feedings…..

Every four hours…..we saw her hunger cues……

Except that….for the first time…..the introduction of formula resulted in increased emesis (vomiting)….every feeding…..large amounts of mucus……significant GI symptoms….

However, she was doing it……drinking…..and so….

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The doctors decided to remove her¬†NG tube and “test” her ability to take enough volume to support her nutritional needs

NOTE: that some hospitals allow babies to go home on supplemental NG tube feedings….others do not…..(our hospital does not)

But….in true Audrianna fashion, she only drank well for certain people, Michael and I….her favorite nurses…..

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And so……without the NG supplementation….Audrianna failed to maintain her body weight and fulfill her hydration needs…..

So…..we decided….to move forward with GTUBE surgery…..

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Hoping that we could continue to bottle feed her….and use the feeding tube to supplement her when she did not take full feedings….

Wishful thinking…..

Within the days and weeks following surgery, the volume Audrianna took orally diminished quickly….until she was taking nothing at all…..

And so began another journey……that continues today……eating…..

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But….no worries….it will happen…..in her own time….in her own way….

Journeywuote

 

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