Finding the other end of our Red Thread: My Tubie Girls

This week is Feeding Tube Awareness week.

While tube feeding has been a part of our everyday life with Audra for the last 8 months...our experience with feeding tubes goes way back to 2008, when Maura was just 7 months old.

Maura had severe reflux resulting in failure to thrive, a nasty cycle that began when she was just 2 weeks old. She was born full term but a tiny little thing, only 5 pounds. The near constant vomiting and inconsolable crying began around her 10th day of life. We tried everything to help her feel better...

smaller, more frequent breastfeeding sessions
and elimination diet for me
gas drops
soy formula
different types of bottles/nipples
zantac

...but NOTHING helped! Every minute of her waking hours she was crying in pain, struggling to eat or vomiting. She was only content when she was asleep (in her car seat or her incline wedge). Our days were long, and our nights were longer. We were desperate to comfort her. And feed her. She little tummy was only able to tolerate about 1 ounce at a time.

By 8 weeks old she had already been to see the GI doctor twice.
We had tried a few different formulas.
She had had ultrasounds, an upper GI scan and bloodwork done.

Then I took her to an allergist, against the GI doctor's suggestion. The allergist prescribed a special elemental formula called Elecare. It was not covered by insurance (because she was taking it by mouth) and it was EXPENSIVE!! But almost immediately after switching Maura to this formula she stopped crying in pain all.day.long! She still vomited almost non-stop...but she was happy :) Each can (at $45 a pop) was more than worth it's weight gold.

Time went on and we dealt with the constant vomiting, outfit changes and endless laundry because our girl was happy. But she wasn't growing well. She could still only tolerate 1-2 ounces with each bottle. And at that rate there just weren't enough hours in the day to get enough calories into her.

Allergy testing confirmed multiple food allergies
Upper GI's and pH probes confirmed reflux
Endoscopy confirmed inflammation from chronic reflux
and
her growth charts confirmed "failure to thrive"

By her 7th month it was clear to everyone involved that she would not be to grow and sustain herself with the minimal amount of formula that she was taking in each day.

It was time for a feeding tube.

First, she had an NG tube for three months:

Then she had a G-tube placed:

Once the tract was healed she was able to get a low-profile button G-tube:

Finally....after so many months (in fact, really, her entire life so far) the pressure was off...we no longer had to obsess over how many ounces/calories she was taking in each day. Now she could learn to eat for pleasure, something she had never known.

Eventually she tested out of her food allergies. The allergist's explanation (which is supported by some very interesting research) was that because we started Maura on the elemental diet early enough (8 weeks old), and it was her sole source of nutrition for many, many months....her immune system was essentially able to re-boot.

After 18 months of tube feedings, special diets, and feeding therapy she was finally able to eat enough by mouth to grow! Then, following a few months trial of not using her G-tube for nutrition it was removed (very non-monumentally...at home...by me) when she was 2.5 years old. Leaving only a small round scar with a big story behind it. She calls it her "other belly button" and she wonders why everyone doesn't have two belly buttons!

Our experience with Maura prepared us for our journey with Audra. It was quite clear to us from the very first minute we saw Audra's file and picture that she was suffering from malnutrition. And the likelihood of her needing a feeding tube for at least some period of time was pretty certain.

But we had been there, done that. And we knew we could do it again.

Regardless of our previous experience, the first time we laid eyes on our beautiful 5 year old who weighed a mere 21 pounds was difficult. She was skin and bones, and so very fragile looking. Even with 3-4 layers on clothing on we could feel every.single.bone.

During our first hours/days with Audra it became quite clear that her malnutrition was not a result of her being a "picky eater" (as she had been described to us by her nanny from the orphanage).

This girl can eat...and will eat anything...anywhere...anytime!

After a few months at home, eating a high fat, high calorie American diet...she still wasn't picking up any weight. After many blood draws, scans, ultrasounds, scopes, etc. it seemed as though her digestive system was the problem...some type of malabsorption. She could eat and eat endlessly but her body doesn't absorb it.

Her doctors gave her time, and more time, and even some more time. But she still did not put on weight. At six months home, she was unexpectedly diagnosed with an intestinal malrotation which was surgically repaired. We (and her doctors) had high hopes that this would result in better intestinal absorption of the food she ate. Three months later, she still wasn't putting on weight. At that point "tube talks" become more serious. Daily calorie counts proved she was eating way, way more than should be necessary for adequate growth. But her growth charts didn't agree.

14 months after coming home, Audra had her G-tube placed. We went straight to a G-tube with her and avoided the NG tube. She had been through so much medically during her first 14 months home...

5 hospitalizations with countless blood draws, scans, procedures and trips to the operating room...

I didn't want her to experience the discomfort of repeated NG tube insertions while in the safety of her home and at the hand of her new Mama.

Audra has had her G-tube for 8 months now. She receives a special semi-elemental formula through the tube while she sleeps at night (which is the primary source of the nutrition that she absorbs). During the day she can eat whatever she wants to. This really is the best of both worlds for Audra. Our girl who loves to eat can still eat everything and anything she wants to during the day. And we can rest assured that she is getting the nutrition she needs for growth and development while she sleeps at night.

Audra (June 2014)

the day she got her Tubie and her Tubie Friend