Proving me wrong every time

Ellie was kicked out of the G-tube Club this week. She had been a faithful member for over two years, but as she grew older, she found herself unable to continue to abide by the rules and standards. I guess chewing and swallowing her food was just too much of a temptation.

I am glad she resigned her position. I did not want her in the club. I think it was the nurse who first subtly snuck in the idea one day while we were talking.

Ellie on her first day as a new member of the G-tube Club.

“Have they talked to you about a g-tube?” I think I remember as the first mention of it when Ellie was about four weeks old. She scheduled a time for the social worker to come by and show me what it looked like and how it would work. “Just think about it,” she said.  

“It looks like a pool toy,” I told her when she showed me a baby doll with the apparatus attached.

Before she was born, I had done my research. I knew that kids with Down syndrome had low muscle tone and one of the first things to work on was feeding. Sometimes these kids aren’t born with the instinct to suck.  

In Ellie’s case, she was taken to a different hospital right when she was born and never offered a chance to nurse. I doubt she would have been able to anyway. So an NG tube was placed in her nose and run down to her stomach in order to push nutrients to help her get stronger.

When I got to visit her for the first time in her hospital room, there was a flurry of activity around her. Ben and I tried our hardest to learn about this new person who lay underneath all of the wires and tubing.

We did our best to measure her personality even though her broken heart kept her very tired and lethargic. There were so many medical details and words to quickly learn in order to keep up with what was happening. All the while, a mechanical pump pushed her food – a mixture of special formula and breast milk – continuously.

Occasionally, she would try to take a bottle from her therapist Melissa. But even at her early age, it seemed like she just entertaining the idea rather than understanding that this was normal, commonly-held way to eat.

At day six, she had her first open-chest heart surgery and from that came physical restrictions. She bounced back a lot quicker than I expected, but it was a few weeks before we could try to feed her again from a bottle. She played with the idea, never taking in any real volume.

We had to take her downstairs – tubes, wires, machines and all – for a swallow study to see if the consistency of milk was too difficult for her to swallow. The low tone affects every muscle from the mouth all the way down the throat and beyond.

Further complicating matters, Ellie’s airway was so weak that it would collapse and the only thing that kept it open was a push of air through the cannula in her nose. The test showed that she couldn’t swallow thin liquids without sending some into her lungs – a big no-no for her.

Back up in her room, Melissa talked to me about how to thicken her milk to make it safe to drink. Formula would have to be her main nutrient from a bottle because breastmilk and thickener don’t really mix together appropriately.

For weeks we tried to get her to drink. The goal the doctors gave us was 75% of her daily fluid intake by mouth. I don’t think we ever really got past 30% or so and even that was probably a stretch.

When the nurse mentioned the g-tube to us, it was in an effort to get us home sooner. We had been in the hospital for about two months and she knew that we were ready to go. Ellie was recovering nicely from surgery, and we were starting to close in on a solution for home oxygen/room air. Outwardly I entertained her suggestion, but inside, I wasn’t interested.  

“She will get there in her own time.” “The one thing we know for sure is that you can’t make kids like this do anything.” “We are on Ellie’s timetable now.” “She will prove you wrong every time.”

All of these were things that the doctors and nurses told me about what to expect from Ellie.

“How sweet,” I thought. “We should make Ellie her feel included so that we have her buy-in. As soon as she feels like she can be part of the solution, she will come around.”

I wasn’t ready to hear what they were telling me. All I could see in my mind was failure. If she got that button, it meant that I had failed at teaching her the very basic thing she needed to live. Go, go, go! Push, push, push! With my encouragement and dedication, I would force her to win this battle.

During the day Ben was back at work, and at night he was home with Jack. I stayed at the hospital with Ellie. He and I would see each other in the late mornings. Most days, he would get to the hospital in time to hear the doctors’ rounds and then we would walk down to the cafeteria for lunch.

“I think we need to talk to them about a g-tube tube,” he told me one day after rounds.  

I started to cry. (To be fair, making me cry was a pretty low bar. I had been awake for two solid months, trying to normalize all of the abnormal things happening around me from my fold-out cot while recovering from a c-section and surviving the postpartum hormonal haze in a fishbowl. Don’t give him too much credit for those tears.)

“She will get it, Ben. I think we are getting close to turning a corner,” I said as I walked over to the spreadsheet that I had taped to the wall. I updated it every day, marking the time of each attempt to feed from a bottle and the amount in milliliters that she would drink – 1.5 mls, 0 mls,  0.9 mls, 1.8 mls – and printing it on the printer in the Family Room.

When I looked over at the line graph that I had started, I realized that we had no trend. Ellie was doing what she was going to do and no amount of pushing was going to change it.

All of this was something that I created. I had placed a lot of value on being able to teach her to eat. I had forced so much pressure on something that I thought I could control.

Every Nature on PBS touches on new animal babies and their first draws of milk. I couldn’t understand why would this be any different. It came from a good place. I really thought that it would click and she would get it.

I saw my role as pushing her to do this as the ultimate proof of my love for her and dedication to her. It would set the tone for how Ellie would climb over every mountain put in front of her from now on.

Ben was right. I finally could see it. He told the nurse that day. She told the doctors. The doctors put in the order and Ellie got her g-tube within the week.

Ellie at two years old. Untethered.

“How long do you think she will have it?” I asked one of the doctors one day during rounds as Ellie lay behind us on her back with the big, foreign valve hanging out of her stomach, arms stretched up playing with her mobile. She was tethered to so many machines. This port just added another obstacle for her to overcome.

“A couple of years. When she is two, I bet you get to take it out,” he said. “Don’t worry. She will get there in her own time.”

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