This was Rosie with SO MANY TUBES in her nose. She had the O2 cannula as well as NG tube for so many months and seemed miserable. This was another factor in choosing the G-tube for her… We wanted her to have one-less tube on her pretty face!

Why Does Rosie Have a G-Tube?

This week being Feeding Tube Awareness Week, I wanted to do a series about our life with a G-Tube. Rosie has had one for almost two years now and we often get questions about this part of our daily lives.

During Rosie’s long hospital stay from September 2015- March 2016, she fought harder for her life than most ever have to. She had several experiences which warranted serious discussions with her medical team about the possibility of us losing her or having to face some of the hardest decisions any parents will ever face. We are grateful to the Lord that we DID bring her home, though, but our perspective on life and parenting is forever changed because of all we went through in those months. Needless to say, the fact that we have a smiling, breathing, incredible girl to hug and snuggle every day is nothing short of a miracle.

Toward the end of Rosie’s long stay in the hospital, we were getting closer and closer to taking her home. She was doing well, breathing on her own (something most of her doctors doubted she’d do), and needing only a small amount of oxygen. We had a conversation with the doctors about what needed to happen in order to finally walk out of the CVICU. We were told that Rosie getting a G-Tube was literally all that had to happen for her to come home with us. The truth is, proving that she could get adequate nutrition is all that needed to happen, but we understood what was meant by the statement we heard. This overwhelmed us and we took a few days to learn as much as possible before making a decision. We were grateful to have a network of friends in and out of the Down syndrome community who were happy to connect us with folks who have kids with G-Tubes. We had to consider everything because this would change our lives drastically.

Before Rosie’s surgeries and extended intubation, she really was a good eater. We’d had six weeks at home in which she took the bottle like a champ, except for tiring out because her heart was just so sick.

This was the first time Rosie was offered purees. We were at a complex care appointment with a very kind SLP who started to give her a bite and then said, “Is this her first bite of food?” When I told her it was, she handed me the spoon because she knew it was a big deal to us.

She was working so hard to breathe that eating was just too much for her. That’s ultimately what landed us in CVICU at all. All that to say, our decision was a lot harder for having seen her do so well at the bottle (and actually, at the breast too, for a bit). We had memories of her eating SO well and now here we were talking about a feeding tube. If felt like we were giving up on her. Now I know that shame was an act of the enemy which is prevalent in our walks as parents. At the time it was debilitating and I had almost no resilience to it. 

But ultimately, it had been months since she’d eaten anything by mouth. The skills necessary to eat again were hard to assess in her because she was still on so much medication, but the odds were, she needed the G-Tube in order to eat and grow. So we scheduled the surgery to place the tube and focused on the positive side of all of this: Rosie was coming home soon. 

Rosie plays with a spoon and food, and even sometime putting in her mouth! Meanwhile, her nutrition goes through the tube directly into her stomach.

We realized just a few weeks into being home that Rosie indeed needed the tube. She was diagnosed with a seizure disorder, infantile spasms, soon after coming home. At that time we saw some developmental regression that slowed her progress learning to eat by mouth. We were able to focus on gaining seizure control instead of experiencing very stressful mealtimes in which Rosie would struggle to eat. She still tasted food and experienced meals, but the pressure was off of her and us to get calories in her. 

We have a love/hate relationship with the G-Tube. We are grateful for the way it has allowed us to grow her big and strong in case she needs any surgeries in the future. We love the fact that we can keep her hydrated and avoid the emergency room when she gets something like, say Hand/Foot/Mouth, WHICH SHE DID get last October, and ROCKED. We are grateful that we are able to put medications in the tube without waking her up while she sleeps. I can give my kiddo almost any nutrient-dense food I want (and I do- more on that later). There really are so many advantages to it. 

At the end of all that, though, I’d be lying if I didn’t tell you that I wish so badly that Rosie didn’t need this tube. I wish we had all the same struggles as other parents- getting their kids to eat vegetables as such. For us, it’s about getting her to eat anything by mouth. I’m a very positive person by nature, but I surely would trade the G-Tube’s perks in a heartbeat to see my girl light up at the taste of my cooking.

Stay tuned for tomorrow’s post- I’ll be sharing about what we feed Rosie via the tube. It’s not your standard G-Tube diet!

 

And here’s my beautiful girl, right before a 13-hour surgery reconstructing her skull. Her “button” (another name for the tube) was handy during recovery- we didn’t need to tape an NG tube to her face!