Cutie Patubie

It’s Feeding Tube Awareness Week, and how fitting, because our brave girl will be getting her g-tube on Friday. What’s a g-tube? A g-tube or gastrostomy tube is a feeding tube placed in the abdomen to deliver nutrition directly to the stomach. There are lots of conditions that might cause someone to need a feeding tube either temporarily or permanently, including: cardiovascular, developmental, endocrin, genetic, GI, immune, neurological, metabolic, swallowing, respiratory, and structural. In the medical world a feeding tube is low on the list of scary interventions. Madison has been fed by an NG tube many times. We know in our hearts having the ability to feed and hydrate her without stress on her off days will be so beneficial, but for some reason it’s still a really hard thing to accept.

We are so proud of her for working hard over the years at retaining the skill of eating by mouth. In fact contrary to what many people think, lots of people with feeding tubes CAN and do eat by mouth. But sometimes they can’t eat enough. In many ways a feeding tube feels like we’ve given up. It feels like we’re doing this for convenience. It feels like we’re letting the seizures win. It feels like we’re going backwards & regressing instead of moving forward & improving. But I know that’s not true. When Madison is good, she’s good! But when we adjust meds, when her seizures act up, when she’s sick, she flat out doesn’t eat and drink enough or do it safely anymore. She has so many things against her already, I would hate for her nutrition to get added to that list when it’s something we can very “easily” fix.

The plan right now is to still feed her by mouth whenever she is willing and able, and to use the tube for meds, for extra calories & hydration, and for full meals on days when she’s not feeling her best. What can she eat through her tube? There are quite a few options! Tube fed individuals can have breastmilk, special formulas, or blended real foods. Most work closely with a dietician to determine what their caloric needs are and go from there, which is exactly what we’ll be doing. Some individuals require a constant slow delivery of food or water throughout the day or night, while others eat with a bolus feed. A bolus feed is given like a meal in which a larger portion of food is given over a shorter amount of time. How much food and how quickly it’s given all depends on the individual’s feeding tolerance and nutritional needs.

Her team was actually in no rush to get her the g-tube, but she needs to go under anesthesia for some dental work, so John & I made the executive decision to get both procedures done at the same time to prevent us from having to put her under a second time in the future. We’re super lucky that her dentist just so happens to operate out of the children’s hospital where the rest of her care team works and was completely on board and extremely helpful in getting everyone needed on the same page for a combined surgery day.

Every warrior mom in my circle has assured me this is going to be one of the best decisions we can make for her. And I know they’re right. While it feels a bit like a sucker punch, I also feel hopeful that perhaps getting her extra calories and hydration will eliminate some of the frustration we often see from her. We have many days where Madison is inconsolable, and we have no idea why. But it’s very possible that she’s still hungry, having GI discomfort, or feeling weak & tired, all of which additional nutrition and fluids can help with. John and I very rarely leave Madison, but when we do, we are constantly stressed over whether she will eat and drink while we’re gone. It’s hard to enjoy time away when we’re always checking in for a status update & cutting the night short because we know she’s behind on her nutrition and we’ll have to step in when we get home.

There have been many times that due to her excessive sleep alongside therapy and doctors appointments, that she may not have lunch or dinner until extremely late in the day. When you have a child that can’t feed themselves while you’re out, it adds an enormous amount of time and anxiety all around meals and getting them in. Madison can’t eat lunch on the way to therapy. So if therapy is at noon for an hour, and she falls asleep after her session, I can’t feed her until she decides to wake up again, even if that’s not until 4:00pm. We’ve always made eating by mouth work, but I can’t say that it hasn’t been a struggle. My entire day is based around feeding her. And some days it’s smooth and seamless, but some days it’s a nightmare. I’m excited to get up each day without so much anxiety because I know we can feed her whether she’s awake or not; whether she’s in a good mood or not; whether she’s healthy or sick. No matter the circumstances, we now know she’ll be fed and hydrated. Nutrition will no longer be a worry, which is a huge relief considering we already have a very long list of worries about this girl.

On another note this is also the first major medical intervention that I can’t be there for thanks to Covid. Currently the hospital only allows one parent to accompany a child, and because Caroline needs me for her nutrition, dad will be tackling this stay solo. I knew having a baby would mean John and I would have to split hospital stays in the future, but we both, baby and all, would have gone to her surgery together had it not been for this pandemic. We would have waited as a family while she was under, and parted ways only once we knew she was out, okay, and ready for admission. Mom guilt is very real, and missing this because of something outside of my control, is gut wrenching. Theme parks are open, 25,000 people were just allowed at the Super Bowl, but two parents can’t go to their medically fragile child’s surgery. The hypocrisy of this pandemic is disgusting, but that’s a whole different subject.

The surgery itself is honestly an “easy” one, but going under anesthesia is always high risk for someone like Madison, so if you could say some extra prayers that everything goes smoothly this week, we’d certainly appreciate it. At the end of the day I know this is the right move and I’m so grateful for my medical mama friends for allowing me to vent, answering all my questions, and surrounding me with support during this transition. This Friday Madison’s stomach will no longer be smooth and bare. She’ll have a new accessory that will help her thrive, just like so many of the other interventions she relies on. It’s never easy, (even when you’re a medical parent & very used to it), to admit your child needs help, but we are ready for this new part of Madison’s journey & hope it will help her in more ways than we’re even considering. Here’s to our cutie patubie!

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