Finnian started out Day One of life earthside with having trouble nursing. But on we pressed. He is my 3rd so I had it down pretty well by that point, even with the extra challenges thrown in. But he slept too much, lost too much weight, had trouble figuring out how to even suck. I tried every trick and we got through what I thought was OK, but he had gone from 50% to 14% by 12 months old. He didn’t take well to baby food and “baby led weaning” was an utter gagging disaster! Still he was meeting all developmental milestones at this point, despite his feeding issues that I thought were just a variation of normal.
When he turned 2, his pediatrician paid no attention to his declining weight at his well-visit, but I was tracking it myself, almost obsessively. Okay… obsessively. I had noticed that he lost weight a couple months before from just a simple cold. Those pounds were precious! So, we bypassed the pediatrician and went to the Ready Set Grow Clinic at Children’s Mercy. My husband took him to the appointment and he felt very uncomfortable the whole time as he was grilled by a social worker. He left with the FTT label and an order to drink 2 cans of Pediasure a day in addition to his usual diet. Then, no follow up for 6 long months!
Of course the Pediasure (aka, not real food) wasn’t helping because he ended up drinking it *instead* of eating real food. He wasn’t getting more calories and his diet became more and more limited over time. The whole Pediasure for 2+ years debacle ended with rotten teeth from so much sugar and no better weight gain than he’d had doing what we were doing before. His health declined all around. He was getting sick so much by his 3rd birthday that he wasn’t even able to attend preschool for an entire semester! He qualified for services but couldn’t get them.
Two GI’s, a dietitian, an entire Feeding Team, a swallow study, an OT for feeding therapy, an EGD and scopes (ENT) to look for clefts left us with nothing more than a prescription for reflux meds, an appetite stimulant, and increased orders of Pediasure that he wouldn’t/couldn’t drink, a narrowing (sensory) of actual foods he would eat. He saw 2 endocrinologists, we fought insurance to cover a growth hormone stimulation test that he passed. More blood work at every doctor, celiac’s disease tests, an abdominal x-ray, and a stool sample. We were told this was just his normal and he was doing well “for him.” We were told it was behavioral and somehow I was doing something wrong or not doing enough. I tried everything I could think of. I made multiple various shakes, smoothies, purées, put them into different types of cups, bought different spoons, used reusable baby food pouches, tried every suggestion made to me by this team of professionals! I refused to believe this was normal.
Well, doctors don’t always know it all, or clearly, always know what’s best. I think each doctor or professional was just waiting on the next one to worry about it. Then, in came the 3rd GI in Columbia. Far removed from this other team of doctors. In all honesty we were afraid he’d think we were “doctor hopping” or would also blow us off. But the reality was, we had moved and the 2nd GI was not covered by insurance (it took me a year to pay off all those bills). Still, I was prepared to go in and fight for Finn this time. To my surprise and relief, I didn’t need to. Thankfully the new GI had some common sense and immediately saw the need for a g-tube. He saw that every other stone had been turned already and he was still, at age 5 (!!), not thriving. It was very scary but we all knew it was necessary, and in the end, became a huge stress reliever for me. I no longer had to worry about how much he wasn’t eating or drinking. Once he had the g-tube placed, this constant worry over his oral intake wasn’t keeping me up at night anymore! I had the peace of mind that he was getting what he needed, no matter what other circumstances there were.
The best part is that he eats real food through his g-tube! There’s no compromising his health anymore with the sugary corn syrup full of synthetic vitamins. I said “No” to formulas from day one and thankfully the hospital was very supportive (many are not yet unfortunately, but patients and caregivers are catching on to the beauty and simplicity of eating real blended food through the feeding tube). I also had an online group for support and advice, and a few live local “tubie mom” friends getting us through the transition.
He gets 3 pouches of Real Food Blends a day. They have a variety of 6 different blends. I also sometimes make my own blends for him for extra variety. If he’s sick, I can make a special blend with bone broth, turmeric milk, honey, cinnamon, garlic, elderberry syrup, whatever healthy stuff he would never otherwise ingest on his own, to help him get better faster. I can treat constipation or diarrhea naturally. I give him all his meds through the g-tube that were previously either a struggle or impossible orally. We haven’t had to go to the ER for IV fluids in quite some time because I provide his hydration. It’s been the best thing to happen to him. He has gained 10 (TEN) whole pounds in the last 12 months! That’s huge for a kid who previously only gained 2 lbs a year. He’s still in feeding therapy but with someone new, started seeing a new Feeding Team, and he does get most of his daily intake through his tube still. But it seems real (blended) food, and in the right amount, really agrees with him!