If you have children, you're most likely familiar with growth charts as well as percentiles for height/weight/length. Can I just say: I HATE GROWTH CHARTS! Seriously, I hate them! X doesn't fall on the "normal" growth curves. He never has. He started life at a tiny 1 pound 12 ounce weight. Now, at 17 months old, he weighs 17 pounds. He's tiny by traditional standards. However, if you stop and look at how far he's come from that little 1 pounder start, he's come a LONG way!
For the longest time I measured every drop of formula or food he took in. I diligently charted it, counted calories, and worried when he didn't eat as much or gain as quickly as other kids. I tracked every gram of weight he gained or lost. If you want to know the truth, I almost became obsessed with charting his intake and making sure X hit goals and specific amounts of calories and goals for amount of weight gained per week. I worried constantly.
One day, I stopped and realized...tracking X's intake and weight gain was consuming me. It was actually GETTING IN THE WAY of my bonding with X. He was picking up on my stress and worry. As a result, he didn't eat as well which ultimately meant he didn't gain as well. When I realized that, I stopped. I deleted the apps (yes, apps plural) on my phone and deleted the bookmarks on my computer. I realized it didn't matter. He was gaining. He was growing. He has never done things in the "traditional" way ever. Not once in his whole life. I needed to trust him that he could eat and grow and be healthy. I needed to trust myself that I was doing everything in my power to help him do that.
We know there are medical reasons for why X doesn't gain and grow as well as other kids. Some of it is because his body simply burns more calories for a few reasons. Some of it is because his metabolism is very high. Some of it is because of some some gastrointestinal problems that are being addressed. Some of it is because of a hernia. Some of it is hereditary to have a tall, slim build (his older brother has the same body type). There are reasons why. Most of them, we can't change. The ones we can help him with are being addressed.
In the past 6 months, I've stopped tracking and obsessing over calories, intake and weight. A funny thing happened when I stopped: X started eating more, gained better and grew more consistently. He's still tiny. It's just who he is. I've learned to let go. I trust him. As a result, he trusts me more. We've bonded much better. His feedings are a relaxed, happy, and playful time. If he only drinks 1 oz, then he only drinks 1 oz. He'll drink more later. It's ok. It's more about the quality of his feedings than the quantity he consumes. It doesn't mean I don't keep an eye on his overall pattern of gaining and growing so that I know if he's headed for trouble. I just don't track and obsess over it anymore.
To me, X is in no way failing to thrive. Sure, his weight gain is slow. FTT kids tend to not have gained 3 times their birth weight by age 1. X has gained 17 times his birth weight!
Most kids who are FTT also don't interact with their surroundings. They won't make eye contact. They're irritable. They're severely developmentally delayed with no other explanation as to why. X is nothing like that! He's very interactive, maintains eye contact very well, is happy and well adjusted, and his developmental delays are due to his IVH and the resulting complications from that.
Many FTT children end up on feeding tubes. For that matter, many preemies and special needs kids end up on feeding tubes. It's due to a variety of reasons, but is a very personal choice parents must make when weighing the benefit vs. risk for their child.
One thing I've learned as we've established X's care team is that some providers don't believe in a child's ability to work through struggles. They want to cave too quickly and jump to the "easy" fix. All my mom friends who have tube-fed kids will attest to the fact that a feeding tube is NOT a cure-all. It comes with it's own set of complications and worries.
At this exact point is X's journey, a feeding tube isn't something that's needed or even being discussed. We and his team fully believe that in his case, he's capable of sustaining his nutritional needs and growth with the right support and the right medical food. However, we're open to the discussion of a feeding tube if at any point it becomes necessary and is in X's best interest.
As we've learned more about FTT, X's reasons for that diagnosis, and as I've taken a step back and trusted that X could do this...he HAS. He's making progress. That progress is a team effort. X is seen by over 20 providers who help us keep him on track. Among these, he sees Occupational Therapy, Physical Therapy, Speech Therapy, Gastroenterology, Surgery, Pediatrics, Developmental Pediatrics, Genetics, Neurology, Psychology and Nutrition. They work together as a team to ensure that X is developing and growing properly on his OWN growth curve. So far, he's doing well. We work diligently to make sure he's receiving proper nutrition and support.
FTT is a difficult diagnosis to work with. There are good days and bad days. There are wonderful gains and devastating losses. Some can be explained; some can't. Every day is different. Through all of it, I keep in mind that it's about quality instead of quantity. Changing my own mindset has changed X's. He can do this! I have faith in him. I believe in him. Although his progress is slow, he's gaining and growing. He's healthy. He's happy. He's thriving and making wonderful progress. He is definitely not failing to thrive!
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