Sooo... we had an appointment with Will last week at his cerebral palsy clinic. We love the doctor, he's very friendly, thorough, and always takes time to ask about the family and when Nate and I went on our last date. He's also the one who recommended that Will start on Pediasure to gain weight. We go roughly every 4 months to see him.
Will has gained about 2 pounds since we started the Pediasure, putting him a little over 22 lbs. He's really long, though, at about 89 centimeters. One of the typical tracking measures that they do on Will is his length-to-weight ratio. Because he still isn't putting on that much weight, his ratio continued to get more out of whack. He's clearly growing, but its too much 'up' and not enough 'out'.
This was kind of tough to hear, because we've been working so so hard. But its a struggle to get Will to take more than 20-22 ounces of Pediasure by bottle every day, and his intake of solid food (with Benecalorie and cereal for added bulk) is random and inconsistent. We can't force him to eat or drink more.
So Will has 4 months to put on about 5 lbs to get back on the right length-to-weight ratio line. If that doesn't happen, he is going to have to get a surgical gastric feeding tube. Nate and I have been fighting this since the boys left the NICU. But what the doctor explained to me was that Will essentially is malnourished... wow that was sobering to hear too. He's just not getting enough nutrients, and the first 5 years of life is the most important time for brain growth, development and nourishment. He needs the calories to give his brain the best chance to recover and thrive after its traumatic beginnings.
We have now moved from Pediasure to Kid Essentials Boost 1.5 (vanilla with fiber), which actually has 50% more calories than Pediasure. Will is tolerating it well so far, but of course, insurance doesn't cover it. Ouch!
If Will gets the gastric feeding tube, he will continue to take as much food and beverage as possible through his mouth, but we'll start paying more attention to the actual calorie count of what he takes in a day, and then overnight, we'll make up the calorie deficit for the day by giving Will formula right into his stomach - through a pump and tube overnight while he sleeps.
This is not a permanent solution for him. If Will put on a ton of weight over the course of the next year and was taking a lot more by mouth, they would take out the tube. Actually, strangely enough, we could be the ones that take out the gastric tube... if it were to randomly fall out at any time, the hole would actually close up on its own in 2 hours!!
Think good thoughts for Will and his appetite. We're going to need as many well wishes, good thoughts, patience and persistence as we can get.