William - updates

William showing me that he is 1

We had a medical filled week this past week while William had a few follow up appointments and his 12 month (adjusted age) NICU follow up appointment.  We met with Dr. Nasir, his GI, on Tuesday to see if William has gained enough weight to justify removing his g-button.  We haven't had to use the g-button for about 2 months for food and have used it sparingly for medicine in the past 2 months.  At his 1 year check-up, we were told by Dr. Coln (pediatric surgeon) that he was okay with the g-button being removed as long as Dr. Nasir agreed.  After talking, they decided that because William was dropping below the 3rd percentile on the growth chart, he needed to keep it in just in case.

With hopeful hearts, William was weighed and he hasn't gained any weight since March.  (He has had weeks of gain, but also weeks of loss; so overall it's even).  There is a LARGE amount of brain development that takes place the first two years of life; and to help that development, you need fat and calories.  William was following his own little growth curve until his Fundo in February; ever since the Fundo, he's continued to drop on both his growth curve and the "master" curve used to gage all kids' growth.

The solution - supplemental tube feeds.  He needs to get (for right now at least) 4 oz of high calorie pediatric formula through the g-button throughout the day.  Thankfully he doesn't need this overnight because he is now lying flat and out of his tucker sling - not quite sure how to keep a 1 year old still all night so the feeding tube doesn't come out or get tangled!  (It's concerning enough with the apnea monitor cord, I'm terrified he'll wrap it around his neck somehow)  He can't handle bolus feeds (a "normal" volume of food through the g-button - basically pushing food through at the same volume he eats) through the g-button, so we are currently trying to ease him into feeds by giving him 1 oz over a 30-40 minute time frame.  We're also trying not to overwhelm his system and are gradually increasing the ounces each day.  We're up to 2 oz now and will try 3 this weekend.

We both know this is not a huge setback for William, but it is a setback none-the-less and it's hard to have those pop up.  There isn't anything we wouldn't do for him, and to quote Dr. Nasir "...we have a door per se into his stomach, we need to use it"  We are grateful for the hundredth time that he has the g-button as the alternative is not as pleasant.

William received good news on Tuesday as well!  He is cognitively a 12 month old (his adjusted age) and is doing wonderfully well!  He is slightly delayed regarding some motor skills - specifically walking and abdominal strength.  He is roughly a 10 month old when it comes to those skill sets.  This isn't a surprise as he couldn't breathe enough to roll over until he was 7 months old, and still struggled with breathing to not allow him to get to crawling until he was 10 months old.  All in all, it's not something anyone is worried about; just something to be aware of for his development.

Overall, he is doing extremely well considering what monumental challenges he had to overcome his first year of life.  He is a fighter, he is a miracle.