Charlie's Blog: Charlie's Weight Gain

Hey everyone! Charlie just had a visit with his GI doctor a few days ago so I thought I'd give you an update :) First off- he's doing well! He's weighing in at 16lb8oz and 26.75in. This still puts him below 50th percentile for weight/length ratio but he's gaining weight and that's good!

One of the things I neglected to mention in my earlier post was WHY CF patients have such trouble gaining weight although I touched on a few of the reasons. First of all, CF patients have a very hard time absorbing fat- if you can't digest fat then you can't gain it, right? This is where the enzymes (which break down fats and proteins) come in handy....not all CF patients need these, but Charlie is one of those that does (he is pancreatic insufficient). Also, CF patients spend a lot of time and energy producing mucus, breaking down mucus, coughing up mucus, and the like- all this extra activity expends a lot of calories which then burns up some of the fat they're able to digest.

I thought maybe I'd expand upon Charlie's weight gain journey a bit. Ever since he was born Charlie has struggled with weight gain- although thankfully not with eating! Charlie was born 9lb3oz and then lost 1lb after he was born, since this was higher than the normal amount lost by most newborns they kept him in the hospital an extra day and had me supplement with formula until his weight was up higher (this was before we knew about Charlie's diagnosis). By the time we left the hospital my milk had finally come in so I went to exclusively breastfeeding once we got home.

Before Charlie's diagnosis he was just constantly hungry, I could breastfeed him for an hour and then pull him off and he'd cry until he was latched back on. It was so frustrating, we would think "he can't possibly still be hungry!" but could never figure out why he was upset. He's a pretty happy baby in general so it wasn't all day every day but sometimes there were just days where he wasn't happy at ALL unless he was breastfeeding. He also would pass mucus in his stools which puzzled us. Once he was diagnosed (at 2 weeks) it explained a lot!

Eventually around 2-3months we got to the point where we realized that I just wasn't making enough milk on my own and we needed to start supplementing. This was a really hard thing for me- one of the things I had always been determined to do was breastfeed for as long as possible and already having to supplement after only a few months was so frustrating. In retrospect I'm not sure why it bothered me so much at first however it definitely was what was best for Charlie. I would feed him and then we'd be astonished at how much formula he'd chug down even after breastfeeding. We met with the feeding team at Hartford Hospital who were fabulous- they checked to make sure he was breastfeeding correctly and were able to determine how much breastmilk he was getting per feed (only 2 oz) and gave me some tips for making more. The routine that we did for a while was for me to breastfeed, formula feed, then pump afterwards- and I also took More Milk capsules. This brought my supply up to 4oz MAX, and it was a LOT of work for not much reward in my opinion so I eventually decided to nix all the extra pumping and capsules. Charlie would eat about every 1.5hrs and that feeding routine took about 45 minutes so I hardly got a break from feeding him during the day! Now I breastfeed and then formula feed until he's full- I only make about 2oz per feed but I figure some breastmilk is better than NO breastmilk and this way I still have my sanity. And thankfully he can go 2-3hours between feeds during the day now.

Charlie is a long baby for sure, but definitely not a pudgy baby. Looking back at pictures I think how skinny he used to be, although he never seemed "super skinny" at the time. I mean I knew he didn't have those baby rolls that a lot of little ones get but he was so long that I never really thought of him as thin for some reason. Now a days he's got a little buddha belly and chubby little baby wrists that are oh so cute :)

(5 weeks and 3 months respectively)

And here he is now at 4 months (almost 5)

Charlie's almost 5 months old and he eats 5-7oz about 6-8x per day, and the formula he eats is made to have extra calories per ounce. He also eats some solid food- at this time it's just rice cereal twice per day and applesauce with his enzymes. Eventually we will start adding in more variety of foods and sneaking in butter and oil into them to make them higher in fat. His doctors want to see him gain about 1oz/day, even with all those extra calories he still doesn't hit that target all the time, but he's close.

Here's how Charlie's weight has progressed since he was born. I don't have the weight from EVERY weigh in he's had since birth (he gets them weekly) since I didn't start keeping track until more recently.

8/28/10: Birthday! 9lb3oz, 21 in

8/31/10: 8lb 3oz

9/16/10: 9lb 1oz, 21.9in

9/22/10: 9lb 5oz, 22.5in

9/28/10: 9lb 9oz, 22.4in

11/3/10: 11lb 4oz, 24in

12/7/10: 13lb 4oz, 25.4in

1/5/11: 15lb 1oz: 26.25in

1/13/11: 16.4oz: 26.75in

1/24/11: 16.8oz, 26.75in

So he's been gaining well, although he hasn't doubled his birthweight quite yet! His GI doctor was happy with his progress and she upped his dosages of Prilosec and Erythromycin to reflect the higher weight he's at.

One of the things you might notice about Charlie is how long he is, he's pretty consistently in the >90th percentile for length/age. Something we wondered about a lot was "well maybe he's MEANT to be skinny and lanky...we have a lot of lanky guys in our family...why should we force him to gain weight if he's not meant to be that weight?". The answer is two fold. First of all, who knows what he's 'meant' to be....maybe he's meant to be long and big, we just think he's supposed to be lanky because the CF makes him skinny. Who knows, right? The second is that our CF Team doesn't really care what he's "meant" to be- they want to go against nature to get him in the 50th percentile because it gives him the best chance at being healthy. I mentioned before that CF patients in the 50th percentile have better lung function (and thus, less lung damange) than those that aren't, as well as having longer life spans- but maintaining this weight is also good in case of illness. You know how you and I tend to lose weight when we get sick? Well it's even worse for CF patients, they lose weight they don't really have to spare, so a higher weight when healthy can really help when they get sick.

Sooo that's where Charlie is at now! Here's a few photo's and a video :)

Charlie and his Daddy ready for winter!