Today was a big success. After two months of weight loss, infection, hospitalization, and near breakdowns on my part, we finally got some tangible evidence that our vigilance against CF is again paying off. Some of the story I have to preface, as I don't really feel all parties understand why or how we approach some aspects of J's care.
Check out the pic of his growth chart. At his first appointment at Cooks, Jackson was skidding along the bottom of the charts, not growing in either length of weight. We tried more frequent feedings, increasing my breastmilk supply, still he didn't gain. Flatline. In late May I sat with his dietitian and talked about supplementing my breastmilk with some powdered formula- just enough to put more calories into him, at three feedings a day. I was an avid breastfeeding advocate, teaching classes at my local WIC office. It was HARD for me to do, but I knew we needed to take a next step. Let me also say I had an incredible support network, not a single doctor, specialist, friend, or family member ever even hinted that I should stop trying to nurse. Jackson immediately began to climb the growth charts. After a couple of months, his little old man muscly legs turned into sweet round cherub chub. By August he tipped the scales, clocking in at the 90th percentile for length and the 75th for weight. We were all positively basking in it every time somebody said "he doesn't look like a CF baby!"
When the infection that ultimately hospitalized him set in, he lost over a pound, and quit growing lengthwise. All of his graph plots steadily declined. We knew that would happen if he got sick, which is why we are so intense about keeping his weight up when he's healthy. He needs some wiggle room, if you will. And body mass correlates directly to lung function, so we're not giving an inch on our intense feeding. It's not dangerous or tragic that he lost weight, but it's also not an acceptable place to stay. I want my son to reach his maximum growth potential. I don't want him to be healthy "for a CF kid". I want him to be HEALTHY, period. I'm not going to let one rebellious protein determine everything. We are going to get back where we were, at the top of the charts, and maintain a 'healthy for anybody' BMI, height, and weight.
I have to explain my motivation, because sadly, it's not met with unanimous support. I have had some great exchange with other CF mamas about getting extra calories into our kiddos, and believe me, even with a one as robust as J, it can be a challenge. Some of the things we do- add heavy cream or half and half to food or drink, add coconut oil, flavored fish oil, and olive oil wherever possible. Bacon. Nutella. High calorie formula (for those of us that use formula). We still get in all the healthiness of fruits and veggies, and keep almost 100% organic. J's recent love affair with bacon has raised some eyebrows. Mostly I say, bugger off, you don't know what you're talking about and I do. I've been here since the beginning, I've done the math, I know that at 8 months old, I have to get 1500 to 1800 calories into him EVERY DAY to get him to grow and gain normally. That's more than I eat in a day. And he doesn't eat MORE than other babies, usually, so that big number has to be fit into little portions. It's hard, unending work. I also want to point out, the unhealthy effects of excess fat in a diet don't affect Jackson. To his body, it's not excess, it's just enough. I'm not giving my baby a coronary, so relax. It's kind of astounding that it takes that much to sustain him, so I understand that not everyone is going to comprehend it. The difficult part is when I get less than awesome support from fellow CF parents. AT that point I try hard to understand that even though they work every bit as hard, not all are as successful in the venture to gain, and it may be difficult for them to watch someone else do it more easily. I can understand that.
The moral of the story, kids, is that doing some completely counter-intuitive things is our key to health. IF you don't understand, or are curious, ask me why we do it! I won't be offended, and I'll TRY not to talk your ear off. Until then, let my baby eat bacon in his applesauce, and dip his fries in olive oil mayo, in peace.
I post today in celebration. Jackson has been cleared to go six weeks until our next clinic check up. Love and light.