Sunday, March 30, 2008

Charlie's Diet

Lately we've had quite a struggle with Charlie's doctors with regards to her diet. I've always been perfectly confident of my decision to breastfeed Adrian, and now pump for Charlie. But after the constant negativity from Children's, I've been feeling unsure of myself.

This is a little bit of what I've heard from the doctors and nurses at Children's:

"We don't need a parent's consent to give formula because it's not that big of a deal."

"Your milk probably isn't any good because your older son is nursing and taking all the nutrients from it."

"Breastmilk, much moreso than formula, is lacking in many important vitamins and nutrients."

"Breastmilk starts losing nutrition at 6 months, which is why your daughter needs pureed baby food through her tube."

"Breastfed babies are almost always anemic, which is why they need supplemental iron."

"Breastfed babies have to drink more than formula fed babies because the milk doesn't have as many calories."

Now, I know NONE of this is true. So why am I so unsure of myself? I think it's just because I'm in unfamiliar territory. Tube-feeding is new to me and I worry more about Charlie than I did about Adrian. But I did a lot of research and talked to tons of people and I've decided that the doctors at Children's are a bunch of quacks. Not only because of the horrible advice I've gotten about breastmilk (which is bad enough though) but because I just realized about 1 1/2 weeks ago that they've mismanaged Charlie's feeds!

See, Charlie started out a big baby. She's the record-setter in our big-baby-birthin'-family so far at 10 lbs, 9 oz. But no one can expect her to stay at the top of the charts. Charlie isn't going to be a huge child. You can see that by how she's growing in length. She's fallen to about the 25%, which is no surprise since I'm only 5' 1 1/2" myself. But they've insisted on increasing her feeds every week to keep her weight at the top of the charts, even though her height is falling. So what does this mean for Charlie? Before we even realized what was going on, she got so fat she can hardly move. Yup, her PT said that's why she's struggling to do the things she was previously able to, like holding up her head and pushing up on her forearms.

Now, normally big babies aren't a problem. Adrian was gigantic. But he was also a very, very active baby, and very advanced developmentally. Charlie can't work her muscles like other babies can though, so all that milk is literally just going to her fat stores. She can't burn it off.

And they want to add pureed baby food on top of all that milk, while still increasing her feeds by 1 ml/hour per week. She'd probably end up being 40 lbs by a year!

I've taken it upon myself to manage Charlie's feeds alone, with the information I have at hand. I just don't feel like I can trust anyone else to do it now. I realized I can't possibly screw it up as bad as they have.

So here's the new plan:

Charlie gets only breastmilk and I will give her only enough milk to help her grow at an appropriate rate. I will weigh her myself every other week or so to determine if she needs more or less milk.

Wow, that's just rocket science right there.


Jenny said...

I pumped for my special tubey girl for 26 months. I can definitely understand your concerns with the mismanagement of your child's feeding. Katy was fed my milk only for 24 months, started vitamins at 10 months because she was anemic, but I think that was because she didn't get her tube until 10 months and she would NOT eat before that. I was forcing her to take just enough to survive. She only weighed 12 lbs when she got her tube at 10 months, but by 2 years old she was 25 lbs, which is what she is now at 4 1/2. She was obese when she was 2 because she was only 26 inches tall. She never got sick until after I weaned her at 3 years old, but now she gets sick all the time. I would give her my milk again to help her immune system, but she is allergic to eggs and I eat them and really can't give them up right now because I am allergic milk and soy. Please know that you know what is right. Do your research get support and trust your instincts. please feel free to e-mail me at

Karin said...

i followed your link from the BD group. My little one got her tube at 7 weeks and I pumped for 13 months beyond that. All a baby needs during the entire first year is mamamilk. Your gut instincts are right. I also felt so lost because I had no idea how much a human milk fed baby gets (I was also still nursing my toddler and had not ever had this much experience pumping). I found a couple of other moms who exclusively pumped and found that a baby only needs about 32 oz per day of milk. That's a healthy baby for the *entire* first year. The volume need doesn't change. This is nothing related to formula fed babies and that's why none of the "experts" knew it. They only know the numbers for formula fed babies. It had never occurred to me at that point to allow anyone besides myself to be in charge of her food. When they all started making suggestions and asking who was monitoring her food, I always said, "me, who else?" That's what moms are supposed to do, right? As I continue and my child gets older (she's now 2 1/2), I realize that I have to be responsible for my child's nutrition. If it was up to the "experts", she would be on formula and not nearly as healthy as she is now.

One thing that was crucial was to find others like me who had been there and done that. It wasn't easy, but very worth it. Moms who had been successful at pumping exclusively for their children with special needs, and then parents who were successful at preparing BD was so important to me. I don't feel like I need so much support in that area anymore, but just because I've been doing it so long that I feel much more comfortable.

You're following your gut and that is important. The dr's don't get that instinct for your daughter,only you can. If you ever have any questions or just want to email, please come contact me on my blog and leave a message. I remember how hard it was at about 6 months when they started pressuring me to put other stuff in her tube. I just wished I had someone to talk to who actually had a clue about what they were doing.