Wednesday, June 30, 2010

I owe you this much

I know my posts have been few and far between, but I guess I just haven't been in the mood to post. Life has been busy, stressful, perplexing etc. Sometimes I just feel overwhelmed by all the possibilities when it comes to The Chubs and her poor eating habits. We've at least narrowed it down (for the time being) to reflux, but we haven't ruled out additional causes.

Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.

Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.

To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.

There are other tests they are going to run but to be honest, I can't remember all of them.

The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.

Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.

I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.

Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.

We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.


  1. Hang in there girl! Although we don't have food struggles nearly to this degree, I can identify with you.

    Chubs is absolutely adorable. I've been a bad blogger and haven't been by for awhile. Love the new look and can't believe how she's grown.

    Hope you had a great 4th!

  2. I know I am late in commenting, but I read your post shortly after it was published. I have been thinking about you and your Hubs and the Chubs non-stop. It sounds like so much to take in--one day at a time. Keep looking for the positive, as you already do in being thankful for the great things your little darling can already do! Keep up with being proactive and living your life with your family. Lots of hugs!