Friday, March 5, 2010

Good and Mad

Good News:

Little Stella does not need surgery.

Mad news:

We liked the nurse. She actually seemed like someone that I could see myself hanging out with, oddly enough- but the response she gave us was completely unlike what I was expecting. My baby's head is wonky. I know what a "normal" head looks like. It looks like my son's head, baby Arden's cute head, Mindi's head... She had a paper with head illustrations all over it- showing the range of malformation from 0 (no malformation) to 3 (very malformed). Looking at the paper, I immediaely saw Stella's head depicted in the drawings. It looked like the #2 head. The front, the back, the uneven ear placement. They were all 2s. The nurse did some palpation. She looked at Stella's head from all angles. It was a complete head exam. She asked us where we felt she fit into the chart. "2" we both said. "Oh, ok... I would agree that the ears are a 2."

Do you guys sense a "but" here?

She decided that the front and back views were simply 1's, and proceeded to mark it on the chart as the final say. Now, do I want my child to register as a 2? No, of course not. Do I want to feel justified as her mother that I am not simply overanalyzing my child's appearance? Yes. I don't know. On one hand, I feel the need to beat myself up because the expert felt that I was mistaken in my observations. On the other hand, I feel angry because I am the one that stares at her head all day. I am the one that has examined every crease, fold, and soft spot on her entire body. I know the entire map that is her body and I am the one that has watched her head grow more and more misshapen with every passing week. I voiced my opinion. Mindi voiced her opinion. The nurse kept mentioning positional plagiocephaly. If you don't feel like following the link, it is the flat head that can occur from an infant lying on their back for extended periods of time. I firmly believe that this is NOT the cause of her flat head. It did not start in the back, it started in the front, and I know that she has never slept on the upper right side of her forehead... (can you picture that?!) I shared that bit with the nurse. In fact, before we went in, I made a pact with myself that I would speak up if I dissagreed. It is so hard for me (as I am sure it is for many others) to "stand up" against the "authority" that is "the Dr. or the Nurse". I did speak up. I don't know if I was heard or not. I couldn't tell really. It was strange.

She told us that positional plagiocephaly typically remedies itself between 4 and 6 months, or, at least there is a marked improvement. She told us that we could "watch and wait", and if we felt that it was not getting better, or was getting worse, we could get her reevaluated around 6months. We opted to make the follow up appointment while we were there so that we would have it. We figured we could always cancel if we needed to.

Honestly, I do not expect it to improve. I do not believe that it is positional plagiocephaly. I am not sure that it will get worse, but I do not think it will get better. That is just my "mommy gut feeling".

Now, all we can do is wait for her follow up appointment in late May. If her head does not improve, I am going to push like hell for a helmet.

I am going to finish off this gloomy post on the bright side, however, and reiterate that

My baby doesn't need surgery! Yay!!
smile for the camera sweetie- yeh, just like that!

8 comments:

  1. she's beautiful :) she looks bigger. don't know if it's just the angle. yah for no surgery! focus on that :)

    ReplyDelete
  2. So glad to hear about the not needing surgery part, but I'm sorry to hear about the not being heard part. I love that she still has that red hair!

    ReplyDelete
  3. it's good news about not needing the surgery. Can you get a second opinion while you wait for your follow-up exam and her skull is still soft to a degree.

    ReplyDelete
  4. Definitely good but definitely mad! I also find it hard to stick up to medical personnel. Let's hope this nurse is right on!

    ReplyDelete
  5. What a cutie patootie! I'm so glad she doesn't need surgery, but I would also be mad at having to argue with the nurse. I'll be hoping her little head rounds itself out on its own.

    ReplyDelete
  6. how frustrating.....

    i'm so glad she does not need surgery. here's to hoping it does correct itself.

    way to go on voicing your opinion though mama!!! at least you have that appt booked, just in case.

    xo

    ReplyDelete
  7. I was afraid of an appt like this... I really had to push for the specialist appt. No one seemed to really listen to me. Plus, hand measurements are notoriously wrong - we got the most accurate measurements via a scanner. I would encourage you to be aggressive - being in a helmet sooner vs later would give you the best results in the shortest amount of time. It took a few weeks from the time we met with the specialist until when we got the helmet, causing weeks missed of optimal growth. I am super happy there is no need for surgery, but I would really push for an appt with the specialist, not a nurse. Even our specialist said Mr. B's head would likely round out on his own by adulthood, but that was not enough for me. My mommy gut said otherwise and it sounds like yours does too. Go look at that yahoo group I told you about & compare numbers with the people there - might help too :) Its amazing what one doc says is in the normal range, another will say it's severe. All agree a helmet works best during times of major growth, which is now. The ears not aligning properly can lead to problems later with glasses/hats and vision can be affected with plagio. Not trying to scare you, just validating that mommy gut of yours! It annoys me that docs aren't more aggressive about plagio!!

    ReplyDelete
  8. You know I don't know a lot about babies, well pretty much nothing, but I think your baby looks pretty perfect to me.

    ReplyDelete

You know I love to hear from you- thanks for leaving a comment!

LinkWithin

Blog Widget by LinkWithin