Saturday, May 26, 2012

Little Riot Girl Pt 2

20 weeks to 24 went pretty well.
Other than some awful morning sickness in the very start things had gone okay and the pregnancy had not been overtly bad.
I was a little concerned how nursing my Rebel girl and being pregnant would good. (And honestly, that should be a whole other blog post) but health wise it did not appear to be affecting me or Riot.
I was insanely tied some days, but eh, I'm insanely tired some days when I'm not pregnant. :-)

We went to our 24 week ultrasound to get the rest of her measurements. It was taking awhile without a lot of talking and I was started to get concerned that something was wrong.

The ultrasound tech kind of looked over and said, "Your baby has clubfoot affecting both feet." I had heard of clubfoot before. I was, of course, a little crushed and concerned. She said, it's not a big deal and it is pretty easily corrected. Even that one of the girls that worked with her was born with two clubfeet. However, it can be linked to other issues and that is why they were trying to get a better look at some things.

We had still not seen her face and we wanted to rule out cleft palate for sure. Knowing there was one genetic defect was bad enough without having to have the concern that there could be more. I wasn't sure how to feel or what to think at that point.

For the most part we were told that everything they could see was checking out okay. They were able to confirm she had all her fingers and all her toes (and no extra) they were able to see that the cord had the proper  chambers, the heart the proper chambers, the brain checked out etc etc. She looked okay other than the feet but there were still a few things we needed to check out and she was not cooperating. (Little Riot)

We were told the doctor would come in and talk to us. We waited.
And waited. I was getting anxious and panic'y.

I was trying to tell myself, it wasn't a big deal. Things would be fine. No big deal. It was just clubfoot, you do some casting and bracing and it's over. But the concept and idea of MORE issues was weighing very heavy on me. As well as, what did this mean? How was her first few months going to go? Does this affect my birth choices at all? Will she be whisked away from me after birth? etc etc

The doctor came in and it went exactly like this, no joke

Doctor walks in, goes straight to ultrasound monitor, flips through images:
Doctor: "So your baby has clubfoot (.) (?) " - not sure if it was a statement or question
Me, "Yes, I guess it appears so"
Doctor: "Well, do you know what this means, do you have any questions?"
Me: "Well, yes, I guess probably about a 100"
Doctor: "we will schedule you a follow up"
Doctor hands chart to nurse, walks out.

Super duper frikin awesome.

thank goodness gracious that I had an appointment at my regular OB right after.
I finished checking out. Dropout had to go back to work, things were crazy over there that day and I went to my OB.

I think I added some things into the ultrasound above that I actually didn't know until I met with him.
He was the one to tell me that everything else looked good. He said she had her fingers and toes, and the cord was good, placenta, she had all her organs, the heart looked good, spine looked good, basically that there was no reason to believe it would be anything more than a case of clubfoot.
He said that combined with my quad screening that came up with next to no chance of Down Syndrome, Tri 13/18 and other "big" issue genetic conditions that things looked okay.

That was very reassuring. I'm grateful he was able to at least somewhat calm those fears.

From there we had to meet with the genetic counselor.
That meeting actually went well. The GC was very sweet. Dropout was not able to get off work. (We had been trying to avoid him taking any actual time off so he'd have more with Riot got her) so I brought Erin along who is a friend of mine. She was really sweet to come with me.

The GC said that Clubfoot is actually one of the most common birth defects and normally it is not associated with any other conditions. There's a few things that seem to be connected but because of the quad screening we had pretty much ruled them out. We talked some more about family history. It turns out after this came out that my mother told me my uncle had been born with clubfoot, also Dropout had a mild version that they call "pigeon toed" and a few other mild cases like that apparently ran on both sides of the family.

Therefore, I left pretty confident that there was nothing left to be concerned about. It was just a random case of genetic bilateral clubfoot and she'd just be a little special needs for a little while. No big deal. :-)

I did a lot of research. I needed to prepare myself for what we would be looking at.
What the plan was going to be. How we should treat it. Where are the best doctors?

I found a method of treatment that I really liked called the Ponseti Method. I found a great support group online of moms (and dads) from all over that have used the method. It was nice to find that.

The doctor that was closest to me and recommend was in Atlanta, GA. So I set up a consultation.

We set up a babysitter for Rebel (and Lil, Oh, who's now decided she wants her online nickname to be Punky) and drove down to Atlanta. It wasn't that bad of a drive.

Dr. Schrader kind of looked at us like we were crazy though. He said there was no point in me driving all the way down there because there's a doctor in Knoxville that he knew and trained with and would do a good job.

But hearing that from a recommended doctor did reassure me.
He confirmed what we would be looking at treatment wise.

About 4-14 days after birth we will start a casting process. The casts will go from toes to thighs and will be changed out once a week for about 5-6 weeks. From there she will have a small surgery to clip the Achilles tendon. Then she will go back into a cast for three weeks while that heals. From there she will get special shoes that have a bar that connects across the bottom and she will wear it close to 24 hours a day for about six months. Then she'll wear it less and less until she's only wearing it at night for about 4 years.

Overall, no big deal.

We were joking about ways to make it 'fun". Having someone decorate her casts. Painting them. Making funny t shirts for nosy people in public, lol that sort of thing.

I'm sort of interested in how it is going to challenge some of my 'crunchy' parenting practices.
Babywearing for example is going to be challenging but I'm very interested in trying!
Nursing will be a bit of a challenge with the casts and the bar, and I'm sure co sleeping could prevent a few challenges too... So there's some new fun crunchy challenges I'll have to face parenting a special needs baby.

I'll be sure to update and blog a little more on how all of that goes!

But there's still a little more to come...

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