Thursday, March 22, 2012

Our Story- Kate and Brenna


Day after she was born
My husband and I thought we were done with having children after having two beautiful, healthy babies, our son Alex and our daughter Cecelia. When Cece was 18 months old I found out I was pregnant again, and to be honest I was upset. My little girl was still very much a baby in my eyes, my son had just started to really come into his own as far as being a big brother, we were just getting our routine down as parents of two kids. Would I be able to handle three kids under 5? Would I be patient enough, would I be able to give each the attention and love that they deserved, would we be able to afford it, how would we make it all work?

My first trimester was miserable. I was sick, tired, guilt-ridden about not being able to devote the kind of attention to my babies that I felt they needed, I was worried and sad. When I started feeling better it was as though the clouds began to lift, and I began to feel hopeful and excited about adding to our family. We could do this. I began to think of baby names, and plan the girls room.


First set of casts
Since we decided to forgo any special testing for genetic abnormalities, as we had with our other babies, my obstetrician had me go for a level II ultrasound for the 18 week anatomy scan just to get a good look at the baby. During the test the technician became quiet, the chit-chat slowed, and I knew there was something up. When she was done she asked us to wait to speak to the neonatologist, and she left the room. The wait was a long one. When the doctor came in, he sat next to me and said 'we saw a couple of things that we need to talk about.' He told us that the baby had two cysts on her brain, which are fairly common and typically disappear before birth and do not pose a threat developmentally, and that she had bilateral club feet. Together, he told us, they are two markers for something called Trisomy 18. When I heard those words, everything inside deflated. I felt as though this was some sort of karma for not being immediately happy about my pregnancy, I felt as though it was my fault. What I didn't feel, however, was dread about the club feet diagnosis. When you are presented with two options, one of which is a terrible condition that does not support life, and the other is a very treatable condition that will require some adjustment of how you imagine your baby's immediate future, the impact of the latter seems so preferable that you pray for a club feet diagnosis, and only that.

After third set of casts
We opted against having an amniocentesis to determine the presence of T18 or not and decided to wait it out. It was a very long wait. Bedrest for other complications, a potential problem with the baby's kidneys that resolved itself literally a week before I gave birth, continued guilt over not being able to do things with my kids that we love to do in the summer, twice-weekly non stress tests and biophysical profiles, and our baby finally arrived. I cannot explain to you the relief I felt when I saw those crooked little feet and a perfectly healthy baby girl. It was amazing.

Brenna had her first casts put on when she was 10 days old, and had weekly cast changes for the next 8 weeks. She had a tenotomy done on both legs in January at Children's Hospital, and she has been in the Ponsetti brace for the last 3 months.

The casts... Well, they weren't a whole lot of fun. She didn't seem to care about them much once they were on (she did scream like a banshee during every. single. cast change.) but they made things a little more tricky as far as dressing her, not getting poop on them, snuggling her, she kicked out of a pair over Thanksgiving weekend the little monkey, but by and large they were okay.

The surgery was horrible for us as parents. It was done in the hospital under a local anesthetic and was very quick, but man. Even though it was a minor surgery seeing your baby being carried away by the nurse into the OR is no fun. The rest of that day was awful for her, and again for us, and then she bounced back very quickly the day after.
Yesterday!

The brace has been my least favorite (for lack of a better word) part of this whole experience. My girl loves to kick her chubby little legs, and we have had a lot of issues with her kicking out of her boots, red spots on her heels, and lack of sleep. On the upside, she is much easier to hold and dress in the brace than she was in the casts. Her orthopedic doctor just told us last week we could go down to 18 hours a day, and I immediately put her in a footed outfit and enjoyed those 6 hours without the brace or boots on. (Funny what you took for granted before, isn't it?)

To any parent who has been told their baby has club feet, I would say this: stay positive. Get through one issue and then deal with the next, don't worry about all of the steps right away. Be thankful that your baby is healthy, focus on that. This is a big deal, but it is treatable. Do your research, know your options, educate yourself, be your baby's advocate. And stock up on onsies, because getting pants over those casts is a pain in the neck.

Thanks to Kate for contributing to the Our Story feature for Faith Feet & Love. If you've got a story about dealing with clubfeet, or just want to share success stories, tips, or pictures, please contact us for more details.

3 comments:

  1. Kate - thanks for sharing your story with us. I was struck at just how similar your story is to ours. It brings back a lot of terrifying memories! But I love the picture from yesterday!

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  2. Beautiful story, Kate. It's wonderful how you are able to stay so positive, and you are absolutely right that we are all thankful for healthy babies. Brenna is adorable!

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  3. So glad I've connected with Kate & found this blog! A new mommy with a 2 month old going through treatment for bilateral clubfoot - I've found so many answers through other blogs.

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