Throughout my pregnancy, I had a TON of ultrasounds and 2 MRIs. There have been MANY pictures taken of Cedar prior to her arrival. Throughout all of these, doctors and ultrasound techs assured me that Cedar did not have clubfeet. Many kids with spina bifida are also born with clubfeet--just one of those things. I was relieved to find out that she did NOT have clubfeet, since that would just be one more thing to deal with.
At these ultrasounds, many doctors also mentioned that she was in breech position (the entire pregnancy), and often commented on how her feet were up by her head, like she was folded in half. We all laughed at her flexibility and moved on. Regarding her breech position, doctors would often say, "Well luckily you are having a c-section, so we don't have to worry that she is breech!" That is all anyone said.
When Cedar was born, we were quite shocked when we saw her feet. As you read in his account of Cedar's birth, Daniel cried. When he showed me pictures of her feet, I couldn't believe it. They were bent back to her shins, and one was clearly turned to the side as well. They didn't look like clubfeet, but obviously there was a LOT wrong with them. I was very frustrated because we had not been warned at ALL about her feet and it was a frustrating surprise.
While in the NICU, a physical therapist came a few times and showed us some stretches to help her feet and to relax her hips (she constantly wanted to still have her legs in the air), and we did them three times a day, even as we brought her home. We did not see an actual orthopedic doctor in the hospital, and we made an appointment at Shriners for the Thursday after she got home. I had heard stories of other SB kids who had the same condition, and were able to correct it with 6 months or so of physical therapy. I was hoping going into our appointment that this was the case!
That Thursday, we went to Shriners to see Dr. Hennesey, the same doctor who treated Miles' clubfoot. It was nice--and not nice--to see everybody again! After examining Cedar, she informed us that she basically had the opposite of clubfoot, and it was called calcaneovalgus foot. She also informed us that Cedar has extremely shallow hips, and her legs were not sitting in her hip sockets. Essentially, she had dislocated hips. We were informed that by the end of the appointment that day, Cedar would have casts on both legs and a hip harness. My dreams of just 6 months of physical therapy were dashed.
I was also pretty frustrated, because I found out from multiple doctors that these issues (the CV foot and the hip dysplasia) are common problems for babies stuck in breech for a long time, specifically babies who have their feet by their head. I wondered why no doctor had mentioned this BEFORE her birth, or why they did not make any attempt to flip her earlier on when it would have still been possible to change her position. I still plan on asking these questions at my six-week postpartum appointment.
After her hip ultrasound, the doctor told us that she saw no improvement in Cedar's hip situation after a week in the harness. I was surprised that they were expecting to see progress so quickly, but apparently that is how it works. They informed me that the hip harness can actually do more harm than good if it stays on when it's not working. So, they decided to give it one more week, and then if there was still no improvement, they would take her out of the harness.
After looking at the results of her hip ultrasound, the doctors decided the hip harness was not working for her. They decided that she should not wear it anymore. This basically means that Cedar will just have dislocated hips. I thought this sounded painful, but they assured me that it doesn't bother her at all. When she is six months old, we will revisit the issue and talk about surgical options.
The doctors also decided to give Cedar one week of cast freedom while they made her some AFO braces. Usually these braces are given to kids who are learning to walk, in order to give their ankles and sometimes calves more support. For her, they were hoping the AFOs would be a more lightweight option than the Ponsetti brace (what Miles wears at night for his clubfoot), and would hold her feet in the correct position that the casting achieved.
So, for a week Cedar got to enjoy wonderful foot freedom! We enjoyed putting her in the clothes, pants, and pajamas she couldn't wear with her casts and hip harness!
As the week went on, I started to get concerned. Cedar's feet started looking an awful lot like they did before she was casted. I sent these pictures to the doctor, but she didn't seem too concerned. I'll admit, I was definitely worried:
When I went over to the orthotics people to cancel my appointment (since her shoes weren't ready), they said they didn't know what I was talking about--that her AFOs were absolutely ready. Say what?
Please tell me they had not just recasted my baby for no reason. After talking to the doctors again, the orthotics people told me the doctors said they recasted because her feet needed it, not because the AFOs weren't ready. Obviously they had told me something completely different, but either way she needed to be casted again so I let it go.
She has to wear socks with the AFOs, but when the orthotics people brought in a pair of their smallest socks, they completely drowned her feet! So, another doctor came up with the idea to use the tube stuff they put under casts as socks, because you can just cut it to size. So, that's mainly what we have been doing.
They also recommended that she wear shoes over the AFOs when possible, because they can provide more stability and hold the AFOs in their position. This has been a bit difficult because they made the AFOs a bit longer than her toes so that she can grow into them. I therefore have to put larger shoes on her so the brace fits into the shoe. This causes the rest of the shoe to be really loose on her, providing little support. Not sure yet what to do about that part:
At these ultrasounds, many doctors also mentioned that she was in breech position (the entire pregnancy), and often commented on how her feet were up by her head, like she was folded in half. We all laughed at her flexibility and moved on. Regarding her breech position, doctors would often say, "Well luckily you are having a c-section, so we don't have to worry that she is breech!" That is all anyone said.
When Cedar was born, we were quite shocked when we saw her feet. As you read in his account of Cedar's birth, Daniel cried. When he showed me pictures of her feet, I couldn't believe it. They were bent back to her shins, and one was clearly turned to the side as well. They didn't look like clubfeet, but obviously there was a LOT wrong with them. I was very frustrated because we had not been warned at ALL about her feet and it was a frustrating surprise.
While in the NICU, a physical therapist came a few times and showed us some stretches to help her feet and to relax her hips (she constantly wanted to still have her legs in the air), and we did them three times a day, even as we brought her home. We did not see an actual orthopedic doctor in the hospital, and we made an appointment at Shriners for the Thursday after she got home. I had heard stories of other SB kids who had the same condition, and were able to correct it with 6 months or so of physical therapy. I was hoping going into our appointment that this was the case!
That Thursday, we went to Shriners to see Dr. Hennesey, the same doctor who treated Miles' clubfoot. It was nice--and not nice--to see everybody again! After examining Cedar, she informed us that she basically had the opposite of clubfoot, and it was called calcaneovalgus foot. She also informed us that Cedar has extremely shallow hips, and her legs were not sitting in her hip sockets. Essentially, she had dislocated hips. We were informed that by the end of the appointment that day, Cedar would have casts on both legs and a hip harness. My dreams of just 6 months of physical therapy were dashed.
I was also pretty frustrated, because I found out from multiple doctors that these issues (the CV foot and the hip dysplasia) are common problems for babies stuck in breech for a long time, specifically babies who have their feet by their head. I wondered why no doctor had mentioned this BEFORE her birth, or why they did not make any attempt to flip her earlier on when it would have still been possible to change her position. I still plan on asking these questions at my six-week postpartum appointment.
We said goodbye to Cedar's beautiful feet as we knew them:
The doctors decided to give her casts from the knee-down, instead of thigh-down, like you would do for clubfoot. The doctors could not stop gushing over how "cute" her casts were. I was grateful that they were only knee-down, because as I knew from experience with Miles, the thigh-down casts like to get poop on them during diaper changes!
Getting a hip ultrasound:
The finished product with her knee-down casts, which are hidden under the hip harness:
Cedar rocking her new look at her first spina bifida clinic at Primary Children's Hospital:
Still cute, harness and all!
A week later (after dealing with a very cranky baby), we went back to Shriners to have her casts changed out.
Getting the casts removed:
Definite Progress:
Another hip ultrasound:
Waiting for the doctor, post-bath:
After her hip ultrasound, the doctor told us that she saw no improvement in Cedar's hip situation after a week in the harness. I was surprised that they were expecting to see progress so quickly, but apparently that is how it works. They informed me that the hip harness can actually do more harm than good if it stays on when it's not working. So, they decided to give it one more week, and then if there was still no improvement, they would take her out of the harness.
Cute pictures of Cedar in her harness and casts:
A week later, we came back again. First, they removed the casts.
Then, they did another hip ultrasound:
Lots of waiting to see the doctors:
After looking at the results of her hip ultrasound, the doctors decided the hip harness was not working for her. They decided that she should not wear it anymore. This basically means that Cedar will just have dislocated hips. I thought this sounded painful, but they assured me that it doesn't bother her at all. When she is six months old, we will revisit the issue and talk about surgical options.
The doctors also decided to give Cedar one week of cast freedom while they made her some AFO braces. Usually these braces are given to kids who are learning to walk, in order to give their ankles and sometimes calves more support. For her, they were hoping the AFOs would be a more lightweight option than the Ponsetti brace (what Miles wears at night for his clubfoot), and would hold her feet in the correct position that the casting achieved.
Getting fitted for her AFOs:
So, for a week Cedar got to enjoy wonderful foot freedom! We enjoyed putting her in the clothes, pants, and pajamas she couldn't wear with her casts and hip harness!
When your older brother asks to hold you and then gets distracted by Netflix:
First time wearing shoes...the only ones that would stay on her tiny feet:
Real pajamas!!
My tiny girlfriend in my giant bed:
As the week went on, I started to get concerned. Cedar's feet started looking an awful lot like they did before she was casted. I sent these pictures to the doctor, but she didn't seem too concerned. I'll admit, I was definitely worried:
At our weekly Thursday appointment, the ortho doctors told me that the AFOs were not quite done yet, and so they would have to cast her for another week. I was so bummed.
Getting recasted:
When I went over to the orthotics people to cancel my appointment (since her shoes weren't ready), they said they didn't know what I was talking about--that her AFOs were absolutely ready. Say what?
Please tell me they had not just recasted my baby for no reason. After talking to the doctors again, the orthotics people told me the doctors said they recasted because her feet needed it, not because the AFOs weren't ready. Obviously they had told me something completely different, but either way she needed to be casted again so I let it go.
Back in casts:
The following Thursday, I was SO excited to get this girl out of casts and into her cute little AFOs! Shriners told me that these would be the smallest AFOs they had ever made. This time, her feet looked much better and she was able to get her braces!
Removing the casts for the last time:
Enjoying some foot freedom while we wait for the AFOs to be fitted just right:
The cutest little braces you ever did see!
She has to wear socks with the AFOs, but when the orthotics people brought in a pair of their smallest socks, they completely drowned her feet! So, another doctor came up with the idea to use the tube stuff they put under casts as socks, because you can just cut it to size. So, that's mainly what we have been doing.
They also recommended that she wear shoes over the AFOs when possible, because they can provide more stability and hold the AFOs in their position. This has been a bit difficult because they made the AFOs a bit longer than her toes so that she can grow into them. I therefore have to put larger shoes on her so the brace fits into the shoe. This causes the rest of the shoe to be really loose on her, providing little support. Not sure yet what to do about that part:
Attempting some different shoes on her:
They make her look like she has clown feet because they are so big!
We have now been cleared to come back in a month, and this week was our first week since Cedar's birth (six weeks ago) that we have NO DOCTORS APPOINTMENTS! So exciting!! Hopefully in a month her Shriners doctors will be pleased with her progress!
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