A blessed Christmas from our holy family to yours!
Wednesday, December 25, 2013
Saturday, December 14, 2013
Boots and Bar!
This is going to be quick, for reasons explained later - but we have the boots and bar!
We got to Phoenix Children's Hospital at 11:30 on Thursday, and shortly afterward Peter's final casts were removed. Dr. Segal checked out his feet and the tenotomy incisions, declared them both good, and wrote out the prescription for the boots & bar.
We went to Hanger - the branch nearest PCH specializes in pediatric orthotics - for the boots and bar. We were shown to an exam room. The orthotist, Ellen, came in and did measurements. I washed and dried Peter's feet, removing the last little bits of gauze. I also applied lotion to his legs and feet as the skin was all flaky from the casts, and put on his new socks.
Ellen brought in the BNB and showed us how to put them on him. It's going to be a while before I get the hang of it!
Later that evening, he got the first bath since the day he was born! He was unsure at first but quickly adjusted.
Unfortunately, Peter hates the brace so far. :( He barely slept at all Thursday night, and he's been very fussy/cranky since then. I am typing this one-handed because he fusses when I'm not holding him. I hope he adjusts soon - I'm trying to get ready for Christmas and am still figuring out babywearing with the brace.
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| I snapped this while we were in the PCH waiting room - first smile caught on camera! |
We got to Phoenix Children's Hospital at 11:30 on Thursday, and shortly afterward Peter's final casts were removed. Dr. Segal checked out his feet and the tenotomy incisions, declared them both good, and wrote out the prescription for the boots & bar.
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| Not a great pic because he wouldn't stop kicking :) |
Ellen brought in the BNB and showed us how to put them on him. It's going to be a while before I get the hang of it!
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| Rocking the BNB |
Later that evening, he got the first bath since the day he was born! He was unsure at first but quickly adjusted.
Unfortunately, Peter hates the brace so far. :( He barely slept at all Thursday night, and he's been very fussy/cranky since then. I am typing this one-handed because he fusses when I'm not holding him. I hope he adjusts soon - I'm trying to get ready for Christmas and am still figuring out babywearing with the brace.
Wednesday, December 11, 2013
Tuesday, December 3, 2013
Boots and Bar: Coming Soon!
Peter is scheduled to get his casts off and receive his boots and bar December 12! Ahhhhh! I'm simultaneously excited and apprehensive about the next stage of this journey.
I went back to work yesterday and Peter did great at his first day of daycare. He was a little clingy last night, but that's okay because all I wanted to do was hold him. I missed my sweet boy!
Saturday, November 23, 2013
Tenotomy
Peter had his tenotomy procedure yesterday!
His surgery was scheduled for 8:30am, and we had to be there at 6:30am. When Dr. Segal's assistant called to schedule the surgery, she told me that Peter could not have any breastmilk after 4:30am, so I set my alarm for 4am so I could be sure to feed him before he had to be cut off. However, he woke up at 3am to eat and nursed off and on until 4:30am (and I was so nervous I couldn't get any more sleep).
My father-in-law came over about 4:45am to stay with the older kids and take them to daycare later in the morning. Collin and I got ready to go, switched the carseat base over to our other vehicle, gave my FIL some last-minute instructions, etc. It was pouring rain (unusual for Phoenix) so we tried to leave early but ended up not getting out the door until nearly 5:30am.
The rain was so heavy that we had to backtrack twice due to flooded roads. (Thank God Collin is such a good driver!) Peter slept the entire time, thankfully. It was a little better once we finally got to the interstate, but it was still slow going due to morning rush hour traffic. I called the hospital to let them know we were delayed due to the heavy rain and flooded roads. The person I spoke to in Admitting said, "Oh... according to my records his surgery isn't until 1:30pm. Didn't anyone call you?"
I was incredulous, as I'd been told on Monday and Wednesday - by two different people - that surgery was 8:30am. I told her we'd figure it out when we (eventually) got there.
We didn't arrive until 6:45am and went straight to Admitting. Eventually we found out that surgery was indeed at 8:30am, not 1:30pm -- there had been a miscommunication somewhere.
Once we registered at Admitting, we were sent up to the 4th floor. I'd only ever been on the 2nd floor (that's where the Orthopedics department is located) so it was interesting to see another part of the hospital. I was amused to see that Toy Story 2 was playing on the waiting room TV, as we sometimes call Peter "Stinky Pete" (especially when he has a dirty diaper!).
We were greeted by a volunteer and only had to wait a few minutes before a nurse came to take us to our pre-op room. There was a basket of Beanie Babies for kids to hold and snuggle, and I picked out a teddy bear for Peter. The nurse went over some questions with us -- was Peter allergic to anything, had anyone in our family ever had a bad reaction to anesthesia, etc. -- and took his vital signs. She gave us an infant-sized hospital gown and we changed him into it.
Peter was awake by this time and antsy because he wanted to eat, and it broke my heart that I couldn't nurse him. We had a pacifier for him to suck and that helped a little bit. The nurse told us that Dr. Segal and the anesthesiologist would be in to speak with us. While we waited I held Peter and paced the room, and he actually fell asleep again, without nursing! That made waiting easier, and I was grateful to get some snuggle time in before the surgery.
Dr. Segal came in around 8:10 or so, and was able to meet Collin for the first time. He used a special marker to write his initials on each of Peter's upper thighs to indicate that the tendon in each heel would be cut. He gave us a brief overview of the surgery, why it was necessary, etc. (mostly for Collin's benefit, as I'd already read everything I could get my hands on about it).
Dr. Segal left, and shortly afterwards the anesthesiologist, Dr. Dado (pronounced Day-doe), came in. She explained, thoroughly, what the general anesthesiology entailed. It would be administered as a gas, through a breathing mask, and Peter's vital signs would be closely monitored throughout the procedure. (She told me what drug would be used, but I can't remember what it was.) He'd also have an IV in his hand to give him fluids so he wouldn't get dehydrated. She assured us that he would completely exhale the anesthesia before we were discharged and that there shouldn't be any lingering effects. We also discussed pain management post-discharge, and she told us the exact dosage of infant Tylenol or Motrin to use if needed.
She came across as very capable and confident, which made me feel a lot better. She thought Peter was adorable and commented that "he looked like a Peter" (she also told us that Peter was her father's name, which is why she liked it so much).
After Dr. Dado left, Dr. Segal's resident, Dr. Schmidt, came in to tell us that he was going to observe the surgery and wished us luck. Finally, the assisting nurse, Tim, came in to take Peter to the OR. He was awake by this time and starting to get fussy again. We kissed him goodbye and watched as he was wheeled away. I cried a little but managed to compose myself pretty quickly.
We went back to the waiting room to settle in. I went down to the cafeteria to grab some breakfast (one "decision-maker" had to remain in the waiting room at all times, just in case, so we couldn't go down together). I had that day's special, a Monte Cristo breakfast sandwich and fried potatoes, and it was delicious! I had to eat in the cafeteria since food and drink weren't allowed in the surgical waiting room.
By the time I got back upstairs, nearly an hour had passed, and the volunteer came over to usher us to a conference room to meet with Dr. Segal. He came in a few minutes later and told us the surgery had gone smoothly, Peter was already conscious, and that we should call to make an appointment in three weeks to take off the casts for the final time.
A few minutes later we were taken back to a recovery area to see Peter! I could hear him fussing as we approached the curtained area, and when we came in a nurse had him wrapped in a blanket and was cooing to him. I took him in my arms and kissed his pudgy cheeks, then sat down to nurse him right away. He latched on immediately and nursed well. He still had the IV in his hand, as well as a cord connected to his finger to monitor his vital signs. I could see how his heart rate went down as he started nursing (it had been slightly elevated while he was fussing).
We sat and chatted with the nurse as he ate; she told us what symptoms were expected (fussiness, gas, perhaps some vomiting due to swallowed air), and what symptoms meant we should call the doctor (excessive vomiting, elevated fever). She showed us the mask that had been used to administer the anesthesia - it was so little and cute!
Once he was almost done eating, she removed his IV and the monitor, and we changed him out of the hospital gown and into his onesie. The casts were still a little damp so I wrapped a towel around them. We signed paperwork, loaded him into his carseat, and left the hospital around 10:30am - a mere two hours after the surgery took place!
It was still raining but the drive home was much more peaceful. Peter did spit up quite a bit right after we left, but slept most of the way home. Once home we spent the rest of the day snuggling and even took a nap together. He was fussier than usual that evening and I did give him the recommended dose of Tylenol, which seemed to help.
Today (Saturday) he's pretty much back to normal. He had a vomiting episode earlier this morning (ew) but has kept down his feedings since then. I'm so glad that the surgery is over, and I'm looking forward to getting into the boots and bar. I return to work on December 2nd (boo) so I'm glad we got the surgery over with before I went back.
I hope our transition to the boots and bar isn't too rough - in my FB support group, a lot of moms say that their kids screamed for weeks on end when they first got the brace. I'm not looking forward to sleepless nights followed by a long commute if our experience is similar. However, Peter has been pretty mellow throughout the process so far, so I'm hopeful that will continue.
His surgery was scheduled for 8:30am, and we had to be there at 6:30am. When Dr. Segal's assistant called to schedule the surgery, she told me that Peter could not have any breastmilk after 4:30am, so I set my alarm for 4am so I could be sure to feed him before he had to be cut off. However, he woke up at 3am to eat and nursed off and on until 4:30am (and I was so nervous I couldn't get any more sleep).
My father-in-law came over about 4:45am to stay with the older kids and take them to daycare later in the morning. Collin and I got ready to go, switched the carseat base over to our other vehicle, gave my FIL some last-minute instructions, etc. It was pouring rain (unusual for Phoenix) so we tried to leave early but ended up not getting out the door until nearly 5:30am.
The rain was so heavy that we had to backtrack twice due to flooded roads. (Thank God Collin is such a good driver!) Peter slept the entire time, thankfully. It was a little better once we finally got to the interstate, but it was still slow going due to morning rush hour traffic. I called the hospital to let them know we were delayed due to the heavy rain and flooded roads. The person I spoke to in Admitting said, "Oh... according to my records his surgery isn't until 1:30pm. Didn't anyone call you?"
I was incredulous, as I'd been told on Monday and Wednesday - by two different people - that surgery was 8:30am. I told her we'd figure it out when we (eventually) got there.
We didn't arrive until 6:45am and went straight to Admitting. Eventually we found out that surgery was indeed at 8:30am, not 1:30pm -- there had been a miscommunication somewhere.
Once we registered at Admitting, we were sent up to the 4th floor. I'd only ever been on the 2nd floor (that's where the Orthopedics department is located) so it was interesting to see another part of the hospital. I was amused to see that Toy Story 2 was playing on the waiting room TV, as we sometimes call Peter "Stinky Pete" (especially when he has a dirty diaper!).
We were greeted by a volunteer and only had to wait a few minutes before a nurse came to take us to our pre-op room. There was a basket of Beanie Babies for kids to hold and snuggle, and I picked out a teddy bear for Peter. The nurse went over some questions with us -- was Peter allergic to anything, had anyone in our family ever had a bad reaction to anesthesia, etc. -- and took his vital signs. She gave us an infant-sized hospital gown and we changed him into it.
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| All dressed up and ready to go! |
Peter was awake by this time and antsy because he wanted to eat, and it broke my heart that I couldn't nurse him. We had a pacifier for him to suck and that helped a little bit. The nurse told us that Dr. Segal and the anesthesiologist would be in to speak with us. While we waited I held Peter and paced the room, and he actually fell asleep again, without nursing! That made waiting easier, and I was grateful to get some snuggle time in before the surgery.
Dr. Segal came in around 8:10 or so, and was able to meet Collin for the first time. He used a special marker to write his initials on each of Peter's upper thighs to indicate that the tendon in each heel would be cut. He gave us a brief overview of the surgery, why it was necessary, etc. (mostly for Collin's benefit, as I'd already read everything I could get my hands on about it).
Dr. Segal left, and shortly afterwards the anesthesiologist, Dr. Dado (pronounced Day-doe), came in. She explained, thoroughly, what the general anesthesiology entailed. It would be administered as a gas, through a breathing mask, and Peter's vital signs would be closely monitored throughout the procedure. (She told me what drug would be used, but I can't remember what it was.) He'd also have an IV in his hand to give him fluids so he wouldn't get dehydrated. She assured us that he would completely exhale the anesthesia before we were discharged and that there shouldn't be any lingering effects. We also discussed pain management post-discharge, and she told us the exact dosage of infant Tylenol or Motrin to use if needed.
She came across as very capable and confident, which made me feel a lot better. She thought Peter was adorable and commented that "he looked like a Peter" (she also told us that Peter was her father's name, which is why she liked it so much).
After Dr. Dado left, Dr. Segal's resident, Dr. Schmidt, came in to tell us that he was going to observe the surgery and wished us luck. Finally, the assisting nurse, Tim, came in to take Peter to the OR. He was awake by this time and starting to get fussy again. We kissed him goodbye and watched as he was wheeled away. I cried a little but managed to compose myself pretty quickly.
We went back to the waiting room to settle in. I went down to the cafeteria to grab some breakfast (one "decision-maker" had to remain in the waiting room at all times, just in case, so we couldn't go down together). I had that day's special, a Monte Cristo breakfast sandwich and fried potatoes, and it was delicious! I had to eat in the cafeteria since food and drink weren't allowed in the surgical waiting room.
By the time I got back upstairs, nearly an hour had passed, and the volunteer came over to usher us to a conference room to meet with Dr. Segal. He came in a few minutes later and told us the surgery had gone smoothly, Peter was already conscious, and that we should call to make an appointment in three weeks to take off the casts for the final time.
A few minutes later we were taken back to a recovery area to see Peter! I could hear him fussing as we approached the curtained area, and when we came in a nurse had him wrapped in a blanket and was cooing to him. I took him in my arms and kissed his pudgy cheeks, then sat down to nurse him right away. He latched on immediately and nursed well. He still had the IV in his hand, as well as a cord connected to his finger to monitor his vital signs. I could see how his heart rate went down as he started nursing (it had been slightly elevated while he was fussing).
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| Reunited |
We sat and chatted with the nurse as he ate; she told us what symptoms were expected (fussiness, gas, perhaps some vomiting due to swallowed air), and what symptoms meant we should call the doctor (excessive vomiting, elevated fever). She showed us the mask that had been used to administer the anesthesia - it was so little and cute!
Once he was almost done eating, she removed his IV and the monitor, and we changed him out of the hospital gown and into his onesie. The casts were still a little damp so I wrapped a towel around them. We signed paperwork, loaded him into his carseat, and left the hospital around 10:30am - a mere two hours after the surgery took place!
It was still raining but the drive home was much more peaceful. Peter did spit up quite a bit right after we left, but slept most of the way home. Once home we spent the rest of the day snuggling and even took a nap together. He was fussier than usual that evening and I did give him the recommended dose of Tylenol, which seemed to help.
Today (Saturday) he's pretty much back to normal. He had a vomiting episode earlier this morning (ew) but has kept down his feedings since then. I'm so glad that the surgery is over, and I'm looking forward to getting into the boots and bar. I return to work on December 2nd (boo) so I'm glad we got the surgery over with before I went back.
I hope our transition to the boots and bar isn't too rough - in my FB support group, a lot of moms say that their kids screamed for weeks on end when they first got the brace. I'm not looking forward to sleepless nights followed by a long commute if our experience is similar. However, Peter has been pretty mellow throughout the process so far, so I'm hopeful that will continue.
Tuesday, November 19, 2013
Sixth Casts
Peter's sixth casts were applied on last Thursday (November 14). As Dr. Segal said, they were the last casts for which he was awake - we've scheduled his tenotomy procedures for Friday, November 22 at 8:30am! If you could spare a prayer for him, and us, I'd be grateful.
I'm looking forward to having them over and done with, but I'm feeling pretty anxious as he'll be put under general anesthesia. Some doctors use local anesthesia or numbing cream, but Dr. Segal prefers general anesthesia, especially for babies with bilateral clubfeet, since it's so important that they stay perfectly still - a strong jerk of the foot at the wrong time could be disastrous.
After the tenotomies, he'll get another set of casts and will be in those for three weeks. Once they are removed, he'll start the 23/7 brace wear.
I was hoping he'd be into his boots and bar before I go back to work (probably December 2), but it looks like that won't happen. I hope he adjusts well to the brace, because enduring a few sleepless nights will be that more difficult if I have to get up at 5am and drive 43 miles. Luckily, he's a mellow little guy so far and has adjusted really well to the casts.
I'm looking forward to having them over and done with, but I'm feeling pretty anxious as he'll be put under general anesthesia. Some doctors use local anesthesia or numbing cream, but Dr. Segal prefers general anesthesia, especially for babies with bilateral clubfeet, since it's so important that they stay perfectly still - a strong jerk of the foot at the wrong time could be disastrous.
After the tenotomies, he'll get another set of casts and will be in those for three weeks. Once they are removed, he'll start the 23/7 brace wear.
I was hoping he'd be into his boots and bar before I go back to work (probably December 2), but it looks like that won't happen. I hope he adjusts well to the brace, because enduring a few sleepless nights will be that more difficult if I have to get up at 5am and drive 43 miles. Luckily, he's a mellow little guy so far and has adjusted really well to the casts.
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| Peter's feet prior to round 6 of casting |
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| Peter's feet prior to round 5 of casting |
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| Peter's feet prior to round 4 of casting (couldn't get a better pic because he was kicking a lot!) |
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| Peter's feet prior to round 3 of casting |
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| Peter's feet prior to round 2 of casting |
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| Peter's feet at birth |
Saturday, November 9, 2013
Fifth Casts
Peter got his fifth casts on Thursday, November 7, his one month birthday!
Dr. Segal said he wants Peter to have one more set, and then we'll set the surgery date for his tetonomies. I'm pretty apprehensive about that since he'll have to go under general anesthesia for them, but I'm also glad to know that his feet are very nearly fully corrected. We're almost to the boots and bar!
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| One month old! |
Dr. Segal said he wants Peter to have one more set, and then we'll set the surgery date for his tetonomies. I'm pretty apprehensive about that since he'll have to go under general anesthesia for them, but I'm also glad to know that his feet are very nearly fully corrected. We're almost to the boots and bar!
I actually very much enjoyed his casting appointment - he sucked in his bottle the entire time, no fussing, and I played music on my iPhone. Dr. Segal, his assistant, and I kept up a conversation the whole time about our favorite musicians.
When Peter and I went into the casting room, Dr. Segal was in the process of putting casts on the legs of a tiny baby girl with a ton of dark hair. Her name was Emory. (Not sure of the spelling.) Her mom and I talked a bit; I showed her a picture of Peter's feet when he was born, and then showed her how much they had improved since then. She was encouraged, I think. :)
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| Peter's feet prior to round 5 of casting |
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| Peter's feet prior to round 4 of casting (couldn't get a better pic because he was kicking a lot!) |
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| Peter's feet prior to round 3 of casting |
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| Peter's feet prior to round 2 of casting |
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| Peter's feet at birth |
Saturday, November 2, 2013
Fourth casts
Peter had his fourth round of casting on October 31. Dr. Segal commented that he was pleased with his progress - he said Peter's feet were very stiff prior to the first cast, but they're a lot more flexible now. He estimates that Peter will need 2-3 more casts, and then he'll perform a tetonomy on both feet.
Casting went very well this week. Peter was very hungry before we started, so he was too busy wolfing down the bottle I had ready to fuss during the casting. I also met another clubfoot mom in the waiting room, from Queen Creek, AZ. Her little girl was 9 weeks and already in the boots and bar brace.
Oh, and I had yet another random clubfoot mom sighting this week! We were at a Chinese buffet with my mother-in-law, and an older lady walked by, saw Peter's casts, and asked if his feet were clubbed. When I said yes, she remarked that her daughter had been born with one clubbed foot.
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| Peter's feet prior to round 4 of casting (couldn't get a better pic because he was kicking a lot!) |
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| Peter's feet prior to round 3 of casting |
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| Peter's feet prior to round 2 of casting |
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| Peter's feet at birth |
Thursday, October 31, 2013
Saturday, October 26, 2013
An Encounter at the Mall
One aspect of our clubfoot journey that's made me the most apprehensive is how strangers would react to Peter's casts (and later, his boots and bar). I've heard some horror stories from other clubfoot moms about strangers asking them why they broke their baby's legs, or who dropped their baby, and so on.
So far, I haven't had any negative comments. Most people, when they see his casts, just ask what happened in a concerned, non-accusatory manner. Some just ignore them completely, although I can tell they're curious. (In that case, either Collin or I will take the imitative and tell them he was born with clubbed feet.)
At William's first T-ball practice the other night, a lady started playing with his toes. I was a little weirded out by it but didn't say anything. When she realized what she was doing, she apologized and said she was a nurse, and it was an autopilot reaction -- she was making sure the casts weren't cutting off his circulation!
Something I wasn't expecting was to have a very positive encounter, but that's exactly what happened a few days ago.
Collin and I went to the mall so he could get his iPhone checked out at the Apple store. Afterwards, we were sitting on a bench and I was nursing Peter. I was wearing a nursing cover but his little legs, in their plaster casts, were sticking out.
A woman, probably in her late fifties or early sixties, stopped in front of me and said, "Wow, that brings back memories." I thought she was referring to nursing and I just smiled, but then she continued, "My son wore casts on his legs too. Your baby was born with clubbed feet?"
My jaw dropped open for a second, but I recovered and answered, "Yes, he was!"
She told me that her son was born with clubbed feet about twenty-five years ago, and got his first casts when he was several weeks old. "But he's just fine now," she told me. "You'd never know anything had been wrong. He plays a lot of sports."
She was surprised when we told her that Peter had gotten his first casts when he was three days old, but saw the wisdom in starting early.
As she left, she said, "Hang in there! Soon all this treatment will be nothing but a memory. It really goes by so fast."
We didn't get her name, which I regret now, but it was a pleasant encounter to meet another mom who'd been there and gotten through it just fine.
So far, I haven't had any negative comments. Most people, when they see his casts, just ask what happened in a concerned, non-accusatory manner. Some just ignore them completely, although I can tell they're curious. (In that case, either Collin or I will take the imitative and tell them he was born with clubbed feet.)
At William's first T-ball practice the other night, a lady started playing with his toes. I was a little weirded out by it but didn't say anything. When she realized what she was doing, she apologized and said she was a nurse, and it was an autopilot reaction -- she was making sure the casts weren't cutting off his circulation!
Something I wasn't expecting was to have a very positive encounter, but that's exactly what happened a few days ago.
Collin and I went to the mall so he could get his iPhone checked out at the Apple store. Afterwards, we were sitting on a bench and I was nursing Peter. I was wearing a nursing cover but his little legs, in their plaster casts, were sticking out.
A woman, probably in her late fifties or early sixties, stopped in front of me and said, "Wow, that brings back memories." I thought she was referring to nursing and I just smiled, but then she continued, "My son wore casts on his legs too. Your baby was born with clubbed feet?"
My jaw dropped open for a second, but I recovered and answered, "Yes, he was!"
She told me that her son was born with clubbed feet about twenty-five years ago, and got his first casts when he was several weeks old. "But he's just fine now," she told me. "You'd never know anything had been wrong. He plays a lot of sports."
She was surprised when we told her that Peter had gotten his first casts when he was three days old, but saw the wisdom in starting early.
As she left, she said, "Hang in there! Soon all this treatment will be nothing but a memory. It really goes by so fast."
We didn't get her name, which I regret now, but it was a pleasant encounter to meet another mom who'd been there and gotten through it just fine.
Thursday, October 24, 2013
Third Casts
I took Peter in for his third set of casts today. For a pleasant change of pace, we barely had to wait at all and the entire appointment, casting and all, took about an hour! That's amazingly fast compared to our prior experiences. For example, I had to wait a hour and a half before his casts were even taken off during our first casting appointment.
Dr. Segal was pleased with the progress Peter has made so far. His feet look better and better each week! I don't know yet how many more casts will be needed, but I'm hoping it will only be 2-3.
He's been fussy this evening, as expected, but I've been carrying him most of the evening in my Baby K'Tan carrier and that seems to help. (Incidentally, I've found the Baby K'Tan to be an excellent carrier during the casting phase - the hug position seems to work best.)
Dr. Segal was pleased with the progress Peter has made so far. His feet look better and better each week! I don't know yet how many more casts will be needed, but I'm hoping it will only be 2-3.
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| Peter's feet prior to round 3 of casting |
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| Peter's feet prior to round 2 of casting |
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| Peter's feet at birth |
Friday, October 18, 2013
Two Sets of Casts and Counting
Peter's first casting appointment was October 10, 2013, when he was 3 days old. I asked Dr. Segal if we could start the casting as soon as possible, so that we could hopefully be done with the casting phase of his treatment before I have to go back to work.
I was apprehensive about the appointment because my milk hadn't come in yet, so pumping enough for a bottle to give him while the casting was going on wasn't an option. I'd intended to bring a pacifier to help soothe him, but forgot it at home. I nursed him immediately before the casting began but it wasn't enough; he was very unhappy and screamed the whole time. :( I felt awful and cried the whole way home.
As I'd been warned, he was very fussy that night and the next day, but he was his normal mellow self again within two days. After nearly a week in the casts they didn't seem to phase him a bit. I found diaper changes a challenge, though; poop gets on the casts no matter how careful I am, so the tops were stained yellow. Thankfully no poop has gotten in the casts. A few other clubfoot moms have recommended putting Saran Wrap over the tops of the casts to protect them; I may try that.
We had round two of casting earlier today (October 18, 2013) and it went MUCH better. I was able to pump 4oz of milk this morning, so I had the bottle in addition to a pacifier. I also played soothing music on my iPhone and that seemed to help as well. He didn't make a peep while they did his left leg. He fussed a little bit while his right leg was being done but then fell asleep during the process! It was a welcome change from the first casting experience.
Dr. Segal was away from the office this week, so Peter's casting was done by Dr. Belthur, who just started at Phoenix Children's Hospital in August (I met him at my initial consultation appointment; at that time, he was just shadowing Dr. Segal and hadn't started seeing any patients yet). Dr. Belthur told me that he studied with Dr. Ponseti himself in the early 2000s. He told me that he and Dr. Segal were competing to see who could make the best casts, so I need to keep an eye on Peter's and compare their work.
I took this picture of Peter's feet the day he was born:
We're making progress!!
I was apprehensive about the appointment because my milk hadn't come in yet, so pumping enough for a bottle to give him while the casting was going on wasn't an option. I'd intended to bring a pacifier to help soothe him, but forgot it at home. I nursed him immediately before the casting began but it wasn't enough; he was very unhappy and screamed the whole time. :( I felt awful and cried the whole way home.
As I'd been warned, he was very fussy that night and the next day, but he was his normal mellow self again within two days. After nearly a week in the casts they didn't seem to phase him a bit. I found diaper changes a challenge, though; poop gets on the casts no matter how careful I am, so the tops were stained yellow. Thankfully no poop has gotten in the casts. A few other clubfoot moms have recommended putting Saran Wrap over the tops of the casts to protect them; I may try that.
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| Peter's first set of casts |
We had round two of casting earlier today (October 18, 2013) and it went MUCH better. I was able to pump 4oz of milk this morning, so I had the bottle in addition to a pacifier. I also played soothing music on my iPhone and that seemed to help as well. He didn't make a peep while they did his left leg. He fussed a little bit while his right leg was being done but then fell asleep during the process! It was a welcome change from the first casting experience.
Dr. Segal was away from the office this week, so Peter's casting was done by Dr. Belthur, who just started at Phoenix Children's Hospital in August (I met him at my initial consultation appointment; at that time, he was just shadowing Dr. Segal and hadn't started seeing any patients yet). Dr. Belthur told me that he studied with Dr. Ponseti himself in the early 2000s. He told me that he and Dr. Segal were competing to see who could make the best casts, so I need to keep an eye on Peter's and compare their work.
I took this picture of Peter's feet the day he was born:
Here's a picture of his feet today, after the first casts were taken off:
We're making progress!!
Monday, October 7, 2013
Tiebreaker is here!
Peter David Wahlund
10/07/13, 4:27am
9lbs, 0oz; 20.5 in
I've already e-mailed Dr. Segal, and we're in the process of setting up Peter's first casting appointment.
Tuesday, September 17, 2013
My Meeting with Dr. Segal
Ack, I didn't intend for an entire month to go by without a new post! It's been a very busy month, tying up loose ends at work and getting ready for Tiebreaker's arrival. I'm full-term today so we're in the home stretch!
Who will be treating your baby's clubfeet? Tiebreaker's doctor is Dr. Lee Segal at Phoenix Children's Hospital.
How did you find him? The day we received Tiebreaker's diagnosis (May 17, 2013), I visited Ponseti International's website and found their list of preferred providers, as listed by location. At the time, Dr. Segal was the only Ponseti-certified orthopedist listed for the Phoenix area. (Since that time, another doctor at Phoenix Children's Hospital has become Ponseti-certified!)
I checked with my insurance company to see if he was in-network (he was) and if I needed a referral from my OB first (I didn't). I called Phoenix Children's the following business day, explained about Tiebreaker's diagnosis, and set up a consultation appointment for August 8, 2013. The receptionist who set up the appointment was very kind and put me at ease, assuring me that Dr. Segal had treated many children with clubfoot and did a wonderful job.
Prior to the appointment, I read Dr. Segal's CV and watched the videos about both him and the Center for Pediatric Orthopedics, as featured on the Center's website:
On August 8th, I arrived at the appointment promptly at 4pm... and ended up waiting for an hour and a half. Apparently there had been some emergency and Dr. Segal was running several hours late. Luckily I had cleared my schedule for the evening (except for coffee with a friend, which I was able to postpone) and I had some Kindle books to keep me occupied.
The staff was very attentive to me and apologetic about the delay -- a nurse checked on me regularly to update me on how much longer it would be (I was in the waiting room for about 45 minutes, and then waited in a consultation room for an additional 45 minutes). They offered me snacks and bottled water as well (I declined the former -- too nervous to eat -- but accepted the latter).
Finally, around 5:30pm, Dr. Segal came in. He had several other doctors with him, including the other Ponseti-certified doctor, a student doctor, and another doctor whose function I can't remember. We sat and talked for about 30 minutes. I liked him immediately. He was very kind, very personable, and put me at ease right away.
He asked about Tiebreaker's medical history so far, how my pregnancy was going, what research I had done, etc. I offered him the DVDs I'd brought with me that contained the ultrasound images of Tiebreaker's feet, but he didn't feel it was necessary to see them, given that he'd received and read the ultrasound report. It was impossible, he explained, to judge the severity of the clubfoot based on ultrasound images; it was just best to wait until the baby was born and he could examine his or her feet personally. He also explained the treatment process and asked if I had any questions.
Of course, I did -- I had an entire list that I'd been compiling since May. These are the questions I asked, and paraphrased versions of his answers:
When do you recommend starting casting? Do you recommend beginning within days of baby's birth? Dr. Segal answered that he recommended starting casting within the first two weeks of the baby's birth, assuming the baby was otherwise healthy and doing well, but the exact timing was flexible depending on what the parents wanted.
He asked when I would prefer to start treatment, and I explained that I only had six weeks of maternity leave so I was hoping we could get the baby out of casts entirely by the time I had to go back to work. Given my short leave time, my preference was to begin as soon as possible. He said we could definitely work out a schedule to our mutual satisfaction once the baby arrived.
Baby wearing - I'm thinking of the Baby K'Tan sling and the Beco Gemini. Do you have any recommendations? He said he didn't have much experience with babywearing and advised me to talk to other mothers of kids with clubfoot for advice (I already had by that point, and the two slings I mentioned above were the most recommended by them -- I've already purchased one of each!).
Do we need to have a pediatrician for the baby, or can we continue to use our family practice doctor? He said that a family practice doctor was fine (assuming baby was otherwise healthy).
Tenotomy - do you perform the tenotomy under local or general anesthesia? Dr. Segal said that in a baby with unilateral clubfoot (when only one foot is affected), he used local anesthesia, but for babies with bilateral clubfoot, when both feet were affected, he preferred to use general anesthesia, since two tentomies at once could cause more pain, moving around, etc.
What boots/brace combo do you recommend once casting is done? He recommended the standard AFOs and Ponseti bar as sold by MD Orthopedics. I asked about the Dobbs bar, and he said that it was an alternative option if the Ponseti bar didn't work well, but he recommends trying the Ponseti bar first as he's seen the greatest success rate with it.
Will we get boots & bar through this office or will we order them independently? He said that the office would help us with the ordering process at our last casting appointment, and that there was an orthopedics shop not far from the hospital that had clubfoot paraphernalia in stock, so likely we could purchase what we needed the same day. Eventually, he's hoping to stock them in PCH itself.
I think I asked additional questions but I can't remember them. :)
Dr. Segal gave me his personal business card and told me to e-mail him directly as soon as the baby was born, and he would take care of setting up our first casting appointment himself.
I input the information into my iPhone immediately, and it's a good thing I did. I put the card in a folder of materials (printed PDFs explaining about clubfoot, the treatment, the importance of following the bracing protocols, etc.) I'd been given at the outset of my appointment, and then I promptly forgot to take the folder home! (I had to rush to the bathroom after the appointment and I think I left them in there -- oops!) But I already knew that the PDFs were available on the website for download, and I had the business card info in my iPhone already, so I didn't worry about it.
I feel much more settled and confident knowing that we have a good care provider for the baby and a basic treatment plan in place. Now all we have to do is wait for the baby to arrive and our clubfoot journey will continue (and hopefully I'll post more often). :)
I've been intending to write a more thorough description of my meeting with the pediatric orthopedic specialist who will be treating Tiebreaker's clubfeet. I don't have a ton of time at the moment, so here's basically a condensed version of what I wanted to write in a Q&A format.
Who will be treating your baby's clubfeet? Tiebreaker's doctor is Dr. Lee Segal at Phoenix Children's Hospital.
How did you find him? The day we received Tiebreaker's diagnosis (May 17, 2013), I visited Ponseti International's website and found their list of preferred providers, as listed by location. At the time, Dr. Segal was the only Ponseti-certified orthopedist listed for the Phoenix area. (Since that time, another doctor at Phoenix Children's Hospital has become Ponseti-certified!)
I checked with my insurance company to see if he was in-network (he was) and if I needed a referral from my OB first (I didn't). I called Phoenix Children's the following business day, explained about Tiebreaker's diagnosis, and set up a consultation appointment for August 8, 2013. The receptionist who set up the appointment was very kind and put me at ease, assuring me that Dr. Segal had treated many children with clubfoot and did a wonderful job.
Prior to the appointment, I read Dr. Segal's CV and watched the videos about both him and the Center for Pediatric Orthopedics, as featured on the Center's website:
On August 8th, I arrived at the appointment promptly at 4pm... and ended up waiting for an hour and a half. Apparently there had been some emergency and Dr. Segal was running several hours late. Luckily I had cleared my schedule for the evening (except for coffee with a friend, which I was able to postpone) and I had some Kindle books to keep me occupied.
The staff was very attentive to me and apologetic about the delay -- a nurse checked on me regularly to update me on how much longer it would be (I was in the waiting room for about 45 minutes, and then waited in a consultation room for an additional 45 minutes). They offered me snacks and bottled water as well (I declined the former -- too nervous to eat -- but accepted the latter).
Finally, around 5:30pm, Dr. Segal came in. He had several other doctors with him, including the other Ponseti-certified doctor, a student doctor, and another doctor whose function I can't remember. We sat and talked for about 30 minutes. I liked him immediately. He was very kind, very personable, and put me at ease right away.
He asked about Tiebreaker's medical history so far, how my pregnancy was going, what research I had done, etc. I offered him the DVDs I'd brought with me that contained the ultrasound images of Tiebreaker's feet, but he didn't feel it was necessary to see them, given that he'd received and read the ultrasound report. It was impossible, he explained, to judge the severity of the clubfoot based on ultrasound images; it was just best to wait until the baby was born and he could examine his or her feet personally. He also explained the treatment process and asked if I had any questions.
Of course, I did -- I had an entire list that I'd been compiling since May. These are the questions I asked, and paraphrased versions of his answers:
When do you recommend starting casting? Do you recommend beginning within days of baby's birth? Dr. Segal answered that he recommended starting casting within the first two weeks of the baby's birth, assuming the baby was otherwise healthy and doing well, but the exact timing was flexible depending on what the parents wanted.
He asked when I would prefer to start treatment, and I explained that I only had six weeks of maternity leave so I was hoping we could get the baby out of casts entirely by the time I had to go back to work. Given my short leave time, my preference was to begin as soon as possible. He said we could definitely work out a schedule to our mutual satisfaction once the baby arrived.
Baby wearing - I'm thinking of the Baby K'Tan sling and the Beco Gemini. Do you have any recommendations? He said he didn't have much experience with babywearing and advised me to talk to other mothers of kids with clubfoot for advice (I already had by that point, and the two slings I mentioned above were the most recommended by them -- I've already purchased one of each!).
Do we need to have a pediatrician for the baby, or can we continue to use our family practice doctor? He said that a family practice doctor was fine (assuming baby was otherwise healthy).
Tenotomy - do you perform the tenotomy under local or general anesthesia? Dr. Segal said that in a baby with unilateral clubfoot (when only one foot is affected), he used local anesthesia, but for babies with bilateral clubfoot, when both feet were affected, he preferred to use general anesthesia, since two tentomies at once could cause more pain, moving around, etc.
What boots/brace combo do you recommend once casting is done? He recommended the standard AFOs and Ponseti bar as sold by MD Orthopedics. I asked about the Dobbs bar, and he said that it was an alternative option if the Ponseti bar didn't work well, but he recommends trying the Ponseti bar first as he's seen the greatest success rate with it.
Will we get boots & bar through this office or will we order them independently? He said that the office would help us with the ordering process at our last casting appointment, and that there was an orthopedics shop not far from the hospital that had clubfoot paraphernalia in stock, so likely we could purchase what we needed the same day. Eventually, he's hoping to stock them in PCH itself.
I think I asked additional questions but I can't remember them. :)
Dr. Segal gave me his personal business card and told me to e-mail him directly as soon as the baby was born, and he would take care of setting up our first casting appointment himself.
I input the information into my iPhone immediately, and it's a good thing I did. I put the card in a folder of materials (printed PDFs explaining about clubfoot, the treatment, the importance of following the bracing protocols, etc.) I'd been given at the outset of my appointment, and then I promptly forgot to take the folder home! (I had to rush to the bathroom after the appointment and I think I left them in there -- oops!) But I already knew that the PDFs were available on the website for download, and I had the business card info in my iPhone already, so I didn't worry about it.
I feel much more settled and confident knowing that we have a good care provider for the baby and a basic treatment plan in place. Now all we have to do is wait for the baby to arrive and our clubfoot journey will continue (and hopefully I'll post more often). :)
Friday, August 16, 2013
My Favorite Resources and Information about Clubfoot
I believe that information is power. Whenever I'm interested in anything, I research the heck out of it. Tiebreaker's diagnosis was no different. In the weeks following the initial ultrasound, I spent most of my free time doing scouring the Internet for information. I also had a lengthy e-mail correspondence with an online friend whose daughter has bilateral clubfoot. Here are the most helpful resources I've found.
I couldn't find many books about clubfoot written for the layperson (i.e., a non-medical professional). The Parents' Guide to Clubfoot by Betsy Miller is one of the very few available.
It was written in 2012 so the information it contains is very current, and it's available in paperback, for Kindle, or for Nook.
I purchased the paperback version because I only have the Kindle app for iPhone, and I thought any pictures or diagrams would be more easily visible in the paperback as opposed to my small iPhone screen. Also, there's a section at the back that contains a book for kids about clubfoot, and I thought it would be easier to read it to them from the actual book. If you have an iPad or an actual Kindle or Nook, though, I think the electronic version would be just as good.
It is an excellent resource, and I highly recommend it for any parent of a child with clubfoot or even for anyone who wants to learn more about the condition. It has helped me feel more prepared for our baby's treatment, and contains many success stories from other parents. She also has a chapter about finding a Ponseti-trained care provider, "red flags" to look for when interviewing care providers, and information about online support groups that will be helpful for any parent whose child's clubfoot was diagnosed prenatally, as Tiebreaker's was.
This is another video about the treatment of clubfoot by Phoenix Children's Hospital, the facility where we'll be taking Tiebreaker for treatment, and again featuring his or her doctor. It also contains interviews with several parents who had their children's clubfoot treated there.
This video was created for the University of Iowa Department of Orthopedics, where Dr. Ignacio Ponseti (creator of the Ponseti method of treatment) practiced, for the purpose of promoting Dr. Ponseti's work. This a great peek into the history of Dr. Ponseti's method and his success with it. It was made while Dr. Ponseti was still alive, and the director was able to meet with him prior to his passing.
Blogroll
On the right, I have a blogroll of other blogs of parents on the clubfoot journey. If you have such a blog and would like to be added, please leave a comment or e-mail me!
Books
I couldn't find many books about clubfoot written for the layperson (i.e., a non-medical professional). The Parents' Guide to Clubfoot by Betsy Miller is one of the very few available.
It was written in 2012 so the information it contains is very current, and it's available in paperback, for Kindle, or for Nook.
I purchased the paperback version because I only have the Kindle app for iPhone, and I thought any pictures or diagrams would be more easily visible in the paperback as opposed to my small iPhone screen. Also, there's a section at the back that contains a book for kids about clubfoot, and I thought it would be easier to read it to them from the actual book. If you have an iPad or an actual Kindle or Nook, though, I think the electronic version would be just as good.
It is an excellent resource, and I highly recommend it for any parent of a child with clubfoot or even for anyone who wants to learn more about the condition. It has helped me feel more prepared for our baby's treatment, and contains many success stories from other parents. She also has a chapter about finding a Ponseti-trained care provider, "red flags" to look for when interviewing care providers, and information about online support groups that will be helpful for any parent whose child's clubfoot was diagnosed prenatally, as Tiebreaker's was.
PDFs
The staff at Phoenix Children's Hospital Center for Pediatric Orthopedics, where Tiebreaker will be treated, gave me a folder with several concise, informational PDFs about clubfoot, and I was pleased to see they were also available at their website for download.
Support Groups Online
The best online support group I've found is the Yahoo! Group nosurgery4clubfoot (this group is also highly recommended in Betsy Miller's book). So far, it's been a valuable source of information, and it's great to be able to chat with other parents who are on the clubfoot treatment journey.
Facebook group - Clubfoot Journey for Mommies and Babies
Facebook group - Clubfoot is Treatable
Videos
This page on Clubfeet.net contains six YouTube videos about clubfoot. The first four comprise a complete documentary about clubfoot and the Ponseti method of treatment -- I found these very informational and helpful. The last two videos are of various medical professionals discussion clubfoot and its treatment.
This video features the doctor (and the facility) who will be treating Tiebreaker's clubfoot! I met him for a consultation appointment on August 8 and was very pleased by his knowledge and his manner.
This video features the doctor (and the facility) who will be treating Tiebreaker's clubfoot! I met him for a consultation appointment on August 8 and was very pleased by his knowledge and his manner.
This is another video about the treatment of clubfoot by Phoenix Children's Hospital, the facility where we'll be taking Tiebreaker for treatment, and again featuring his or her doctor. It also contains interviews with several parents who had their children's clubfoot treated there.
This video was created for the University of Iowa Department of Orthopedics, where Dr. Ignacio Ponseti (creator of the Ponseti method of treatment) practiced, for the purpose of promoting Dr. Ponseti's work. This a great peek into the history of Dr. Ponseti's method and his success with it. It was made while Dr. Ponseti was still alive, and the director was able to meet with him prior to his passing.
Websites
There are a ton of websites relating to clubfoot out there, but these are my favorites:
Ponseti International - a must-visit for any parent. The first step in the journey to find a care provider should be their list of Ponseti-certified physicians. It's important to find a doctor who strictly follows the Ponseti protocol (and who, preferably, learned the method from Dr. Ponseti himself and/or at the University of Iowa).
MD Orthopedics - the go-to site for the "boots and bars" brace that all kids with clubfoot wear after the casting process is completed.
MD Orthopedics - the go-to site for the "boots and bars" brace that all kids with clubfoot wear after the casting process is completed.
Footnote Film Project - there's a documentary in the works about the treatment of clubfoot; they're currently fundraising to film internationally. Looks like a neat project!
Tony Spineto, Clubfoot Triathlete - Tony is an endurance athlete who was born with bilateral clubfoot. He seeks to encourage and educate children with clubfoot and their parents, and he's currently writing a book about his experiences.
To Parents of Children Born with Clubfoot - a message from Dr. Ponseti, hosted at the University of Iowa Children's Hospital site, discussing why it's so important to get a child's clubfoot treated properly.
Friday, August 9, 2013
The Saga Begins
Our clubfoot journey began on May 17, 2013, when I was 19w3d pregnant with our fifth child. I went to my OB/GYN's office for my routine 20-week anatomy ultrasound, along with my husband and my two oldest children. (We did not find out his/her gender, and refer to the baby as "Tiebreaker," since s/he has two brothers and two sisters eagerly awaiting his/her arrival.)
Here are a few of the pictures we received that day:
Here are a few of the pictures we received that day:
 |
| Profile pic |
 |
| His/her sweet little face in 3D. |
 |
| A picture that clearly shows one of his/her club feet, although during the u/s itself I didn't notice. |
I thought everything went well. In hindsight, when the tech measured the baby's femur he didn't say much and changed the subject (I think he asked me if I was hoping for a boy or a girl), but at the time I didn't notice.
He stated Baby was measuring right on target, printed out some pictures for us, and mentioned he'd need a few minutes to prepare the report before giving it to my OB. All fine, all routine.
When we were called back into my OB's office, it did seem to take a little longer than usual for him to come in, but I dismissed that as well. A busy day for him, I thought. Maybe he'd had to deliver a baby or two that morning and was behind schedule as a result.
When Dr. N. did come in, it wasn't with the big smile I was accustomed to seeing from him. He glanced at the kids, who were waiting in the corner of the room with Collin, and hesitated for just an instant. Then he sat down and looked right at me.
"We need to talk about the ultrasound," he said.
I didn't understand why he looked so serious. Surely everything was fine. Wasn't he here to tell me that everything looked great, as he had twice before, during my pregnancies with Violet and Gabriel (my two youngest children)?
He looked me in the eye, making sure he had my attention. "The baby has clubbed feet."
My first reaction was denial. No. Not my baby. Everything had looked fine. The tech hadn't indicated anything was amiss. He was wrong. He had to be wrong.
"What?" I stammered.
As Dr. N explained that the results of the ultrasound showed bilateral club feet, my first thought was of my friend Monica and her baby Roslyn. And now Dr. N was telling me that the same thing had happened to my baby. I was having trouble wrapping my mind around it. I'd had four physically healthy kids and had expected that #5 would be equally healthy. But s/he wasn't.
We talked about what the treatment would involve, and my mind was in a whirl. Casts. Braces. Possible surgery if the baby was in the 5% for whom casting and braces didn't work. Dr. N inquired if we'd found out the baby's gender, and we said no. He said, "I was just curious, as boys are twice as likely to have club foot than girls."
We spent the last few minutes of the appointment talking about my health -- my recent bout with bronchitis in particular -- but I was having trouble focusing on me.
The next few weeks were consumed by research. I read every piece of material I could find about clubfoot, watched YouTube videos, and ordered a book off of Amazon. I called the only Ponseti-certified pediatric orthopedist in the Phoenix metro area and scheduled a consultation appointment for early August (more on that later.)
At 22 weeks pregnant, I had a Level II ultrasound at a perinatalogist's practice to confirm the diagnosis and also to check for any other issues (sometimes, clubfoot can be an indication of a larger problem such as spina bifida). Thankfully, everything else looked great and the clubfoot was the only anomaly the tech could see. These are the pictures that confirmed the diagnosis:
While I did experience some disappointment that the diagnosis was confirmed (I'd nursed a tiny hope that, perhaps, the findings of the first ultrasound had been some weird fluke and the baby's feet were not clubbed), I was relieved to know that there were no larger issues or syndromes at play.
Now that several months have passed since the baby's diagnosis, I'm feeling more confident about the journey ahead. I know it won't be easy, but nothing worth doing ever is. In my next post I'll share some of the resources and information that have helped me learn more than I ever thought I'd know about clubfoot.
We spent the last few minutes of the appointment talking about my health -- my recent bout with bronchitis in particular -- but I was having trouble focusing on me.
The next few weeks were consumed by research. I read every piece of material I could find about clubfoot, watched YouTube videos, and ordered a book off of Amazon. I called the only Ponseti-certified pediatric orthopedist in the Phoenix metro area and scheduled a consultation appointment for early August (more on that later.)
At 22 weeks pregnant, I had a Level II ultrasound at a perinatalogist's practice to confirm the diagnosis and also to check for any other issues (sometimes, clubfoot can be an indication of a larger problem such as spina bifida). Thankfully, everything else looked great and the clubfoot was the only anomaly the tech could see. These are the pictures that confirmed the diagnosis:
While I did experience some disappointment that the diagnosis was confirmed (I'd nursed a tiny hope that, perhaps, the findings of the first ultrasound had been some weird fluke and the baby's feet were not clubbed), I was relieved to know that there were no larger issues or syndromes at play.
Now that several months have passed since the baby's diagnosis, I'm feeling more confident about the journey ahead. I know it won't be easy, but nothing worth doing ever is. In my next post I'll share some of the resources and information that have helped me learn more than I ever thought I'd know about clubfoot.
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