See my main blog, The Catholic Working Mother, for more info and updates about our new clubfoot journey!
Friday, September 13, 2019
The Saga Begins... Again
Well, Peter is among the 5% of kids with clubfoot who relapse, so we are walking this road all over again.
See my main blog, The Catholic Working Mother, for more info and updates about our new clubfoot journey!
See my main blog, The Catholic Working Mother, for more info and updates about our new clubfoot journey!
Tuesday, September 13, 2016
Good news!
Peter had a check up about a month ago -- overall he's doing well. One of his feet is a little stiffer than the other, so we're going to keep doing stretches at home and re-evaluate in six months.
In other exciting news -- Peter has a new little brother or sister due in January, and we found out last week that s/he does not have clubfoot! We only had a 4% chance of a sibling re-occurance, but I was still worried going in. However, his/her little feet look perfect, as does the rest of him/her. :)
In other exciting news -- Peter has a new little brother or sister due in January, and we found out last week that s/he does not have clubfoot! We only had a 4% chance of a sibling re-occurance, but I was still worried going in. However, his/her little feet look perfect, as does the rest of him/her. :)
Friday, August 21, 2015
Peter's finally walking!
I just realized I never updated this blog with our sad news from June. Unfortunately, we lost Peter's baby brother or sister to miscarriage on June 1.
We are healing, slowly but surely.
In happier news, I'm excited to report that Peter is finally walking!
Several months ago I contacted AZ Early Intervention because I was worried that Peter was 18 months old and still not walking. It took a while, but we finally got him set up with some physical therapy sessions. After only two sessions, something clicked with him and he started walking like he'd been doing it for months. I took this video the other day and I'm so proud of the progress he's made. Take that, clubfoot!
He's going to have one more session at the end of this month just to tie things up and at that point they'll likely be discontinued. So proud of my sweet boy!
We are healing, slowly but surely.
In happier news, I'm excited to report that Peter is finally walking!
Several months ago I contacted AZ Early Intervention because I was worried that Peter was 18 months old and still not walking. It took a while, but we finally got him set up with some physical therapy sessions. After only two sessions, something clicked with him and he started walking like he'd been doing it for months. I took this video the other day and I'm so proud of the progress he's made. Take that, clubfoot!
He's going to have one more session at the end of this month just to tie things up and at that point they'll likely be discontinued. So proud of my sweet boy!
Wednesday, June 3, 2015
Friday, April 24, 2015
Exciting News!
Peter is a big brother! We are expecting our sixth child on December 12, 2015.
It's been kind of a rough pregnancy so far, as I won't take Zofran this time around, but I think I've mostly got a handle on the nausea now. (More details about that here.)
We'll have our anatomy scan in late July if all goes well (I've had two past miscarriages so I never assume anything). We only have a 4% chance of having another baby with clubfoot, and if the Zofran was indeed the culprit our chances of having another clubfoot baby are pretty slim. Regardless, we'll love him/her unconditionally.
Peter had a follow-up at Phoenix Children's yesterday. The orthopedist was a bit concerned because his feet still have a tendency to turn in slightly. But he may outgrow it as he starts walking more, so we'll take a wait and see approach. He still isn't walking on his own -- he cruises along furniture and stands independently, but hasn't quite made the leap to walking unassisted yet. We also picked up his fourth pair of boots!
It's been kind of a rough pregnancy so far, as I won't take Zofran this time around, but I think I've mostly got a handle on the nausea now. (More details about that here.)
We'll have our anatomy scan in late July if all goes well (I've had two past miscarriages so I never assume anything). We only have a 4% chance of having another baby with clubfoot, and if the Zofran was indeed the culprit our chances of having another clubfoot baby are pretty slim. Regardless, we'll love him/her unconditionally.
Peter had a follow-up at Phoenix Children's yesterday. The orthopedist was a bit concerned because his feet still have a tendency to turn in slightly. But he may outgrow it as he starts walking more, so we'll take a wait and see approach. He still isn't walking on his own -- he cruises along furniture and stands independently, but hasn't quite made the leap to walking unassisted yet. We also picked up his fourth pair of boots!
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| He loved the wall toys at the pediatric orthotics office. |
Friday, January 23, 2015
Zofran and Clubfoot
First, a brief update - Peter is 15 months old now, and he is doing great. His last appointment was mid-December, and his orthopedist said his feet look good. He got his third pair of new boots on Wednesday (he's now in a size 3). Putting them on is a bit more difficult because he's much more mobile - he thinks it's hilarious to try and throw himself off of the bed or changing table as I'm trying to strap on his boots.
Now, on to the reason I'm emerging from my (unintentional) hiatus.
In one of the clubfoot support groups I'm in on Facebook, someone posted a link to info about a class action lawsuit related to women who took Zofran during pregnancy and then had a child with a birth defect. I'd read about Zofran potentially causing cleft palate and heart abnormalities a few months ago, but I had no idea that clubfoot was also a defect that Zofran may allegedly cause. (The link has not been proven, it is just suspected at this point.)
I did take Zofran regularly in the first trimester while I was pregnant with Peter (I also took it regularly during my pregnancy of his older brother, Gabriel, who does not have clubfoot). So, I filled out the form and submitted it. I received a call literally two minutes later from a lawyer, had a 30-minute phone conversation, and ended up signing paperwork to participate in a class action lawsuit, should one be filed.
I have the option to drop out at any time if I feel the need to do so. It's a contingency case, meaning the lawyers will only get paid if the lawsuit prevails and there is some kind of monetary reward (in that event, they get 40% and I get 60% of whatever the individual reward is).
But I didn't sign up to participate because of the money - if there is a link between Zofran and clubfoot (or other defects), I want it publicized, and I want the company held accountable for making sure that other moms know the risk. Women need to be able to make an informed choice about taking it during pregnancy. I wish I had known. Now, because of the suspected link, I will not take it during any future pregnancies, despite the crippling nausea I always experience. I don't know if it caused Peter's clubfoot, but I'd rather not take the risk if there is one, just in case it was the cause.
Anyway, if you are a clubfoot mom and you took Zofran in the first trimester, as I did, you may want to find out more information about the lawsuit. You can fill out a questionnaire here, and the law firm will call you if they think you are eligible to participate.
Bear in mind that if you are chosen to participate, and they end up filing a case, you will be involved in litigation. They will likely comb through your medical records from your pregnancy and try to find out if you did anything else that could have caused clubfoot. Affidavits, depositions, and maybe even court testimony may be required. But again, read the contract carefully before you sign (if given the opportunity) so you know exactly what you are getting into.
He isn't walking yet, but he crawls all over the place (even with the BnB on!) and tries to pull himself up (usually when the dishwasher is open so he can try and throw dishes across the room). I tend to have late walkers (my oldest son didn't walk until he was 18 months) so I'm not worried.
Now, on to the reason I'm emerging from my (unintentional) hiatus.
In one of the clubfoot support groups I'm in on Facebook, someone posted a link to info about a class action lawsuit related to women who took Zofran during pregnancy and then had a child with a birth defect. I'd read about Zofran potentially causing cleft palate and heart abnormalities a few months ago, but I had no idea that clubfoot was also a defect that Zofran may allegedly cause. (The link has not been proven, it is just suspected at this point.)
I did take Zofran regularly in the first trimester while I was pregnant with Peter (I also took it regularly during my pregnancy of his older brother, Gabriel, who does not have clubfoot). So, I filled out the form and submitted it. I received a call literally two minutes later from a lawyer, had a 30-minute phone conversation, and ended up signing paperwork to participate in a class action lawsuit, should one be filed.
I have the option to drop out at any time if I feel the need to do so. It's a contingency case, meaning the lawyers will only get paid if the lawsuit prevails and there is some kind of monetary reward (in that event, they get 40% and I get 60% of whatever the individual reward is).
But I didn't sign up to participate because of the money - if there is a link between Zofran and clubfoot (or other defects), I want it publicized, and I want the company held accountable for making sure that other moms know the risk. Women need to be able to make an informed choice about taking it during pregnancy. I wish I had known. Now, because of the suspected link, I will not take it during any future pregnancies, despite the crippling nausea I always experience. I don't know if it caused Peter's clubfoot, but I'd rather not take the risk if there is one, just in case it was the cause.
Anyway, if you are a clubfoot mom and you took Zofran in the first trimester, as I did, you may want to find out more information about the lawsuit. You can fill out a questionnaire here, and the law firm will call you if they think you are eligible to participate.
Bear in mind that if you are chosen to participate, and they end up filing a case, you will be involved in litigation. They will likely comb through your medical records from your pregnancy and try to find out if you did anything else that could have caused clubfoot. Affidavits, depositions, and maybe even court testimony may be required. But again, read the contract carefully before you sign (if given the opportunity) so you know exactly what you are getting into.
Friday, October 10, 2014
A Long Overdue Update
Yes, it's been a while!
Today is the one year anniversary of the day he got his first casts.
Then....
Now:
We're in maintenance mode right now. We put on the boots at night, right before bedtime, and take them off again in the morning. Same old, same old. :)
Since he got his new boots back in May, we've had some issues with pressure sores, so we finally got some pressure saddles from the orthotics shop (see the white things shaped like a Pringle under his middle strap on the left boot) and those seem to be helping.
I read this post about the "Bloody Boots and Bar" and thought it was spot on. The BNB can be annoying at times (especially when the poor kiddo has things like pressure sores happening) but we're so thankful that the treatment is, all things considered, relatively easy and non-invasive.
Monday, June 2, 2014
It's World Clubfoot Day!
An anniversary passed a few weeks ago that I didn't realize at the time. May 17 was the one year anniversary of the day Peter's bilateral clubfoot was detected via ultrasound. If I could have known then what I know now, I would not have cried myself to sleep that night.
The first few months were the hardest, but we have come such a long way in such a short time. Today, Peter is almost 8 months old. He wears the boots & bar for 12 hours at night, and that's it. No one even knows he has clubfoot unless I tell them.
To any mom whose child has been newly diagnosed with clubfoot and who might be reading this, I want to tell you something: it's going to be okay. It really is. The casting will be tough, the tenotomy surgery is scary as hell, and adjusting to the boots and bar will take some work, but it's going to go by so fast you won't even realize it. You'll blink, and all of a sudden your baby will only be wearing the boots and bar at night and it will just be another part of a typical bedtime routine. And there might be relapses, maybe even other surgeries down the road, but you will get through it because you are strong, and so is your child.
Ponseti International Association (PIA) designated June 3rd as World Clubfoot Day. The date was chosen to commemorate the birthdate of Dr. Ignacio Ponseti, (1914-2009) the developer of the Ponseti Method to treat clubfoot. The goal of World Clubfoot Day is to raise awareness about clubfoot disability and its prevention using the Ponseti Method, a non-surgical treatment that includes gentle manipulation of the feet followed by the application of plaster casts and temporary bracing.
Wednesday, May 21, 2014
Check-up Day!
Peter had a check up at the orthopedist's office today. We saw his new doctor, Dr. Belthur. The doctor said his feet look great!
We also got a prescription for new Mitchell shoes, because he has just about outgrown his old ones. His bar needs to be lengthened, too.
In non-clubfoot news, he is sitting up by himself and he has two teeth (both on bottom). Not quite crawling yet, but he is rolling around all over the place.
He is a growing boy! So proud of my little man.
Tuesday, April 1, 2014
Boots and Bar Bling!
Peter has some new boots and bar bling! I ordered a bar bumper (basically, a cover for the bar portion of his brace) from Taz at Bar Bumpers and it came today.
Peter was so excited!
I wish I'd ordered it earlier -- say, in December when he first got his bar -- but better late than never. It's so cute and we both love it. Hopefully it'll help protect Mommy's tummy from getting whacked when we nurse without his sleep sack on. :)
Peter was so excited!
Here's a close-up of the cover:
I wish I'd ordered it earlier -- say, in December when he first got his bar -- but better late than never. It's so cute and we both love it. Hopefully it'll help protect Mommy's tummy from getting whacked when we nurse without his sleep sack on. :)
Friday, March 21, 2014
Boots and Bar Update - Nighttime Wear Only!
We've successfully transitioned to only nighttime wear of the boots and bar as of March 12! Per the advice of Dr. Segal, we went straight to 12-hour nights, with 12 hours free during the day, and Peter has adjusted extremely well. He loves playing with his feet and it's so fun to watch him!
To make things easier, we put the brace on around 7:00pm, and my husband takes it off right before they leave the house for daycare at 7:00am -- that way our daycare providers don't have to worry about it and we can just leave the brace at home. On weekends, I take it off whenever we get up in the morning, usually between 7am-8am.
Our next check-up is May 22, but sadly it won't be with Dr. Segal. :( A few days ago, I was told by another clubfoot mama from PCH that Dr. Segal is moving to Wisconsin. Thankfully, there is another Ponseti-certified doctor at PCH (otherwise we'd have to drive to Tucson), and I've met him before -- he did Peter's second casting -- but the news still made me sad. Dr. Segal was so wonderful throughout the entire process and it's sad to think he won't be able to see Peter's progress as he grows. Maybe I'll send him the link to this blog. :)
To make things easier, we put the brace on around 7:00pm, and my husband takes it off right before they leave the house for daycare at 7:00am -- that way our daycare providers don't have to worry about it and we can just leave the brace at home. On weekends, I take it off whenever we get up in the morning, usually between 7am-8am.
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| Taken on St. Patrick's Day, March 17. He's not wearing the boots & bar in this pic but is still holding his feet in the brace position. Force of habit, no doubt! |
Thursday, March 6, 2014
2007 CMN Miracle Awards: Dr. Ignacio Ponseti
How cool is this? LeVar Burton (a.k.a. Geordi LaForge in Star Trek: The Next Generation) and Dr. Ponseti in the same video! As a huge Star Trek fan, I'm geeking out.
I wish I could have had the opportunity to meet Dr. Ponseti in person. What an amazing man. I'm so grateful for what he's done for Peter, and all the children with clubfoot.
Thursday, February 20, 2014
Boots and Bar Update
We had a follow-up visit at Phoenix Children's Hospital this morning - Peter's first since getting the brace in December. (As I mentioned previously, it was supposed to be last month but we had to reschedule due to insurance issues.)
There was something going on in the examination rooms, not sure what, so Dr. Segal actually came out into the waiting room to look at Peter's feet! His assistant jokingly called it curbside service.
After we took off the boots and bar, he examined Peter's feet and pronounced them perfect. Best of all, he said we could start part-time brace wear as of March 12! That means Peter only needs to wear the brace for naps and nighttime, or 12 hours at night, whichever is easiest for our schedule (I think we'll have him in the brace from 6pm to 6am so that our daycare doesn't have to deal with putting the brace on or taking it off.)
Peter goes back for another check-up on May 22.
He also had his 4-month well baby check today. Unfortunately their scale was broken so I'm not sure what he weighs (I'm going to weigh him myself later tonight), but otherwise the visit was a success. He was flirting and cooing with the nurse and doctor the entire time, and barely cried at all during his vaccinations.
There was something going on in the examination rooms, not sure what, so Dr. Segal actually came out into the waiting room to look at Peter's feet! His assistant jokingly called it curbside service.
After we took off the boots and bar, he examined Peter's feet and pronounced them perfect. Best of all, he said we could start part-time brace wear as of March 12! That means Peter only needs to wear the brace for naps and nighttime, or 12 hours at night, whichever is easiest for our schedule (I think we'll have him in the brace from 6pm to 6am so that our daycare doesn't have to deal with putting the brace on or taking it off.)
Peter goes back for another check-up on May 22.
He also had his 4-month well baby check today. Unfortunately their scale was broken so I'm not sure what he weighs (I'm going to weigh him myself later tonight), but otherwise the visit was a success. He was flirting and cooing with the nurse and doctor the entire time, and barely cried at all during his vaccinations.
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| So excited to start part-time wear! |
Monday, January 27, 2014
Excellent Article, and an Update
Excellent article about clubfoot treatment on NPR today!
The casting technique was developed by Dr. Ignacio Ponseti at the University of Iowa in the 1950s. The Spanish physician discovered that if an infant's feet were slowly turned out over the first few months of life, the foot could be coaxed into a normal position.
Unlike the traditional surgical method, the Ponseti method is pretty much painless, and patients who receive it usually have a complete recovery, with no long-term discomfort. It also costs less. Ponseti spent the next 50 years tirelessly trying to get other doctors to accept it, but with little success.Read or listen to the story here.
The blog has been quiet because I don't have too much to report. No news is good news, right? :) The brace is just part of our routine now. It has gotten easier to buckle it. At first I was afraid I'd never get the hang of it, but it gets easier each time. I can get it buckled pretty fast now.
I usually take it off an hour before bedtime, and make it our bedtime routine put the boots back on, swaddle him (with the upper part of the swaddle blanket only), put him in the sleep sack, and nurse him to sleep. The brace doesn't seem to bother him at all.
One evening, during his free hour, he was rather fussy. Once I put the brace back on, he calmed down and seemed happier. That makes me a little apprehensive for when we go down to only nighttime wear, but I'm sure he'll adjust to that when the time comes.
We haven't had our one-month bracing follow-up visit yet. My husband unexpectedly switched jobs in mid-January, and his insurance coverage ended effective his last day of work. His new coverage doesn't start for a few more months, so we've switched to my work insurance, but that isn't effective until February 1. We had to reschedule his visit for February 20th.
The Beco Gemini is working very well for babywearing with the brace. We went on a two-mile hike this weekend and Peter seemed to enjoy it!
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 |
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