July 31st was our consultation with Dr. Kayes, a pediatric orthopedic doctor at the Peyton Manning Children's Hospital at St. Vincent's Hospital in Indianapolis. It felt like we had been waiting so long to talk to someone. I was a nervous wreck before the appointment, but could not wait to get down there and meet him.
Up until about the week before, I had plans to go by myself. That made me sad, as I already felt so lonely and overwhelmed by this choice, but it made sense. Jay didn't need to take any time off of work that wasn't necessary. However, after talking with Jay more about Oliver's feet, he decided to take the afternoon off and we would take Oliver with us to see if the doctor would look at Oliver's feet also. We weren't asking him to diagnose anything, but just wanted his opinion. If he felt like something was wrong, we would come back for an appointment just for Oliver. I prayed that he would tell us Oliver's feet looked good and that wasn't necessary.
I barely slept the night before the appointment. I wasn't exactly sleeping much lately anyway, so that wasn't unusual. Stress was really taking a toll. The morning of our appointment, I took Oliver to his speech therapy and then dropped off Lucy with my mother-in-law. Thanks to lovely pregnancy hormones I was so sad to drop her off. I usually don't spend a lot of time away from her and I hated to leave her for the day.
Oliver and I came home and got Jay and headed to Indianapolis. We had plenty of time which was nice since I wasn't exactly sure where we were going. Once we got closer to the hospital, I realized I had been down there before (in college). The hospital campus is pretty big but I recognized exactly where we were. Thankfully there was a parking garage directly across from the entrance we were supposed to use, and the orthopedic office was right inside of that entrance. Very, very easy.
We waited f.o.r.e.v.e.r. Or at least it felt that way. A friend of mine texted to see how our appointment went, and I vented about how we were still waiting. We were in the waiting room almost an hour (we got there a little early, so probably 45 minutes past our appointment time) before we got called back. I understand that doctors get behind, especially by that time in the afternoon, but I was such a nervous wreck that it was driving me nuts. Plus, my back and my hips and everything else were hurting from the long drive down. Cue the pregnancy crankiness. Thankfully they had some pretty cool video games in the waiting area that Oliver enjoyed playing.
We finally got called back and the nurse asked us some basic questions. Oliver was already starting to get wound up being in the room and climbing up and down on the exam table. I could feel my stress level rising and I was just praying he wasn't going to be completely crazy during our talk with the doctor. We had explained to him how important this was and that we needed to be able to talk to the doctor. We even let him bring in his Nintendo 3DS to hopefully keep him occupied.
Finally Dr. Kayes came in. We introduced ourselves, and Oliver, and said that he was our first clubfoot child. Oliver was sitting on the exam table with his shoes off, and right away Dr. Kayes started making conversation with Oliver and moving his feet around. I kind of held my breath to see what he said. After playing with them some more, he said Oliver's feet looked great! I think Jay and I both let out a sigh of relief. I explained that he hadn't seen a doctor for awhile so we were hoping to hear that. He had Oliver stand up and turn around and said although his right foot was a little tighter than his left that they looked great. He was amazed by Oliver's treatment (no tenotomy, very early release from braces, etc) and asked a lot of questions about that. He even looked at Jay's foot (Jay was wearing sandals) and asked a couple of questions about what we knew about his surgery and treatment as well.
Even though we had to wait awhile for our appointment, I felt like Dr. Kayes made sure that we had plenty of time with him. He apologized that we had to make such a drive to get to him, and I kind of laughed and said, "Well, its either here to you or to St. Louis to see Dr. Dobbs...this is much closer." I explained that I had been in touch with Dr. Dobbs, and Dr. Kayes said he had a couple of patients that he has actually sent to St. Louis to Dr. Dobbs for a second opinion. He said he doesn't hesitate to get in touch with him if there is ever a situation where he feels he could use Dr. Dobbs' expertise. He acknowledged that Dr. Dobbs is a clubfoot expert, and I thought it was great that he utilizes him when necessary. Dr. Kayes was very humble, and kind. He asked several times what other questions we had, and how he could help us feel comfortable with what to expect at this point. I told him about how Oliver had KAFO braces, and asked if he ever used them. He said no, not really, because of the long-term benefits of the bar and boots. That brace is really the Ponseti standard, so I understand why he uses that. I asked if we could get the Dobbs bar (which is hinged and the baby can move his feet independently instead of always together like with the solid bar), and he said we could. That was good to hear. He asked how we knew about the bar and boots if Oliver had used KAFO braces. I had to laugh a little and say, "well, the Internet." If he only knew how many hours upon hours I had spent researching!
During all of this, Oliver was much more...social, than I expected. That's one way to put it. He kept going up to Dr. Kayes and saying, "Hey! Look at my game, look at this level!" and showing him something on his 3DS. I wanted to crawl under my chair, and drag Oliver with me. But Dr. Kayes took it all in stride. He would smile and even ask Oliver, "Oh yeah? Let me see that again." He was so nice and easy-going with Oliver that it really put me at ease.
The treatment Dr. Kayes described was pretty much exactly what I expected. He said just to give him a call after the baby is born, and we'll set up appointments. The first cast will go on a week or two after he is born; whenever I feel up to making the trip. We'll change out casts once a week for several weeks until the feet are positioned correctly. There's a good chance Max will need a tenotomy, but I'm still praying we can avoid that like Oliver did. If he does need it, it'll be an in-office procedure and not in an operating room. I was relieved to hear that. A final cast will go on after that and stay on approximately 3 weeks. After that Max will start wearing the bar and boots brace. The first three months of brace wear will be 23 hours a day, 7 days a week. After the first three months, we will slowly wean him down: one month 20-22 hours, one month 18-20 hours, one month 16-18 hours and one month 14-16 hours. Eventually he'll get down to just wearing them at bedtime until he is about 4 years old. That is the part that I really struggle with. I can't imagine having a child in braces at bedtime for that long when Oliver was done so early. But I can't let myself go there. Not yet. Max isn't even born yet; I can't let myself imagine him as a toddler in braces at bedtime.
I left the appointment feeling much, much better than I expected. I'll admit, I went in with a "this guy is going to need to impress me" attitude. I really looked at the appointment as something to check off my list to say I had looked at all of our "local" options before deciding that we needed to see Dr. Dobbs in St. Louis. How we were going to afford to get there, I didn't know. How we were going to arrange childcare, I had no idea. But I didn't expect to like Dr. Kayes, to be really honest. I was surprised at how much I liked him and felt at ease with him. Jay and I both felt comfortable with him, and I was so glad that Jay had been part of that day's appointment. I needed his input.
I left the appointment feeling like a slight weight had been lifted. Finally, we had a doctor. I still had this nagging feeling that I wished we could be making the trip to St. Louis. I really liked Dr. Dobbs, and I knew he was one of the very best. But logistically, this made so much more sense. And if we ever feel like we need some extra help or attention, we know we can go to St. Louis.
After the appointment, I was able to meet up with a friend who lived in Indianapolis and had a bunch of nursing and baby stuff for me. We had actually never met in person before despite being in touch pretty much daily on facebook, text messages, etc. Amal was so super sweet to wait for us during our appointment. It was lovely to meet her, and I hope that during some of our many other appointments we will be able to see her again.
The drive home was exhausting. Physically I was in a lot of pain...Jay had gone into work at 2:30 that morning and worked 8 hours before leaving so, understandably, I did the majority of the driving that day. I called both of my parents to let them know how our appointment had gone, but I wasn't as talkative as I normally would have been because I was just so drained. It seemed like two months worth of stress, exhaustion, and anxiety had caught up to me. We had hoped to make it home in time for Oliver to get to play in his soccer game, but we definitely did not. I couldn't wait to pick up our Lucy girl and just get home.
I went to bed that night with somewhat of a clear mind for the first time in awhile. I posted this as my facebook status:
An
exhausting day, both mentally and physically. But a very good one. I'm
so thankful for all the prayers and messages we received today. I feel
so much relief that today is over! Two months ago I was devastated with
the news we had just received and for the first time since then I am
going to bed with some peace of mind. Thank you Lord.
I expected to wake up the next day and feel so much better. But to be honest, the next day I felt awful. Physically, I was exhausted and hurting all over. It was like I was forcing myself to just move and take one step after another. Mentally it was like all I could think was very basic thoughts about what needed to be done and paid attention to in that very moment. The kids and I got through the day with me functioning on a very basic "need to do it" level. I think the stress, anxiety, build-up, fatigue, and worry of the past two months had left me stripped of everything. I wanted to feel relieved and happy about the day before but felt very numb. It had all certainly taken its toll.
Showing posts with label Max. Show all posts
Showing posts with label Max. Show all posts
Tuesday, August 20, 2013
Tuesday, August 13, 2013
Our Search for a New Orthopedic Doctor
After I found out that Oliver's orthopedic doctor was no longer practicing, I immediately went into overdrive mode to find a new doctor. Finding out that Dr. Cummiskey wasn't going to be our baby's doctor turned a difficult situation into one that became almost suffocating for me.
If I was angry that our baby was going to have to go through this, I was furious that we had this struggle thrown on top of everything. I felt completely overwhelmed and burdened by the need to find a new doctor. I knew that Oliver's treatment had worked wonderfully for him, but that most doctors would do things differently. I had never heard of another clubfoot baby having KAFO braces (they all seemed to have the awful looking bar and boots brace) and they all seemed to wear them for a much longer time. Suddenly my one comfort of knowing what to expect was stripped from me.
When I talked to my midwife after the ultrasound that revealed clubfoot, I said I didn't really have a need or desire to see the perinatologist that we saw with Oliver to look at the foot again. I knew what clubfoot looked like, and I know what I saw. All he could tell me was what I already knew.
Once I knew we would need to see another doctor for the baby's treatment, I asked for an appointment with Dr. Wheeler, the only perinatologist in our area. I figured he would be able to give us a name or a hospital to look into. Thankfully I was able to get in to see him the week after my first ultrasound.
I went to the appointment by myself. I didn't know exactly what Dr. Wheeler would do; I half expected to feel like it was a waste of time. But I'm very glad that I went. They did another full ultrasound, checking everything out. I was so glad to see again that our baby boy looked very healthy. I was praying that God had healed the baby's foot and we could move on...but that wasn't the case. The foot looked exactly the same. Dr. Wheeler came in to look at the ultrasound and agreed that it looked like clubfoot. He asked the tech if it was an isolated clubfoot (not related to any other condition that we could see), and she said yes. He said how that was a very good thing, and I'm sure for him a clubfoot is mild. Like I've said before, I don't envy his job. I can't imagine dealing with the things that he sees everyday. I only saw one other pregnant mother at his office while I was there, and I couldn't help but wonder why she was seeing Dr. Wheeler. My heart ached for her just because she was there.
After my ultrasound, Dr. Wheeler had me come into his office to talk. Basically, he said how awful it was that Dr. Cummiskey was ill and it still took him by surprise to think about it. He said that it was a relatively new development, and he didn't have the name of another doctor to tell me. (Crap.) That wasn't really what I wanted to hear. He called someone while I was there and they said that basically they were referring anyone dealing with clubfoot to Indianapolis to either St. Vincent's Children's Hospital or Riley Hospital for Children. Dr. Wheeler said that if it was his child, he would go to Riley...but that he didn't know any of the doctors. Just that the hospital is really good and he would trust in their care. He gave me a website to look at that listed their doctors and said to look for an orthopedic doctor that was specialized in pediatrics. He said it was sad that in the second biggest city in the state (one that has a large orthopedic practice), that no one was sub specialized in pediatrics and knew how to treat clubfoot. I tried to be thankful that he believed there was someone in Indianapolis that we could see; a two hour drive was far from ideal but I knew it could be worse.
From the time of my first appointment that showed clubfoot until the time that I finally had a consultation with a doctor in Indianapolis was exactly two months. I spent every day of those two months on the internet researching. Hours upon hours researching. Because I knew that our baby would probably have different braces than Oliver had, I felt like I needed to research the entire Ponseti method again. I could barely sleep some nights. I'd wake up thinking of something else to look up. Having the internet on my phone was as much a blessing as a curse during this time. Just when I'd try going to bed I'd think of something to research and end up being awake for another two hours as one search led to another. I felt like I didn't have a choice; my baby needed me to find a doctor. I found support groups and other mothers who had been through this as well. Those were both good and bad...it was nice to talk to others, but at the same time, they were often struggling with things that I didn't even know could happen. Relapses? Nighttime braces at ages 3, 4, 5, and older? Pressure sores? I began to feel buried under all the possibilities of what could go wrong.
In the early spring, we had Oliver evaluated for some physical therapy. He was doing a lot of tiptoe walking and in toe-ing. He seemed to be doing well, but the more I researched about relapses the more obsessed I became with his feet. Was he relapsing? Did he walk on his tiptoes out of habit, or was his tendon too tight for him to walk normally? Should he have had the tenotomy as a baby? Did he need it now? Oh my gosh, what if Oliver needed surgery and was in casts? I couldn't carry him or handle him in leg casts when I was this pregnant! In my mind I had gone as far as to figure out when I would be able to schedule a surgery for him so that I didn't have him and the baby in casts at the same time. I was a total mess. We decided that once we found a doctor for the baby, we would have Oliver looked at as well. The whole thing just made me sick.
After doing research on the website that Dr. Wheeler gave me, I finally called Riley and St. Vincent's to get consultations set up. I was hoping that I'd be able to get into both on the same day to minimize driving time. I called St. Vincent's first and asked to get in to see Dr. Kayes. He was the name that a couple of moms that I had talked to online gave me so I figured I should call him. I really didn't think we'd end up going there since Dr. Wheeler had said Riley was where he would recommend. But I figured I should consider all our options to make sure we were making the best choice. The receptionist that I talked to was nice but not very personable. I wouldn't be able to get in to see him until July 31, and that seemed like an eternity away.
Then I called Riley Hospital. The ladies that I talked to were extremely friendly and compassionate about what we were facing. But I was very surprised to find out that only one doctor would meet with me prenatally. (And it was a doctor that I had heard not so great things about, and I already knew I wouldn't go to him.) I was so surprised that they wouldn't see moms during pregnancy. When I asked why, the receptionist said that the doctors didn't see a reason to because there was nothing that could be done until the baby was born, and sometimes ultrasounds were wrong. I thought that was so strange. The receptionist that I talked to was able to give me a lot of information about all of the doctors at Riley that treated clubfoot. (They each did things a little differently...some did the tenotomy in office, some did it in an operating room; some did hard plaster casts and some did soft casts.) They offered to send me some information on clubfoot, even though they knew we already had been through this with our older son. They were so extremely helpful and I was really leaning towards going with them. But I couldn't get over the idea that I was not able to meet with a doctor before I would be bring my baby to him to be treated. I felt like I really wasn't making much progress.
In the midst of all of this, I learned of an excellent clubfoot doctor in St. Louis, Dr. Matthew Dobbs. At first I was overwhelmed and emotional about the idea that maybe we would need to travel that far to receive excellent care. I had no idea how we would afford it. Jay couldn't take that much time off of work to go with us. If it was a one time surgery or even a surgery and then follow-up visits, it would be one thing. But I was overwhelmed at the idea of doing it weekly with a newborn and taking care of two other children. After I had Lucy, I went back to doing everything so quickly that it delayed my recovery by a lot. Physically I felt awful for weeks after I had her. I had been determined that I wouldn't do that again, and would spend the first several weeks of my next baby's life not running around like crazy. I knew life would go on and it wasn't like I was going to not leave the house; but I was going to respect what my body had been through and not do anything I didn't have to do. Obviously that all went out the window when I realized we would be dealing with clubfoot and driving to Indianapolis each week...but St. Louis???
I checked online and it was about a six hour drive. That didn't count in numerous stops with a newborn. Breastfeeding in the early weeks takes forever...I knew each stop for the baby to eat could last at least an 45 minutes to an hour or more. I would most likely have to go by myself most of the time and the thought exhausted me. I knew Oliver would be ok staying with someone else if I needed to be gone overnight, but Lucy...Lucy would not do so well. She would be about two when I would need to start travelling and I have never been away from her overnight. She doesn't sleep well anywhere but her bed, and with Jay's work hours it was going to be hard to be able to have her sleep in her bed but then up and ready for someone else to help with her during the day by the time Jay was gone for work. UGH.
And then I started feeling guilty...if Dr. Dobbs in St. Louis was the best, how could I deny our baby that? How could I not be willing to make sacrifices for a short period to time to ensure that his care was absolutely excellent? People from around the world travelled to St. Louis...how could I complain about a few hours? I would see other clubfoot moms posting about the travel they went through to get to Dr. Dobbs because "only the best" for their baby. It just made my stomach hurt--how could I want anything less??? I actually got in touch with Dr. Dobbs via private message on his facebook page, and he didn't have any recommendations for doctors in Indiana but was so extremely kind to talk to. It made me want to see him even more.
I knew that Dr. Cummiskey had closed his practice, but on a whim one day I decided to try to call his office anyway. There was a recorded message from his nurse (and oh, when I heard her voice it seemed impossible that it had been so long since we had seen her) saying that his practice had closed but if we had any questions or needed records to call her at her new office. So I called and left a message, telling her who I was and that I was wondering if Dr. Cummiskey had any recommendations for a new clubfoot doctor.
Nurse Deb called me back the next morning, and it was so, so good to talk to her. She remembered Oliver and we talked for quite awhile. She said that they were recommending for patients to go to Dr. Kayes, the doctor I had set up a consult with at St. Vincent's hospital. I was a bit surprised, and told her I had thought maybe Riley would be our best bet. She said that they actually hadn't seen the best results come out of Riley and she was also shocked that their doctors would not meet with me prenatally. She had a lot of good things to say about Dr. Kayes. A few weeks later I stopped in with the kids to see her and get Oliver's records. It brought back so many memories to see this sweet nurse who had been there with us during Oliver's care.
After talking with Nurse Deb, I felt like if we stayed with a doctor in Indiana, we would see Dr. Kayes and not a doctor at Riley Hospital. I still had doubts about Dr. Kayes, though, and it was hard for me to not think about how we could make the trips to St. Louis work. I had heard of an organization called Angel Flights, and found an organization in Indiana called Lifeline Pilots. Its an organization that flies people to where they need to go to get medical care. There's an application to fill out and not everyone gets accepted. I figured we would go see Dr. Kayes and then I'd come home and see if we could get to St. Louis.
Thankfully, our visit with Dr. Kayes in Indianapolis went much better than I expected. I will do a full post soon. The burden of finding a new doctor has been unexpectedly heavy. I felt (and to an extent, still feel) an enormous amount of pressure to make the right decision. I just pray that we have made the right one.
*****
One more quick thing, unrelated to our search for a new doctor. But I recently found this ultrasound image while looking online, and wanted to share it. This is from another blog of a family who has a clubfoot baby. Unfortunately, I do not have ultrasound images of either Oliver's clubfeet or Max's clubfoot. I really, really wish that I did. But I wanted to share this so that people can see what we saw on the ultrasound.
See the leg bone, and the way the foot turns in instead of extending straight forward? The foot turning in like that indicates clubfoot. With Oliver, both feet turned inwards and we could see that via ultrasound. With baby Max, his left foot extended straight out from his leg, but his right foot turned in. As soon as I saw our ultrasound and saw his foot look very similar to the one pictured above, I knew he had a clubfoot.
If I was angry that our baby was going to have to go through this, I was furious that we had this struggle thrown on top of everything. I felt completely overwhelmed and burdened by the need to find a new doctor. I knew that Oliver's treatment had worked wonderfully for him, but that most doctors would do things differently. I had never heard of another clubfoot baby having KAFO braces (they all seemed to have the awful looking bar and boots brace) and they all seemed to wear them for a much longer time. Suddenly my one comfort of knowing what to expect was stripped from me.
When I talked to my midwife after the ultrasound that revealed clubfoot, I said I didn't really have a need or desire to see the perinatologist that we saw with Oliver to look at the foot again. I knew what clubfoot looked like, and I know what I saw. All he could tell me was what I already knew.
Once I knew we would need to see another doctor for the baby's treatment, I asked for an appointment with Dr. Wheeler, the only perinatologist in our area. I figured he would be able to give us a name or a hospital to look into. Thankfully I was able to get in to see him the week after my first ultrasound.
I went to the appointment by myself. I didn't know exactly what Dr. Wheeler would do; I half expected to feel like it was a waste of time. But I'm very glad that I went. They did another full ultrasound, checking everything out. I was so glad to see again that our baby boy looked very healthy. I was praying that God had healed the baby's foot and we could move on...but that wasn't the case. The foot looked exactly the same. Dr. Wheeler came in to look at the ultrasound and agreed that it looked like clubfoot. He asked the tech if it was an isolated clubfoot (not related to any other condition that we could see), and she said yes. He said how that was a very good thing, and I'm sure for him a clubfoot is mild. Like I've said before, I don't envy his job. I can't imagine dealing with the things that he sees everyday. I only saw one other pregnant mother at his office while I was there, and I couldn't help but wonder why she was seeing Dr. Wheeler. My heart ached for her just because she was there.
After my ultrasound, Dr. Wheeler had me come into his office to talk. Basically, he said how awful it was that Dr. Cummiskey was ill and it still took him by surprise to think about it. He said that it was a relatively new development, and he didn't have the name of another doctor to tell me. (Crap.) That wasn't really what I wanted to hear. He called someone while I was there and they said that basically they were referring anyone dealing with clubfoot to Indianapolis to either St. Vincent's Children's Hospital or Riley Hospital for Children. Dr. Wheeler said that if it was his child, he would go to Riley...but that he didn't know any of the doctors. Just that the hospital is really good and he would trust in their care. He gave me a website to look at that listed their doctors and said to look for an orthopedic doctor that was specialized in pediatrics. He said it was sad that in the second biggest city in the state (one that has a large orthopedic practice), that no one was sub specialized in pediatrics and knew how to treat clubfoot. I tried to be thankful that he believed there was someone in Indianapolis that we could see; a two hour drive was far from ideal but I knew it could be worse.
From the time of my first appointment that showed clubfoot until the time that I finally had a consultation with a doctor in Indianapolis was exactly two months. I spent every day of those two months on the internet researching. Hours upon hours researching. Because I knew that our baby would probably have different braces than Oliver had, I felt like I needed to research the entire Ponseti method again. I could barely sleep some nights. I'd wake up thinking of something else to look up. Having the internet on my phone was as much a blessing as a curse during this time. Just when I'd try going to bed I'd think of something to research and end up being awake for another two hours as one search led to another. I felt like I didn't have a choice; my baby needed me to find a doctor. I found support groups and other mothers who had been through this as well. Those were both good and bad...it was nice to talk to others, but at the same time, they were often struggling with things that I didn't even know could happen. Relapses? Nighttime braces at ages 3, 4, 5, and older? Pressure sores? I began to feel buried under all the possibilities of what could go wrong.
In the early spring, we had Oliver evaluated for some physical therapy. He was doing a lot of tiptoe walking and in toe-ing. He seemed to be doing well, but the more I researched about relapses the more obsessed I became with his feet. Was he relapsing? Did he walk on his tiptoes out of habit, or was his tendon too tight for him to walk normally? Should he have had the tenotomy as a baby? Did he need it now? Oh my gosh, what if Oliver needed surgery and was in casts? I couldn't carry him or handle him in leg casts when I was this pregnant! In my mind I had gone as far as to figure out when I would be able to schedule a surgery for him so that I didn't have him and the baby in casts at the same time. I was a total mess. We decided that once we found a doctor for the baby, we would have Oliver looked at as well. The whole thing just made me sick.
After doing research on the website that Dr. Wheeler gave me, I finally called Riley and St. Vincent's to get consultations set up. I was hoping that I'd be able to get into both on the same day to minimize driving time. I called St. Vincent's first and asked to get in to see Dr. Kayes. He was the name that a couple of moms that I had talked to online gave me so I figured I should call him. I really didn't think we'd end up going there since Dr. Wheeler had said Riley was where he would recommend. But I figured I should consider all our options to make sure we were making the best choice. The receptionist that I talked to was nice but not very personable. I wouldn't be able to get in to see him until July 31, and that seemed like an eternity away.
Then I called Riley Hospital. The ladies that I talked to were extremely friendly and compassionate about what we were facing. But I was very surprised to find out that only one doctor would meet with me prenatally. (And it was a doctor that I had heard not so great things about, and I already knew I wouldn't go to him.) I was so surprised that they wouldn't see moms during pregnancy. When I asked why, the receptionist said that the doctors didn't see a reason to because there was nothing that could be done until the baby was born, and sometimes ultrasounds were wrong. I thought that was so strange. The receptionist that I talked to was able to give me a lot of information about all of the doctors at Riley that treated clubfoot. (They each did things a little differently...some did the tenotomy in office, some did it in an operating room; some did hard plaster casts and some did soft casts.) They offered to send me some information on clubfoot, even though they knew we already had been through this with our older son. They were so extremely helpful and I was really leaning towards going with them. But I couldn't get over the idea that I was not able to meet with a doctor before I would be bring my baby to him to be treated. I felt like I really wasn't making much progress.
In the midst of all of this, I learned of an excellent clubfoot doctor in St. Louis, Dr. Matthew Dobbs. At first I was overwhelmed and emotional about the idea that maybe we would need to travel that far to receive excellent care. I had no idea how we would afford it. Jay couldn't take that much time off of work to go with us. If it was a one time surgery or even a surgery and then follow-up visits, it would be one thing. But I was overwhelmed at the idea of doing it weekly with a newborn and taking care of two other children. After I had Lucy, I went back to doing everything so quickly that it delayed my recovery by a lot. Physically I felt awful for weeks after I had her. I had been determined that I wouldn't do that again, and would spend the first several weeks of my next baby's life not running around like crazy. I knew life would go on and it wasn't like I was going to not leave the house; but I was going to respect what my body had been through and not do anything I didn't have to do. Obviously that all went out the window when I realized we would be dealing with clubfoot and driving to Indianapolis each week...but St. Louis???
I checked online and it was about a six hour drive. That didn't count in numerous stops with a newborn. Breastfeeding in the early weeks takes forever...I knew each stop for the baby to eat could last at least an 45 minutes to an hour or more. I would most likely have to go by myself most of the time and the thought exhausted me. I knew Oliver would be ok staying with someone else if I needed to be gone overnight, but Lucy...Lucy would not do so well. She would be about two when I would need to start travelling and I have never been away from her overnight. She doesn't sleep well anywhere but her bed, and with Jay's work hours it was going to be hard to be able to have her sleep in her bed but then up and ready for someone else to help with her during the day by the time Jay was gone for work. UGH.
And then I started feeling guilty...if Dr. Dobbs in St. Louis was the best, how could I deny our baby that? How could I not be willing to make sacrifices for a short period to time to ensure that his care was absolutely excellent? People from around the world travelled to St. Louis...how could I complain about a few hours? I would see other clubfoot moms posting about the travel they went through to get to Dr. Dobbs because "only the best" for their baby. It just made my stomach hurt--how could I want anything less??? I actually got in touch with Dr. Dobbs via private message on his facebook page, and he didn't have any recommendations for doctors in Indiana but was so extremely kind to talk to. It made me want to see him even more.
I knew that Dr. Cummiskey had closed his practice, but on a whim one day I decided to try to call his office anyway. There was a recorded message from his nurse (and oh, when I heard her voice it seemed impossible that it had been so long since we had seen her) saying that his practice had closed but if we had any questions or needed records to call her at her new office. So I called and left a message, telling her who I was and that I was wondering if Dr. Cummiskey had any recommendations for a new clubfoot doctor.
Nurse Deb called me back the next morning, and it was so, so good to talk to her. She remembered Oliver and we talked for quite awhile. She said that they were recommending for patients to go to Dr. Kayes, the doctor I had set up a consult with at St. Vincent's hospital. I was a bit surprised, and told her I had thought maybe Riley would be our best bet. She said that they actually hadn't seen the best results come out of Riley and she was also shocked that their doctors would not meet with me prenatally. She had a lot of good things to say about Dr. Kayes. A few weeks later I stopped in with the kids to see her and get Oliver's records. It brought back so many memories to see this sweet nurse who had been there with us during Oliver's care.
After talking with Nurse Deb, I felt like if we stayed with a doctor in Indiana, we would see Dr. Kayes and not a doctor at Riley Hospital. I still had doubts about Dr. Kayes, though, and it was hard for me to not think about how we could make the trips to St. Louis work. I had heard of an organization called Angel Flights, and found an organization in Indiana called Lifeline Pilots. Its an organization that flies people to where they need to go to get medical care. There's an application to fill out and not everyone gets accepted. I figured we would go see Dr. Kayes and then I'd come home and see if we could get to St. Louis.
Thankfully, our visit with Dr. Kayes in Indianapolis went much better than I expected. I will do a full post soon. The burden of finding a new doctor has been unexpectedly heavy. I felt (and to an extent, still feel) an enormous amount of pressure to make the right decision. I just pray that we have made the right one.
*****
One more quick thing, unrelated to our search for a new doctor. But I recently found this ultrasound image while looking online, and wanted to share it. This is from another blog of a family who has a clubfoot baby. Unfortunately, I do not have ultrasound images of either Oliver's clubfeet or Max's clubfoot. I really, really wish that I did. But I wanted to share this so that people can see what we saw on the ultrasound.
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| Photo found on google search via http://russellsfeet.com/about/ |
See the leg bone, and the way the foot turns in instead of extending straight forward? The foot turning in like that indicates clubfoot. With Oliver, both feet turned inwards and we could see that via ultrasound. With baby Max, his left foot extended straight out from his leg, but his right foot turned in. As soon as I saw our ultrasound and saw his foot look very similar to the one pictured above, I knew he had a clubfoot.
Tuesday, July 30, 2013
The Second Time We Found Out...May 31, 2013
So far, most of the posts on this blog have been emotional to write (especially the one about Oliver's first casting...I haven't been able to read it since I wrote/published it). They have been just far enough in the past that I've had time to feel, process, and put all the complex emotions into words that actually make sense.
Now I'm to the point of writing about what we are currently going through. At first, it was hard for me not to just jump right into this stage and write about it. However, as time as gone on, I've been a bit anxious about writing these. The emotions I'm feeling are still so raw. They are still so open and fresh, and oftentimes, ugly. I'm not always proud of how I'm handling things. Oftentimes I want to hide to myself, no matter how lonely it is, because I fear how others will view how I'm handling our situation. But I'm going to do my best to just put it out there in hopes that I can help someone else along the way who may also be having these feelings. And someday, I'll be able to look back and see how far I have come.
Friday, May 31, 2013. I had my ultrasound appt early that afternoon, and Jay took a half day to go with me. We took both kids with us, which turned out to be much easier than I expected. I was a total bundle of nerves on the way there. The peace that I remember feeling before Lucy's ultrasound was not with me that day. I still didn't expect that we would find out anything was wrong, but gosh I was so anxious.
They called us back to the room, and the ultrasound tech did all of the necessary measurements. She asked if we knew boy or girl and we said we didn't know for sure but that we wanted to find out if possible. After she did the measurements she let me get up and go to the bathroom; I had drank so much water on the way there that I was miserable! I came back and she finished the scan. It was really sweet having the kids with us. Oliver sat in the chair next to me and held my hand. Jay stood next to me holding Lucy and she kept pointing to the screen and waving and saying, "Baby!" At first, baby had its legs tight together and wasn't letting us see anything. I couldn't believe it! Thankfully, the baby moved, and the tech pointed between the legs and said, "See that there? It's a little boy!" I looked at Oliver and said, "Did you hear that? It's a boy! You're having a brother!" I wish we had gotten a video or picture of his face. He totally lit up and gasped and said, "A little brother?!?" It was precious!
Everything was looking good on the baby. I asked to see his feet, and explained that Oliver had been born with clubfoot so we were very curious to see about this little guy. She got a good look at one foot and we could tell it was fine. What a relief! Then she got a view of the other foot. My heart completely fell.
It was turned. I knew it. I can't even remember exactly what I said or did. I think I just sighed and said, "Ah. Yeah, its turned in." I looked at Jay and tried to smile, and I had to hold it together because the kids were still with us. The ultrasound tech asked where we had had our ultrasounds done with Oliver and I told her. The baby was positioned with his foot pressed up against the side of my uterus, so she had me turn this way and that, all over the place, to try to get him to move and kick his foot out. He sort of did, but he stayed pretty much set in one place. I told her that the foot looked exactly like how Oliver's had looked on his ultrasounds. Instead of the foot bones extending straight out from the leg, they were turned inwards. I really didn't even need her to tell us what she thought, I knew as soon as I saw it.
Honestly, it didn't even seem real. It seemed absolutely impossible that I was laying on this table, having an ultrasound, and seeing another clubfoot. This couldn't be my baby. I had already seen this...right? Had already been through this? I really couldn't let myself comprehend it just yet.
The ultrasound tech printed off some pictures for us (none of his clubfoot, which I really wish I had) and led me to a room to wait for my midwife. I was scheduled for an appt with her after my ultrasound. I think at one point, Jay asked me if I was ok because I had tears in my eyes, but I was just trying to hold it together for the kids. I have no idea how well I did because its such a blur. He took the kids out of the office and kept them busy so I could have an easier appointment. I was thankful because I couldn't hold it together much longer.
I sat in the room and looked at his pictures and just cried. The nurse, whom I just adore, came in and said something like, "Not what you were hoping for? I've been thinking about you all day." For some reason, at first I thought maybe she thought I was crying because we found out we were having a boy and I was upset about that. I have no idea why my mind went there! I could barely talk but said something about one foot being turned in. She gave me a hug and did what she needed to do. She gave me another hug before she left.
I had to wait awhile for my midwife to come in. I grabbed my phone and realized I had reception. I sat there, desperately wanting to reach out to someone, but not really wanting anyone to respond. At least not directly. I don't know, it was weird. I have a small group of mom friends that I chat with online and they knew I had my appointment that day. I sent out a quick message: "One foot looks like clubfoot. Will update more after my appointment with Kori (midwife). Trying not to fall apart over here." That's all I could get out. As I waited for my midwife, I went back and forth between sobbing and then getting myself together. I kept hoping she would come in while I was in between sob sessions, and looking back I have no idea if I was crying or not when she came in.
Kori came in and hugged me. She knew this wasn't what I wanted. She was so, so sweet. I kept rambling, saying the same things over and over, as if I could convince myself how okay this was. I would say things like ,"It'll be fine. Its only one foot. It'll be fine." And, "I mean, the first time we went through this we didn't know what to expect. Now we know the doctor we're going to, we know the treatments, its not so overwhelming." Over and over I would repeat myself. And I just cried. Oh how my heart was breaking. It just didn't seem fair that my precious baby was going to go through all of the pain that Oliver did. I don't know how long I spent talking, but it seemed like forever. Probably close to 45 minutes. I was thinking I would have a regular appointment, with listening to the heart tones and everything, but at the end Kori told me since we had had the ultrasound they had all of that information and measurements and she really didn't need to do anything more. Part of me felt badly, then, because I had really taken up so much of her time! I was, and still am, so very thankful for how she handled that appointment. Just letting me talk and cry and process. The whole thing was so completely different and opposite from how my OB appointment went after finding out about Oliver's feet. She encouraged me to just take the time I needed and not feel the need to tell everyone. That was really nice to hear, because I have a tendency to need to update people whether I feel like it or not.
I got myself together, and went to find Jay and the kids. When we got in the van, I actually turned my phone off completely...something I rarely ever do. But I knew that if people started to text me or even leave me messages on facebook, I would feel the need to respond, and I just couldn't yet. Jay and I took the kids to the mall and walked around for awhile and got something to eat. We tried to act normal and happy, and spent time talking about having another little boy. On the way home we stopped and got a couple of blue balloons to take pictures of the kids with. I had no desire to do a gender reveal party at that point, but wanted something a little fun for them.
I finally turned my phone on and called my mom. I told her the good news that we had been able to find out we were having a boy! She asked about his feet, and I had to take a big breath before I could answer. She said, "Oh, are they turned in?" She knew before I could even say anything. I said "One is." and my voice just cracked. Tears streamed down my face. We talked for awhile, and she reminded me that God would take care of our little boy. Then she said, "And He'll take care of you, too." That still makes me cry to think of that. Its true, and I knew it, but I needed to hear someone say it.
We got home and we tried to get some pictures of the kids with their balloons. I was totally impatient with them, which wasn't fair, but I was really struggling. I really hadn't had the time to even digest the news we had received and desperately needed to. After finally getting some pictures, we got things ready for Oliver to spend the night at Jay's parents' house (which he often does on Friday nights) and we headed over there.
I finally checked my text messages and saw that a couple of people had asked how my appointment with. I started out my replies by sending the picture of the kids and saying, "Its a boy!" Then I told a select few very close friends and family members about his feet. I really couldn't even write it without crying, so I kept things brief. I just couldn't believe this was happening. One friend replied saying she was sorry, but that I knew the baby would be ok. I realized at that point that I needed to stay distanced the rest of the night from telling people. I was not ready to hear from anyone else that things were going to be ok. I was in a very vulnerable place and in order to not be upset, I really needed to guard myself. It wasn't anyone else's fault, it was entirely just the place that I found myself in.
Later that night, I was getting ready for bed and checking my phone when I saw I had a message from my midwife. Any shred of holding myself together was about to be lost. At my appointment that day, I had told her how Oliver's orthopedic doctor had switched to a different hospital towards the end of Oliver's treatments, and she had asked what his name was. My midwife's mother happened to work at the hospital Dr. Cummiskey was now at, so she wrote down his name so she could ask her if she knew him. Apparently, that evening my midwife had talked to her mom. She found out that Dr. Cummiskey was very ill, and had recently had to shut down his practice.
I felt a whole surge of emotions flood me again. Just like how I can put myself exactly back to that time when we saw his foot on the ultrasound, I can put myself exactly back in my bathroom when I learned that our doctor wasn't going to be our doctor anymore. It was devastating. I had to re-read her message several times to really believe that I was seeing this. I said some extremely choice words at this point and just started sobbing. Jay came in, and assuming I was upset about the baby's foot, just held me for awhile. I was finally able to tell him about Dr. Cummiskey, and tried to make it seem like all would be ok. But I really felt like everything was crumbling. It was unfair that our baby had clubfoot. Really, really unfair. But ever since Oliver, I had always found comfort in the fact that we had an amazing doctor that we trusted and we knew could treat this condition. That small bit of knowledge and comfort got me through that afternoon after our appointment. And then...it was just stripped away. I was crushed. I was overwhelmed. And I was angry. That was an emotion I was not prepared for. It was an emotion that would overwhelm me in the coming weeks and one that I really had to work through. Anger is a powerful and strong emotion.
That night before I fell asleep I sent a message to my dear friend, one who I often lean on when I need prayer. I could barely write anything, I was so upset, but I told her I was in a rough place and needed her prayers. That the last bit of comfort I had left was now gone and that Dr. Cummiskey needed our prayers too. My heart was broken for him and his family. She replied with sweet, uplifting messages that helped me get through the darkness of that night. She told me that she was not accepting the diagnosis and was praying complete healing over our son. To be honest, that completely took me aback. I had not even thought to pray like that. I was just so overwhelmed, hurt, confused, and angry that the idea of it not happening, or the possibility of a healing before his birth, had not entered my mind. While I still struggle to pray this way, I am so very thankful that she was praying for me when I myself was unable to pray. Having a loyal friend and trusted prayer partner in life is a precious gift from God. The night I cried myself to sleep, so overwhelmed with emotion that I could barely think straight.
Over the weekend we tried to celebrate another baby boy being added to our family. We went to dinner Saturday night, and did putt-putt with the kids. Jay's parents met up with us and we did some shopping for the baby, which was so fun. But I just felt this heavy burden on my shoulders the entire time. We were in Babies R Us and I could barely hold it together when I saw an adorable tiny set of boy shoes. What baby needs shoes anyway, right?! But knowing that our son wouldn't be able to wear them because he would have a cast covering his entire leg when he was just a week old was enough to make me crumble. Every tiny sleeper that had feet, or a zipper, or only snapped down one leg was like a slap in the face of what we wouldn't be able to have. My emotions were still so very raw. So selfish. So illogical. We were back to buying clothes based on how they would work with casts and braces. This was my life, again. This. Wasn't. Fair.
Sunday morning I was supposed to work in the nursery at church, but a dear friend of mine switched with me so that I could be in service. I knew I needed it, but it was so hard. That service was, without a doubt, the hardest one I have ever sat through. Worship is usually a very uplifting time for me. I can raise my hands in praise and glory to the God I know I serve. But that Sunday it felt like I had dead weights on my arms. I couldn't even sing. I literally just stood there in a daze and wiped the tears that fell. The night before I had gathered every bit of strength in me and posted in our church's prayer group about the baby's foot and asked for prayers. I had zero desire to do it. I really didn't want anyone knowing. But I knew we needed prayers. Our baby needed prayers, and I needed to reach out no matter how much I didn't want to.
I'm so thankful for our church family. They were there with hugs and uplifting words that didn't make me feel like my emotions were stupid or wrong. I didn't feel like I needed to act like I was okay when I was dying inside. I have no idea what was preached on that day. I was in my own world of hurt. I just remember being so angry during worship. I knew that God could do all of these wonderful and miraculous things, and I felt totally forgotten by him. I thought about how Oliver's healing had been a tool for us to tell others about God, and honestly at that moment I had zero desire to have another one of my children used that way. I'm so ashamed to admit that. But its true. "Pick someone else's child," I thought. "Pick me. Use me. But WHY put this tiny, innocent baby through pain???" I screamed angry thoughts in my head that morning to God, and asked Him to forgive my ugliness. I knew I was having a tantrum with Him, but oh I was so angry.
During alter call, we went up front to pray for our baby. A friend of mine who leads worship came down off the stage to pray for us. To be honest, I was surprised because I hadn't gotten to talk directly to her. My friend wrapped me in her arms and I just sobbed. I was somewhat embarrassed to totally lose it on her, and in front of others. I felt other people come around me, and I was able to somewhat (barely) collect myself. My friend (whose father is our pastor) asked if she could annoint my stomach and pray. Of course I was fine with that. Her prayer was powerful, and she prayed for a miraculous healing over our baby's foot. Again, someone was able to pray for a healing that I myself wasn't able to pray. I will forever be grateful for those who stepped in for me and prayed when I couldn't. I had no idea until later who all was with us praying, when I asked Jay who had come around us. It meant so much and those people in particular really have a special place in my heart. I needed those people's strength and prayers just to keep my head up and my feet walking. I have rarely, if ever, felt such a burden that it felt like physical weight holding me down. There were others that I wished would have been there surrounding us as well, but I knew they were praying regardless. Like I said, my emotions were very selfish at this point.
The upcoming weeks and months would bring about a lot of feelings and even more tears. Some days I wondered when I would ever stop crying. My joy was completely stripped for a time, and its still not where I would like it to be. Sleep came in spurts and was restless, and still is. Its been almost exactly two months since we found out and I have yet to make it through a Sunday morning service without crying. I know God is working on me. I am starting to see some transformation in my own life that would not have happened without this process. I'm desperately trying to cling to an end vision where the pain is not so intense. I pray that someday in the not-so-distant future I'll be able to tell my testimony and I know this will play a HUGE part in that. I know that this is the hardest trial I have been through so far, and the most that I have ever wrestled with God. I truly can't wait until I have climbed out of the valley and can stand on the mountaintop and say, "My God is always faithful, for He has brought me from there to HERE!"
Now I'm to the point of writing about what we are currently going through. At first, it was hard for me not to just jump right into this stage and write about it. However, as time as gone on, I've been a bit anxious about writing these. The emotions I'm feeling are still so raw. They are still so open and fresh, and oftentimes, ugly. I'm not always proud of how I'm handling things. Oftentimes I want to hide to myself, no matter how lonely it is, because I fear how others will view how I'm handling our situation. But I'm going to do my best to just put it out there in hopes that I can help someone else along the way who may also be having these feelings. And someday, I'll be able to look back and see how far I have come.
Friday, May 31, 2013. I had my ultrasound appt early that afternoon, and Jay took a half day to go with me. We took both kids with us, which turned out to be much easier than I expected. I was a total bundle of nerves on the way there. The peace that I remember feeling before Lucy's ultrasound was not with me that day. I still didn't expect that we would find out anything was wrong, but gosh I was so anxious.
They called us back to the room, and the ultrasound tech did all of the necessary measurements. She asked if we knew boy or girl and we said we didn't know for sure but that we wanted to find out if possible. After she did the measurements she let me get up and go to the bathroom; I had drank so much water on the way there that I was miserable! I came back and she finished the scan. It was really sweet having the kids with us. Oliver sat in the chair next to me and held my hand. Jay stood next to me holding Lucy and she kept pointing to the screen and waving and saying, "Baby!" At first, baby had its legs tight together and wasn't letting us see anything. I couldn't believe it! Thankfully, the baby moved, and the tech pointed between the legs and said, "See that there? It's a little boy!" I looked at Oliver and said, "Did you hear that? It's a boy! You're having a brother!" I wish we had gotten a video or picture of his face. He totally lit up and gasped and said, "A little brother?!?" It was precious!
Everything was looking good on the baby. I asked to see his feet, and explained that Oliver had been born with clubfoot so we were very curious to see about this little guy. She got a good look at one foot and we could tell it was fine. What a relief! Then she got a view of the other foot. My heart completely fell.
It was turned. I knew it. I can't even remember exactly what I said or did. I think I just sighed and said, "Ah. Yeah, its turned in." I looked at Jay and tried to smile, and I had to hold it together because the kids were still with us. The ultrasound tech asked where we had had our ultrasounds done with Oliver and I told her. The baby was positioned with his foot pressed up against the side of my uterus, so she had me turn this way and that, all over the place, to try to get him to move and kick his foot out. He sort of did, but he stayed pretty much set in one place. I told her that the foot looked exactly like how Oliver's had looked on his ultrasounds. Instead of the foot bones extending straight out from the leg, they were turned inwards. I really didn't even need her to tell us what she thought, I knew as soon as I saw it.
Honestly, it didn't even seem real. It seemed absolutely impossible that I was laying on this table, having an ultrasound, and seeing another clubfoot. This couldn't be my baby. I had already seen this...right? Had already been through this? I really couldn't let myself comprehend it just yet.
The ultrasound tech printed off some pictures for us (none of his clubfoot, which I really wish I had) and led me to a room to wait for my midwife. I was scheduled for an appt with her after my ultrasound. I think at one point, Jay asked me if I was ok because I had tears in my eyes, but I was just trying to hold it together for the kids. I have no idea how well I did because its such a blur. He took the kids out of the office and kept them busy so I could have an easier appointment. I was thankful because I couldn't hold it together much longer.
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| Sweet baby boy. His profile reminds me of Oliver. |
I sat in the room and looked at his pictures and just cried. The nurse, whom I just adore, came in and said something like, "Not what you were hoping for? I've been thinking about you all day." For some reason, at first I thought maybe she thought I was crying because we found out we were having a boy and I was upset about that. I have no idea why my mind went there! I could barely talk but said something about one foot being turned in. She gave me a hug and did what she needed to do. She gave me another hug before she left.
I had to wait awhile for my midwife to come in. I grabbed my phone and realized I had reception. I sat there, desperately wanting to reach out to someone, but not really wanting anyone to respond. At least not directly. I don't know, it was weird. I have a small group of mom friends that I chat with online and they knew I had my appointment that day. I sent out a quick message: "One foot looks like clubfoot. Will update more after my appointment with Kori (midwife). Trying not to fall apart over here." That's all I could get out. As I waited for my midwife, I went back and forth between sobbing and then getting myself together. I kept hoping she would come in while I was in between sob sessions, and looking back I have no idea if I was crying or not when she came in.
Kori came in and hugged me. She knew this wasn't what I wanted. She was so, so sweet. I kept rambling, saying the same things over and over, as if I could convince myself how okay this was. I would say things like ,"It'll be fine. Its only one foot. It'll be fine." And, "I mean, the first time we went through this we didn't know what to expect. Now we know the doctor we're going to, we know the treatments, its not so overwhelming." Over and over I would repeat myself. And I just cried. Oh how my heart was breaking. It just didn't seem fair that my precious baby was going to go through all of the pain that Oliver did. I don't know how long I spent talking, but it seemed like forever. Probably close to 45 minutes. I was thinking I would have a regular appointment, with listening to the heart tones and everything, but at the end Kori told me since we had had the ultrasound they had all of that information and measurements and she really didn't need to do anything more. Part of me felt badly, then, because I had really taken up so much of her time! I was, and still am, so very thankful for how she handled that appointment. Just letting me talk and cry and process. The whole thing was so completely different and opposite from how my OB appointment went after finding out about Oliver's feet. She encouraged me to just take the time I needed and not feel the need to tell everyone. That was really nice to hear, because I have a tendency to need to update people whether I feel like it or not.
I got myself together, and went to find Jay and the kids. When we got in the van, I actually turned my phone off completely...something I rarely ever do. But I knew that if people started to text me or even leave me messages on facebook, I would feel the need to respond, and I just couldn't yet. Jay and I took the kids to the mall and walked around for awhile and got something to eat. We tried to act normal and happy, and spent time talking about having another little boy. On the way home we stopped and got a couple of blue balloons to take pictures of the kids with. I had no desire to do a gender reveal party at that point, but wanted something a little fun for them.
I finally turned my phone on and called my mom. I told her the good news that we had been able to find out we were having a boy! She asked about his feet, and I had to take a big breath before I could answer. She said, "Oh, are they turned in?" She knew before I could even say anything. I said "One is." and my voice just cracked. Tears streamed down my face. We talked for awhile, and she reminded me that God would take care of our little boy. Then she said, "And He'll take care of you, too." That still makes me cry to think of that. Its true, and I knew it, but I needed to hear someone say it.
We got home and we tried to get some pictures of the kids with their balloons. I was totally impatient with them, which wasn't fair, but I was really struggling. I really hadn't had the time to even digest the news we had received and desperately needed to. After finally getting some pictures, we got things ready for Oliver to spend the night at Jay's parents' house (which he often does on Friday nights) and we headed over there.
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| Getting pictures with these two is always interesting. (Notice Oliver standing on one leg?!) They are pretty excited about getting a baby brother!! |
I finally checked my text messages and saw that a couple of people had asked how my appointment with. I started out my replies by sending the picture of the kids and saying, "Its a boy!" Then I told a select few very close friends and family members about his feet. I really couldn't even write it without crying, so I kept things brief. I just couldn't believe this was happening. One friend replied saying she was sorry, but that I knew the baby would be ok. I realized at that point that I needed to stay distanced the rest of the night from telling people. I was not ready to hear from anyone else that things were going to be ok. I was in a very vulnerable place and in order to not be upset, I really needed to guard myself. It wasn't anyone else's fault, it was entirely just the place that I found myself in.
Later that night, I was getting ready for bed and checking my phone when I saw I had a message from my midwife. Any shred of holding myself together was about to be lost. At my appointment that day, I had told her how Oliver's orthopedic doctor had switched to a different hospital towards the end of Oliver's treatments, and she had asked what his name was. My midwife's mother happened to work at the hospital Dr. Cummiskey was now at, so she wrote down his name so she could ask her if she knew him. Apparently, that evening my midwife had talked to her mom. She found out that Dr. Cummiskey was very ill, and had recently had to shut down his practice.
I felt a whole surge of emotions flood me again. Just like how I can put myself exactly back to that time when we saw his foot on the ultrasound, I can put myself exactly back in my bathroom when I learned that our doctor wasn't going to be our doctor anymore. It was devastating. I had to re-read her message several times to really believe that I was seeing this. I said some extremely choice words at this point and just started sobbing. Jay came in, and assuming I was upset about the baby's foot, just held me for awhile. I was finally able to tell him about Dr. Cummiskey, and tried to make it seem like all would be ok. But I really felt like everything was crumbling. It was unfair that our baby had clubfoot. Really, really unfair. But ever since Oliver, I had always found comfort in the fact that we had an amazing doctor that we trusted and we knew could treat this condition. That small bit of knowledge and comfort got me through that afternoon after our appointment. And then...it was just stripped away. I was crushed. I was overwhelmed. And I was angry. That was an emotion I was not prepared for. It was an emotion that would overwhelm me in the coming weeks and one that I really had to work through. Anger is a powerful and strong emotion.
That night before I fell asleep I sent a message to my dear friend, one who I often lean on when I need prayer. I could barely write anything, I was so upset, but I told her I was in a rough place and needed her prayers. That the last bit of comfort I had left was now gone and that Dr. Cummiskey needed our prayers too. My heart was broken for him and his family. She replied with sweet, uplifting messages that helped me get through the darkness of that night. She told me that she was not accepting the diagnosis and was praying complete healing over our son. To be honest, that completely took me aback. I had not even thought to pray like that. I was just so overwhelmed, hurt, confused, and angry that the idea of it not happening, or the possibility of a healing before his birth, had not entered my mind. While I still struggle to pray this way, I am so very thankful that she was praying for me when I myself was unable to pray. Having a loyal friend and trusted prayer partner in life is a precious gift from God. The night I cried myself to sleep, so overwhelmed with emotion that I could barely think straight.
Over the weekend we tried to celebrate another baby boy being added to our family. We went to dinner Saturday night, and did putt-putt with the kids. Jay's parents met up with us and we did some shopping for the baby, which was so fun. But I just felt this heavy burden on my shoulders the entire time. We were in Babies R Us and I could barely hold it together when I saw an adorable tiny set of boy shoes. What baby needs shoes anyway, right?! But knowing that our son wouldn't be able to wear them because he would have a cast covering his entire leg when he was just a week old was enough to make me crumble. Every tiny sleeper that had feet, or a zipper, or only snapped down one leg was like a slap in the face of what we wouldn't be able to have. My emotions were still so very raw. So selfish. So illogical. We were back to buying clothes based on how they would work with casts and braces. This was my life, again. This. Wasn't. Fair.
Sunday morning I was supposed to work in the nursery at church, but a dear friend of mine switched with me so that I could be in service. I knew I needed it, but it was so hard. That service was, without a doubt, the hardest one I have ever sat through. Worship is usually a very uplifting time for me. I can raise my hands in praise and glory to the God I know I serve. But that Sunday it felt like I had dead weights on my arms. I couldn't even sing. I literally just stood there in a daze and wiped the tears that fell. The night before I had gathered every bit of strength in me and posted in our church's prayer group about the baby's foot and asked for prayers. I had zero desire to do it. I really didn't want anyone knowing. But I knew we needed prayers. Our baby needed prayers, and I needed to reach out no matter how much I didn't want to.
I'm so thankful for our church family. They were there with hugs and uplifting words that didn't make me feel like my emotions were stupid or wrong. I didn't feel like I needed to act like I was okay when I was dying inside. I have no idea what was preached on that day. I was in my own world of hurt. I just remember being so angry during worship. I knew that God could do all of these wonderful and miraculous things, and I felt totally forgotten by him. I thought about how Oliver's healing had been a tool for us to tell others about God, and honestly at that moment I had zero desire to have another one of my children used that way. I'm so ashamed to admit that. But its true. "Pick someone else's child," I thought. "Pick me. Use me. But WHY put this tiny, innocent baby through pain???" I screamed angry thoughts in my head that morning to God, and asked Him to forgive my ugliness. I knew I was having a tantrum with Him, but oh I was so angry.
During alter call, we went up front to pray for our baby. A friend of mine who leads worship came down off the stage to pray for us. To be honest, I was surprised because I hadn't gotten to talk directly to her. My friend wrapped me in her arms and I just sobbed. I was somewhat embarrassed to totally lose it on her, and in front of others. I felt other people come around me, and I was able to somewhat (barely) collect myself. My friend (whose father is our pastor) asked if she could annoint my stomach and pray. Of course I was fine with that. Her prayer was powerful, and she prayed for a miraculous healing over our baby's foot. Again, someone was able to pray for a healing that I myself wasn't able to pray. I will forever be grateful for those who stepped in for me and prayed when I couldn't. I had no idea until later who all was with us praying, when I asked Jay who had come around us. It meant so much and those people in particular really have a special place in my heart. I needed those people's strength and prayers just to keep my head up and my feet walking. I have rarely, if ever, felt such a burden that it felt like physical weight holding me down. There were others that I wished would have been there surrounding us as well, but I knew they were praying regardless. Like I said, my emotions were very selfish at this point.
The upcoming weeks and months would bring about a lot of feelings and even more tears. Some days I wondered when I would ever stop crying. My joy was completely stripped for a time, and its still not where I would like it to be. Sleep came in spurts and was restless, and still is. Its been almost exactly two months since we found out and I have yet to make it through a Sunday morning service without crying. I know God is working on me. I am starting to see some transformation in my own life that would not have happened without this process. I'm desperately trying to cling to an end vision where the pain is not so intense. I pray that someday in the not-so-distant future I'll be able to tell my testimony and I know this will play a HUGE part in that. I know that this is the hardest trial I have been through so far, and the most that I have ever wrestled with God. I truly can't wait until I have climbed out of the valley and can stand on the mountaintop and say, "My God is always faithful, for He has brought me from there to HERE!"
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| 24 weeks pregnant. This was taken the week after our ultrasound. I was trying to smile on the outside, but on the inside I was completely devastated. |
Tuesday, July 23, 2013
Clubfoot Gear the First Time Around
One thing about having a clubfoot baby is that some baby items aren't very convenient- or possible- to use. Sometimes it was just trial and error to see if something worked for us, and other times it was pretty obvious. It's been almost 5 years ago now that we went through this with Oliver, so it will be interesting to see what works for us now compared to what I used then. Some of my favorite items were...
1. Sleepy Wrap (now called Boba Wrap)
http://store.bobafamily.com/baby-wrap/?show=features
I loved being able to wear Oliver in a sling when he was little. A pouch sling worked for awhile, but once he got his braces on the pouch didn't work. I ended up getting a Sleepy Wrap, which is similar to a Moby wrap. It worked so well for us. The Sleepy Wrap was stretchy, so it was very easy to get his braces in and out of the wrap.
2. Beco Butterfly Soft-Structured Carrier
http://www.becobabycarrier.com/index.asp
This was another carrier that I got when Oliver was about 4 months old. They don't make this specific style anymore, but I have heard others say that the Beco Gemini is good for clubfoot babies. Again, since baby Max will most likely be wearing a bar and boots brace instead of KAFO braces like Oliver, this could make a difference. The Beco Butterfly carrier opened up nicely and I could easily get him in and out with the bulky braces. But I know some soft structured carriers have the baby's legs spread too wide for a bar and boots brace to work. I loved my Beco, and still have it, so I'll give it a try with Max and see how it goes.
3. Snap PJs
Any PJs that snapped completely down the legs on both sides (no cuffs) were essential for Oliver. Some PJs would snap down only one leg, or they would snap almost to the bottom but have a cuff, and those didn't work well at all. In order to change his diaper I would have to take them completely off, since Oliver couldn't bend his legs to get them out of the PJs when he had his braces on. We also used some sleeping gowns during the early weeks when he was in his casts.
4. Sling Bath Mat
It took some practice to give Oliver a bath with his casts on. We mainly did sponge baths, but I liked being able to put him in the bath tub instead of getting everything ready and carrying it to another place. But giving a baby a bath when you can't get any part of their legs or feet wet can be interesting.
5. Jumperoo
For Oliver's first Christmas, my parents got him a Fisher Price rainforest jumperoo. He would go nuts in this thing! I loved how much it worked his leg muscles.
6. Stretchy Pants
Any kind of pants Oliver wore had to be really stretchy to fit over his casts or braces. Sometimes we could find jeans that fit, but that wasn't often. Pants like these from Carter's were great for him.
7. Socks
Socks became a slight obsession as well. It seemed as though once I found socks that worked the best for him and his braces, I would buy several pairs every time I went to the store. Socks had to be long (no cute ankle socks) and thin (no fuzzy or thick socks). Especially at first, Oliver's feet and legs would sweat a lot and we changed his socks constantly. The $1 socks from Target became our favorite.
8. Bumbo. This did and didn't work for us. The leg openings were a bit small, so if he sat in it with his braces, he would sometimes get stuck. But Oliver loved it, so we made it work. It was really nice for restaurants, too. We kept an extra Bumbo in the trunk of our car and would always ask for a booth at a restaurant. It was easier to get him in and out of the Bumbo than a highchair.
Things that Didn't Work For Us...
*Short, thick socks. They didn't give Oliver's legs enough coverage in the braces and were too hot and sweaty.
*Tight pants or pants with cuffs. They needed to be stretchy to fit over his casts or braces.
*Baby bathtubs. I had to keep the water off of his legs, so baths in general were not easy. The baby bathtub sling like I mentioned above was what worked best, but still wasn't the easiest.
*Pouch slings. They worked ok when he was in casts (still not easy) but his legs didn't fit in them once he had braces.
*Shoes. All those cute little baby shoes? Yeah, Oliver couldn't wear any of them. He didn't get his first pair of shoes until he was 8 months old. I remember seeing all the little girl shoes and thinking I was glad I didn't have a girl because I'd be so sad to not get to use those cute little dress shoes!
*Footy PJs. Soooo many pajamas have feet, or only snap/zip down one leg. None of those worked for Oliver, so when I found something that worked, I stocked up.
There were also certain high chairs and things like that that didn't work well with Oliver's braces. Since he couldn't bend his legs, it made shopping carts and chairs hard to get him in and out of. I was so very thankful that he liked being worn in carriers because it made my life much easier.
1. Sleepy Wrap (now called Boba Wrap)
http://store.bobafamily.com/baby-wrap/?show=features
I loved being able to wear Oliver in a sling when he was little. A pouch sling worked for awhile, but once he got his braces on the pouch didn't work. I ended up getting a Sleepy Wrap, which is similar to a Moby wrap. It worked so well for us. The Sleepy Wrap was stretchy, so it was very easy to get his braces in and out of the wrap.
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| I loved this wrap! It was so easy to get Oliver in and out with his braces on. |
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| Love my sweet, blue-eyed boy. |
2. Beco Butterfly Soft-Structured Carrier
http://www.becobabycarrier.com/index.asp
This was another carrier that I got when Oliver was about 4 months old. They don't make this specific style anymore, but I have heard others say that the Beco Gemini is good for clubfoot babies. Again, since baby Max will most likely be wearing a bar and boots brace instead of KAFO braces like Oliver, this could make a difference. The Beco Butterfly carrier opened up nicely and I could easily get him in and out with the bulky braces. But I know some soft structured carriers have the baby's legs spread too wide for a bar and boots brace to work. I loved my Beco, and still have it, so I'll give it a try with Max and see how it goes.
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| Oliver was just in braces at night at this point, but he loved this carrier and so did I. |
3. Snap PJs
Any PJs that snapped completely down the legs on both sides (no cuffs) were essential for Oliver. Some PJs would snap down only one leg, or they would snap almost to the bottom but have a cuff, and those didn't work well at all. In order to change his diaper I would have to take them completely off, since Oliver couldn't bend his legs to get them out of the PJs when he had his braces on. We also used some sleeping gowns during the early weeks when he was in his casts.
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| Snap PJs and outfits were great for Oliver! |
4. Sling Bath Mat
It took some practice to give Oliver a bath with his casts on. We mainly did sponge baths, but I liked being able to put him in the bath tub instead of getting everything ready and carrying it to another place. But giving a baby a bath when you can't get any part of their legs or feet wet can be interesting.
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| Bath time! |
5. Jumperoo
For Oliver's first Christmas, my parents got him a Fisher Price rainforest jumperoo. He would go nuts in this thing! I loved how much it worked his leg muscles.
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| He loved bouncing. :) |
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| All smiles! |
6. Stretchy Pants
Any kind of pants Oliver wore had to be really stretchy to fit over his casts or braces. Sometimes we could find jeans that fit, but that wasn't often. Pants like these from Carter's were great for him.
7. Socks
Socks became a slight obsession as well. It seemed as though once I found socks that worked the best for him and his braces, I would buy several pairs every time I went to the store. Socks had to be long (no cute ankle socks) and thin (no fuzzy or thick socks). Especially at first, Oliver's feet and legs would sweat a lot and we changed his socks constantly. The $1 socks from Target became our favorite.
 | ||
| Anyone who has shopped for a baby at Target has seen a display like this. We owned a TON of these socks! Image from www.alittlesimplicity.com |
8. Bumbo. This did and didn't work for us. The leg openings were a bit small, so if he sat in it with his braces, he would sometimes get stuck. But Oliver loved it, so we made it work. It was really nice for restaurants, too. We kept an extra Bumbo in the trunk of our car and would always ask for a booth at a restaurant. It was easier to get him in and out of the Bumbo than a highchair.
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| Oliver's first time in a Bumbo...and you can also see how the footy pants looked over his braces. They fit, technically, but you can tell how bulky they were underneath the pants. |
Things that Didn't Work For Us...
*Short, thick socks. They didn't give Oliver's legs enough coverage in the braces and were too hot and sweaty.
*Tight pants or pants with cuffs. They needed to be stretchy to fit over his casts or braces.
*Baby bathtubs. I had to keep the water off of his legs, so baths in general were not easy. The baby bathtub sling like I mentioned above was what worked best, but still wasn't the easiest.
*Pouch slings. They worked ok when he was in casts (still not easy) but his legs didn't fit in them once he had braces.
*Shoes. All those cute little baby shoes? Yeah, Oliver couldn't wear any of them. He didn't get his first pair of shoes until he was 8 months old. I remember seeing all the little girl shoes and thinking I was glad I didn't have a girl because I'd be so sad to not get to use those cute little dress shoes!
*Footy PJs. Soooo many pajamas have feet, or only snap/zip down one leg. None of those worked for Oliver, so when I found something that worked, I stocked up.
There were also certain high chairs and things like that that didn't work well with Oliver's braces. Since he couldn't bend his legs, it made shopping carts and chairs hard to get him in and out of. I was so very thankful that he liked being worn in carriers because it made my life much easier.
Sunday, July 21, 2013
Quick Overview of Clubfoot and the Ponseti Method
When I mention that we have a son who was born with clubfoot, or when I say that we are expecting another baby with the same condition, many people ask what exactly it is. I wanted to do a quick post here to give some basic information about what clubfoot is, the treatment for it, and a bit about our family history with it. Forgive me for not being too specific or scholarly with this...my history major background is cringing at the lack of citations and proof reading. :) One thing I have learned is there is a lot of variation with how things can happen with clubfoot. Each case is unique.
Most of my information has come from Ponseti International website. You can visit it here: http://www.ponseti.info
Clubfoot is a treatable birth defect that occurs in approximately 1 in every 1,000 live births. About half of all of those affected with clubfoot have it in both feet, known as bilateral clubfoot. It occurs in males twice as frequently as females. I find this especially interesting since Oliver had bilateral clubfoot, Lucy wasn't affected, and now we have another son on the way who is expected to have a right clubfoot.
Physicians have observed that fetuses that develop clubfoot start with a normal foot and then the foot begins to turn inward around the third month. Most children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth. (http://www.ponseti.info/clubfoot-and-the-ponseti-method/what-is-clubfoot/learn-about-clubfoot.html)
It is not known exactly what causes clubfoot. While it is not always genetic, there is a family history in some cases. My husband, Jay, was born with clubfoot. He had casts and an extensive surgery on one foot.
Thankfully, the surgery that Jay had as a baby is no longer the norm for treatment of clubfoot. Jay has a lot of pain in that foot, especially if he is on his feet for a long period of time. The "gold standard" for treating clubfoot now is called the Ponseti method.
The Ponseti method is mainly non-surgical. It is recommended that it begins within the first week or two after birth to take advantage of the baby's flexibility. The baby's foot is turned into a specific position and casted. The casts are then changed every 5-7 days. Most clubfeet can be corrected with 5-7 castings (sometimes less, sometimes more). At the end of the castings, a minor surgery is usually needed to lengthen the baby's tendon(s). This is called a tenotomy and the baby will be casted again afterwards. This cast is left on for a longer period of time (usually 3 weeks, although this can vary). Some doctors do this surgery in office with a local anesthetic; others prefer to do it in an operating room under general anesthesia.
After the last casts come off, the baby wears a brace. Called "bar and boots", this is a brace that keeps the baby's feet in place. A pair of "shoes" (special orthodic shoes called AFOs) is placed at a specific degree keeping the baby's feet turned outwards and set onto a bar. There are different types of bar and boots braces. Some are a fixed bar, in which the baby must move their feet simultaneously. Others are a hinged bar (called a Dobbs bar, developed by Dr. Matthew Dobbs, one of the nation's leading experts in clubfoot) and allows the baby to move their feet separately. It is recommended that the child wear the brace for 23 hours a day for the first 3 months and then slowly work down to wearing the brace just while they are sleeping. Children usually wear the brace during the night for up to 4 years (sometimes more) to prevent relapse. This website shows the Dobbs bar and some adorable children wearing them! http://www.dobbsbrace.com/
Oliver's treatment seemed to follow the Ponseti method except for the bracing. He was also one of the few who did not need the tendon surgery. Oliver wore KAFO braces and was done just after his first birthday. As I read about stories of relapse, I am amazed at how God took care of our little guy. I'm not sure why our orthopedic doctor at the time varied from the Ponseti method when it came to Oliver's bracing treatment. I'm just thankful it all worked out.
While it is said that the Ponseti method is not exactly difficult to learn, it is very precise. We live just outside of a major city in Indiana that has a large orthopedic practice. However, there are no orthopedic doctors sub-specialized in pediatrics within this group, so none of them know how to treat clubfoot. Each cast has to be set a specific degree and variation. The doctor that we saw with Oliver is no longer practicing due to health issues, so we are in the process of looking at our options. In about a week and a half I have a consultation with a doctor about two hours away. I have also been in touch with Dr. Dobbs who is located in St. Louis. After my consultation with the doctor who is located in our state, Jay and I will discuss what option would be best for our family.
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| It never ceased to amaze me how happy this little guy was. He has brought us so much joy! |
Thursday, July 18, 2013
Oliver's Braces
After we found out the news that Oliver was going to be done with casts on October 30, 2008 we had to go and get him fitted for his KAFO (Knee, Ankle, Foot Orthodic) braces. Honestly, I can't remember now how soon after his casts came off that we went for the fitting. I don't think it was the same day, perhaps the next day. Oliver had a weekend of "free feet" in between getting his casts off and getting his new braces. It was so nice to have that time with him! I remember being ecstatic that the casts were off and we were ready for the new phase of his treatment. I really had no idea what to expect with the braces, but surely they had to be better than casts, right?!
When we went for his braces fitting, they showed us a bunch of different "plates" that had design on them for the braces. We decided on the blue swirl one, and I remember thinking how cute the girly patterns were. Then the casted him (ugh, I grew to HATE anything to do with casts) with some quick-setting material and cut the casts off. Boy was it nice to see a cast come off right away! Oliver was fidgety during the casting, and I just kept telling him it was going to come right off. He was pretty much a pro at being casted by this point, but you could tell he was still not a big fan of the whole process.
I didn't think the braces would be too big of a deal. I'm not sure why...it just seemed so much better having a baby in leg braces than in casts. I still have both sets of Oliver's leg braces. They look so tiny now when I look at them. Its hard to believe he was just two months old when he got his first pair.
It was awesome being able to give our little guy a real bath. I loved those times with him. In that way, the braces were WAY better than the casts.
As Oliver got bigger and more mobile, especially at night, his braces made co-sleeping harder. I would often get bruises from him kicking me during the night. I considered transitioning him to his own bed many times, but I really loved having him close. Despite the obstacles, co-sleeping still worked best for us.
In some ways, I think having the braces made things a little harder for Oliver. He didn't sit up on his own until almost 7 months. He rolled from his belly to his back very early (at one month) but didn't roll from back to belly until about 7 months also. Who knows....none of those things made him "delayed" exactly. It was just you could tell the braces would get in his way sometimes.
Once Oliver was in braces, we went back to Dr. Cummiskey after one month and then every 3 months. Oliver continued to wear the braces for 23 hours for most of that time. Around 8 months old, I took him for a routine check-up and was told he could just wear them at night. I was shocked! I really didn't know what the wearing schedule would be; it was all just kind of touch and go for awhile to see how he was doing. We went back about two and a half months later to make sure he wasn't relapsing, and that check-up went awesome as well.
Having Oliver in braces just at night made our life so different. We were able to put him in a high chair at a restaurant, something we hadn't been able to do before because it was hard to get the high chair close enough to the table since he couldn't bend his knees. Just carrying him felt so different. He never fought us to put them on at night, and it just seemed like we were slowly moving away from all that we went through with him as an infant. It was nice.
Oliver's next appointment was when he was just over a year old. He wasn't quite walking yet, but the doctor was able to see him walk holding on to my hands and see how his foot placement was. Dr. Cummiskey was very pleased.
At that check-up in September 2009 we were told that Oliver's feet looked so good that we were going to try going braces-free for awhile and see how he did. That was the most wonderful news. I had no doubt that his feet would continue to look perfect. The possibility of relapse never really entered my mind. Two months later we went back and he still looked great. Oliver started walking around 14 months or so.
We scheduled another appointment for six months later. We had hopes that it would be his last appointment. We continued to do the stretches that we had been doing since his casts came off and his feet remained flexible.
I was a bit nervous before his last appointment with Dr. Cummiskey. It didn't seem possible that we were actually done. How could that be? It seemed like we were just coming in for his first casting.
It was such a bittersweet appointment. I really didn't want to tell these two amazing people good-bye, and yet I was *thrilled* that we didn't have to come back and see them. At that appointment, Nurse Deb told us that a mother had come in with her infant son who also had clubfoot. She asked if we would mind going to see her and showing her what Oliver's feet looked like. That made the appointment even more special. We were able to encourage this new mother and tell her how great Oliver had done with treatment. I have never forgotten that mother or her sweet boy. They have stayed in my prayers and I have often wondered how they are doing. Amazingly enough, after we found out about baby Max's foot, I was able to reconnect with that mother. I had found a clubfoot support group on facebook and she replied to my post. I feel like that was really a God thing.
When I think of what lies ahead for us with baby Max, the braces part of his treatment is the most unknown. Of all the doctors I have spoken with, none of them follow the same protocol with bracing as Dr. Cummiskey did. In fact, none of them even use the same type of brace. They all use a type of "bar and boots" system, where the baby has "shoes" that are attached to a bar between the feet. I'll do another post about that. Honestly, as I research more, I am amazed that Oliver did not relapse since we stopped his braces so soon. Most doctors recommend clubfoot babies/children wear their braces for many years, sometimes up until age 4 or 5. It is almost unheard of to stop at age 1 because the relapse rate is so high. I am so, so thankful that Oliver did so well. It makes me very nervous and sad to think of what lies ahead for Max. This is the part where when people say, "Well, you've been through this before at least you know what to expect", I have to say, "Well, no. Not exactly." The unknown is always the scariest.
When we went for his braces fitting, they showed us a bunch of different "plates" that had design on them for the braces. We decided on the blue swirl one, and I remember thinking how cute the girly patterns were. Then the casted him (ugh, I grew to HATE anything to do with casts) with some quick-setting material and cut the casts off. Boy was it nice to see a cast come off right away! Oliver was fidgety during the casting, and I just kept telling him it was going to come right off. He was pretty much a pro at being casted by this point, but you could tell he was still not a big fan of the whole process.
I didn't think the braces would be too big of a deal. I'm not sure why...it just seemed so much better having a baby in leg braces than in casts. I still have both sets of Oliver's leg braces. They look so tiny now when I look at them. Its hard to believe he was just two months old when he got his first pair.
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| November 2008. Oliver's first pair of KAFO (Knee, Ankle, Foot Orthodic) braces. |
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| We got to pick out the blue swirl design for them. I remember thinking how much cuter the girl patterns were. ;) |
I was somewhat
surprised by how "bulky" the braces seemed. The casts were heavy and
big, but the braces were really wide especially at the top. The first
night we got them, I tried to put him in a pouch sling and couldn't
really get him in. I had been able to wear him in that particular sling
while he was in casts, but the braces were really just too big. I was
taken off guard by that and was sad. Just another reminder of how
things were never going to be "normal" for us.
Oliver
had to wear his braces for about 23 hours a day. We were allowed to
take them off for an hour a day, and I usually split it up into two half
hour times. At first I was very, very strict about it but I'll admit
as the months went on there were times I would let him be out of them
for a bit longer. Not too long, I didn't want his feet to turn back in,
but I didn't watch the clock like a hawk every time I took them off.
It was awesome being able to give our little guy a real bath. I loved those times with him. In that way, the braces were WAY better than the casts.
Oliver
adjusted really well to the braces. He never really seemed bothered by
them at all. He was such a happy, easy going baby. Amazing, really,
considering all he had gone through in such a short period of time.
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| Our happy little guy. Pants that were wide and/or stretchy were a necessity to fit over his braces. They were quite wide, especially at the top. |
As Oliver got bigger and more mobile, especially at night, his braces made co-sleeping harder. I would often get bruises from him kicking me during the night. I considered transitioning him to his own bed many times, but I really loved having him close. Despite the obstacles, co-sleeping still worked best for us.
In some ways, I think having the braces made things a little harder for Oliver. He didn't sit up on his own until almost 7 months. He rolled from his belly to his back very early (at one month) but didn't roll from back to belly until about 7 months also. Who knows....none of those things made him "delayed" exactly. It was just you could tell the braces would get in his way sometimes.
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| My sweet boy learning to sit up on his own. Look at those awesome-looking feet! :) |
Once Oliver was in braces, we went back to Dr. Cummiskey after one month and then every 3 months. Oliver continued to wear the braces for 23 hours for most of that time. Around 8 months old, I took him for a routine check-up and was told he could just wear them at night. I was shocked! I really didn't know what the wearing schedule would be; it was all just kind of touch and go for awhile to see how he was doing. We went back about two and a half months later to make sure he wasn't relapsing, and that check-up went awesome as well.
Having Oliver in braces just at night made our life so different. We were able to put him in a high chair at a restaurant, something we hadn't been able to do before because it was hard to get the high chair close enough to the table since he couldn't bend his knees. Just carrying him felt so different. He never fought us to put them on at night, and it just seemed like we were slowly moving away from all that we went through with him as an infant. It was nice.
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| Oliver around 8 months old. Enjoying some braces free time. His feet look perfect! |
Oliver's next appointment was when he was just over a year old. He wasn't quite walking yet, but the doctor was able to see him walk holding on to my hands and see how his foot placement was. Dr. Cummiskey was very pleased.
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| September 2009. It was fun watching Oliver "walk" around the examining room. He had come so far. |
At that check-up in September 2009 we were told that Oliver's feet looked so good that we were going to try going braces-free for awhile and see how he did. That was the most wonderful news. I had no doubt that his feet would continue to look perfect. The possibility of relapse never really entered my mind. Two months later we went back and he still looked great. Oliver started walking around 14 months or so.
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| Oliver, November 2009. Two months braces free and his feet remained looking great. |
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| Oliver, April 2010. Seeing him run just made my heart soar. |
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| There is something extremely sweet about seeing this little boy running. He is truly our walking miracle. |
I was a bit nervous before his last appointment with Dr. Cummiskey. It didn't seem possible that we were actually done. How could that be? It seemed like we were just coming in for his first casting.
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| "Really?! I'm done?! YAY!" |
It was such a bittersweet appointment. I really didn't want to tell these two amazing people good-bye, and yet I was *thrilled* that we didn't have to come back and see them. At that appointment, Nurse Deb told us that a mother had come in with her infant son who also had clubfoot. She asked if we would mind going to see her and showing her what Oliver's feet looked like. That made the appointment even more special. We were able to encourage this new mother and tell her how great Oliver had done with treatment. I have never forgotten that mother or her sweet boy. They have stayed in my prayers and I have often wondered how they are doing. Amazingly enough, after we found out about baby Max's foot, I was able to reconnect with that mother. I had found a clubfoot support group on facebook and she replied to my post. I feel like that was really a God thing.
When I think of what lies ahead for us with baby Max, the braces part of his treatment is the most unknown. Of all the doctors I have spoken with, none of them follow the same protocol with bracing as Dr. Cummiskey did. In fact, none of them even use the same type of brace. They all use a type of "bar and boots" system, where the baby has "shoes" that are attached to a bar between the feet. I'll do another post about that. Honestly, as I research more, I am amazed that Oliver did not relapse since we stopped his braces so soon. Most doctors recommend clubfoot babies/children wear their braces for many years, sometimes up until age 4 or 5. It is almost unheard of to stop at age 1 because the relapse rate is so high. I am so, so thankful that Oliver did so well. It makes me very nervous and sad to think of what lies ahead for Max. This is the part where when people say, "Well, you've been through this before at least you know what to expect", I have to say, "Well, no. Not exactly." The unknown is always the scariest.
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| Nurse Deb, Dr. Cummiskey, and Oliver. These two people will forever keep a very special place in our hearts. They became like family to us. |
Sunday, July 14, 2013
Tiny Baby in Leg Casts
It was definitely an adjustment seeing Oliver in casts. He was so tiny (he was only 6 lbs 14 oz when he was born) and his casts felt so big. When I was out with him, I would often get questions and stares from strangers. Thankfully no one ever said anything rude (I've heard from other clubfoot parents who have some horror stories). But its still felt so strange to have anyone say, "Oh, what a sweet baby. Oh gosh, why does he have casts on his legs?!" When I had the chance to actually explain to them what was going on, they were always surprised that the casts were not, in fact, a result of foot surgery but instead a series of castings that would hopefully correct his feet without surgery.
One part of Oliver's treatment that was unique and that we will not experience with Max is that each week I had to soak off his plaster casts at home. I have recently found out that this is not recommended, and the doctors I have spoken with do not have parents do this. It is because they want as small of a window of time in between casts as possible to prevent the feet from turning back in. I completely understand this, but I have to admit I'm a little sad. It was always so nice to have that one night a week with baby Oliver and his "free" feet and legs.
The first night I had to soak off his casts was a complete disaster. Jay was working nights, and Oliver was two weeks old. I really had no idea what I was doing...I had read some suggestions and the nurse had told me a few ideas but it was so awkward! I was paranoid because his umbilical cord "stump" was still on and I was trying not to get it wet. I thought doing it in the kitchen sink would be best. Um, no! Our sink was small and I couldn't get him in a comfortable position. I got out a bucket that fit well into our sink and put water in it, along with some vinegar because that was supposed to help soften the casts. (This was the only time I used vinegar. I didn't think it worked that well and it smell was just too strong for me!) So here I am, trying to hold a 2 week old infant in a bucket of water, up to the top of his thighs without getting his belly button wet. Ha! He screamed, I cried, and it took close to two hours!! We were both soaked by the end. I started unwrapping his casts at the top and worked my way down. By the time I got close to his feet I could just slip the bottom "foot" part off. I have never felt such relief as when I was able to get those casts off! I cried seeing his precious little feet again.
That first night of no casts I spent so much time just looking at his feet and legs and touching them. The doctor had warned us that his feet might be especially sensitive, since they weren't used to any stimulation, but Oliver never really seemed to experience this. As soon as I got his casts off, I wrapped him in a towel and he curled right up on my chest. I sat with him in the recliner in his room for over an hour just loving my little boy.
The second casting was emotional as well. I really, really dreaded that appointment again. His feet looked so different, and so good, that I hated that they were going to be covered up again. I just wanted to have a "normal" experience of a baby without casts. He felt so much smaller without his casts on and I started to feel like I was really missing out on so much of having a newborn. Just the little things really bothered me, like not being able to give him a normal bath and having to really watch what kind of clothes we bought for him to make sure they would fit over his casts.
He seemed to be in a lot of pain with the second castings also. The doctor did some stretches with him and he cried during those. That night went better than our first night, though, and each week seemed to get easier and easier. Well, as easy as it can get when your infant is in casts. Sometimes I hate saying its "easier". I don't want people to think it isn't as big of a deal as it really is. Its all relative.
One thing that did get easier each week was being able to soak off the casts. I just now remembered that Jay was home for one of the weeks of soaking them off, and he videotaped it. I haven't watched it since we filmed that, so I will have to try to get that out sometime and watch it. After that first time of attempting the kitchen sink, I said forget it and just got in the bathtub with him and did it that way. By this time I was pretty much healed from childbirth and didn't mind getting in the tub in a bathing suit to unwrap the plaster. I remember one week I was unwrapping his casts and I noticed blood on them. I immediately started checking everywhere to see where he could possibly be bleeding. I was freaking out that he was hurt somewhere. It took me a couple of minutes to notice the cut on my finger and realize it was MY blood! The plaster could occasionally be sharp as I unwrapped it and I cut my fingers a few times over the weeks. Of course being in the water made it look much worse than it really was. I actually grew to really enjoy those nights of getting his casts off. I always tried to stop unwrapping them once I got to his foot so I could slip that part off and keep it. I have a whole bag full of little Oliver foot casts and cast wrappings.
Its hard to remember each casting appointment because they were just a way of life for awhile. I do remember one particularly great appointment for him. The nurse was so happy when she saw his feet before the doctor came in. No one usually said too much about his feet, just that they were looking good. This time you could tell Nurse Deb was really surprised and excited with how great they looked. When she came back in with Dr. Cummiskey it was like she couldn't wait for him to see them. He kept saying how great they looked, and it made my heart soar to know that all we were going through was worth it. During that casting, Oliver was crying, and I just kept whispering, "Its ok, baby, its ok" and Dr. Cummiskey said, "Oh Oliver, its beyond ok! Your feet are looking amazing! Seriously, we rarely see this much progress this fast. I am just in shock." At that appointment, we thought we might only need one more set of casts. I was SO excited. It turned out he needed two more sets, and even though it was disappointing at the time, I am now able to look back and really see how awesome his progress was.
October 30, 2008. Oliver was just over two months old, and we were thrilled at that day's appointment to learn that he didn't need any more casts. His last two sets of casts had stayed on for two weeks each. The doctor hadn't told us for sure when he would be done, and we had gone in prepared for another set. Dr. Cummiskey was so pleased that he decided Oliver was done with casts and would not need a tenotomy. That was the biggest relief. Most children (I have read as many as 80%, sometimes more) need this surgery once they are done with castings. We had prepared ourselves for the possibility of it. Basically they cut the baby's achilles tendon to release the foot, then cast it again while it heals. I was so, so relieved that Oliver didn't need it. Dr. Cummiskey commented again with how great Oliver's feet had responded to treatment. All I could say was, "God is good."
Oliver had several days in between casts and braces. Again, this is not something we will experience with Max as the doctors I have spoken to want as little time between casts and the brace. Also, the brace that Oliver went into (KAFO...knee, ankle, foot, orthodics) is a brace that I have not seen used again. Of all the clubfoot parents I have talked to and the doctors I have spoken with lately, they all use a bar and boots system. I'll talk more about Oliver's braces in another post.
It was hard to believe we were done with casts. It seemed like we had just started, and we were so used to going to these appointments. I was so proud of our little boy, and so so relieved to be done with this part of his treatment.
One incredible thing was how quickly Oliver met milestones even with his casts on. We were at his one month well check-up, and the doctor put him on his belly to see how he did. The doctor told us that he might experience some delays because of the casts, and to not be concerned if it took him a bit longer to do things like roll over. Right after he said this, Oliver rolled from his belly to his back! We had to laugh, and at first thought it might have just been an "accident." But no. Oliver proved us all wrong, and at just one month old was rolling over like crazy. Especially for first time moms, it can become an obsession if your baby isn't meeting milestones right on time. I was so glad to have one less thing to be worried about at that time.
One part of Oliver's treatment that was unique and that we will not experience with Max is that each week I had to soak off his plaster casts at home. I have recently found out that this is not recommended, and the doctors I have spoken with do not have parents do this. It is because they want as small of a window of time in between casts as possible to prevent the feet from turning back in. I completely understand this, but I have to admit I'm a little sad. It was always so nice to have that one night a week with baby Oliver and his "free" feet and legs.
The first night I had to soak off his casts was a complete disaster. Jay was working nights, and Oliver was two weeks old. I really had no idea what I was doing...I had read some suggestions and the nurse had told me a few ideas but it was so awkward! I was paranoid because his umbilical cord "stump" was still on and I was trying not to get it wet. I thought doing it in the kitchen sink would be best. Um, no! Our sink was small and I couldn't get him in a comfortable position. I got out a bucket that fit well into our sink and put water in it, along with some vinegar because that was supposed to help soften the casts. (This was the only time I used vinegar. I didn't think it worked that well and it smell was just too strong for me!) So here I am, trying to hold a 2 week old infant in a bucket of water, up to the top of his thighs without getting his belly button wet. Ha! He screamed, I cried, and it took close to two hours!! We were both soaked by the end. I started unwrapping his casts at the top and worked my way down. By the time I got close to his feet I could just slip the bottom "foot" part off. I have never felt such relief as when I was able to get those casts off! I cried seeing his precious little feet again.
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| After our first night of soaking off his casts. AMAZING progress! I have recently found out that most doctors do not recommend parents soak the casts off the night before a new cast is put on because of the risk of losing progress, so I am especially grateful that Oliver did so well. I really looked forward to our one "free" night a week of loving on his little legs and feet. |
That first night of no casts I spent so much time just looking at his feet and legs and touching them. The doctor had warned us that his feet might be especially sensitive, since they weren't used to any stimulation, but Oliver never really seemed to experience this. As soon as I got his casts off, I wrapped him in a towel and he curled right up on my chest. I sat with him in the recliner in his room for over an hour just loving my little boy.
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| On our way to get his second casts put on. Funny, once they were on it was hard to remember them ever being off. They quickly became part of our new "normal." |
The second casting was emotional as well. I really, really dreaded that appointment again. His feet looked so different, and so good, that I hated that they were going to be covered up again. I just wanted to have a "normal" experience of a baby without casts. He felt so much smaller without his casts on and I started to feel like I was really missing out on so much of having a newborn. Just the little things really bothered me, like not being able to give him a normal bath and having to really watch what kind of clothes we bought for him to make sure they would fit over his casts.
He seemed to be in a lot of pain with the second castings also. The doctor did some stretches with him and he cried during those. That night went better than our first night, though, and each week seemed to get easier and easier. Well, as easy as it can get when your infant is in casts. Sometimes I hate saying its "easier". I don't want people to think it isn't as big of a deal as it really is. Its all relative.
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| PJs that did not have feet, and snapped all the way down both legs, became a staple of Oliver's wardrobe. This was his second set of casts. |
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Grandpa holding a tiny Oliver.
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| For whatever reason, this set of casts did not go up as high on his legs as some of his earlier ones. Its kind of hard to tell at the angle of this photo but with each casting, his feet were set at a different degree according to the Ponseti method of treatment. |
One thing that did get easier each week was being able to soak off the casts. I just now remembered that Jay was home for one of the weeks of soaking them off, and he videotaped it. I haven't watched it since we filmed that, so I will have to try to get that out sometime and watch it. After that first time of attempting the kitchen sink, I said forget it and just got in the bathtub with him and did it that way. By this time I was pretty much healed from childbirth and didn't mind getting in the tub in a bathing suit to unwrap the plaster. I remember one week I was unwrapping his casts and I noticed blood on them. I immediately started checking everywhere to see where he could possibly be bleeding. I was freaking out that he was hurt somewhere. It took me a couple of minutes to notice the cut on my finger and realize it was MY blood! The plaster could occasionally be sharp as I unwrapped it and I cut my fingers a few times over the weeks. Of course being in the water made it look much worse than it really was. I actually grew to really enjoy those nights of getting his casts off. I always tried to stop unwrapping them once I got to his foot so I could slip that part off and keep it. I have a whole bag full of little Oliver foot casts and cast wrappings.
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| This was the second night I soaked his casts off. He had been in casts for two weeks at this point. It never ceased to amaze me the difference in his feet and how quickly it happened. |
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| On our way for more casts again. The better his feet looked the more I hated having to cover them in casts. They began to look so normal! |
Its hard to remember each casting appointment because they were just a way of life for awhile. I do remember one particularly great appointment for him. The nurse was so happy when she saw his feet before the doctor came in. No one usually said too much about his feet, just that they were looking good. This time you could tell Nurse Deb was really surprised and excited with how great they looked. When she came back in with Dr. Cummiskey it was like she couldn't wait for him to see them. He kept saying how great they looked, and it made my heart soar to know that all we were going through was worth it. During that casting, Oliver was crying, and I just kept whispering, "Its ok, baby, its ok" and Dr. Cummiskey said, "Oh Oliver, its beyond ok! Your feet are looking amazing! Seriously, we rarely see this much progress this fast. I am just in shock." At that appointment, we thought we might only need one more set of casts. I was SO excited. It turned out he needed two more sets, and even though it was disappointing at the time, I am now able to look back and really see how awesome his progress was.
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| After three weeks of casts. I remember worrying that his feet were "over"corrected this time, but it was all just part of the process. The next morning Dr. Cummiskey was thrilled with how they looked. |
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| I've always loved this picture of little Oliver. This was a very good appointment for him! |
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| October 29, 2008. I didn't realize it at the time, but I had just soaked off his last set of casts! We were expecting one more set and got exciting news the next morning. |
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| Such an exciting day! Oliver was *DONE* with casts earlier than expected!! It was the day before Halloween, so I celebrated by putting some adorable pumpkin socks on him. |
Oliver had several days in between casts and braces. Again, this is not something we will experience with Max as the doctors I have spoken to want as little time between casts and the brace. Also, the brace that Oliver went into (KAFO...knee, ankle, foot, orthodics) is a brace that I have not seen used again. Of all the clubfoot parents I have talked to and the doctors I have spoken with lately, they all use a bar and boots system. I'll talk more about Oliver's braces in another post.
It was hard to believe we were done with casts. It seemed like we had just started, and we were so used to going to these appointments. I was so proud of our little boy, and so so relieved to be done with this part of his treatment.
One incredible thing was how quickly Oliver met milestones even with his casts on. We were at his one month well check-up, and the doctor put him on his belly to see how he did. The doctor told us that he might experience some delays because of the casts, and to not be concerned if it took him a bit longer to do things like roll over. Right after he said this, Oliver rolled from his belly to his back! We had to laugh, and at first thought it might have just been an "accident." But no. Oliver proved us all wrong, and at just one month old was rolling over like crazy. Especially for first time moms, it can become an obsession if your baby isn't meeting milestones right on time. I was so glad to have one less thing to be worried about at that time.
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