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.

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. 

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.

November 2008.  Oliver's first pair of KAFO (Knee, Ankle, Foot Orthodic) braces.

We got to pick out the blue swirl design for them. I remember thinking how much cuter the girl patterns were. ;)

His little leg. He would end up having two sets of these braces before he was done with them. They were slightly adjustable; I think each set was lengthened a bit one time.

We became experts on which socks fit best with the braces.  Tall, thin socks (Target Circo ones were my favorite.) quickly filled his sock drawer. 

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. 

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.

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.

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.

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.

Oliver, November 2009. Two months braces free and his feet remained looking great.

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.

Oliver, April 2010.  Seeing him run just made my heart soar.

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.

"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.

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.

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.

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.

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.

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.

Grandpa holding a tiny Oliver.

Adding a little bit of love to those plaster casts.

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.

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.

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.

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.

I've always loved this picture of little Oliver.  This was a very good appointment for him!

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."

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.

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.

Oliver's First Casting

Oliver was born on Tuesday, August 26, 2008 at 5:17 pm.  His birth was quite an experience in itself, as I was induced almost 3 weeks before my due date for PIH (pregnancy induced hypertension).  I have never felt so in love as when Dr. Davis laid that precious little baby boy on my chest.

I remember that the nurses asked us shortly after he was born if we knew about his feet.  We told them we did, and I remember my heart breaking just a little bit that God had not miraculously straightened his feet already.  I wasn't so much upset as I was more just resigning to the fact that we would indeed be going through all the treatments we had learned about.  I remember silently asking God, "Why didn't you answer my prayers?" and in that moment was one of the only times I have very clearly felt God answer my question so immediately.  It was like in my mind I heard, "Be still, new mother.  I have answered them, just not as you have expected."  I'll never forget that.  I looked around, almost expecting that someone else had heard it as well.  God spoke directly to my heart in that moment and gave me a peace about the upcoming months.

Oliver in the hospital bassinet. My perfect, precious baby.

Our first week with Oliver was wonderful.  I spent a lot of time just staring at his feet, thinking about how perfect they looked to me despite knowing that, actually, they weren't.  They would need to be changed, to be fixed.  That's hard for a new mother to go through.  Everyone feels like their baby is just perfect, and to know that they have to be fixed is heart breaking.  I remember telling Jay that a part of me (the emotional, illogical, newly postpartum mama part) didn't want Oliver to go through the castings because I didn't want him changed.  He was my perfect, precious little baby and I didn't want them changing anything about him.  But I knew that for him to have the best quality of life, this is what needed to be done.  Without treatments, he would never really be able to walk.  That's such a horrible realization.

Oliver was 8 days old when he had his first casts put on.  Jay was working second shift then, and had just gone back to work after being off for a week with us.  The night before Oliver's first casting was extremely hard.  I remember holding him and just sobbing because I was so scared of what the next day would bring.  During our prenatal appt with Dr. Cummiskey, our orthopedic doctor, he had told us as much as he could about what to expect, but there's really no way to prepare yourself for your newborn to be put in full leg casts.  I wondered how I would possibly give him a bath.  How I would hold him on my chest when he couldn't curl up on me any more the way babies like to sleep.  I put him in several different footy PJ sleepers that evening just because I didn't know if he'd ever really be able to wear them again.  I prayed over my baby boy that he wouldn't be in too much pain.  I felt so sick to my stomach the whole evening, and didn't sleep much that night.  Before bed I sent this email to a friend...

"Oliver's appt is at 11 Wednesday morning with the foot specialist..

.The doctor is able to do the procedure there in his office.  I'm just so nervous and upset about it.  I can't believe my little baby has to have casts on his legs.  I know it'll be ok, and don't get me wrong I'm thankful that this is the worst we have to deal with.  But its still hard, and breaks my heart.  I've been laying here on the floor with him and just want to cry as he kicks his legs because I know tomorrow he won't be able to do that, and he won't understand why.  I've been cuddling him all night and just feeling his little legs and feet.  Ugh, this is killing me."

Oliver the night before his first casting.

 

I'm so thankful that I took lots of pictures of Oliver's feet before and after each casting.  Especially the first one. Its hard to believe what his little feet looked like then, and how quickly they changed. He was so tiny, and those casts looked so big.

On our way to his first appointment. His orthopedic doctor was only about 30 minutes away.

The first casting appointment was by far the hardest. We sat in the waiting room, and I held Oliver, dreading our name being called.  I wanted it over with, and I didn't want it to begin, all at the same time.

I remember purposely holding him on my chest like this, as I knew I wouldn't be able to very easily after his casts were on.

The first casting was by far the worst.  Its hard to even think about.  Dr. Cummiskey came in and said that Oliver's feet were very typical looking for bilateral clubfoot.  Oliver laid on the doctor's table with Dr. Cummiskey on his stool in front of him.  I stood to his side, leaning over Oliver and talking to him.  Jay stood behind me, and rubbed my back.  The doctor later told us he would never forget the way our family interacted during these appointments...Jay supporting me, me supporting Oliver.  When Dr. Cummiskey took Oliver's foot and turned it before setting that first cast...oh my gosh. I thought I was going to vomit and pass out all at the same time.  It was horrific.  I couldn't believe a doctor could turn a baby's foot like that without breaking it.  Oliver's screams from that pain haunted me.  The way he grabbed at me, like he was begging me to rescue him from the pain...it wasn't long before I couldn't tell anymore if it was his tears or mine on his face.  It seemed to take forever but it wasn't long before they were ready for the second foot.  I just kept telling Oliver over and over that it is ok, Mommy is here, it'll be over soon, that I love him.  I would remind him to take a breath, because he was just red and silent crying after awhile, as if he could possibly understand what I was saying.

It was finally over and my little boy's legs were completely covered in plaster.  The nurse picked him up and kissed him and handed him to me, saying to take our time and cuddle him before putting him back in his carseat. I felt like my heart was in a million pieces. Nurse Deb told us the proper dosage for Tylenol that we could give him (which, for an 8 day old, is next to nothing) to help ease the pain. She even told us that most infants have not yet developed the ability to cry tears, but that Oliver was in a lot of pain and to expect a possibly rough night.  When people tell me that at least Oliver's treatment was done as a newborn and he won't ever remember it, I wish they could possibly understand what we went through that first casting appointment.  He may never remember, but I absolutely will never forget.  His pain was very real, and very difficult to experience.  For everyone.

If I remember correctly, these first casts weighed about half a pound total.  Seems like such a small amount, but he felt so much heavier with these on.

Our first night was tough.  We spent most of the time in bed cuddling.  I cried, a lot.  It seemed so unfair that our baby was going through this.  I just wanted to cuddle him and it was so awkward.  He would wake up screaming and I felt so helpless. I sent this message to some friends later that night:

"They  [the casts] cover most of his feet and legs.  He feels so heavy now.  He sleeps for a bit and then wakes up crying inconsolably.  Nothing I do can help he is in pain and doesn't know why.  We were able to give him a little bit of baby tylenol so i'm hoping that kicks in soon.  He cried his first real tears today when he was crying at the dr.  Broke my heart. Jay could barely stand to leave for work.  Its going to be a long night."

Until that night, Oliver had slept some in a bassinet by our bed, and we had spent many nights in the recliner holding him.  We hadn't really settled on the idea of bedsharing just yet, but neither Jay or I wanted him in his crib in his room.  That night when Jay got home from work, I was laying in bed with him and just said, "Please...is it ok if he sleeps here with us tonight? He's in so much pain."  Of course Jay didn't mind, and for the next 2.5 years Oliver slept with us. :)  We couldn't stand the thought of him waking up in pain by himself.  We used to get a lot of grief from people about bedsharing and I would just say, "You don't understand what we've been through. He needs to be close to us." 

When I think of baby Max (due this September) and his clubfoot, it is the first casting that makes me the most upset.  Thinking of the pain Oliver went through is enough to bring me to tears in an instant, and it's devastating to know that we will go through this again with another child.  I know it gets better and the end result is so worth it.  But I'm basically being asked to relive the worst day of my life.  I'm still searching for some peace with the whole thing.  I'm getting there, and God is carrying me when I don't feel like I can carry myself.