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.

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.

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!"

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.

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.

I loved this wrap! It was so easy to get Oliver in and out with his braces on.

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.

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.

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.  

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.

He loved bouncing. :)

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.

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.

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.

It never ceased to amaze me how happy this little guy was. He has brought us so much joy!

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.