Consultation with Dr. Kayes

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.

Baby #3..Anxiously Waiting

Our first two children, Oliver and Lucy, are just over three years apart.  We had hoped to have them more a little closer together, but it took six months to get pregnant with Lucy.  I knew that I wanted less space between Lucy and the next one, but had never really thought for sure how much space.

Lucy was pretty much exclusively breastfeeding for 9 1/2 months.  She had some solids here and there after six months, but it didn't become part of her regular diet until after nine months.  I tried, but she just had no interest!  She also did not sleep more than 3 hours at a time until 8-9 months, so I was nursing very consistently.  My cycle did not return until she was exactly 11 months old, and so until that point I hadn't really given a lot of thought as to when we would have another child.

Once it became a possibility that we could get pregnant again, we talked more about when we wanted another child.  The pressure of trying to conceive Lucy was so extremely hard for me that I knew I didn't want that again.  I didn't want to wait until one particular month when I knew that was exactly when I would want to get pregnant and then not have it happen and be disappointed.  So we decided to just let things go and see what happened.  I wasn't tracking my cycles to try to get pregnant, and we weren't actively avoiding it either.  (Except for one month, when I realized if we got pregnant then, I would be due on my birthday, which is the day after Jay's birthday, and about a week before Oliver's. I really preferred not to have another August birthday!)  I knew that having children closer together could be tough, but I was okay with that.

I had four cycles before getting pregnant with baby #3.  They were very irregular, and if I hadn't learned so much about my fertility when we were trying to conceive with Lucy, I would have had no idea when anything was going on during those cycles.  The fifth cycle when we did conceive was also very irregular.  When I'm pregnant, I immediately start showing symptoms.  The same thing happened this time.  I took several early tests that were negative because I took them too soon, but I was just so sure I was pregnant.  Finally, 35 days into my cycle, I got a positive test.  It was mid-January, 2013.  According to my last menstrual cycle, I was 5 weeks pregnant, but I knew I had ovulated late and was only 4 weeks.  (An early ultrasound with my midwife confirmed that I was right with how far along I was.)

The pregnancy was strange.  My early symptoms (middle of the night sickness, breast tenderness, aversion to smells) coincided exactly with Oliver's pregnancy.  I told Jay right away that I was saying this one was a boy.  Then, for about two weeks, all of my symptoms disappeared.  It was during these two weeks that I got my positive test.  I was pretty worried for awhile that things may not be going well because of the lack of symptoms.  Oh, how I spoke too soon.  I ended up being so sick for more than half of the pregnancy, which was more like Lucy's pregnancy.  With our first two pregnancies, we told everyone right away.  This time, we decided to wait awhile.  I really wanted to make sure that things were ok with the baby, and just wanted to keep this to ourselves for awhile before telling all of our friends and family.

My first appointment was in early February.  By that point I was feeling nauseated a lot and didn't have a big appetite.  I was still feeling like this pregnancy was a lot like Oliver's, and in the back of my mind I wondered if in fact this baby was a boy, if we would deal with clubfoot again.  But I never really even considered it a possibility at that point.  I just thought if we do deal with it, then at least we'll know exactly who to go to and what to expect. We decided to tell our families on Valentine's Day, which was a fun surprise.

Announcing baby #3! This picture makes me laugh.  Oliver is happy, as usual, and Lucy's looking unimpressed, as usual. :-)

Just like in Lucy's pregnancy, I struggled with how to pray for this baby.  I had said in the past, "If Oliver's struggles brought one person to know Jesus Christ, then it was worth it, and I'd do it all over again."  But to be honest, when faced with the reality that maybe we would have to do it all over again, I wasn't so firm in my statement.  Not so much because of my own emotion of it all (although that certain played into it), but because I knew how incredibly painful it would be for the baby.  My prayers would be all over the place..."God, I'm trying to just trust in Your plan.  Please don't let this baby have clubfoot.  But if it does, we will use it for Your glory.  If it does, please let it bring someone to know you.  But please don't let it happen.  But I'll trust you if it does.  I'm just putting this in Your hands, Lord.  But You know my heart.  Please don't let it be."  Yeah, completely and totally disorganized.

I could really feel Satan working on me at times during the pregnancy.  There was one particular Wednesday night service when our pastor was talking about faith and miracles, and mentioned Oliver's healing.  It was right after that that I started feeling so guilty about wanting another "normal" non-clubfoot baby.  I started thinking, "Wow, how selfish of me for wanting that.  I mean, if we had another baby who could be an example of God's grace, how could I be praying against that?"  I have to say, it is astounding to me how Satan knows our weaknesses and uses them against us.  I had to quickly take those thoughts captive and shut them out.  God knew my heart.  He knew I wasn't being selfish praying for my child to not have clubfoot.  I just had to believe that as well.

At the very end of April, I had a quick ultrasound just to see if we could tell the sex of the baby.  I had really hoped to find out because I wanted to have a gender reveal party for this baby.  I thought great, have an ultrasound to see the sex before we have our big ultrasound.  That way, if the baby does have clubfoot, we won't know right away and can just be excited about baby being a boy or a girl.

Well.   Remember how we couldn't tell for sure with Oliver because the cord was laying right between his legs? Yeah.  The SAME THING happened this time!!!!  I couldn't freaking believe it.  My midwife turned on the ultrasound and we looked at his profile and everything, and then she turned it away to see if she could see anything.  She kind of laughed and said, "Ok, you have to see this." and turned the screen back toward us.  She pointed and said, "You see this?  Leg. Cord. Leg.  The umbilical cord is laying right between the legs."  I just had to laugh.  Are you kidding me?!  At that point, it was almost a joke that surely baby had to be a boy since Oliver had done the same thing.  But seriously, why the heck couldn't we tell?!  Pretty much every other person I know has been able to see on their ultrasound the first time whether they are having a boy or a girl.  I was a day away from 19 weeks, so plenty far along.  It was both frustrating and humorous.  So the gender reveal party was postponed. I had to text everyone later and say that perhaps we would have it next month, because baby was very uncooperative!!  During that ultrasound I tried to peak a little at his feet, but didn't really look too hard.  From what I saw, I thought one of them looked fine, but honestly I didn't really want to know just yet.

So the countdown until my big ultrasound continued.  I would be just past 23 weeks when we had that.  Jay was going to go and we would end up taking both kids with us.  In the meantime, I just prayed.  I prayed that God would give me peace about the whole situation.  I prayed that he knew my heart and to forgive me if I was praying against His plan, but to please not make us go through this again.  Part of me really resented the fact that I couldn't just be excited about an ultrasound, but instead spent the beginning half of every pregnancy worrying.  It didn't seem "fair". I really appreciated everyone else who prayed for us during that time as well.  They all seemed confident that we wouldn't have to go through it again, and I clung to that hope. I was both looking forward to and totally dreading May 31.

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.