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.