Thursday, December 12, 2013

A Necessary Break

October 28.

We went down for another casting appointment.  It was the day before Max turned one month old, and I didn't really expect anything out of the ordinary.  My dear friend Becky went with me, and my dad wasn't able to meet us that time so Becky went back with me to the exam room.

A different lady took Max's cast off that day.  It was the first time I had met her, but she was one of the two people I had been told to request, and she did a great job.  But when the casts came off, we saw this:

See that dark spot of skin right above his foot?

 I hadn't seen any sort of discoloration of his skin until this point.  I thought it looked odd, but didn't really know what to think.  After Max was born he had tons of dry skin that peeled off.  I remembered that when he had his first cast put on, I thought, "How is all of that dry skin going to peel off if its under a cast all of the time?"  On this day, I thought perhaps that's all it was- dry skin from after he was born that never had been able to come off.

Third cast off.  4 weeks old.

Once Max had the cast taken off, he was very unsettled.  He cried, a lot, for most of the time we waited.  That appointment was hard- we had a long wait for the doctor and it was cold in the room.  I should have wrapped Max up sooner than I did, or gotten him dressed, or something.  But I held him and walked with him.  I tried nursing him and burping him.  Nothing seemed to settle him down.  He seemed more upset when I touched his leg or his foot, so I tried not to touch it much, which wasn't easy.

Dr. Kayes and his PA came in and noticed the spot right away.  Immediately he said, "We can't cast over that.  We need to take a break."

Max was still crying.  Did I hear him correctly?  Wait, why is the PA putting all the casting supplies away?  What's going on?  Why is my baby still crying and I can't figure out why he isn't being casted?!?!

Sweet foot!

Dr. Kayes explained that we shouldn't cast over a spot like that.  To do so would cause further irritation, and if it became an open wound, we have a whole host of other problems to deal with since we definitely couldn't cast over an open wound that size.  Max also had a small blister at the top of his leg where the cast had rubbed.  I almost always kept a legwarmer over the cast and tucked it down around the edges, but it must not have protected it enough.

All I could think was, he can't be out of a cast.  He just can't.  What about all the progress we will lose?!  Dr. Kayes and his PA both assured me that we would pick up with casting and all would be okay.  Sometimes these things happen, and while it isn't common, occasionally it does occur.

We could barely talk over Max's crying, and Dr. Kayes seemed genuinely concerned that Max was so upset.   He said sometimes babies get so used to their casts that they don't like to be out of them.  I was told not to put any ointment or anything like that on the spot so that the skin could heal on its own.  It was a Monday, and he said it things looked a lot better in a couple of days we could come back on Friday.  Otherwise we would just pick up again the following Monday.  He told us some stretches to do and I felt comfortable with that because we had done so many stretches with Oliver's feet as a baby.

And just like that, the appointment was over.  I was taking my baby back home without a cast.  It was so strange.  I was somewhat dumbfounded by the whole experience.  I tried calming Max down, but he wasn't having it.  Finally, I just decided to get him dressed and we would leave.  I couldn't take being in the room anymore with him crying like that.  Thankfully, once I got him dressed, he settled down more.  I wonder if it was a combination of being out of the cast and being cold that made him so unhappy.  Then I felt terrible that it was something so simple as being cold that made him cry; I could have easily fixed that earlier had I realized.

Becky and I left, and I sent Jay a text.  I really didn't know what to say.  "Hey the appointment went well.  Actually, no it didn't.  He is coming home without a cast.  But the doctor says it'll be okay.  But I'm totally uneasy about the entire thing."

I should clarify.  I absolutely believe it was the best decision to leave Max out of a cast to let the spot heal.  Causing further damage to his leg by re-casting could have made things so much worse.  But when your baby has clubfoot, you get so used to having him or her in a cast.  Its just part of your everyday routine.  You can't wait for it to be over, and when that day comes I will be elated.  But to have a week of no cast in the middle of the process?  The whole thing felt so very, very strange.

Telling people that Max was taking a break from his casts felt very awkward.  Most everyone assumed it was a nice thing- gosh, isn't it nice having his legs free for a week?  You can enjoy his time without the cast, you can give him baths, etc etc etc.  And all of that was true.  It was wonderful to cuddle my little guy and give him real baths that he didn't cry through.  But it just felt wrong.  It felt like this long, drawn out pause on the whole procedure.  I felt like we were already living it week by week to see how much progress he was making, and now we were just pausing.  It was the week of Halloween and it lasted forever.

Some Halloween fun.
Its tiring being such a cute little pumpkin!

I was so ready to get him back in a cast.  Like I said, I really hate dealing with the casts, but when you know its what your baby needs, you just want it done.  It just felt so strange.  One thing about clubfoot is that you generally do not want them out of the casts for long.  That is why his cast gets cut off at the doctor's office and in less than an hour (usually less than 30 minutes) he is re-casted.  When Oliver was a baby I had to take his casts off the night before, and that is actually not advised because you don't want to risk losing progress.  So a whole week? I dreaded going back and seeing what progress we lost.

The first night home without his cast was rough.  He would cry and just kick and kick that leg.  He was very unsettled and you could tell he wasn't used to having the cast off.  Thankfully, he settled down as the week went on and his skin healed beautifully.

Just 24 hours out of his cast and the spot was drying up nicely.

 Although the spot looked healed by Thursday, I did not feel comfortable calling and making an appointment for the following day for another cast.  As badly as I wanted him to get back into the cast and be on our way again, I didn't want to risk putting him back in too soon.  I wanted to make sure he was fully healed.  When we did go back the next week, his foot looked great and we were ready for another cast.


Saturday, December 7, 2013

Max's Early Castings

The first three weeks that Max was in a cast went very well.  He did much better than I expected, and as I result, I did much better handling it all.  Sure, it was really hard having my baby in a cast.  But he didn't cry as much as Oliver did with the castings and overall just seemed to do better.

The first night he had his first cast on he was unsettled and emotionally it was very hard.  After that first night, though, he really seemed to settle in.  We began struggling with some breastfeeding supply issues- I actually had too much milk and the evenings were very hard for us.  He would gulp, gulp, gulp, choking on the milk as my letdown happened.  He would then scream, burp, and cry again because he was still hungry.  This cycle would repeat itself often.  It was very hard and very draining.  Just as the older two kids were getting into bed and settled down Max would start having a tough time.  There was definitely no "down time" for this new (again) mom and I was so very thankful to have Jay's help with the burping and calming Max down.

Max had his first cast change when he was 15 days old.  I was so very nervous about this appointment.  Jay couldn't go with me, and I was pretty upset about that.  Because Jay had worked second shift when Oliver was a baby, he had been able to go to every appointment.  Now Jay was on first shift (which overall works out much better for our family) and we weren't able to afford to have him take an entire day off of work each week.  I was especially nervous for this cast change because I knew he would be getting the cast cut off with a saw.  This was an unknown for me because Oliver's were not taken off this way.  I now know that it is recommended to do this (instead of soaking them off at home) but oh how I dreaded it.  The whole cast process was hard enough, but now I had to see them take a saw that close to my baby's legs?  My stomach was in knots all of Sunday.  I absolutely dreaded the appointment.

Despite Jay not being able to go, I did not have to go to the appointment by myself.  A dear friend from church offered to go with Max and me, and the second casting was the first time she got to go along.  Becky has truly been an angel to us, blessing us with her time and support.  She drove down for us so that I could be available to help Max if needed.  Thankfully, Max has done so well on the drives down. (After having Lucy absolutely hate car rides, I was very nervous about how Max would do.)  It has been so wonderful having someone to go to appointments with me.

Ready to have his first cast taken off.  No worries from this little guy!

The first time Max got his cast taken off did not go well.  The good news was that Max had gained weight again and was well above 9 1/2 lbs.  The bad news was that the cast tech knicked his ankle when cutting the cast off.  There was a definite "personality clash" so to speak.  He tried making jokes with me and I just was not in the mood.  He then told me that seeing me nervous about Max having the cast taken off was making HIM nervous and that he was not going to hurt my baby.  So when he got the cast off and said that he had, in fact, knicked him...I was not happy, to say the least.  Thankfully, it was more of a scratch than a cut but still.  Mama was very unhappy to know that anything like that had happened to her baby.

Enjoying some sweet, cast free baby snuggles!

Not easy to see, but just above his ankle is a red mark.  That's where the cast tech "knicked" him.

It was so wonderful to see Max's foot.  He didn't like me touching his leg or his foot, which is normal.  But still, oh how I wanted to just rub and touch it.  I couldn't believe that I was able to see and feel it again.  There wasn't a dramatic difference after that first time, really, since they hadn't done a dramatic turn.  I was somewhat disappointed in that, even though I knew they had achieved the progress they were hoping to.  I was just so ready to get things moving and be making some really visible progress.

I held Max as long as I could, and then they came in to put the new cast on.  It was hard to put him back down and go through another casting.  The doctor was pleased with the creases looking better and his toes being in line.  I asked the doctor about atypical feet, and he said Max did not have one.  I was thankful to hear that as I knew that atypical/complex clubfoot has more challenges in correcting them than a typical clubfoot.  It seemed as though just as soon as I was enjoying his free time, it was time to get the cast back on.  They quickly began to wrap his foot again and in my mind I couldn't help but think, "No! Wait! Not so fast...I'm not ready yet!! Give me another minute with him. Just a little longer.  I'm just not ready."  I don't think I would have ever been ready.  But each time Max got a new cast, I would continue to feel this way. I was just never ready for them to put a new cast on.

Sweet baby boy. Second cast on.

Max cried more during the second and third castings, but still not too much, really.  We could tell he was uncomfortable but it wasn't an uncontrollable crying like I had expected.  I really felt so very blessed by how well things were going.  I absolutely dreaded the appointments, though, and Sundays became very difficult.  When Max was three weeks old and the day before his third cast, Jay got the chance to go to Colts football game.  I was thrilled for him that he got to go to the best game he could have seen (a Colts/Broncos game) and he got to spend the day in Indianapolis with his dad, brother, and friend.  But that day was probably the hardest day for me.  Sundays were hard anyway, but not having Jay home to talk to and lean on was heartbreaking.  Taking care of the three little ones by myself was exhausting.  My mother-in-law came to help during bedtime because Max was still having tough nights and I just didn't know how I was going to do it by myself.  I spent a lot of time in tears that day, and more than once the big kids noticed me crying.  I missed Jay, I was envious that he could spend an entire day doing whatever he wanted to do without little ones demanding all of his attention, and I absolutely did not want to face another cast change the next day.  It was just very, very hard.

The next day when Max had his third cast put on, I requested a different cast tech.  I have been blessed to "meet" (I say that in quotes because we have not officially met in person-yet!- but have talked frequently online and on the phone as well) another clubfoot mama who takes her boys to Dr. Kayes.  She told me the names of two other ladies to ask for to remove the casts.  I am so thankful that I did.  We had an extremely sweet lady take Max's cast off that day.  She was so gentle and so kind.  I was able to breathe a huge sigh of relief knowing that I didn't have to dread the cast removal each time.  She did a great job with Max.
Max did so well with this sweet nurse taking his cast off.  She was amazing! We found out at this appointment that at 3 weeks old Max weighed over 10 1/2 lbs...he had gained more than 2 lbs above his birth weight already!

Max's third appointment I went to by myself, and it was the first time that I had to stop on the way home with him to feed him and settle him down.  When I got him out of his carseat I noticed what seemed to be a crack on the back of his cast, right behind his knee.  I attempted to move his leg around and the crack was not deep, at all, and his leg was not moving a bit.  I was still worried that something might be wrong and called his doctor.  Of course I had to leave a message and I was just thinking, "Oh please, don't make us come back down. This is such a long drive!"  They called me back once I made it home, and asked some questions.  Since the crack was very shallow and not at all deep, and his leg was still immobilized, they said it would be fine.  Thank goodness.

Max's foot after two weeks of casting.

Max did well with that cast also.  He was somewhat unsettled that night but by the next day was fine.  I began to feel a real peace about things.  God was so, so good to us. I truly felt so many prayers being answered in seeing Max respond so well to the treatment.  I would hear songs on the radio that, when I heard them during my pregnancy, made me cry because of how hard things seemed.  Now, I could hear those same worship songs and my heart felt such joy.  The tears I was shedding now were tears of thanksgiving that God was so faithful to us.  I felt He had brought me so far.  Max was doing so well, and so was I.

Three weeks old and third cast is on.

Unfortunately, we didn't stay in that place for long.  Max's fourth cast change came, and brought some unexpected news.  Stay tuned. :-)