The Difference a Year Can Make

It's been a while since I have written about Sydney's hands.  In fact, we went to see Sydney's hand surgeon in May and it was hard to believe it was the one year post-op visit.  Amazingly, I have already forgotten what it was like for her to have both hands completely out of commission for a month.  Most days I don't even think about the fact that she had surgery or that her hands are "different".  So far she has no problems utilizing her fingers like any other almost two year old.  Her surgeon continues to say that her left hand is perfect, no more surgery for that hand!  The right hand is a different story.  While it currently does not hinder her in anyway, it's hard to tell if that will be the case in the future.  Her ring finger is very stiff and does not bend much.  We don't know if that will be a problem as she begins to draw/write, cut, and other fine motor skills develop.  She still has not defined a dominant hand; just when I think she is left-handed, she will switch more to using her right.

So, what does this mean for possible future surgery(s)?  Right now we are in a holding pattern.  Dr. Patterson says we will talk about surgery when she is about 4.  That surgery would be to straighten the ring finger as much as possible.  Right now it curves toward her middle finger.  She is unsure of how much flexibility in the finger it will give her.  Overall, Sydney is flourishing so we couldn't ask for much more.  We'll cross the further surgery bridge when we get to it.

Easter with casts on

Waiting for Dr. Patterson...one year later

Reading books with Daddy in the waiting room

Mystery Illness

Over Christmas, Sydney was out of sorts.  She ran a low grade fever and woke up in the middle of the night clearly not feeling well.  Of course, this started when the doctor's office was closed for the holiday.  So on Christmas Day we took her to Urgent Care, where the doctor diagnosed her with her first ear infection.  Sydney finally slept well Christmas night, but that was mainly due to the Zyrtec the doctor had us give her because her throat looked red.

When Sydney's pediatrician reopened after Christmas, we brought her in as a follow up.  We also wanted the doctor to take a look at one of Sydney's fingers.  A few weeks before Christmas, Blake and I noticed a small knot on her middle finger on her right hand, on the surgical site.  We thought it was possibly a callus from where her fingers are curved in and tend to rub together.  It also reminded me of what a cyst looks like.  I had called the pediatrician and spoken with two different nurses to get their opinion.  We really wanted to avoid bringing her to UNC if it wasn't necessary.  Both nurses asked about the bump itself: was it hard or soft to touch? Was it hot? How big was it? Did it seem to bother Sydney? Had we noticed it grow? The second nurse suggested we call UNC to see what their thoughts were.  The nurse Blake spoke with had us make an appointment but said it wasn't an emergency, so the appointment was set for a couple weeks out.

Well, by the time we followed up with the pediatrician about the ear infection, the bump had become larger and red.  So, after the doctor checked her ears (and said she did NOT have an infection) we focused on her finger.  Now let me say that Sydney is a good patient for a 16 month old, but when someone starts messing with her hands she gets a little testy- not that anyone can even begin to blame her.  The pediatrician said she wasn't sure what the bump was, but that she wanted us to follow up again with Sydney's surgeon.  She felt that it was infected and didn't want to wait too long before she was seen.  She said she wasn't comfortable lancing (OUCH) it because it was directly on the surgical site. 

UNC put Sydney on an antibiotic (via the pediatrician) and said it was ok to wait until our appointment date, that we didn't need to move it up.  In the meantime, the bump definitely seemed to drain, although we never saw it happen.  When we finally made it in to see Sydney's surgeon, I was surprised at what she thinks it is.  She feels as though it is a stitch that Sydney's body has not absorbed.  The only way she can know for 100% is to open it up and look.  Well, that requires a trip to the OR.  At this point, she is having us wait it out.  We will go back in four months if things stay status quo.  However, if it becomes infected again, gets larger, or seems to bother Sydney it sounds like we are going to have to make an earlier trip to the OR than we hoped. 

Now, that last part about if it bothers Sydney is the hard part.  I told the doctor that I think it does somewhat bother Sydney.  It certainly does not hold her back in anyway- she uses the hand as she always has.  But there are moments when I wonder if it does in fact hurt her.  The part that worries me the most is that Sydney has a high pain tolerance: she cut two molars and we really didn't know until the pediatrician felt them during a well check.  I think that pain doesn't compare to what she felt following surgery (these are all my assumptions).

So it's a holding pattern for now....we like the pattern we are in, so we are hopeful to remain in it, or move into a pattern where the bump is gone!

Not at the doctor's office, but still cute as can be!

Hand Update- 7 months post surgery

A while back we met with Sydney's hand surgeon.  It is so hard to believe that seven months have passed since her surgery.  I can still easily bring back memories of anticipating and worry about her having the surgery, yet it seems like her hands have always been the way they are now. 

Our appointment with the surgeon was actually a quick one.  After x-rays, (which get harder every time she has them done) we talked with the doctor about Sydney's future possibility of more surgery.  At this point, we're basically in the same place we were last time.  She will most likely want to operate again on Sydney's right hand when she is about three.  This will be to hopefully straighten her ring finger out a bit.  We are unsure of how much more flexibility she will gain with further surgery which is our main concern with that hand.  Otherwise, she wants to see Sydney again in a six months just to check in again.

No big news, but no bad news either!  We'll take it!

Waiting with Daddy

Waiting on x-rays

Taking an important call

Physical Therapy Visit

We recently had to make a trip to UNC to visit with Sydney's physical therapist.  Sydney very quickly figured out how to remove her hand splint that the PT made for her during our last visit not long before.  The goal is for Sydney to only wear the splint during sleep time, thus allowing her to use her hand freely while awake.  But what else does she have to do in the crib than to rip the splint off?  The PT even gave us an Ace bandage to wrap around her hand and arm, which was equally as easy for her to get off. 

During the last visit, the PT created a contraption that should be Sydney-proof.  It involves another splint that goes on top of her hand, with her original splint attached to a bottom splint as well.  We're talking three splints now.  Along with the splints, there is also an exorbitant amount of Velcro and elastic wrap to secure it to her arm and hand. 

If she figures out how to remove this contraption, I think an apt nickname will be Houdini!

New LARGE finger splint

Silly girl!

Hand Update- 3 1/2 Months Post Surgery

Last Friday we headed to UNC for another followup visit with Sydney's surgeon, as well as an appointment with her physical therapist.  Her surgeon, Dr. Patterson, went on maternity leave a month or so following her surgery and wanted to see us upon her return. 

Before seeing Dr. Patterson, Sydney had X-rays taken of her hands.  LOTS of fun with an 11 month old, although the lady who took the X-rays was super fast- much better than the techs we have had in the past that want to be super gentle but end up taking WAY too long. 

After X-rays, we waited in the exam room until a resident came to speak with us.  We typically talk to a resident before seeing Dr. Patterson, so we are used to it.  I must digress and tell a few funny experiences we have had with residents.  The first one we met with looked like she was about 19 (made me feel old) and pretty much the only thing she said to us was how "cute" Sydney was...over and over.  Then during our trip to the ER following her surgery, there was the one who did an exam on Sydney prior to her being released.  I guess it's protocol to check ears, throat, etc.  Well, when it was time to check inside Sydney's mouth, she told her to "open your mouth" and proceeded to wait as if she would accommodate her.  And the resident we just met with last week had his white coat buttoned completely wrong.  Now, I know each of these people are way smarter than I could ever hope to be, but it is nice to have something to laugh about and ease some of the stress during these doctor visits.

Dr. Patterson took a look at both of her hands, and started out with some wonderful words.  I wish I could remember her exact wording, but it went something like, "I'm done with her left hand.  It is a non-issue at this point in my opinion".  Music to my ears!  Her left hand does look amazing, to me.  Her fingers are so straight, the nails look pretty good, I really couldn't ask for them to look any better. 

Now her right hand isn't quite as lucky.  Both fingers are curving inward (towards each other) rather severely.  At this point, Dr. Patterson wants to leave them alone.  We will continue using the brace for the time being.  In the future we will discuss the possibility of more surgery on that hand.  She says she can most definitely straighten them out, but she is unsure of how much flexibility she will have in the fingers.  If surgery becomes a reality it won't happen until Sydney is at least 3 years old.  In my mind, Sydney will do a lot of developing over the next few years.  She will establish a dominant hand, begin drawing and 'writing', and will develop many more fine motor skills.  All of these things will either prove her fingers are a hindrance in her life or a moot point.  I'm praying for the latter.  If they don't seem to have an impact on her daily life, we may decide to put surgery off longer.  Dr. Patterson assured us it won't matter when surgery is done; time will not affect the outcome.  So for now I won't even worry myself thinking about surgery.

After meeting with Dr. Patterson, we headed over to the Women and Children's Hospital to meet with Sydney's physical therapist, Emily.  We explained issues we had with Sydney's brace, and she made a new contraption that should make it easier for us to put on and harder for Sydney to pull off.  I'm hoping that she is able to build tolerance up so she is able to wear it while sleeping.  If she only wears it during waking hours, she won't really be using the fingers which somewhat defeats the purpose.  Her PT was very helpful in designing something that would work for us.  We are sad to hear she will not be returning to work following having a baby (due September 16, Sydney's due date!). 

Overall, I am so pleased with how Sydney has done post surgery.  She uses both hands interchangeably and does not seem to have seem to have any issues with either one.  I am humbled over and over by how blessed we are!

A little light reading waiting for X-rays

Waiting for Dr. Patterson

2 Week Post-Cast Follow-up

On Friday we took Sydney to UNC for a followup with her hand surgeon.  Her doctor is, most importantly, pleased with the way her hands are healing.  I think her words to describe her left hand were "like a dream".  Her right hand, however, still has a little work to go.  We have noticed pretty much since her casts came off that her right ring finger and middle finger were not bending when she grasped things, especially the ring finger.  In addition, they are both curving inward, trying to go back to the way they were formed.  The doctor basically told us that it is what it is to a certain extent.  She said we can most likely have more surgery done as she grows, but I'm hoping it is maybe something that Sydney can decide if she wants done or not. 

In the meantime, the doctor sent us to a physical therapist who specializes in working with children.  Once we finally found where in the world we were supposed to go (in the main UNC Hospital), we met with a great PT.  She made a splint for Sydney to wear while sleeping.  It is something she is going to have to start out in small increments of time (about 15 minutes to start with) and we will gradually increase the time until she wears it at all times while sleeping.  We are not sure if the splint will help or not, but we are willing to give it a try for sure.

We go back to see Sydney's surgeon in August, after she returns from maternity leave!

Happy baby in the waiting room

Splint taped on her hand

All done and ready to head to the BEACH!

 

Hand Doctor Visit: Part II

Trust in the lord with all your heart; Lean not on your own understanding; Acknowledge him in all your ways and he shall direct your paths~Proverbs 3: 5-6

Round Two begins.  The other day we took Sydney to meet with a hand surgeon at Duke.  Prior to the appointment, I tried to prepare myself for a no-nonsense doctor, one that would not candy coat anything.  I did not prepare myself enough.  I would love to be able to say that meeting with this doctor made our decision clear, but I now feel more conflicted than before.  I was hoping that both doctors would have similar philosophies, but they didn't. 

We had a rather long wait in a fairly crowded waiting room.  As I watched the other families bring their children in, I felt humbled and was slapped in the face again by how lucky we truly are.  There are so many other people that have much tougher circumstances to deal with than us.

Before the doctor came in, we were visited by a resident, which was not unexpected as the same thing happened at UNC.  The random part was that the resident was a guy that I went to school with; he was even in my 5th grade class.  What a small world.  Although I hadn't seen him since high school graduation, it did help to relax me a bit even though we were mainly only acquaintances.

The doctor at Duke came in the exam room, felt Sydney's fingers and basically said "Yup, I can separate them."  No details, no explanation, no comforting words.  Try as I might to keep in mind that things could be so incredibly much more serious, I can't seem to do it and this surely didn't help.  The doctor's communication approach were difficult for me to stomach.  I'm glad we had questions prepared as we had to ask them to get any information out of the doctor.  Blake did a great job prodding the doctor to give us specifics about the surgery.  To add to my frustration, X-rays were supposedly received by Duke from UNC but when we got there, no one could find them (of course!).  So while the doctor was able to say he could separate her fingers, he was going on feeling alone. 

While the doctor at UNC said she would do two separate surgeries, the Duke doctor said he would do both at the same time.  The doctor at UNC wants to start the surgeries at nine months, Duke at six months.  The UNC doctor would take skin grafts from the side of Sydney's hand, Duke from the groin area.  How are we supposed to choose?  How do we know who is right?  Answers I know we will never receive. 

During what was a frustrating appointment due to a long wait only to have a short chat with a doctor that left something to desire in the personality department, we were able to find joy in the day.  Sydney gave us two HUGE laughs while waiting in the exam room.  While we feel like she has giggled already, these were unmistakable laughs.  It was the sweetest sound and helped us (especially me) relax.  It was just what the doctor ordered!

Next stop on our journey: another appointment with the UNC surgeon, Sydney's four month appointment with her pediatrician (where hopefully we will get some guidance), and then decision time.  We have a tentative date scheduled for surgery should we choose Duke: March 16.  Boy does that sound close!

I continue to pray for wisdom, strength, and guidance.  And I continue to thank God for the sweet, healthy, happy bouncing baby girl that continues to amaze me and that I fall in love with more every day.

Blake with Sydney outside Lenox Baker Hospital

Sydney and me in the waiting room...look at her cute outfit! :)

Pediatrician Visits

We are so glad to have Sydney home with us where she belongs!  One thing I did not mention in Sydney's birth story is how wonderful our pediatrician, Dr. Murnane is.  Another blessing to add to our list!  She came to the hospital to check on Sydney everyday we were there, except Sunday.  Many of the nurses told us that is not typical for a pediatrician since she was technically under the care of the neonatologist in Special Care.  While she did not come to see us in the hospital on Sunday, she did call us at home to check to see how we were doing, and to let us know she already had our first appointment setup for the next day!  Since our first visit that Monday, we have been back two more times to check her weight.  As of yesterday, Sydney is back to her birth weight of 5 pounds 9 ounces!  She gained 2.3 ounces in two days- the nurse said she likes to see 0.5- 1.0 ounces gained per day, so she is already a little overachiever. :)  We go back two times next week and then look forward to stretching the visits out a bit hopefully.

Like my MC Hammer Pants?

Me with Dr. Murnane.  She's the best and makes me feel better!