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!

 

Surgery Day

~Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. ~

Wednesday was Sydney's surgery.  It was a long and stressful day, but Sydney came through it amazingly well.  I started this blog knowing we would have a difficult journey ahead, but I want Sydney to one day read about what she went through.  Part of the beauty of the surgery being now is she will have no memory of the pain, the casts, or my craziness leading up to the procedure :) 

We began our day early, waking Sydney up at 6:30.  We had so many blessings throughout the day and we started with one right from the beginning: Sydney woke up as happy as could be.  She wasn't bothered by the fact that we had woken her in the middle of the night to eat, that we were waking her much earlier than normal, or that she couldn't eat.  It made the morning much easier for us that she was so content.

Happy baby in her crib!

Arriving at the hospital

When we arrived at UNC things were busy from the get go, but time seemed to go by incredibly slow.  We checked Sydney in, signed some papers, and had a few minutes to visit with friends Dianne and Pete (who were so incredibly kind to stop by) before we were called back to the pre-op area. 

ACC Building at UNC-Chapel Hill

In my hospital gown

In Sydney's pre-op room

Left hand marked and ready

Right hand marked and ready

For me, once we were brought back to the prep area things became real and difficult.  The nurses and doctors were wonderful and understanding, each one kind about the tears they saw running down my face.  We met with several nurses, the anesthesiologist, and the surgeon.  The surgeon went over what she was hoping to accomplish and let us know that she was expecting the surgery to last between 4 and 6 hours.  Then, pretty much exactly at the scheduled surgery time of 8:45, the anesthesiologist had us give last minute hugs and kisses and took Sydney off for surgery.  I cannot begin to describe the feelings inside watching her being carried away.  It was a moment I knew was coming and one that had been built up in my mind for a year.  I don't know if the fact that I had a long time to think about having to one day hand her over made it harder or not.  The one thing I know for sure is that handing her over and watching her being carried away from us is the hardest thing I have ever done. 

Once she was brought back to the operating room (and I was able to collect myself), the waiting game began.  Blake and I tried to stay busy to pass the time, and we tried unsuccessfully not to watch the minutes ticking by.  We were lucky to have both of our parents keep up company as well as my brother (another hidden blessing in the day).  We also had several visitors including Andrew, Dianne and Pete again, as well as Blake's parents' pastor who lead us in  prayer (another blessing).  During this time, we had moments of peace and moments of worry.  It was definitely an emotional rollercoaster.

Finally, pretty much right at 2:00, Sydney's surgeon came out to tell us about that she was finished.  She let us know that Sydney came through the surgery fine.  She also gave us details about the surgery itself.  I would love to write lots of details at this point about exactly what she accomplished, but once I heard that Sydney was ok, I had trouble focusing on the details of what she said.  I am sure she will tell us again when she takes the bandages off in four weeks.  At this point, I can tell you the following highlights (all blessings):

• Sydney has 10 fingers!  Each finger has it's own fingernail!
• The surgeon did not have to use skin grafts. (AMAZING!)  She feels that her left hand will look pretty much like a 'normal' hand.
• Sydney has a pin in each of her ring fingers to hopefully aid in straightening them and discourage them from turning inward.  They will be removed when the bandages come off.
• It took the surgeon 3 1/2 hours on her right hand and about 1 1/2 hours on her left hand.
• Sydney has a plaster cast on each arm up to about her elbow and her arms are completely wrapped in what something that looks similar to an Ace bandage all the way to her shoulders.

We thought we would have to wait for awhile before we would be able to see her, but we were brought back to recovery pretty much immediately.  I had prepared myself that it would be difficult to see her in recovery.  I was expecting her to be pale, crying, and agitated.  Instead, I found her comfortably rocking in her recovery nurse's arms.  She looked a bit pale, but just like my baby!  I cannot begin to describe the feeling of relief I had getting to see her.  Another big blessing of the day: Sydney's recovery nurse was an angel.  She was so kind, attentive, encouraging, and patient with our questions.  I have no idea how long we were in the recovery room with Sydney, but I honestly couldn't have cared less because she was in my arms.  Soon enough though, the nurse discharged Sydney after giving us lots of instructions.  Needless to say, we packed Sydney up and brought her home where she belongs!

In recovery with Sydney's WONDERFUL nurse

Everyone happy to see Sydney!

One view of her arms

Sleepy

Once home, Sydney slept through the evening but did take some time to eat.  We laid her in her crib, but she really wasn't having any of it.  Blake and I ultimately took turns holding her in our recliner on our chests while she slept.  It was really the only way she seemed to be comfortable and we were fine with that.  While we didn't get much sleep, she did and that's all that mattered.  She seemed to have some waves of pain but nothing uncontrolable.

Asleep for the car ride home

Another cast view

In reflecting on the day, I am amazed at how well things went.  I must list out some of the things that stood out to me throughout the day:

• Blake is a rock.  I know inside he was having as hard a time with everything as I was, but he was able to show amazing strength.  While I was breaking down, he was comforting me.  I cannot describe how much I love him: he is an incredible father and I am truly blessed to have him as my husband.
• We have an incredible support system.  I know Sydney had so many people praying for her, and we felt them all.  I cannot put into words how appreciative I am for every prayer, encouraging word, text, message, and phone call we received.  Sydney had people praying for her from Simi Valley, Califonia to Charleston, South Carolina; from Norman, Oklahoma to Miami, Florida; from Victoria, Texas to Oxford, Mississipi; from New Orleans, Louisianna to Charlotte, North Carolina...and so many points in between! 
• We made the right decision choosing UNC (and most of you know how difficult it is for me as a State fan to admit that).  From the moment we stepped into the surgical center until that moment we left, Sydney was treated with the best possible care.  Thank God for that!

I know we have a difficult road ahead as her recovery begins.  I cannot begin to understand what Sydney must be thinking with two huge casts on her hands.  She had been using her hands so much lately and now they are both rendered useless for a month.  I know she will become resourceful in how to use them, but it tears me up that she doesn't understand what is happening.  I pray this month will go quickly for her so she can get back to her normal life.

I will continue to update how her recovery is going as much as possible!
Philippians 4:6

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! :)

Syndactyly: Sydney's unique hands

~For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. ~ Psalm 139:13-16

And now we embark on our next journey with Sydney...her hands.  When Blake and I decided to start a family, we knew there was a risk for our child to have syndactyly since Blake was born with the same condition.  Syndactyly is a condition where two or more fingers or toes are joined and occurs only 1 in 2,000.  Blake was born with syndactyly on both hands.  He had surgeries to separate the fingers as a baby and now has 5 working fingers on both hands.  When we first found out we were going to have a baby, we discussed the possibility of this condition being passed on with our OB.  We opted to have a Level II ultrasound early on in the pregnancy to attempt to see.  The ultrasound technician worked hard and was able to get some pretty good shots of the hands...which showed syndactyly on both.  From what the ultrasound showed, it looked as though her middle and ring fingers were fused on both hands.  I remember the tech saying, "I have never wanted a baby to flip me the bird as bad as this one".  During this ultrasound, we were also able to find out that our baby-to-be was a girl! :)

Once the ultrasound showed the probability that Sydney had syndactyly (the doctors would not guarantee 100% that she did), so began a range of emotions and appointments.  We immediately met with a genetic counselor who drew out our family histories.  The very interesting thing (and bear with me on the logistics of this one) is that both Blake's paternal grandparents' bloodlines carry syndactyly.  How's that for genetic make-up and luck?  The genetic counselor told us that there are some rare syndromes that can be associated with syndactyly, but that since Blake was born with syndactyly and no associated conditions, the probability was low. 

The counselor set up an appointment with an orthopedic surgeon at UNC for us to meet with as a prenatal consultation.  We met with the surgeon when I was about six months pregnant.  She gave us a rundown of how she would go about the surgery.  I felt at ease with her when she said "I love working with babies".  She asked us to bring Sydney in when she turned about two months of age.  She also recommended having a late term ultrasound to check kidney and heart function as syndactyly can be associated with some abnormalities with it.  (The late term ultrasound came back fine!)

Well, now that Sydney is here, the doctor's visits can begin!  She does have exactly what we thought.  Middle and ring fingers are fused on both hands.  Her left hand does not appear to be as severe as the right.  In fact, when she holds her left hand certain ways, you can barely even tell.  By the way, her hands look almost identical to the way Blake's looked. 

Sydney's left hand

Sydney's right hand

We met with the UNC doctor recently and have a consultation set with a doctor at Duke before we decide our plan of action.  The meeting with the doctor at UNC was rather informative.  As we were huddled in the small exam room, along with two medical students, the doctor felt Sydney's fingers.  Then she said something we weren't expecting/prepared for.  A little background information first: each finger is made of three bones.  She said on the right hand she could feel all the bones for the middle finger but wasn't convinced she could feel the third bone for the ring finger (picture where your fingernail is).  We opted to have an X-ray done to try and see what bones are there. 

The X-ray technician came to take us for the X-rays and showed us his hands...he was born with syndactyly as well!  What a small world!  I have to say, for whatever reason, this helped me relax some.  The tech could not have been a nicer guy and was so patient with Sydney, but it was still really hard seeing my tiny baby laying on the X-ray table.

The orthopedic surgeon had us take a look at the X-rays.  Thank God, the X-ray showed that Sydney has all bones necessary to make two fingers on that right hand!  However, the doctor has decided that she would start with the left hand for the first surgery.  The reason for this is that the X-ray shows Sydney has an extra bone growing in between basically where your fingernails are on the left hand.  This could cause bowing of her fingers that we want to avoid. 

At this point, we are in a holding pattern.  If we decide to go with the doctor at UNC, we are looking at surgery around June.  We have another appointment set with the same surgeon in January where more X-rays will be done to see how her fingers are growing.  We are meeting with the doctor at Duke in December and are interested to hear what his plan of attack would be.  Ultimately, we want to make the best possible choice for Sydney.

Sometimes it is hard to look at her hands and think of what lies ahead.  I hate to think about Sydney being brought back to the operating room.  I hate to think about Blake and me waiting to hear the outcome.  I hate to think about the recovery following the surgeries.  However, I try to remember that we are so blessed.  Sydney is happy and healthy.  In the grand scheme of things, it could be way worse.  Ultimately, I want to document our journey for Sydney since she won't remember what her hands looked like in the beginning or what it was like to have the fingers separated. 

Here is a link to learn more about syndactyly if you're interested.

Sydney and Mom getting ready to go to UNC

Sydney and Mom in the exam room waiting for the doctor

Sydney and Dad after the X-ray- see her sticker for being a good patient? :)