Day Before the Surgery

Tuesday October 16, 2012

I was filled with peace during the morning. I knew many many people where praying for us. I also knew God's promise to never leave me or forsake me. Anderson was very sweet and obeying way more then normal. It was a beautiful day outside. One of the first days over 65 degrees in a long time, and sunny too. Anderson and I went to eat lunch with Andy at a park by his work. It was bitter sweet to see Anderson playing on all of the playground equipment in a way he would not be able to do for a long time. All in all it was wonderful to sit in the sunshine and spend time with my guys.

last time (for a while) swinging with no cast! 

Then we went home and took a nap. (Yay!)
Our friend Heather called us up and asked us if we wanted to go to supper and let the kids play at a park or something. Thankful for friends who care about our lives.
We met at the mall and ate at Macoroni grill. It was delicious! Then we walked around the mall and let the kids play.

Anderson and his friend Evy playing at the mall.

The mall has a little train that is for kids that chugs around the hallways of the mall, so the dads took the kids on a ride for fun. Anderson loves trains. His little face was shining with delight. It was definitely nice to get out and take our minds off of the next day.
When we got home I was packing and thought we should read over the check list from the hospital again to make sure that we did not forget anything.  Andy read it and saw something that made us nervous. We saw that we might need to have pre approval from our insurance. While we had checked to see if our insurance would cover Anderson's surgery, we had not filled out or sent in any forms. We had no idea that we might have to. Unfortunately we saw this at close to 10:00 p.m. so we tried to call every number that we could find but no one was available to talk to because it was after hours. We looked on the web site to see if we could find out anything but we could not. I was so worried that they would not cover the surgery. I thought we might have to cancel the surgery until we figured it out.  I did not want to go through this whole week of anticipation for no reason. Andy thought we should just go to bed and he would call them when they opened in the morning. That still worried me because we were supposed to be at the hospital at 6:15 and his surgery started at 8. The insurance company would not be opened until a half hour before the surgery started.
At least this all kept my mind off of Anderson's surgery. :)
 I slept a very short very restless sleep, waking every hour or so and feeling wide awake with nervous anticipation of the next day.

A little about Anderson's syndactyly

photo from march 2011

Anderson has syndactyly on his left hand. All of his fingers except his thumb are impacted. The pointer and middle are complete simple, between his middle finger and ring finger is incomplete simple,  and his ring and pinky are also incomplete simple.

Follow this link to see great pictures and a easy to understand definition of different types of syndactyly

http://www.eatonhand.com/hw/hw019.htm

The surgery that is scheduled for October 17, is going to focus on pointer and middle and ring and pinky. This means that He will probably have to have another surgery down the road to separate  between his middle and ring finger. This makes me sad! I really don't want Anderson to have to go through the surgery twice!

Anderson also has Brachydactyly. Basically when your fingers do not finish growing. His four fingers are all shorter on his left hand then on his right hand. His thumb is not affected. His fingers will always be shorter than the other hand. There is no good fix for this.  Doing anything to lengthen the fingers would most likely limit mobility and dexterity.
Fortunately the size difference is not that obvious. It does not stop him from doing things. He can still grip and carry things just as well as he can with his other hand.
I am hoping that once he gets his surgery none of his finger's strength will be diminished and he is able to use his hand the same if not better than he does now.

surgery scheduled!

We have scheduled Anderson's surgery for October 17, 2012.
I am not sure how i feel about this.
The surgery will be a long one.  (4 or 5 hours?) It will require Anderson to be under anesthesia. It will also involve skin graphs that will be taken from near his groin area.
He will have to be in a cast up to his shouder for at least 3 weeks. Then they take the cast off and check the healing process and will recast if it is not healed enough for up too 3 more weeks.

I know he will be in pain after, and i think the cast will frustrate him for a while. I know he can adapt fast but I hate to see his little energetic self hindered by anything.
I can barley allow myself to think about it or I become upset. I do not want to see my little guy be in pain! I wish with all my heart that I could take his place. I wish that I could just shield him from all the things he has to face. He is so young and innocent. How is he going to handle this?
My heart just breaks when I think of all he will have to go through!
I try to pray when I get upset and it does help. I know that God is with us. I am trusting in him. I am not afraid per say i just do not want to see my baby hurt.

Last night Anderson woke up in the middle of the night and I went in to comfort him. I held him in the chair and sang him songs like I always do, but I sang him a few songs I never sang him before.

I cast all my care upon you

             and

God will take care of you

He actually fell back to sleep right after I started rocking him but I held him close much longer. Tears were steaming down my face as I kissed his peaceful little forehead. I clung to him and kept singing but the song was for me.

I cast all my cares upon you
I lay all of my burdens down at your feet
and anytime I don't know what to do
I will cast all my cares upon you.

The next song i sang My mom used to sing to me when I was a little girl. Her dad used to sing it to her I think...
I could not remember all of the words while I was singing so I just sang the refrain a few times.
I looked up the lyrics just now and although its an old hymn it sure is still good!

God will take care of you.

Text: Civilla D. Martin Music: W. Stillman Martin

1.  Be not dismayed whate'er betide,

 God will take care of you; 
 beneath his wings of love abide, 
 God will take care of you.

Refrain:
 God will take care of you, 
 through every day, o'er all the way; 
 he will take care of you, 
 God will take care of you.

2. Through days of toil when heart doth fail, 
 God will take care of you; 
 when dangers fierce your path assail, 
 God will take care of you.
 (Refrain)

3. All you may need he will provide, 
 God will take care of you; 
 nothing you ask will be denied, 
 God will take care of you.
 (Refrain)

4. No matter what may be the test, 
 God will take care of you;
 lean, weary one, upon his breast, 
 God will take care of you.
 (Refrain)

The surgery will be two weeks from today. I will need prayer as the date gets closer to stay 

calm and be able to handle my emotions. I am a very empathetic person. I cry when i see 

people hurting, and this will be extra hard considering its my baby boy. 

having fun together

love!

geneticist appointment

After we had Anderson, I wondered if we would have more children with syndactyly. I was wondering if it was a random thing or if it was hereditary. So when we met with Dr. Lim, I asked him about it and he told us to set up an appointment with the geneticist.
The appointment was at gillettes childrens. When we got there we had to get andersons height and weight like before every appointment and then we were waiting in the waiting room for a while. Then right before our appointment was supposed to start we were moved to our room. We waited and waited. Anderson played around the room. I feed him baby food, we read books and still we waited. A nurse came in to check on us and apologised for the wait. She gave us coupons for a free drink at the coffee shop in the hospital. We went down and got some coffee and then came back and still we waited. Finally our Dr. came in. I cannot remember her name but I guess she had been a Dr. for a very long time. I think she had forgotten that we had an appointment and did not come in for the morning.
Not the greatest way to start out the appointment.
She asked us tons of family history health questions and looked at anderson. She made a determination that she thought it was not herreditory.
I feel like i could still have another child with syndactyly, but i don't think it would be as high of a chance as if it was hereditory.

enjoying a swing

one of his favorite things to do, read!

Also the more we think about it and talk about it i don't think that it would stop us for having another child. We love Anderson so much and i think he has a great life ahead of him. Even though syndactyly will affect him in many ways I hope that some of the ways will be good as well as the bad that will come. I hope that it makes him a stronger, kinder, braver person who is able to press on through a life that is full of trials for everyone.
Although we as parents want to protet our children from all things bad that happen, the truth is bad things do happen. When they do you want your child to be able to react to them in a good way.

I did not take any pictures this trip so i added a few of our little boy to spice up this post.

I love adventure! 

Isn't his smile just the greatest?

Follow up (second) hand appointment with Dr. Lim

Our second appointment was Thursday march 15, 2012 at gilletts children’s hospital. Anderson was 17 and ½ months and we were going to schedule his surgery at 18ish months. This was basically the appointment to make sure everything was going well and to schedule his surgery. (although i am posting this now i wrote it when we came home that night so that i would remember everything.) 

     We got to the hospital a little early and after we got Andersons height and weight checked we were able to spend some time in the waiting room. Anderson just loves all of the toys and bright colors. He ran around quite happily until it was time for us to go to our room. This time there was a little toy car that kids can ride in. He loved it!  He sat in it a long time, and he squealed with delight when his daddy pushed him in it. Although he had to push him backwards so his feet would not get run over because Anderson did not understand  how to move his feet in it yet.

     After about a half an hour we were able to move to our room.

     On the way Anderson saw a bubble blower with fake fish floating and it changes to different colors with lights. We past it and kept walking to our room. But when we got to our room Anderson broke away from me and he ran all the way back down the hall as fast as he could to go back and see those fish. I was carring the diaper bag and a hot drink and could not keep up with him! He has never moved that fast before! Yikes! It made me want to get one of those child leash things for this summer!

     When we got to the room we waited only a few minutes and then a nice nurse came in to talk with us and ask us a few questions. She was our nurse the first time and remembered us. That was nice.

     Only a few short minutes later and Dr. Lim came in. He is such a friendly down to earth Dr. I love that he does not make me feel stupid if I ask him questions and he trys to explain things to us in smart, yet not confusing ways. I appreciate this about him a lot and it makes me feel very comfortable with him doing surgery on my child!

     Dr. Lim took another look at Anderson's hands and studied them a little bit making sure that all of the fingers were growing properly and not becoming tethered as he put it. (When a finger is attatched to a smaller or larger finger It can grow crooked or bent forward because of this). Thankfully he did not see any signs of this happening in Anderson’s fingers.

     Dr. Lim then started telling us how he had just been to a conference and was discussing hand differences with many other surgeons and experts and they all came to the same conclusion that it is best to wait as long as possible now to do the hand surgery.  So instead of   surgery with in the next month like we originally thought we will be trying the surgery around October when Anderson is around 24 months.

     I was mostly happy to hear this. I thought it would be nice to have the surgery behind us but it will be nice not to have to worry about having a cast or stitches during the summer! We also have some trips planned and I am glad that Anderson will be able to enjoy them now more then he could with a cast on.

II. First Hand Appointment.

 When Anderson was over a year old we took him to Gillette Children's for his first hand appointment.

Gillette Children's is an amazing place! Everyone is so helpful and kind. It is also wonderful to be at a place that is just for children. The staff is used to all the different things a child might do compared to an adult, and the whole place is colorful and full of toys. Anderson had a great time and will willingly go back.

Anderson did great. He rode in the stroller for a while, but then because he had been walking for only 2 months,  he pushed the stroller around and ran a little tipsy down the hallways. He loved having such long hallways to run down.

While we were waiting we had a nice big room to our selves. Anderson liked spinning this chair and playing with some toys that were also in the room.

We saw a specialist (plastic surgeon) named Dr. Lim. (pronounced limb, which i think is awesome because he is working on my son's limb. :)

He examined Anderson's hand. He officially diagnosed Anderson with syndactyly. He also explained to us the condition that makes his left  hand smaller. He then discussed all the possibilities (surgery or no surgery, surgery now or waiting until later...), and a timeline with us as far as other appointments. 

Anderson got his first x-ray of his hand. We were able to see that the bones were not fused together. This was great news! We also saw that although my guess was that Anderson's hand was smaller because he was missing a bone in his fingers,  Thankfully that was not true. He actually has all three bones in each finger but one of the bone sections is very tiny. (the 2nd one). This is also good news. It seems like they will grow with his hand . So although his left hand will always be a bit smaller than his right it does have all the correct bones and will continue to grow at its own pace.

Before we left, we made a follow up appointment and an appointment with a geneticist. Read more posts for what happened at those.  

I. How we found out.

We did not know before Anderson was born that he had syndactyly. We found out on September 30, 2010, his birthday.

I had a c-section because he was breech.

only a few minutes old. (you can see part of his syndactlyl...) 

I got to see Anderson briefly and then he was taken with his daddy to get cleaned up and measured while I was being sewn up. After I was sewn up I was brought to our room where Anderson and his daddy were waiting. I was excited to hold my new baby. The pediatrition had beat me to the room and was examining Anderson when I got there. She brought him over to me so that I could hold him for the first time. It was then she told me about Andersons fingers being webbed. I started crying a little bit and she asked me why I was crying. I just said that it made me sad and I was worried about him. I then was able to hold my baby for the first time. He was so perfect every little thing about him! He made me so happy. I could not even worry about his hand or even think about it for a while.

sweet times! holding the baby you have waited for, for so long!

Later I was slightly mad that I had not even gotten to hold my baby and here was this woman telling me something was wrong with him. But the more I think about it, it is better then the alternitive of me looking over my brand new baby and finding his hand on my own.

Over the next few days of being in the hospital I carefully examined his hand many times. I would sometimes cry when I did, just thinking of all he might have to go through in his life just because his hand was a bit different.

I knew that babies could be born with problems I just had never aloud myself to think of my baby having any. I did not want to worry about any of that during my pregnancy.

Excited about being new parents! What a tiny little burrito!

As I was thinking about Andersons hand I was thankful he had just a cosmetic problem. I knew that some babies are born with heart problems or other issues and have to be sent straight to surgery. So I thanked God that although we were sad about his hand Anderson was really very healthy. And although he had a problem other children might not have, God chose him (and us as parents) for this path because he knew we could handle it. God created Anderson with a specific plan in mind. The more i get to know my son, I see personality traits that will undoubtedly help him through this. He is definitely a fighter, nothing is going to hold him back. He is a huge people person, so friendly and caring. I hope that this experience will only help him become more caring of others with differences!