Curve Ball

At Brooklynn's 9 month checkup several weeks ago, after the pediatrician did her exam, she said she wanted to talk to Joe and me about something.  She said that she suspected that the soft spot on the top of Brooklynn's head had fused prematurely.  She said she could be wrong, but she wanted us to take her to have a CT Scan done to make sure.  Better safe than sorry.  She told us if her skull had fused,  it would most likely require surgery.  They would need to go in and cut it to allow room for her brain to grow.  If it wasn't corrected, the head wouldn't expand for the brain to grow, so her brain would just push out and cause her head to be oddly shaped, and it would mess with the symmetry of her face.  She said there would just be a small scar, and that it was a minor surgery.

I think Joe and I were both surprised!  Not really something we were expecting to hear.  I know it gave me a little anxiety, and I'm sure Joe felt that way too.  Brooklynn's head shape is just like Joe's when he was a baby, so in all honesty I was expecting to take her to have the CT Scan, just to find out that everything was fine.  I called and scheduled the appointment for a week and a half later when Joe could be there with me.  

On the way to Texas Children's Hospital

 Once we got the paper work filled out, we waited about 45 minutes until they called us back.  

Hanging out in the waiting room

So glad Daddy was there!

 When they finally called us back, my heart started racing!  I wasn't really sure how Brooklynn was going to react.  Luckily I had scheduled her appointment around her naps, so she was happy as could be.  From the time they called us back, until the time we were walking out, was probably only about 15 minutes.  They had me lay Brooklynn on the bed, and then the lady swaddled her with a blanket, and then put this material over her to keep her held down, and to protect her from radiation.  Joe and I were both asked to put on vests to protect us, and then we were allowed to stay right next to her the entire time.  That was such a relief!

 They put a towel over brooklynn's forehead and around the sides of her face,  and then used a strap to hold her head down and keep it from moving.

The scan itself took less than a minute, and thankfully Brooklynn was relatively calm and did better than I was anticipating.  You can see the lights they flash up on the machine to keep the kids entertained.  Worked like a charm!

After they finished the scan, they said we should contact our pediatrician after 24 hours to get the results.  So, we went about the rest of our day.  We went to an Asian Supermarket to pick up some stuff for dinner that night, and while we were there I got a call from a number I didn't recognize.  When I answered, it was our pediatrician.  She said she had received the results, and it was what she had suspected.  Brooklynn's head had fused, so she would need to go see a specialist and have surgery.  I was in an aisle by myself, and I couldn't help but start to cry.  Those weren't the words I was expecting to hear.  Joe came around the corner and I think he immediately knew.  Needless to say, our hearts were heavy after that.  The pediatrician told me not to cry, that everything would be ok and this was something that was fixable.  There was hope in her words.  I took comfort in the fact that she would just have a small scar, and that it was something that could be fixed.

Over the next couple of days Joe did some research online, and told me "don't google it."  Well, you don't have to tell me twice.  He knew I would get freaked out.  I'm sure he was looking at extreme cases, but I knew I didn't need to have images flashing through my head at night.  One thing he did say is that he found out that they could only do the procedure endoscopically up until 4 months, so she would likely have a scar the length of her head.  When he told me, I was in the middle of dinner or something and didn't really think much about it.  The next day though, it's all I could think about.  I just cried and cried thinking about my sweet baby girl having to be sedated and undergo surgery.  Let alone, one that would leave a huge scar across her head.  Whenever I looked at her, it just made it worse because I would  think things like "her little head is going to have a huge scar soon", or "they're going to have to shave off all of her hair that has taken so long to grow."  I just couldn't shake the sadness that day for some reason.  I think it just finally hit me that my baby was going to need surgery.  I ended up showering, and getting right back into my jammies.  It was one of those days.  I think I cried until I didn't have any more tears left.  My sweet sister-in-law, Shelby,  came over and brought these beautiful tulips, a box of chocolates, and a magazine to help take my mind off of things.  Her visit totally changed my day from that point on.  I didn't cry anymore that day.

 Our pediatrician referred us to a surgeon that didn't have any openings until the 25th of this month!  Not knowing what Brooklynn's case was, or what would need to happen was driving me a little crazy.  Joe's brothers are both in the medical field and were so sweet to try and find out more information for us.  James asked if we would be willing to go see someone if they had an earlier appointment available.  He ended up finding a team at Texas Children's Hospital.  I called Monday, and they had an opening today!  Joe was able to get off work, and went with us.  Meeting these doctors was seriously an answer to prayer.  I had been praying that we would know which doctors and direction we should go, and that we would know by the way we felt.  From the moment we were called back, everyone was so kind and so sweet.  The Plastic Surgeon, the Neurosurgeon, and a dr from the neurosurgeon team all came in and met with us!  They answered all of our questions, and explained everything very clearly.  They spent quite a bit of time with us, and never once did they make us feel like we were keeping them from other things.  We told them who we had been referred to, and asked what the benefits would be of having the surgery done with them instead.  The Neurosurgeon explained that this is their specialty.  The Plastic Surgeon had done a fellowship dealing with things just like this.  The other surgeon we had been referred to did not specialize in this, it was something he just did also.  She also said they have a team including a plastic surgeon, a neurosurgeon, a neuro team, an anesthesiologist, etc that work together on these surgeries all the time.  She also said the follow up care would be a lot better also.  She said Texas Childrens' is the biggest Children's hospital in the country, and they understand these are our babies, so they give the best care possible.   Joe and I both felt really good, and decided these are the doctors we want working on our baby.

The sagittal suture that runs down the top of Brooklynn's head has fused prematurely, which will cause her head to be long and narrow as her brain grows because there isn't room for it to grow.  It has caused a ridge on the top of her head, where it fused, and her forehead sticks out more than normal, and will only continue to get worse if we don't correct it.  They did say that her case is a lot better than most that they have seen, as far as the look of her head.

So, what they will do is sedate her, then cut her head open from ear to ear, using kind of a zigzag line because it will hide the scar in her hairline better down the road.  She will undergo roughly a 4 hour surgery where they will cut the suture open and use plates and bolts that will absorb, to hold her skull together.  It will eventually refuse but not for years. They are also going to essentially reconstruct her forehead.  There can be a lot of bleeding, so there's a 50 percent chance she will need a blood transfusion.  Joe and I will both be tested to see if we are a match. They said there will be a LOT of swelling in the days following the surgery, and she will stay in ICU for a couple of days to be closely monitored, and will spend a total of about 5 days in the hospital.  I will be able to stay with her the entire time after the surgery.  Later down the road she will wear a helmet for a couple of months to help shape the back of her head.  They want to do this instead of doing it surgically, because they think this way will work just fine.  

 I'm sure it will absolutely break my heart to watch her go through all of this(it kills me just to think about it), but I have to think of the bigger picture and that it will all be worth it in the end.  This wasn't really the way I thought we would start our year!  We definitely got thrown a curve ball, but I am very very grateful that it's not something worse.  I have really been thinking a lot about parents who have to constantly deal with things much worse than this.  I can only imagine the emotional toll it takes.

I'm sure the road ahead will be draining, but we have learned to accept our trials and to try and learn what we can as we go through them.  I'm sure we will be relying on our Heavenly Father even more during this time.    Shelby shared a quote with me the other day that will stay with me. "The Will of God will never take you where the Grace of God cannot protect you."  Any prayers in Brooklynn's behalf would be GREATLY appreciated!  We find out Friday when they will do the surgery.

At the Dr's office today

Cutest little teeth!

Love this girl more than words can express!