Tuesday, July 31, 2012

Operation day

Day 1....The swelling has started and he has finally stopped moaning since they doubled his morphine. Had some breathing issues but his x-ray came back normal. Now waiting on labs to get back.....they think he is still bleeding and may need another transfusion. He actually got to get some food in his belly which made him very happy. Going to try and get some sleep. More tomorrow hopefully all good news.

Guardian Angels. . ..do your thing!

I have always believed in the power of prayer but even more so today.  Lincoln was in such a good mood this morning even though he had not had anything to eat or drink since last night.  He played all morning and was so happy on the way to the hospital.  When they called us back Logan and I got to go to the holding room with him.  We were in there for about two and half hours just anxiously waiting.  I was thinking this was going to be a nightmare considering how hungry and thirsty he must have been.  Lincoln decided instead of fussing he would just fall asleep without a fight.. this never happens when he is hungry!  Logan and I soaked up every moment taking turns rocking him.  It is the worst feeling  knowing we will not be able to hold him for the next two days. 

Around 1:00, an hour later than scheduled, the surgical team came to get him and he was such a good boy.  The anesthesiologist (who happens to be a fellow Kansan- hooray!) turned a Tom Petty music video on his phone and Lincoln happily went to him.  It's amazing what old Tom can do!  When they started walking off Lincoln turned to us and reached.  We could hear him start to cry when they walked around the corner. That was the hardest part.  I can't even think about the expression on his little face without crying all over again.  Surprisingly, I feel very peaceful and relaxed now.  I know this is all the prayers working.  

Every hour the nurse is calling and updating us on his progress.  So far he is doing perfect.  Logan made the mistake of asking the surgeon how exactly they fix the ridge. .. he explained to us that they actually remove the front part of the skull from his head, reshape it and then put it back.  They also have to readjust his eyes.  No baby should have to go through this!!!! We are expecting him to be in surgery until around 6:00 or 7:00 tonight.  After that we will not be able to see him for another hour.  Hopefully we will be by his side when he wakes up although we can't hold him.  I am praying that when we see him we will be strong.  It is going to be hard to see him with lines, bandages, a drain in his little head and sadly no more hair.  They say the swelling is not very bad at first but in the next day or two it will be pretty scary.  We are not expecting him to be able to open his eyes for a few days but I would love it if he surprised us and could open them tomorrow! 

Today is our two year wedding anniversary.  This time two years ago the wedding celebration was in full swing.  When you say your vows you just have no idea what life is going to throw at you.  At the same time, you have no idea how much you are going to love your kids.  It seems unreal to us that we didn't know Lincoln then.  It feels like he has always been a part of our lives.

The calls and messages we have received from friends and family today are so amazing.  I wish I could respond to everyone but please know how much we appreciate the love and support.  

When I was little I remember saying the Guardian Angel prayer with my mom before bed.  I would always imagine what my guardian angel looked like. . pink wings, a sparkly dress and of course blonde hair.  Today in the holding room I said the prayer to Lincoln.  I hope his guardian angel is the strongest dude around who has lots of buff friends who can come help him out!  I can picture him now in the operating room standing over my sleeping baby letting him know everything is going to be okay.  I have to believe this because I can't be there to comfort him. 

With mom and dad in the waiting room before surgery.

Friday, July 27, 2012

Craniosynostosis - wait, what?!

I remember the first time I read about craniosynostosis.  I came across it while googling a "prominent ridge down a baby's forehead."  Wikipedia just didn't know what it was talking about, there is no way Lincoln was going to need surgery to fix this bump on his forehead.  I would try to reword my google search hoping that my new search would reveal "just kidding, your baby is perfect!"  After all, I did order a healthy baby, just like I had ordered an easy pregnancy and delivery. . haha!  Obviously, I never got the answer I was looking for from google.  Looking back, I am so happy I followed my mommy intuition and got his head checked out.

When Lincoln was two months old I noticed a ridge down his forehead.  It was barely there, only visible in certain lights, but I could feel it when running my fingers across his little face.  I didn't think too much of it until the top of his head starting coming to a point.  His pediatrician said it was just a "prominent metopic ridge" and it would fade over time.  As much as I wanted to believe this I just couldn't let it go.  We ended up ordering an x-ray and it was read as normal.  A couple more months passed by and it still was getting worse.  Everywhere we went I would evaluate other baby heads, comparing them to Lincoln's.  I finally decided to email Dr. Kevin Kelly at Vanderbilt Children's Hospital and he got us in that week for an evaluation.  Lincoln got a 3d cat scan and it showed that his metopic suture was closed but his other sutures were still open.  He decided that we would wait three months and have a follow up appointment to see how his head was growing.  On one hand, I felt a sense of relief that Lincoln was finally getting the care he needed.... on the other I felt extremely helpless.  The next three months were torture.  There was this little feeling in my stomach that never went away, reminding me that Lincoln may need this surgery.  At his next appointment, Dr. Kelly was not happy with his head growth and decided that it would be best for him to have the surgery.  My inital reaction was shock....and I hate to admit that I had a little breakdown right there in the office.   I knew this was a strong possibility but I guess it never really felt real until that moment.

Since getting the news we have actually been enjoying life and trying to stay positive!  98% of babies who have this surgery do great.  We have total trust in Dr. Kelly's team and that is a wonderful feeling.  So many families who have been through this have reached out to us and it has really helped.  Everyone says that these kids bounce back so quickly.  I wish I could say that after hearing all of these positive stories that I am not worried at all.  Sadly, that is not the case!  I don't want Lincoln to change at all.  I love everything about him, even that ridge!  From the moment I heard his little cry, life has totally changed.  He has made me look at everything so differently and I would be completely lost without him now.  I love his one of a kind personality and I am terrified that is going to change after the surgery or that he is going to look like a totally different baby.  There are also feelings of guilt.  I can just picture us on the way to the hospital, him in his carseat all smiley and trying to sing along to the radio with no idea what is about to happen.  It is just the worst feeling in the world.  I am so ready to get this behind us and be "on the other side."

I wanted to start this blog for a few reasons.  I want to be able to keep everyone updated on how Lincoln is doing throughout his hospital stay and recovery at home.  Also, I am hoping this blog is going to be therapeutic for me!  And most importantly, I hope that someday there is a mom out there who finds this helpful for when her child is preparing for surgery.

Lincoln turned one on July 28 and is scheduled for surgery July 31 at noon.  We were told surgery would take anywhere from 4-7 hours.  We will be in the PICU for the first 48 hours after surgery and in the hospital for about a week.  Logan and I are so blessed to have such an amazing group of family and friends.  I know Lincoln has so many people praying for him.  I know God is going to be in that operating room keeping Lincoln safe.  I know God is going to be in the waiting room keeping us strong.  Thank you for caring about our sweet little boy and for all of your love and support!!