Surgery #2

Wellp.. I'll be honest, I am not happy about updating this blog!  I told myself I would keep it up after his first surgery but I think I wanted to just forget this whole thing ever happened.  (Plus, having two kids and a husband who travels doesn't leave for much free time;))  
It was so therapeutic for me to write in this during his first surgery and it was so much easier than trying to text/call everyone who was praying for him!  We are so lucky to have so many people who love and care about him.  So I figured I would do the same thing this time.

Lincoln has done great since his first surgery.  I have so many people tell me how shocked they are at how "normal" his head looks.  As weird as it sounds, so am I.  He looked so swollen that first year post op I always had a hard time believing he would ever look the same.  The first couple of years his progress was right on track.  Dr. Kelly thought he felt a soft spot during the three year visit but was very optimistic that it would close on its own.  So at his 4 year post op appointment we were a little surprised when he thought he still felt some soft spots.  We got a CT scan (for which he held so still and didn't need any sedation...whoop whoop!) and waited for a week to get the results.  The CT that he did have several areas that were not closed but only two of which were big enough to cause any concern.  My heart sank.  The rest of that first conversation was a bit of a blur because all I could think about was trying to not cry in front of Lincoln.  I totally failed at that but he thought I was crying because the office smelled so bad that day.  Haha!  He's definitely my kid.  We don't do bad smells.  

Logan and I ended up going back into the office together with Lincoln to talk about all of our options.  They told us they will need to go back in through the same incision and cover the soft spots.  We had the choice to either use artificial bone or his own bone.  If we use artificial there is a higher chance of rejection and would more than likely need to be replaced because it doesn't grow with the skull.  If we decided to use his own bone we could either use it from his hip or his rib.  If we used his hip he couldn't run for 12 weeks and you risk fracturing his pelvis.  If we use his rib we could deflate a lung which would require a chest tube for a few days.  Also, if we use his own bone there is a chance it will dissolve in the first year and if that happened we would have to go in and do the artificial bone.  However, if the bone doesn't dissolve he won't need any other surgeries because it will grow with his skull.  After weeks of going back and forth we went with our gut and decided to use his rib.  Yes, it sucks to think of him having two separate incisions but we don't want him to go through this again when he is older.   There was no right answer and unfortunately both scenarios kinda suck.  We just decided we are going to be optimistic and not second guess our decision.

I had some major anxiety about when and how to tell Lincoln about it all.  Luckily, it just kind of happened.  He overheard my mom and I talking about health insurance stuff and he freaked out for a minute but then I promised him an XBox if he was brave about it all.  So all he can talk about now is getting this XBox after his surgery. . ha!  

Since then, I feel like we have been living a bit in denial.  God has given us some pretty awesome distractions though.  Two days after finding out Lincoln had to have the surgery, Bobby Bones played Logan's new single out of nowhere.  That was such a surprise and a happy moment for us.  I feel like God knew we needed something to lift our spirits that week.  I can't speak for Logan, but I was having quite the pity party.  I definitely felt like it wasn't fair.  That day it just seemed like everything was going to be okay.    

We have been so lucky with Lincoln's diagnosis.  It could be so much worse and I thank God every day we have two healthy kids.  Although the mom in me is nervous and has lost many nights of sleep thinking about everything that could go wrong in the operating room, I know it is going to be okay and we will get through this again.  The anticipation is the worst part and we are all ready to get it over with!  His surgery is the morning of January 24th.  I'll update this as I can if you want to keep up with his progress.  If you have some spare prayers, please say some for this sweet little man and his doctor.

Spongebob Square.....head ?!

So.. I am feeling like a total slacker.  I was looking through Lincoln's baby book only to find that I have not written anything in it since BEFORE his surgery!! That was like over 6 months ago.  I told myself it was OK because I had probably written things in this blog that I could transfer to the book. Nope!!  I haven't updated this since August.  I guess I am going to have to start making up dates for when he did all the firsts the book wants to know about.  Is there really a mom out there who writes down when their child first feeds himself?  If there is, I don't want to know.  So I am updating this blog out of guilt.  Haha!  Just half way kidding.   But for real,  I feel like Lincoln has changed so much since his surgery I don't even know where to start.  

Everywhere we go people ask me how Lincoln is recovering and when I am going to update his blog.  It is so amazing to still have people thinking of our family.  It almost catches me off guard because I forget how many of you read this and prayed for him.  We were watching a show one night at the Blue Bird and one of the songwriters came up to me after and asked if I had a blog and a little boy named Lincoln.  She must have recognized me from all the pictures.  I couldn't believe someone we had never met had been reading this and praying for Lincoln.  It really is crazy!!  After all the awful stuff going on in the world it is so refreshing to meet people like her who prayed for a little boy they didn't even know.  It makes me tear up just thinking about it!

I wish I could lie and say that I have totally moved on and don't ever think about his surgery but the truth is I think about it every day.  It is not that I am still sad about it, it is just the crazy mom in me worrying that he will have to go through it again.  I try not to even say those words out loud because I am so afraid of it.  We have seen the doctor every couple months since his surgery and so far so good!!!    (   Give me a minute to jump up and down and party... ;)   ) I feel like every time we walk out of his office we should like go for cocktails and celebrate!  They told us when we left the hospital that his head was going to feel "lumpy bumpy" but not to worry.  Excuse me?  So when I feel a knot on top of my child's head I shouldn't worry?  Ya right.  Right now he has what feels like a marble sticking up out of the left side of his head.  Of course I freaked out when I first felt it but had to remind myself that they say it is normal.  The whole front of his skull is bumpy.  When the skull grows back together and the plates dissolve his head will feel normal again.  What is normal?  I can't even remember.  The only time Lincoln's head felt "normal" was in his first two months of life.  

One thing parents who had gone through this kept telling me is that he will stay swollen for the first year after surgery.  I just really didn't believe them but they were so right.  Looking back at pictures of him it is unreal to see how swollen he was even months after the surgery.  He is FINALLY starting to look like Lincoln.  Since the swelling has gone down we are seeing more of the plates in his head. .especially the plate in his forehead.  I think it is kinda cute!  Anytime he gets mad, cries or excited you can really see that plate front and center!  I know nobody else would really notice it but I sure do.  I just think of him as an action figure.. Spongebob Squarehead!  If you run your hand across his forehead you can really feel the square plate.  The doctor says it will get more prominent the older he gets.  As his skull grows back together it will push that plate out until it finally dissolves.  The main thing I still worry about is infection. . .I know this would be super rare since he is pretty much in the clear for this but they told me that as long as he has those plates in there that there is still a chance of infection.  So anytime he gets a fever I go through the worst case scenario in my head and freak out.  Just the thought of that incision getting opened back up...  I can't even go there!

I have been having nightmares that we are hanging out with other kids his age who are talking in complete sentences and Lincoln just looks at them and says, "Goo!"  I wake up in a complete panic and spend the whole next day trying to teach him new words.  He just looks at me like mom you are so dumb. . .every baby knows that "gaga" is a real word for anything.  But then the crazy mom in me goes away when I talk to other moms who say their child is doing the exact same things Lincoln is doing.  I am sure one day he will be talking our ear off and asking us "But why?" every minute so I will enjoy this phase while I can.  

Since Lincoln has had surgery I have had a lot of friends give my info out to other parents they know whose child is having the surgery.   I just always like to tell them how great Lincoln is doing now.  You would never know he had anything wrong!  He is just as handsome and smart as ever.   As much as the surgery sucked, I am so happy that we got this taken care of for Lincoln when we did.  He will never remember it and his brain will be able to grow how it is supposed to!  He bounced back so quickly and from what I hear most kids do.

Our next appointment with the surgeon is in a few weeks and I will for sure let you know what they say.  We will see the surgeon until Lincoln is six years old.  I am hoping it is another appointment that lasts about 2 minutes and we get the thumbs up.  If this happens and you are free and want to join me for a celebratory cocktail please let me know!  :) 

3 week update!

I can't believe how long it has been since I have updated this!  Time is flying.  It's amazing how much free time I had at the hospital.  This blog kept me sane.  I had so many emotions that I needed to get out and I couldn't bring myself to say them out loud so it felt better to just write them.  Since we have been home I feel like I have not had any free time!  Also, I do not want to jinx us!  I have had so many people ask about how he is doing so I figured I would update this.  I want to try to keep it up because I do enjoy it and one day I think it will be fun (or embarrassing) for Lincoln to read.  I would love to read a blog my mom wrote while I was little but then again I am afraid what she would have said about me, haha!

Well, trying to make sure Lincoln doesn't hit his head is a full time job.  How do you keep a one year old who has just started walking from falling every ten minutes?  The answer is you don't!  He falls but luckily no big ones.  Feeding him seems to be another task I need to work on.  This kid wants to eat every two hours and he eats a lot. . a lot, a lot.  I think he eats as much as I ate while I was pregnant. It wasn't pretty.  His little body must be trying to gain back that pound he lost in the hospital!  I am running out of things to make him and for those of you who know me know I am never going to be a chef.  Once I even messed up Mac & Cheese .. I think it was described as "Mac & Butter."  Do not worry, I have since perfected this recipe.  It's a good thing Logan likes to cook or we would all probably starve.  Don't judge me!  I am a really good cleaner, sometimes.  

The first week home was a little rough.  Lincoln acted like he was in a lot of pain but I wonder now if it was really pain or him just being anxious.  We took him to his one year appointment and I thought he was going to throw a fit but he played it cool, such a tough guy!  Our pediatrician saw that he was getting a molar in so that probably contributed to the fussiness.  I think she was still a little shocked that he had to have the surgery.  His head just didn't look as bad as the severe cases.  When this condition is mild I think it can go undiagnosed for years.  I am so thankful that was not the case for Lincoln.  His incision looks fabulous.  It looks like someone just drew a red line across his head.  Once his hair is all grown in I don't think you will even be able to see it but to be honest the scar is like the least of my worries.  I am more worried that he will need a repeat surgery.  The chances of that are less than 2% though.  The only reason he would need another surgery is if his skull wouldn't fuse together or if the skull re calcified in that area.  I will just die if he needs another one.  Seriously, I can't do it again.  As amazing as he is doing now, it was just too hard.  Looking back at the pictures of him in the hospital makes my stomach physically hurt.  I am so glad we are on "the other side" of surgery.  The doctor said it may take up to 12 weeks or longer for all the swelling to go away around his eyes.  We will continue to see Dr. Kelly until Lincoln is 5 or 6.        
During surgery they put three different plates in Lincoln's head.  Two on each side and one in front.  These plates helped opened up his soft spot and will allow his brain and skull to grow the way they need to.  After about two years these plates will have dissolved and hopefully his skull will be fused together just like it should be.  At that point, he will not have anything in his skull that you or I do not have.  

My friend took some pictures of Lincoln's birthday party which was the night before surgery.  I had not seen them until yesterday and they made me so sad.  He looks like a totally different baby.  I know he is still the same baby and all the swelling has not gone down yet but it still is hard.  It's hard to explain.  I will just be happy when we can go places and people won't look at him like "What the bleep happened to you?!"  We are pretty sure he enjoys the attention though.  Since we have been home Lincoln has learned to eat with a spoon, give himself a drink from a real cup, color, stack blocks, scream like a girl and....... GIVE KISSES!!!  If all of you were here he would give you a big wet one too!  He is not shy.  Thank you all again for the thoughts and prayers.  We are so lucky to have you all and to have our sweet boy home.  I will put some new pictures and updates up soon!

Day 9 post op pics

Sullivan Mae came to play! And Lincoln's appetite is back!

One Week Update.. finally!!

This time last week we were having the worst twenty-four hours of our lives!  The amount of physical and emotional pain we knew Lincoln was in broke our hearts.  We would have done anything to switch places with him.  I still would do anything to switch places with him.  I wish I could write and say everything is perfect but we still are having some rough little patches!

Lincoln's swelling is down, he is crawling, walking, playing and laughing!  He is not quite back to his old self but getting closer every day. It is amazing that this is the same baby who was laying lifeless in that hospital bed just a few days ago.  Everyone kept telling us that when he "turned the corner" he would turn it fast.  They were so right!!  As soon as he could open his eyes we started to see him come back.  He still seems to be in pain when the Tylenol with codeine has worn off.  It is hard because we want to slowly get him off of it but then we spend the whole day trying to play catch up with his pain.  I think for now we will continue giving it to him every four hours and just know that is more comfortable this way!  He is also on antibiotics every six hours just to make sure he doesn't get an infection.  This means that the poor guy is getting something squirted down his throat every few hours and it is a struggle every time.  After everything he has been through he has just had it with people messing with him.  We can't take him anywhere in public for two weeks and need to make sure he is not around anyone who is sick. .. an infection would be my worst nightmare right now!  Little Lincoln has become a stage five clinger lately.  I can handle this because I have missed those cuddles!  He has done a great job sleeping through the night and taking long naps as long as someone is holding him or sleeping next to him.  The first night we tried to put him in his crib and he started shaking uncontrollably and screaming.  I couldn't handle it!  He has been sleeping with us ever since.  

As good as it feels to be home and have the surgery behind us, I have been having a hard time.  I have no idea why.  I really can't even explain it.  I just feel like his little spirit is broken.  I just want him to be the happy go lucky baby he was before.  Everyone has been saying how strong they think we are and it makes me laugh a little.  I think I have been an emotional basket case!  Lately, I have felt angry that this has happened to him.  I know that this is wrong of me because we are so lucky compared to some parents we met.  I just wish there was some way to just make all the memories of this disappear.  This whole ordeal has been so stressful on Logan and I and it has taken a toll on our relationship for sure.  This is probably normal.  I don't really remember what it is like to have a conversation with him that doesn't lead to craniosynostosis.  I asked the doctor if he thought all of our kids would have this and he said there is no way to know but he doubted it.  Thank God!!

I keep thinking about this time next year and how awesome it is going to be to have this far behind us.  And then I realize that I do this a lot in my life.  In high school I couldn't wait to graduate and start college.  In college I couldn't wait to graduate and move to Nashville.  When Logan and I got engaged I couldn't wait to get married, buy a house and start a family.  Maybe this makes me a bad mom but when Lincoln was a newborn I couldn't wait for him to start sleeping through the night.  Now I look back and wonder why I didn't just enjoy living in those moments.  Time goes by so quickly and there is no rewind button.  I would give anything to relive a day when I was seventeen, or when Logan and I lived in a tiny old house with a bathroom as big as a refrigerator or when Lincoln was two weeks old.  All of these times in my life were so happy, I just wished I would have soaked it all in.  Logan and I are excited to see how our story unfolds.  We are excited to meet our future kids, to see where his music career goes and excited to see how many goals we can accomplish by the time we are one hundred.  Logan insists we will live to be well over a hundred.  As much fun as it is to dream about these things, I think my new goal is to live in the moment.  It is so hard to see Lincoln go through this but I am going to try and stay positive.  I know the worst is behind us and that every day he is getting better!  

Day 6 post op

We are going home today!!! Lincoln is doing so good. His labs are normal, he is eating and drinking, he is pooping (finally!) and we have figured out how to manage his pain. I think when we get home in his own environment he is going to really come to life.

We have been so spoiled having our families in town. Logan's parents had to leave Thursday but will be back to watch Lincoln next weekend. Grandpa Martin left yesterday and we were sad to see him go...especially since he never gets tired of entertaining Lincoln. Auntie Kaitlin and Grandma Martin will be here the rest of the week. We miss being able to see them anytime we want. It is so fun to see Lincoln get to know them better! When we got to the PCCU the nurse said, "Your moms came up here and took a tour earlier. They are very ....... prepared." Logan and I both laughed, apologized and agreed. She then told us not to apologize and that she wished she had parents like that. We are very lucky!


3:30

We are home!

Day 5 post op... The roller coaster continues!

2:30pm

I feel like I did this time last year after having a new baby. The adrenaline has worn off, I could cry at any point in time for no reason and I have not got a good night's sleep in about a week! Oh, I also feel just as jiggly since I ate my body weight in baked goods. We had a rough night. Lincoln did not want to sleep in that carseat so we had to take turns sitting up with him. He had to get a new IV in his left hand which was so hard to watch. He looked as purple as an oomploompa from crying so hard. His pain has definitely increased today and it is so hard to see him this way. But I do have some breaking news......he filled his pants! It looked a little painful but I am glad he got that situation worked out! His PTT was high and they are worried that he may be at risk for bleeding. The hematology team came in for a consult and we are running more tests today. We will also take Lincoln to them in a month just to make sure he doesn't have a mild bleeding disorder. The doctor said he would be surprised if he did. That is all for now... I am going to enjoy him being in a happy mood!

4:00

Someone send entertainment! We are going stir crazy!

8:00pm

We may get to go home tomorrow! I am happy and scared to leave. I think it may take an army to watch him now. His labs came back normal and that is such a relief! Lincoln still seems to be in quite a bit of pain. Hopefully we can keep that managed at home. The little girl next to us had the same surgery Tuesday morning right before Lincoln. She is so sweet and cute! This was her second surgery and they think she may require another. The poor baby was born at 24 weeks and she has had her fair share of hospital stats. I just wanted to hug her mom. You could see the emotional and physical exhaustion on her face.

Lincoln has been acting himself more but is terrified to be touched by anyone he doesn't know now. When the nurse walks in he immediately cries, waves bye to her and gets real mad when she doesn't leave! When I hold him now he locks his arm into mine and grips me so hard I have marks from his nails. He is so scared and it is the saddest thing. Hopefully soon this will go away.

Kaitlin, Logan and I went outside and had our own gymnastic competition. I won the freestyle. Pretty proud of my performance. The nurses could probably see us and that is why they are planning on discharging us.