Friday, August 24, 2012

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!

Friday, August 10, 2012

Wednesday, August 8, 2012

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!  

Monday, August 6, 2012

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!


We are home!

Sunday, August 5, 2012

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


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!


Someone send entertainment! We are going stir crazy!


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.

Saturday, August 4, 2012

Day 4 post op. :)


Lincoln had a pretty good night again. We tried to space out his pain medicine and that was a bad idea. He cried like he was very uncomfortable for about an hour. It was sad! The good news is that we got all of his lines and wires off of him except for one line in his foot. He is free! And the best news is that we are transferring upstairs! We are just hanging out waiting on a room now. Lincoln finally seems to have his big boy appetite back. The area on his butt looks a little bigger so we are applying a cream and keeping a bandage over it. His swelling is going down which has to relieve some pressure for him. Poor boy also got some miralax this morning to help move things along down below. We are taking turns cuddling him now that it is easy to maneuver him.

11:00pm. Writing this with a smile:)

Well, I do not even know how to start this post. I have been trying to think of what to say all day and I have come to the conclusion there are no words for this feeling! The first time he could actually see me he just reached for me, wrapped his arms so tight around my neck and wouldn't let go. It was like we had both been feeling the same emotions throughout the week. After that he basically was ready to party! We had been so anxious to get him back that we had not really thought about how we were going to keep him entertained and under control in a hospital room. Logan said it best when he said we have a fragile newborn and an energetic one year old mixed together. I mean This kid is ready to G -O which is awesome but we have to make sure he doesn't bump his head.....any suggestions?! Within a matter of minutes we had our Lincoln back. I couldn't hold back the tears and for the first time this week they were happy ones! His eyes are still pretty droopy and he still has swelling but I can't remember him any other way now. It is so crazy!

We got up to our new room around five and it is like a five star hotel compared to our PCCU one. We will probably be here until Monday or Tuesday which is fine with me because I am a little nervous about taking Mr. Bobblehead home. It is hard for him to get a good night's sleep here though. They have to come check him every four hours and one of the many fun things they do is open his eyes and shine a bright light into them. I know they are doing their job and it is for Lincoln's own good but they sure are messing up our beauty sleep. I have lived in sweats this week and I am wondering how long I can use the "my son just had surgery" excuse. He will probably be twenty and I will still be the lady going out in public in my pajamas. I mean I really feel like I owned that right though, didn't I?

I think Lincoln may have some of his little buddies come to visit tomorrow and we can't wait! Please do not worry about us being sad about all of was our happiest day together yet. It is going to be hard to ever top it.