Saturday, February 4, 2012

Goodbye 2011, Hello New Year!


A really good book!



Looking at my first tree and new Polar Express train


Happy Boy




Watching the Lions with Poppop

I'm such a celebrity I am featured in a calendar!


My first Christmas present from Great Grandma Mary

My first normal baby boo-boo (mommy cut my nail too short)

Ready for the ice!



Christmas bear from Aunt Sally

I love Christmas!

Who is that cute baby in the mirror?

Mommy and me had a long day...

First day at school!


Jumparoo!
It has been awhile since I last posted. Landon is doing fabulously (he is 10 months old today!) and I didn't post because we were doing normal family things like celebrating Landon's first Christmas and New Years, me going back to work, and Landon starting 'school.' It is certainly a challenge juggling everything but it is nice when my biggest problems are trying to figure out scheduling for the family and not having to make life and death decisions for my son.

We are in such a different place at the start of this new year than we were last year. Last year we had just started telling friends and family about my pregnancy. We were looking forward to a new stage of our lives with a little bit of fear, but mostly with excitement. Of course our lives turned upside down and I honestly don't think I could have ever imagined what 2011 turned out to be for us. We decided for 2012 we will take the joys and the miracles we experienced in 2011 but will leave the fear, angst and devastation back in last year!

I realized how far we have come on the way home from work last week. I stopped at Target to pick up some food for Landon and was searching for a phone charger in the console of my car. In my search I found a camera. Taking a moment to look over the pictures, I saw pictures from our trip to Europe 2 years ago, my mom's graduation from college (still so proud of her) from several years ago, and my brother Joey's First Communion 5 years ago. Then I came across Landon pictures from his first week of life. I think like most people, as you get further from a traumatic experience you begin to forget about the most painful aspects of it. I didn't realize that was true of Landon's birth and first week of life before those pictures brought me back.

Mommy and Daddy wanted to see what I look like without tubes

I am absolutely convinced even more than before after being able to finally look at those pictures from a clearer frame of mind that Landon is only here through the grace of God. The baby in those pictures should not have survived to be the little man we have today without a Higher Being who had a purpose for him. Included in God's plan for him was certainly the AMAZING medical system and medical staff that touched ours and more importantly Landon's life. We were given the opportunity to visit the recently opened new state-of-the-art NICU at the hospital Landon spent the first 6 months of his life. It was wonderful to see his doctors and nurses who really became our family. Even better we got to tell Dave Brandon (the current athletic director for the University of Michigan and one of the major philanthropists behind the new NICU) how well his money was spent because of the one of the kind doctors, nurses, and other medical staff that exists at that hospital.

Landon has had a busy month with doctor's appointments and physical therapy and developmental play groups at 'school'. He had the first of a series of visits with the NICU follow-up clinic in early January. This clinic consists of Landon's former NICU fellows and a neurologist. This was a nerve-wrecking visit for me because they test Landon's cognitive, social, and motor skills to determine where he sits according to his adjusted age. It is also where they may see signs of more significant issues like cerebral palsy. We were thrilled to see Dr. Stephen when we got there. That was my first reassuring moment because Dr. Stephen knows Landon and my biggest fear was some doctor who didn't know him would do the assessment and wouldn't score him well. Dr. Stephen first met Landon in May when he was less then 2 lbs and deathly ill. It was a full circle life thing for him to see him at 13 lbs (now 14.5) and a happy go lucky baby.

Dr. Stephen was happy with his tests and reported to us that he was right on track for his adjusted age! This was a relief, though I still was waiting for the other shoe to drop. The neurologist came in after Dr. Stephen's  assessment and worked with him for a few moments. She noted that his hamstrings seemed tight and she saw what I have been scared of for several months now, his weaker left side. I asked the question I had been holding in, was that weakness Cerebral Palsy? I know we wouldn't get a confirmation or denial in that appointment, it is just too early. She said what I knew she would say, that she is of course concerned about the same thing. She said we need to continue what we have already started doing with physical therapy. Her hope is that when we come back in 6 months she won't see the weakness anymore because we had worked so hard with physical therapy. This is our best case scenario.

I have to force myself not to dwell on the possibility of neurological development delays. I find myself staring at every little movement or lack of movement and worrying that it is a sign of the dreaded CP. The neurologist assured us that if he does have an issue like this it seems very mild, which would make it very treatable. By doing extensive physical therapy now, we are hoping to set Landon up for success regardless of any diagnosis we get in the future. Like pretty much everything else in his life, we have to let it go and wait and see what happens.

Landon also had a visit with his lung doctor. He continues to grow and do better, but needs the oxygen. When they tested him it was just 1 point below their alarm limit for oxygen. That is getting closer and closer to hopefully starting to wean the oxygen. Hopefully after his heart and lung tests in March, we will see an end in sight with the oxygen!

We continue to have a love/hate relationship with his feeding tube. It is a wonderful tool to make sure we are pumping as much calories into him to help him (and his lungs) grow. However, as he gets older, he dislikes it more and more. We spend a lot of the day fighting with him to keep it in. He then 'complains' vehemently with the 2 or 3 sounds he knows how to make, but I know when I am getting sassed! We have started trying some solid foods like rice and purees, but he isn't particularly fond of them. We have a therapist to help with this and we keep on trying, though it is heartbreaking to see him struggle at things other babies do without a second thought.

He is sitting up on his own and rolls over. He even likes to stand holding onto his music table for about 30 seconds at a time. The kid LOVES music. This is no surprise since he loved music even when he was still inside of me. His little kicks to music were one of the reasons I knew I was doing the right thing in continuing to fight for him while on bed rest. He is a social butterfly and laughs laughs laughs. I know I would be a much grumpier person if I went through everything he did, but his true laid back personality just seems to shine on through! We have been even able to take him out to eat at restaurants with his preemie girlfriend Peyton and her parents. He also had a playdate with his friend Sophie (not to be confused with Sophie the Giraffe teething toy) and is quite the little player. I do promise to try to make updates more frequently, but I must say I have a new found respect for working (and stay at home mothers). It's hard work!


2 comments:

  1. Yay! An update! I Love reading about Landon, and the pictures are so dang adorable! I hear from True all the time about how he is the cutest baby ever!

    I know people kind of hate when people say, "I know someone..." but this summer I became friends with a woman in her early twenties who was born at 24 weeks. She had CP but I had no idea until she just lost her footing and tripped one day. I helped her up and asked her if she was okay and she explained she had a mild form of CP and on rare occasions she lost her footing. Otherwise, she was not impaired at all. I thought of her often as you were going through your struggles with Landon this summer and I hoped for as good as an outcome as this beautiful young woman. I know that no matter what happens, you will have the strength to handle it. I hope that doesn't sound trite or simple - I just sometimes believe that our babies chose us and that God never gives us more than we can handle. I'll continue to pray for the best outcome possible for Landon. He is so strong and amazing and I see the charisma in his photos. I can't wait for the day when he is out in Grandma's back yard running around with Gus and playing basketball with Joey.
    Can't wait for the next update!

    hugs,
    Christy

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  2. Thanks for the update - though I get them "in person" through your Dad now at work. I can't wait until he is off the oxygen and do some visiting with the rest of the family - but with all the kids I've got in school, plus my own seemingly "typhoid Mary" tendency to carry colds and the like around with m e, we're still staying away :o(

    I'm reminded of that conversation you and I had so long ago, and can only say that you're living it just fine!

    Love ya, Kid! Proud of you all.

    Uncle Pat

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