Thursday, April 18, 2013

The Soundtrack of Our Lives

I know, I know it has been forever since I last posted. I had the crazy notion that the next time I would post would be to announce that Landon was finally walking. Of course for anyone who knows Landon, he does things on his own time. I'll admit being a type A control freak type person makes it a wee bit hard since I am not privy to his schedule. As we celebrated his 2nd birthday a few weeks ago, it has been a time for reminiscing and a time to give thanks for how far we have come. As time goes on, I find myself mentally separated from the NICU journey we endured. It feels as if it happened to someone else or it was a really sad movie that created vivid memories. This makes it easier to take for granted just how far we have come.

Not so sure about the big boy bed he got for his birthday

More excited about the Mickey Mouse on his cake then the cake...doesn't take after his mother at all
However, at times, I am reminded of the first 6 months of Landon's life. Usually this reminder comes due to a song I associate with that time period. I think we all have a 'soundtrack of our lives' or music that reminds us of a special birthday or the first time we met our spouse or a moment with our parents. For us it starts with the Mumford and Sons entire album 'Sign No More.' The song 'Little Lion Man' was the inspiration for Landon's nickname. I would listen to that song while on bedrest and at times when I felt most desperate, when I hadn't felt Landon move for some time, he would start kicking up a storm to the beat of the song.  Once he was alive and fighting, music was a vital part to his recovery. Oftentimes when he came off the ventilator (whether because he pulled it out himself or when the doctors planned to take it out) we would sit for hours next to his isolette and sing. He was a fan of the songs of Andrew Llyod Webber plays, Les Miserables being a favorite. And of course I had to pull inspiration from Tom Petty with 'I won't back down,' which seemed rather appropriate at the time.

Now Landon's musical tastes have evolved. He especially loves any song Mickey Mouse or Dora the Explorer sings. He still loves pop songs, we even have a video of him clapping and dancing on beat to Beyonce! The song that is currently in my head is Emeli Sande's "Next to Me." The words of one stanza go:
  "When the skies are grey and all the doors are closing
       and the rising pressure makes it hard to breathe
      well, all I need is a hand to stop the tears from falling
      I will find him, I’ll find him next to me"

Why this song? I think it is because living through life and death while in the hospital you have adrenalin to live on but now that we are home, sometimes regular living can be so much more exhausting then fighting for life. Sometimes I almost feel like I can hear God telling me that I prayed and begged for this baby and now I have to put my money where my mouth was and give that baby everything he deserves. It is a good thing then that I have my husband Ryan next to me. I was able to reflect on everything he has done for me since the moment my water broke early on Landon's birthday. We actually spent his birthday in Las Vegas, the same place Ryan had to rush from when my water unexpectedly broke. He recalled the horrible thoughts and emotions that raced through his mind while he desperately tried to get him before we lost our son. Never in our wildest dreams or prayers could we imagine that two years later we would be able to take the picture below in the place Ryan was standing when it all started. 

Looking at the same window daddy did when mommy told him her water broke
Alright now that I have gotten my ramblings out, let's get to the part that you really care about: Landon updates. He is absolutely the most laid back, happy little guy. All he wants to do all day long is play, laugh and dance. He continues to learn and grow everyday. He loves to 'read' books especially ones about doggies or the moon. He loves throwing his ball with his dog and his absolutely favorite thing to do is go up and down stairs. Actually it doesn't matter if it is stairs or an escalator or an elevator, he just likes to 'go up' which is what he shouts if he sees any of those things. 

There are still struggles. We are still working on walking though getting so much closer. We have all agreed that  Landon is a cautious little guy and just needs to build up his confidence. He has no problem getting around using any available item as a walker including laundry baskets, toys, and sometimes the dog. He is pretty independent on other things including feeding himself. He loves to get his own food out of his own bowl with his own fork. He isn't particularly good at getting all of his food in his mouth so the dog is definitely gaining some pounds. 

Even with the food consumption, we are still struggling with weight gain. He is still a little guy looking closer to the size of a 1 year old then a two year old. Of course that may just be a gift from his mommy as I was always the smallest kid in my class. We still struggle because the quicker he grows the more healthy lung tissue and the better heart function he has. He hasn't had perfect lung function or heart tests since I last posted but they are getting better each time which is what we have to focus on. 
Pretending to be a nurse like his favorite nurse Kimmy

At his first hockey game, he got a puck!

Hamming it up

It is frustrating because you just want him to be a normal, healthy kid. It seems unfair that after all he has gone through he still has to continue to deal with things other children do not. Coming to the realization and ultimately the acceptance that he may never be a totally 'normal' kid given his beginnings has been hard. But then I don't imagine he would have his amazingly charismatic personality if he hadn't been through everything he has. Besides who knows what really is 'normal.' He work hards and he enjoys every second of his life. I think there are many normal people out there who would love to have that ability. 

I will try to update more often, though with the energy this guy has I am not sure how much spare time I will have- especially after he figures out this whole walking thing! Thanks for your thoughts and prayers over the past two years, we are here today because of them!
Landon and Mommy at Auntie Catherine's and Uncle Scott's wedding
Landon jumping on his gift from Auntie Sally

Sunday, September 9, 2012

When You Smile...The Whole World Stops and Stares for Awhile

I know, I know, it has been some time since I last posted. I am happy to say the reason for that is a good one: I have been busy keeping up with a toddler! One would think that learning to do normal parent stuff (ie keeping Landon from those fascinating electrical outlets, making sure some food ends up in Landon's tummy instead of Huey Lewis our dog's tummy, and getting someone to sleep the whole night in their crib) would be easy after all we went through. That is soooo not the case, it is just as hard for us as any first time parent. The upside comes from the fact that we try not to take any moment for granted. Sometimes it is hard when our little crabby patty is crying at 3am due to teething to be remember this! It is in those moments when I remember the first time I heard Landon's very hoarse cry, he was almost 6 months old. We would hear other babies in the NICU cry and wonder when we would hear our baby. Now, we jokingly say that he laughs all day and cries all night.

Just me and my dad

My first vacation!

The thing is that he is actually a very happy little guy. People just gravitate to him. It is like the lyrics in that song "When you smile, the whole world stops and stares for awhile.' I used to think that just happened because of his oxygen and feeding tube, that perhaps people stared because of sadness due to his situation. However, after we lost the feeding tube and the oxygen (going on two months now!) even more people would smile and wave or comment about him. We can't go to a store or the mall without someone stopping to say hi to him. Of course I am biased as a mom, but I also feel that people can sense his charisma and strength. Some we tell the journey we have been on, others we just let them think he is a regular beautiful little boy.

I am pretty sure the kid is going to do some amazing things in the world. He has come so far and every day does something new and unexpected...sometimes something we were told he would never be able to do. He is a chatterbox and recently discovered he loves throwing things and playing catch. Unfortunately, the throwing extends to throwing all of his toys out of his car seat while mommy is driving, his food on the floor for the dog (which is usually accompanied by an 'uh-oh') and whatever utensil he can find on the table when we take him out to eat.

Mommy and Daddy on our first whole night away from baby

Me and my doggie

At Fall Fest!

I know when we last left our story he was just starting to get off of oxygen and had just gotten off the feeding tube. He has officially kicked the oxygen habit. We just had a 'I can breathe on my own party' to celebrate this. Thanks to everyone who attended! Feeding is still not our favorite part of the day, but he makes great strides every day. He still gets most of his nutrition from his bottle, though he moved up to a toddler formula at his first adjusted birthday in July. Unfortunately, he still has issues tolerating milk protein and needs a special (pricy) formula that is partially broken down. He also loves loves loves cheerios, which are great for developing fine motor skills. He eats noodles and meat and most soft veggies. He HATED baby food and refused it. Who can blame him? We are working on switching to a sippy cup, but it is definitely a struggle. Thankfully we have a lot of support in his occupational therapist!

Although feeding is a struggle, he is on track with his cognitive development, placing somewhere between his actual age of 17 months and his adjusted age of 14 months. He waves hello and good-bye, blows kisses, points to what he wants (usually a balloon or Grandma) and has several words including mommy's work Google! We think he may be an engineer like his Papas Bob and Rick as he doesn't play with toys so much as inspect them to see how they work.

We are still behind in gross motor skills like walking. The good news is that we don't think it is because of any damage to his brain or conditions like cerebral palsy. It is more than likely the result of his multiple stomach surgies cutting through and reattaching his abdominal muscles. It is really hard to see him struggle to do the things that intellectually he knows he should be able to do but physically needs to build up more stamina for. He definitely compensates for this by becoming extremely flexible to reach what he wants or uses of combination of rolling, army crawling, and yoga poses to get things. He just learned in the last few weeks how to pull himself up to stand. You can see the strain on his muscles when doing this, but this baby is determined! He can also stand on his own for a few seconds at least.

I stood up by myself!

My dinosaur

Playing with my blocks from Dr. Nancy!

Just chillin'

My best buddy Luke at the NICU reunion picnic

Uh-oh face

Swimming in my pool
Although I still worry about him taking so long to walk, one of his former NICU doctors, Shawna, pointed out that not many kids aren't walking by kindergarten. The thing is, it isn't like he is going to go to a job interview and have to write how old he was when he starting walking. It is frustrating having to watch him work so much harder to do what other babies easily accomplish, but it also makes me so much more proud when he does reach a new milestone.

In between all of these exciting updates, we also went on our first family vacation and mommy and daddy had their first whole night away from Landon. Both were really great! I promise to keep updating a little bit more regularly! I am hoping for the day when I can let everyone know he has taken his first steps!

Sunday, May 13, 2012

Mother's Day the Second Time Around

 Happy Mother's Day to all of the mothers out there, especially our own mothers who have been invaluable to us over this last year (and our whole lives). We wouldn't have the strength to get through what we have without everything they taught us. A special Happy Mother's Day to all of you preemie moms as well. Although every mother is special, I think it takes an extra special person to be gifted with a preemie son or daughter.

Holding Landon for the first time on my first Mother's Day

He still likes to peep out from his blankets one year later
It would be pretty difficult to surpass the joy of my first Mother's Day when I got to hold my 10 week old, 2 1/2 pound baby for the first time. It was overwhelming and terrifying as he was still on a ventilator. They actually pinned the vent tubes to me and warned me several times of the danger of accidentally pulling his vent tube out. Regardless of how scary it was, I think it was one of the first times it really clicked with me that I was this small, fragile baby's mama.

It is hard to describe being a mom to a micropreemie in their first few months of life unless you are talking to another micropreemie mom. Although you fight for that baby and advocate and become a bit of a doctor, nurse, and respiratory therapist, I felt a bit of detachment from the actual mother role in the first few months. Not being able to hold my baby or really touch him for more than a few moments added to that detachment. Though I think a lot of the reason was a coping mechanism. You love your baby and would do anything for him, but your heart and your brain may need to take a step back while things are so tenuous in order to survive with your sanity intact. That changed when I got to hold him. When his little peepers looked at me from beneath his 'I love Hockey' hat, I finally felt like he knew I was there and that my presence mattered. Sure I realized that intellectually before that point, but I really felt it in my heart on that day, my first Mother's Day.

So that is what my face looks like without tubes
He loves school
Strolling through Plymouth

Fast forward to a year later. This kid is the most laid back, happiest baby I have seen. It is like he doesn't remember any of the trama of his first 6 months. In fact he loves when people rub his belly over his scars! I had another unique experience this Mother's Day of getting to take my baby out and about without oxygen for a few hours a day. Last week when we went to his lung doctor, I didn't have high hopes that we would get to take the oxygen off. I had been so sure we would the last visit and had been so disappointed, I really tried to have low expectations. In typical Landon fashion, he did the exact opposite of what I expected. He did so well when they turned off his oxygen for the routine 5 minute test, they left it off for the rest of the two hour visit. Then they gave us the words we had been waiting to hear, we can started weaning him off of the oxygen! How long it will take is really up to Landon and how he tolerates it. We started by giving him two hours a day without it and will be up to 5 hours tomorrow. I am probably being more conservative about taking it off then Ryan would like, but after all we went through I want to be really sure he will be ok! I do credit some of the reason he finally passed the oxygen test to the fact we saw Dr. Nancy on our way to our appointment. It was wonderful to see her and I think she was the motivation Landon needed to get a move on.

March of Dimes Walk with my parents, my brothers, sister, Aunt Carey, Uncle Cliff,
Aunt Carey's friend and Auntie Jess!
It has been a crazy experience taking him out and about without the bulky tank. I keep looking for it before I remember I didn't bring it. I also have to stop myself from explaining why he is on oxygen when people comment on how cute he is. Before I thought it was a bit of pity 'he's cute' comments due to the oxygen, but without it I realize people are just seeing him the way I have always seen him. The only downside is that he HATES putting the oxygen back on. It is really not his favorite thing anymore so hopefully we are able to get him off the next month or so. I don't know what I will do without oxygen cords to trip over all over the house!

Beyond the great news of getting the oxygen off, we also had a great experience on the March of Dimes walk last week. We have to thank everyone for their support for us and Landon for the walk. We surpassed our goal and raised $3,200! It was amazing seeing all of the other babies and parents and hearing their stories of success. It was also hard to hear the stories of those babies who didn't make it, making us even more grateful for the miracle we received. Many of those babies didn't make it because they were born before the life-saving medication that Landon received for his lungs. The thought that if Landon had been born even 5 or 10 years earlier that he wouldn't have made it, makes you really grateful for every moment.

It happened to be the one cold day of the entire weekend (just our luck). So we all bundled up and hoped that the rain wouldn't come until after the walk was over. We were joined by my family, Ryan's Aunt Carey and Uncle Cliff, Aunt Carey's best friend and one of my good friends, Jess (who raised a good chunk of the money). It was a lonnnggg walk for an out of shape gal like me, but being surrounded by great company kept us going. Landon had a great time laughing and playing in his stroller the whole way. We feel so loved and so supported by everyone, I honestly don't know if we would have survived the last year without the wonderful support network we have!

I will catch this water!
I love my tent! Thanks Uncle Mike!

My family at the end of the March of Dimes walk, didn't think I would make it!

Wednesday, April 18, 2012

A Stroll Down Memory Lane...

We had a wonderful first birthday party for Landon and celebrated his first Easter out of the NICU last weekend. Although we wanted to have a giant circus of a party to celebrate how far we all have come, we were too worried about exposing him to too many germs after keeping him in quarantine for so long. We finally decided to have a smaller party with family and close friends and have a blow out 'Thank You for Our Miracle' type party closer to when his actual birthday was supposed to be in July.

Landon really enjoyed his smaller party. Our house looked like a Toys R Us ad and Landon didn't know what to do with himself with all of his wonderful presents. He would open one and try to hold on tight to it while I tried to get him to let go and open a new present. Who knows what that poor baby was thinking during that experience! He has such an amazingly supportive family and friends, it was a great experience to get people together and celebrate. To top it off, he went to Easter Mass the next day and got to sit in front of his Physical Therapist Rocky and see one of his NICU doctors, Dr. Courtney and her parents, (I went to grade school with her) amongst many others who prayed for his continued healing. It was amazing seeing everyone, some seeing Landon for the very first time. I know everyone enjoyed seeing the result of their prayers and in the case of Dr. Courtney and Rocky, their hard work.

Landon gave Ryan and I a little Easter gift by devouring some Mickey Mouse pancakes we  made for him. I gave him a pancake on a lark as it has been impossible to get him to eat any solids, but the kid acted like a starving man. He had two fists full of pancake and literally jammed handfuls of pancake down his mouth. He couldn't eat fast enough. I think that feeding tube is a thing of the past!

Just playing

Easter Mickey Mouse pancakes yum!

Farmer John overalls
He had two appointments this week, one with a physical medicine doctor and another with his surgeon. The physical medicine doctor was extremely impressed with Landon and how well he sat up and waved 'hello.'  He told us although we still have to wait and see to fully know that Landon won't have any long-term complications like Cerebral Palsy, he would have expected to see worrisome signs by now if there was going to be a debilitating problem.  More importantly, he said Landon looks so good he really doesn't need to see us again. One doctor down about 50 million to go. It is not that we don't like seeing them, but it is always a good sign when they don't want to see us anymore!
Practicing with no oxygen
After the physical medicine appointment, Landon had to get some blood drawn to check his liver function before his surgeon check up appointment. The ladies at the lab were amazing! I think Landon thought he was at play group because one lady blew bubbles and gave him a glitter wand to play with while the other took his blood. He didn't cry at all at the poke and just played away while she took his blood. The screaming didn't come until he realized they were going to take away his glitter wand. It got even sadder when we saw a little girl in the waiting area, who looked terrified at the thought of going into the lab where Landon exited screaming from!

The next day we went to see his surgeon for a routine check up. In the car on the way to the appointment, I realized that Landon had had his first major surgery one year ago today. He had been barely 2 lbs and desperately trying to fight the deadly NEC infection that caused a hole in his intestines.  I started this blog shortly after that surgery to keep our friends and family informed because it was just too heart-breaking to tell people updates multiple times. That day his surgeons brought us into a room and told us that he was very sick and he may not be able to recover from the infection and the surgery. Like everything else in his life, the statistics were far from in his favor. The NICU staff found a room for Ryan and I to stay in that night because they weren't sure he would make it through the night and they knew we would want to be there. Some of his doctors later told us that it took everything they had to leave that day thinking that he would not be there in the morning. In typical Landon fashion, he kept fighting and got a little better each day. Above is a picture we took of him right before we took him to the appointment with the very surgeon who saved his life that day!

Holding my favorite balloon!

Oh! What's in there?

I love Auntie Em

My hot Grandmas and my dapper birthday outfit!
Dr. G. couldn't believe the sight of him when he saw him at the appointment. He jokingly said that the kid looks like an entirely different baby but he still recognizes that stomach. He was so happy with his progress and how well he is doing developmentally. He did notice that Landon had ab separation from all of his surgeries. This is something that should resolve as his abs get stronger, though he may never have a strong '6 pack.' He said in rare cases they may have to rebuild his abdominal wall surgically, but given how well Landon was doing, it should get better with physical therapy. The nurse asked if we would ever want to do a cosmetic surgery to make him a new belly button. Landon promptly started sassing her right after that and Dr. G. commented that with his personality he didn't need a belly button, he could just make up a story! Dr. G. let us know that he was so happy with his progress, we didn't need to see him again. Another doctor down, we are on a roll!
Oh maybe I like this puppy dog...
Birthday boy drum set, thanks Aunt Sally and Uncle Ken!

I am definitely ready for a year that is free from drama and life-threatening decisions. We are ready to just sit back and enjoy our little guy. I do have to thank everyone who has been so generously supportive of our fund raising for our March of Dimes walk in a few weeks. It literally makes me tear up how amazingly supportive people have been. I don't know why I am surprised given how wonderful everyone has been this past year, that you would continue to support us in our latest venture.  Now I just hope I can make it through the whole 6 miles!

I don't like birthday cake but birthday cards aren't bad