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!

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!

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

We Did It! Happy Birthday Baby!!!

First time at the park

Strolling around on St. Patrick's Day

I recently passed by a church with a sign that stated 'Prayer Changes Things.' A couple of years ago I would have glanced at that sign without a second thought. I mean I considered myself a spiritual person and certainly believed in God, but didn't have much occasion to really reflect on the power He has. All of that changed for me and not only do I know that prayer changes things, I now know that prayer changes EVERYTHING. I know this because one year ago today at 3:05pm to be exact, my husband and I were given what seemed to be the insurmountable task of keeping an impossibly tiny baby alive.

I haven't talked much about that day on this blog. It was such a blur when it happened and still seems surreal now looking back. I was just getting used to the discomfort of hospital bed rest and the reality of the contractions I had been having about every 30 minutes for the last week. When my doctors came rushing in to tell us that Landon's heart rate was dropping with the contractions and it was time for him to join us in the scary outside world, I didn't totally compute their words. I was busy mourning the loss of what should have been Landon's birth experience. He should have had family and friends waiting in the waiting room for a first glance at him. He should have been whisked into his mama's arms instead of the cold, sterile treatment room. He should have weighed more than 1lb 13 oz and been older than 26 weeks.

I suffered some complications after he was born and had to stay in the operating room for several hours while they worked on me. All the while having no idea if my baby lived or passed on. The anesthesiologist tried to distract me with talk of his recent vacation.  Although mundane, I believe it saved my sanity because it was becoming increasingly hard to fight the panic that my baby could die before I got to hold him. I don't know who this was harder on, me or Ryan who followed Landon to the treatment room so he could witness his baptism before he was ushered into the waiting room with our family. At least I had drugs on my side!

Once they were finally finished working on me, I was transferred back into my room. It was such a disconcerting feeling to know that I had been in that room that morning with a wiggly baby inside me and now he was in the world without me. I had no idea what he was going through, but I did know that he was still fighting because the doctors had promised they would bring him for us to hold if he was too little and too sick to fight. Ryan had two pictures they took of him and I have to admit I was horrified. He was so very small and weak looking. I couldn't imagine how he could keep fighting. That kid has certainly taught me never to doubt him in the future!

I don't remember a lot about the first time I saw him. I was overwhelmed by tubes and wires and my own blood loss. The machines were explained to us and the nurse assured us that after a few weeks the beeping wouldn't even phase us. That was so hard to believe, little did I know that Ryan and I would be explaining those same machines to other NICU parents in the coming months. We were told statistics and risk factors and all of the terrible short term and long term challenges our baby could face. However, I remember his first attending, Dr. D. telling us something that we embraced each time a new challenge and new set of statistics was presented to us. He said remember your son's chances at anything (survival, long term disabilities, blindness, infection, etc) are not whatever scary statistic the medical books say. They are 0% or 100% because our son is an individual and those statistics don't take into account that what is Landon. He had a 0 or 100% chance of living and man if he didn't choose 100%.

You know the rest of the story. Who knows what the actual statistics are of Landon surviving to this day. I am sure they are somewhere along the lines of the chances of someone winning the lotto. (I'll take Landon the wonder boy over the lotto any day). You see when we were disheartened by statistics we didn't take into account the thoughts and prayers of our family and friends or the world class medical staff at CS Mott Children's Hospital or what can only be called the 'Landon Factor'- our angel pie's God given will to fight and survive what most adults would have collapsed under.


He had a fabulous birthday today. He got to take cupcakes to the staff at the NICU and attempted to eat birthday cake (not too sure about it). The best birthday present is that we took out his feeding tube last week, and he is going strong so far without it! He also looks a whole lot better :). Wherever we went today people would stop us and comment on what a beautiful baby we had. He has a presence, a charisma that I feel like goes beyond just a mommy's opinion. It is like people can see the hand of God in him, something everyone has but is just so clearly shining from him. 


We decided to just have a small party for him and wait to have a huge party in the summer when he was actually due. Mostly because of my fear of the tail end of cold and flu season and not wanting him to be exposed to anything while he is still on oxygen. We have an appointment in the beginning of May to hopefully talk about starting to take off the oxygen...trying to not get too excited yet. 


Besides who cares about a little bit of oxygen (he needs just a whiff now) when I have a miracle baby! I know it is hard to believe given how wordy I usually am, but I don't have the words to thank all of the people who have been a part of keeping this baby alive and thriving. I hope you all know of our gratitude and undying thankfulness. You are the reason we have this baby, just as much as we are. 


I do have to specifically say something about the two most important men in my life. Looking back it is easy to see where Landon got his personality and perseverance from. My husband is an amazing man, he is the epitome of what a father should be. He came to the NICU every day even though he worked all night. He was always strong when I couldn't be. And now he feeds and bathes and changes this baby, he goes to play groups when I am at work (usually as the only guy there) and he just loves his son.


My Landon has changed the lives of countless people in his short year. His essence just shines and makes you want to be a better person because you realize what a gift life is. I have unlimited expectations for my little man in the years to come and can't wait to share his triumphs with you! 

Birthday Boy!

Standing up

First Birthday present from Aunt Carey and Uncle Cliff...toddler golf clubs!

Not sure about birthday cake...