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...

PPROMiversary

One year ago I learned the meaning of the first of a long list of acronyms I didn't know existed (and probably wouldn't mind forgetting). PPROM or preterm premature rupture of membranes is the medical term for when your water breaks in pregnancy too soon for the baby to be considered 'viable.' A search on Google doesn't give a lot of information about PPROM and the information that is there is all pretty depressing. Last year at this time I was lying in a hospital bed desperately trying to find hope out of those 5 letters. It wasn't the medical websites or my doctors who provided it, it was other mothers. Mothers who were on bed rest, trying to keep their babies 'baking' like me. Mothers who choose to keep fighting even when given the grim news I was given. Mothers from all over the world who I never met, who gave me the hope to keep going. We cheered each other on as each delivered our babies, mourned with those whose babies lost their fight, and celebrated with those whose babies continued their journey. Those women kept me going each day and I say a prayer each day for them and those that are in the position I was 1 year ago to keep their faith.

Sitting in his easy chair

Little Lion Landon

Landon exactly 1 year from the day my water broke

Good Morning Mama

Practicing crawling

Loves his bucket

Hi Mama I rolled over

Trying on his birthday/Easter hat

I remember praying to God to allow me to see into the future and know what was going to happen, to know that everything I was going through would be worth it. Sometimes I think the not knowing of bed rest was worse than all of the obstacles we faced in the NICU. What would I have told myself a year ago if God let future me say what right now holds for our family? I would say don't get caught up in the acronyms. After PPROM there was RDS, NEC, ROP, and BPD...among others. Each came with a plethora of Google searches with information on the incredible and terrible things Landon would have to face. The funny thing is although I lived and breathed it and probably read the same research that Landon's doctors were basing their decisions for him on, it seems like a distant fog to me now. I would tell the last year me that this will be the longest and fastest year of your life, but you will look at your 11 month old baby and forget about the needles and tubes and shots and doctors and fear because he will just be your little boy.

The weather has been getting nicer and we have had more opportunities to take Landon outside and finally get to see the world. It is sometimes hard when you have to withstand all of the people staring at him wondering what happened to him. Sometimes I feel as if they wonder why we weren't better parents to keep him safe from prematurity. Of course I understand this is mostly in my head. Really the best part is when you see a person stare at him and something changes in their face and they smile. In that moment I know they are seeing the little boy I see. No tubes or scars but a beautiful boy with eyes that twinkle and a smile that can light up a room. In that moment you can forget I have a preemie baby with a long list of issues and just bask in the glow of being the mom of a cute baby.

Beyond getting cuter every day, Landon has been progressing really well developmentally. He can sit up pin straight (better than either of his parents). In fact, he prefers to sit up and if I try to allow him to lean against me or the couch he will use his core muscles to pull himself up to sitting by himself. It was crazy when he started doing it this week. That baby amazes me every day. He can even stand for short periods of time while holding onto his toy tables!

He got his first two teeth actually on the night we call my PPROMiversary. What I wouldn't give to go back a year ago that day and tell the doctor that because I choose not to terminate my little boy as she recommended, I had the pleasure of spending a night one year later up with him as my perfect baby cut his first teeth. Of course he did two at once, that Landon never does anything the easy way! His baby teeth will have some issues with the enamel because of the antibiotics and the liquid nutrition Landon received in the hospital. Thankfully, this just affects his baby teeth, but still frustrates me as one more thing he will have to deal with.

He also had his vision checked and the doctors could not believe how good his sight was given everything he went through! He has better vision than either of his parents! He also has better hearing as I found out when I was sitting with him in his hearing test and realized he could hear things I couldn't :). We even tried to go two weeks without his feeding tube. He did great eating all of his bottles, but unfortunately didn't gain any weight. We are going to keep the tube for a bit longer because he is so active, we think he is just burning more calories than he can consume himself.

We have a big week this week with an appointment with both his cardiologist and his lung doctor. He had a test to see if his pulmonary hypertension is under control. We got great news that his heart looked a lot better than the last time they tested it. All of the doctors and nurses were so impressed by how well he looked! They crowded around him and he was like a prince on his throne laughing and 'talking' to his court. It was a wonderful feeling. Most importantly, the cardiologist gave us the all clear to start weening his oxygen if his lung doctor agrees. We have that appointment on Friday and are hoping to be able to start the process. It can take 6 months or more to fully get off of oxygen, but I would love to get him off before he is more mobile!

One more important update. In celebration for the beautiful baby we were given as a miracle, we have recently decided to participate in the March of Dimes March for babies next month. I have mentioned this organization before and can't say enough positive things about them. They are the reason our little man survived in the critical first hours of his life. The research the March of Dimes does for prematurity babies lead to the medicine they gave Landon's lungs that allowed him to breathe. Other research has lead to medicine that will allow Ryan and I to have a better chance at a full term baby if we ever decide to try this crazy ride again.

We would love your support for us on this walk. You can find our family team's page here: http://marchforbabies.org/team/lionlandon. We would love anyone to join us who would like to for the walk and would definitely appreciate any donations you are willing to give. Our goal is to help one less family and one less baby have to go through what we did! Thank you!

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!

100 Breaths

Playing with Grandma

Just hanging out

Eating my fav...Applesauce

There is a store in the mall here called 'Things Remembered.' It is full of trickets and gifts that can be engraved in order to remember a special event or date. As Landon's first Christmas approaches there are so many things I want to remember about this first year (and a few I would rather forget.) However,  I have also been dwelling on things I take or took for granted. What types of things would be in my store 'Things For Granted'? I took having a normal pregnancy and healthy baby for granted. I worried about everything that could go wrong in my pregnancy rather than enjoying the albeit short time I was pregnant without complications.

I was reading the blog of another mom with a baby that has special needs and she referenced a poem called Amsterdam International. Basically it is an allegory for the journey all parents go through when they have a baby with special needs rather than the perfect pregnancy they had anticipated. It talks of preparing for a vacation to Italy. Your bags are packed for Italy, you have learned Italian, you have your whole trip planned out. Instead you are detoured to Amsterdam International. You don't know the language or the area. You had never planned to be there. Your family is anxiously awaiting news from your Italian trip and you have to tell them you are in Amsterdam.  It is weird when your whole reality shifts and the things you thought were important aren't so much anymore.

I look back on my old reality and certainly mourn that life. Having a baby who doesn't have to struggle and claw his way through life is the old reality. Not having to experience the heart break of begging your baby to push on through one more painful experience is the old reality. Taking normal milestones for healthy babies for granted is the old reality. However, our new reality is full of joys and daily miracles that parents with 'normal' babies may take for granted. Every time Landon does something new it is a celebration. That is true of other parents and babies, but it takes Landon 10 times more effort and work to accomplish these things. I told his physical therapist every time he rolls over it is a Christmas gift for me. I remember after his first stomach surgery the surgeon told us that he was most worried that a baby who was so very tiny and so very sick would have a hard time surviving much less surviving cognitively intact. Here we are 8 months later with a baby that has to work really really hard but is definitely intact, more than intact...just perfect.

In our new reality we take NOTHING for granted. We celebrate pooping (even though it is smelly and messy) because it is a miracle his poor guts work after what they went through. We celebrate crying because we couldn't hear his voice for the 76 days he was on a ventilator. Do you know what we celebrate most? Something every one of us takes for granted every day. Something most of us are taking for granted right now as you read this. We celebrate breathing. I have a ritual of watching Landon breath. I count 100 breaths (I think it is an obsessive compulsive thing). I count 100 breaths and say a prayer to God that with each breath he takes it gets a little bit easier. Each day he grows a little bit bigger. I know that one day he won't struggle to breath. I wait for the day when I can forget for one second how much hard work breathing is. I wait to take it for granted because he will be breathing like everyone else.

I apologize for my philosophical divergence. I am feeling contemplative as we get closer to the one year mark of when my water broke. Landon is doing well, though we have been having some feeding issues again. We switched him to a formula that is more hypoallergenic. It smells to high heaven but he LOVES it. Of course it is the most expensive formula on the market. What can I say, my baby has expensive tastes. He loves the formula so much that he doesn't want to eat breast milk. Perhaps this is the end to my pumping? We shall see.

We are very excited for Landon's first Christmas and I promise to post pictures of Landon with the Christmas tree soon!

Cuddling with Daddy

My new penguin hat!

My Christmas outfit