Keeping Landon Safe

We interrupt our regularly scheduled blog for an important announcement:

Dear Friends and Family,

We are writing regarding a very important matter, Landon's health and safety. For those of you who plan to visit us over the next few months, please take a few minutes to read this letter.

We would like to share an important topic recently discussed with us by Landon's doctors. If you are not aware of RSV (Respiratory Syncytial Virus) you are of the majority. Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are: being born premature, having a lung condition, or having a heart condition. Landon has all three.

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Landon safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands and up to twelve hours on objects. If Landon contracts RSV he will likely be hospitalized since he does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.

That being said, we'll be asking our visitors to follow a few guidelines to help prevent Landon from contracting RSV and other illnesses.

1. Please be prepared to take off your shoes and wash your hands upon entering our home.

2. Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.

3. If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child.

4. If at all possible, get a flu shot at the start of the season.

Please do not let these precautions frighten you or stop you from making contact with our family. They are simply precautions that every loving parent with a fighter like ours must take during this season.

Unfortunately, this also means that there will be events during RSV season that we will be unable to attend with Landon. If you know that either young children will be attending, or that the number of people attending is too large to screen, please advise us of this. Please do not be offended if we have to turn down your invitation, as we are simply trying to keep our baby from going back to the hospital.

We have been advised that Landon's lungs will be fragile until he is 2 years old. We hope you understand and we appreciate your help in keeping Landon RSV-free until then.

Now that we have the serious stuff out of the way, please enjoy pics of Landon in a ridiculously cute hat!

Feels Like Home to Me

First bath! (I am sure he will kill me for posting this when he is older. I cannot wait to show this pic to his first girlfriend!)

Add caption

Landon watching the Kardashians...I know bad parenting :)

Loves his Auntie Em!

Found his hands!

When Ryan and I got married 6 years ago we danced our first dance to the song "Feels Like Home" by Chantal Kreviazuk. I remember dancing and being amazed that I was a wife. (I also remember wondering why I choose such a long song when I wearing 4 inch heels.) I was watching a movie this week and that song played on the movie. The lyrics went straight to my heart as I held my little guy.

"Somethin' in your eyes, makes me wanna lose myself
Makes me wanna lose myself, in your arms
There's somethin' in your voice, makes my heart beat fast
Hope this feeling lasts, the rest of my life

If you knew how lonely my life has been
And how long I've been so alone
And if you knew how I wanted someone to come along
And change my life the way you've done

A window breaks, down a long, dark street
And a siren wails in the night
But I'm alright, 'cause I have you here with me
And I can almost see, through the dark there is light

Well, if you knew how much this moment means to me
And how long I've waited for your touch
And if you knew how happy you are making me
I never thought that I'd love anyone so much

It feels like home to me, it feels like home to me
It feels like I'm all the way the back where I come from
It feels like home to me, it feels like home to me
It feels like I'm all the way back where I belong
It feels like I'm all the way back where I belong"

If only I had a glimpse of what that song would mean to me 6 years ago dancing in my new husband's arms, the feeling I have being home with Landon was unfathomable until I actually felt it. 

He continues to thrive at home. He really is a different baby in 2 short weeks and the hard memories of the NICU are fading (something I never believed would happen). Of course the memories of all the wonderful people who were introduced into our lives during this experience will never fade. I tell Landon every day how he has touched the lives of people all over the world. He has made more of an impact on the world in his short life than some people do in a lifetime.

I have to remind myself of Landon's impact often as being home has also brought back some of the feelings about getting the short end of the stick. It is a miracle we got to bring him home, but it reminds me that he should have been able to come home as a full term baby without oxygen or feeding tubes or medicines. It makes me sad for everything he has had to endure and continues to endure. Then I remember that his journey will save the lives of other babies. Doctors and nurses and surgeons who encounter other babies like Landon will remember him and will take his experiences to help them. My own doctors who thought that he wouldn't make it once my water broke will now have a success story to tell the next scared mother to be facing a choice to deliver her baby or fight longer for their life. 

I am so grateful for the beautiful, precious baby, but man is he a lot of work! Being the crazy gal that I am, I created a charting system for Ryan and I to keep track of feedings, meds, and even dirty diapers! Eating is still a battle as Landon continues to work on not fighting the feeling of something in his mouth. He is still growing well and is over 10 lbs! He laughs and keeps his hands in his mouth most of the time. We are excited about that, but less excited by his new-found ability to take off his oxygen and take out his feeding tube. I told him if he would take his whole bottle he wouldn't need that rotten feeding tube! He will soon be getting therapy to work on his feeding and I really hope will we take out that feeding tube for good by the end of the year.

He got to take his first bath in a bathtub and LOVED it! He had to get over the new feeling of being submerged but splashed away and cried when I took him out. He also loves watching the Tigers and the Kardashians (I know bad parenting, but only let him watch when I am desperate). He enjoys the Duck Song as well thanks to his friend Sophie. (Youtube the Duck Song and you will see).

He sleeps through the night, but makes a lot of groaning noises. This keeps me awake because I am always afraid he is waking up or choking or not breathing. We call him the Gremlin because he makes gremlin noises at night and when he is eating. Grem for short :). He is the cutest lil gremlin there ever was!

The Long Road Home

After 180 days in the NICU, countless sleepless nights, 3 surgeries, 2 broken bones, 76 days on a ventilator and many many answered prayers our little lion man CAME HOME on last Friday. We are still adjusting to being the parent, doctor, nurse, and pharmacist all rolled into one, so I wasn't able to get on as soon as I would like to post the indescribably happy news. We are pretty tired and a wee bit shell shocked, but Landon is just thriving! He smiles and coos at us, grabs for toys, and is starting to hold his own pacifier (a day we have been waiting for almost as long as homecoming day :). We were told he would progress by leaps and bounds when he got home, but I didn't expect to see the results in so few days. That is just me not learning my lesson to never be surprised by what Landon can accomplish.

Although we are ecstatic to be home, it felt like we were leaving our family in the NICU. For the past six months the staff in the NICU have been our friends and family. We know there aren't enough words to express the gratitude deserved for what they did. We saw most of the people who played a part in getting Landon home in the last few days in the NICU. Several shared with us that there were a few times where they weren't sure how a baby could survive as sick as Landon had been at times. I like to think everyone in that NICU felt a sense of purpose on Friday as we wheeled out. 

Our very special thanks went to Landon's primary nurses: Kimmy (his other mother), Pam, Barb, Anne, Theresa, and Barb K. These women saved our son's life on countless occasions. No matter how sick he was they fought for him and acted to do what was in his best interest. This baby is alive today because of them and I know we will pray for them every day for the rest of our lives hoping that God gives them the graces they deserve for taking care of little man. 

We were also blessed with extraordinary doctors, respiratory therapists, a physical therapist, pharmacist, social workers, lactation consultants and nutritionist.  These people put up with our craziness, comforted us when we were overwhelmed, and allowed us to be a very real part of Landon's care plan. His attending docs: Dr. D, Dr C., Dr. A, Dr. B., Dr. Ana. Dr. Rich, Dr. Keith, Dr. Megan, and Dr. G. His neonatology fellows: Shawna, Stephen, Karen, Scott, Stephanie, Jenny, and Allison were truly sent by God to help us through this journey. They believed in Landon at times where our hope would wane and helped us to continue the very rewarding fight. More importantly, they also always had time to come and talk to us even if it meant teasing from us (talking to you Stephen) His interns and residents: Megan, Coughie, Brendan, Nancy, Sarah, James, Yu, Sarah, Tony, Courtney and Brian (and many more that my sleep deprived brain cannot recall) were the first line of defense in his case and were so amazing at making sure we knew what was going on with baby.

Lastly, we had all of you reading this blog, our friends and family and their friends and family and other preemie moms (especially Christyn, Ryan, and Baby Peyton!) who know exactly what we were going through. People often tell us how hard this must have been and it certainly was, but I have to admit we are soooo lucky. We had family to support us, were located within miles of one of the best (if not the best) NICUs in the country, had stable jobs and phenomenal insurance to support us. It was an easy fight with all of these resources. It is days like these where you actually get to see God's plan by seeing my little guy at home that we prayed for the last 6 months. Thank you again for all of your support. I look forward to posting more about Landon's progress in the coming weeks!