Tuesday, June 24, 2014

A Little More Closure

My little cherry picker!
Another 2.5 months have passed since I last updated but I figured tonight was a good night to get back on the horse. I actually had planned on writing an update, but as usual, I didn't get around to it. Luckily, my wonderful wife sent me some pictures we took today and she said I should update it. So here it goes...

Today actually marks one year since Hayden had his "closure" surgery. June 24, 2013 is another one of those days that will forever stick out in my mind and I will remember it like it was yesterday.

Thanks Joanne!
Over the past 21 months (since we first found out about Hayden's omphalocele), we have had some rough moments and we have had some smooth sailing. The roughest moment probably came about 36 hours after Hayden's surgery when he experienced. respiratory failure. Kelsea and I are still so grateful that God put Arun (and many other doctors and nurses) at SLCH the night of June 25th. The highs we have experienced though since that date have completely wiped out the low we went through.

Tonight's post marks the 98th update I have had to this blog. I was hoping to make it to 100, but life got in the way. I really wish I had more time to write on a weekly basis. It was always a good way for me to reflect on where our life was and what God has done for us, as well as helping me to give all the credit and glory back to God.

Hayden's first "selfie"
We have tried, but Kelsea and I know that we can't show enough gratitude for everything that everybody has done for us over the past 18+ months. The best we can do is what we have always said we would do and that is show God's love to others as you have shown to us. We have met so many wonderful people and families. Some in person, some over the internet, and some in person.... someday! We have experienced highs and we have shared sorrow in their lows. We know and have trusted that God has led us to each other for very specific reasons.

I have included a few recent pictures of Hayden as tonight's entry will be the final one that I write. I have been waiting to turn the blog in to a "book" because one of our "O" family friends (the DiFranco's from St. Louis) told us about a few sites that will turn your posts into a book, kind of like what Shutterfly can do with photos. So, in order for me to do this, our story had to have a little more closure!

He loves the slides.
Rarely does he not have a smile.

Friday, April 11, 2014

Out of the Frying Pan

First off, I can't believe it has been 3 months since I last wrote. Well, actually I can. I have no time. I wish I did because I truly enjoyed keeping everybody up to date with Hayden's progress and how we were all growing. I wish I had an extra hour once every five days that I could fulfill the first wish!

Well...here is a quick run down. Kelsea went back to work. I was afraid it would cause a lot of strain on our family as a whole trying to adjust to getting everything done in the few short hours we have after work. I was way off. I think we passed with flying colors. We don't get everything done, but we get what we need! Dinner and time with Hayden, and sometimes the animals!

Hayden is doing awesome. He will be 15 months old in another week. He loves daycare and Jen and all of his friends and even learned to say his "girlfriend's" name today! He is still a very picky eater and his favorite food is none other than....bread. Yes, bread! Toasted or untoasted. White or wheat. As long as it's bread, he doesn't care! He still lights up the room when he sees Tucker. He is a running fool and is starting to conquer the front and back yard. Although he throws his fits and walks across the room to pick something up, just to throw it down to show he's mad, he is still the happiest little boy I have ever known!

While he has done awesome and has continued to amaze us and his doctors, Kelsea and my grandma (and Tucker) have struggled with some health issues. A couple of days before my parents went back to Florida in January, we found out my grandma had cancer. She is currently receiving treatments and, as many of you know how difficult it can be, she is doing great.

Kelsea has been dealing with some back/spinal cord issues for the past year and we have gotten some different diagnoses, but we are really in the dark regarding what exactly is going on. There have been several doctor visits to different places and more to come, but so far, everybody has kind of disagreed on what is going on. Without throwing too much out there, it has really been quite a struggle these past few weeks/months with letting go and giving my worries to God.

I have always been the "fixer." Almost every night, Kelsea ends or begins her stories with, "I don't need you to fix it, I just want you to listen!" Just like I did with Hayden, I have spent countless hours trying to research and find answers. However, I am struggling because this time, they have usually ended in dead ends. And to top it off, we just found out that Tucker has his displaysia and a mild ligament tear in his opposite knee and has been "prescribed" crate/cage rest as a first non-surgical approach to try to get it to heal. this has not been a fun few nights! We got some sedatives last night, and it helped him sleep, but man did he struggle walking this morning!

I know we have our rough moments and times we stray from what we know is best, but tonight it hit me again. Kelsea and I are both so thankful for the love God shows us. Even in times of struggle, when we look back on what He has done for us, it is hard to question Him and hard to think I could come up with a better plan than He. We were laying on the bed tonight, and it was amazing watching Hayden jumping on the bed on his own, then throwing himself down on the pillow, then getting up and doing it all over again.

To think where we were a year ago and look at what he is doing now, it instantly wipes away any doubt. A year ago, Kelsea was sitting the ER at Blessing and I was rushing home to pack a few items together because Hayden (and Kelsea) were about to get another ride in the back of an ambulance at midnight again!

It was another one of those nights where God gave us strength and energy to follow his plan. A year ago, we were concerned because he was struggling to breath after his first surgery and weren't sure what the future held. Tonight, those were such distant memories and it was comforting to know that God led us here, and He will continue to lead us through it.

Thursday, January 16, 2014

The Music That We Call LIfe

I am a huge music fan. I love listening to many, MANY different genres of music. As I think back over the past few decades, there are different songs and artists that stick out and bring long lost memories out in to the light as if they happened yesterday.

I remember laying on our kitchen floor as a little boy, listening to Alabama's "There's No Way" balling my eyes out because our dog (actually our neighbor's dog...but it lived at our house part time) Fritz, had died. I thought my world had come to an end and this song, of course, made me feel better!

I remember Colin coming to my house in 7th or 8th grade and listening to the Steve Miller Band cassette. We might have been working on some project for a class, but I remember him introducing me to "The Joker!"

I remember Touch and Go as the first song on our Blue Devil Soccer "Warm Up" tape....many of you remember that...still one of the best songs out there and believe it needs to be brought back for the 2014 season! If you don't listen to any other song on here...you definitely have to listen to this one...will bring back memories for quite a few of you I am certain!

I SOMEWHAT remember pulling Jasons speakers out through the windows in our apartment in Macomb, along with the Christmas tree (in March), and Cory, Evan, Nikki, John, and I blasting Kenny Chesney on our deck selling hamburgers and hot dogs to all of the underclassmen walking back to North Quad at 2 in the morning!

And I remember the video that I found when I was lost a few years ago. The video that showed me that even though I had messed up, even though I was completely lost and had turned my back on God, He was still right there, waiting for me, trying to show me His love and that His plan was much better than anything I could ever devise. This is the song and video that gave me the courage to go to Bob with my problems and ask him to for guidance and to help me find myself and Jesus.  Don't worry, I wasn't feeling everything the girl was in the video...However, I was lost and I realized that God was a forgiving God and that He has always been trying to throw me the lifesaver to pull me out of the troubled water. This video, the first time I watched it, hit me like a truck. Performed by some teenagers in 2006 in Tennessee, is probably one of the most powerful things I have ever viewed. 

As mentioned, music has had a profound impact on my life, and I am nowhere close to a musician. Every one of these songs had a role in getting me to where I am today, but I am most thankful for the last one. It was this video that finally allowed me to see the signs around me and allow God back in to my life and prepare me for what lied ahead of me. I can't imagine how we would have ever made it through this journey this past year without God at our side. It is because of Him that we are where we are today.

As Kelsea and I approach January 18, 2014, we have been reflecting daily on where we have come in the past year and where we are heading. As we approach Hayden's birthday on Saturday, it has been hard to not become overwhelmed by the flood of emotions that we have been reliving. This has been one awesome crazy roller coaster of a ride and I am so thankful that God has been on our side, through the good times and bad. 

It is crazy to think that we have an appointment Friday in St. Louis, the day before Hayden turns one. It is his 6-month check up with Dr. Warner after his closure surgery and we will be in the hospital on the same day of the week (Hayden was born on a Friday) and at the exact same time as we were a year ago. What started out as a "normal" trip to meet Kelsea in St. Louis (who had been there for two weeks) turned in to a day that I didn't give God control and tried to shoulder the load. I was a mess! For those of you who saw our interviews on Fox, it was evident that I didn't give my worries to God in those few hours from Kelsea being wheeled to Labor and Deliver until Hayden arrived.

In the days and weeks to follow, we met some incredible people who helped us through the daily NICU life. We felt so blessed to have the nurses, doctors, and medical staff that we had as well as one of our favorite NICU "neighbors" who is truly a remarkable woman to be able to do what she did on a daily basis with her daughter. HEY CHANTA! We felt as though (and still do) we were among celebrities!

The wonderful people in our lives continued to come out of the woodwork over the next few weeks and months. God has placed so many wonderful people in our lives that did countless selfless things for us. There were family members, coworkers, best friends, and long lost friends. There were neighbors and "O" families from around the world and there were people we heard of and complete strangers. There were people we have never met, but know that God brought us together for a reason and even though circumstances have changed, we will be lifelong friends and will come together one day.  Kelsea, Hayden and I have been so blessed over the past year and we have tried to show others the love that God has shown us. 

We have tried to thank everybody for all that you have done, but we know we have not been perfect. From the prayer service at church before Kelsea left, to the fundraiser in September. The things our coworkers did and the things our best friends did have had such a profound impact on our lives. The messages on Facebook from the day Hayden was born (pretty crazy to go back and read my posts from that morning (1.18.13) as I was travelling to St. Louis for what I thought was a routine appt. for Kelsea to the Otten's bringing me a change of clothes on Saturday (Thanks Casey for digging through our dryer).

We are forever grateful for everybody mentioned and everybody not mentioned. I know that the things we have seen and the things we have experienced, although bad to us in the moment, pale in comparison to what others experience day in and day out. However, there are two nights that will stick out in my mind forever and there is a doctor, who on two different occasions, poured his heart and soul in to our son, as if it was his own son. He reminded me time after time that he was just doing his job. I know he was "just" doing his job, but watching him make that quick decision that night on the 10th floor, then waiting for Kelsea to get to the PICU, not certain if Hayden was going to make it, watching him keep Hayden alive with his hands, had such an impact on my life. He, among the many other doctors and nurses, became my hero who I am forever in debt.

There have been tears of fear and shouts of joy. We have had arguments and high fives and hugs and dirty looks. There have been comments made under our breath, and comments made out loud. There have been kisses and long embraces and fingers running through hair. There have been perplexed doctors and matter of fact doctors. There have been dad and nurse standing up to the doctors and there have been snuggles with favorite doctors, and mo-hawks, baths, and late night pictures as well as OCD cleaning by two nurses who WILL be the namesake of our future daughter! Kelsea, Hayden and I have experienced many things in the past 365 days and every day it is something different. There is one thing that has remained the same. That constant in our life. That non variable is that God loves us and even though, at times, it seems like He has forsaken us and nothing makes sense, as my blog title states, if He leads you to it, He will lead you through it.

I leave you with one last video tonight, that shows just how good God is. This was the first time he had done this and I was so excited that I was able to witness a first for him instead of somebody else telling me about something new he did!  I also ask that you keep us in your thoughts tomorrow and that Hayden's check-up with Dr. Warner goes well. We are afraid he has a hernia and will need another surgery, but are hoping God's plan doesn't include that, just yet!