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!

Wednesday, December 18, 2013

Are You Listening?

Last Saturday, I posted on Gavin's Facebook page that one of the hardest things I have experienced in my recent walk with Jesus is that I struggle to hear what God is telling me. They were facing difficult decisions and I found Proverbs 3: 5-6 which tells us that if we trust in Him and submit to Him, He will lay the path out for us.

Well, I think I missed His voice again. Monday afternoon, when Carly posted about Gavin's celebration of life on Thursday, Carly said Gavin would like for people to get together and just be together. I started to get a feeling that Kelsea and I were supposed to go out there. However, I kept pushing it away and coming up with every reason that we couldn't make it work. Finals week/end of semester, Hayden, possible bad weather this weekend, Tucker, money, and just about everything else I could think of. I am not sure if this was God telling me we should go and I resisted or if it was me thinking we should go and God telling me it wasn't the right time. Either way,I will probably never know, but the important part is that I am listening.

For whatever reason, Kelsea and I will not be in Washington tomorrow. However, along with thousands of others, I can promise you that our minds, spirit, prayers, and love will be at Bethany Baptist with everybody else. Kelsea posted tonight that she was saddened because Gavin and Hayden never got to meet each other. However, I reminded her that just like our lives here on Earth, that is only temporary. They might not have been able to meet according to our plans, but when God feels the time is right, they will be causing mischief in God's kingdom for eternity. Until that time draws near, I will be looking forward to us getting to hear Carly and Ryan tell Hayden all about Gavin in person!

Sunday, December 15, 2013

Really, in ALL Circumstances?

Anybody can praise God when things are going good. I did it several times over the past couple of weeks. There is evidence on my Facebook page. There is evidence on Gavin Christiansen's Support and Update Page. There is evidence in text messages to Kelsea, and phone calls to Mom and Dad and conversations with coworkers in the hallways at school.

Casting Crowns - Praise You In This Storm (Live) from casting-crowns on GodTube.

However, what about when things aren't going as planned? Well, first off it depends on whose "plan" you are referencing. Yours? Mine? A strangers? God's plan?

1 Thessalonians 5:18 says the following:
"give thanks in all circumstances; for this is God's will for you in Christ Jesus."

ALL CIRCUMSTANCES. That is a pretty strong Bible verse that really does not require any translation. It is not up for interpretation. It is what it is. God says to praise Him no matter what happens. This is where things get tough. Right now, many, and I mean MANY people not only on the West coast, but around the United States and I'm pretty certain around the globe, have heavy hearts and are grieving the loss of a little boy, whose life was way too short. Even though we are grieving, it is easy for us on the outside to say, "This day sucks, but we still need to praise God for showing us what love is and for sending this child of His to spread love hope to people around the globe."

However, we are all selfish and praising God for what He has given us in a moment like this, is not easy. In fact, it might be the hardest thing I have ever done. And as I sit here, I can't even begin to imagine what his parents are experiencing. On one hand, I am happy because I know Gavin is crawling up in Heaven, with nothing attached to him, happy that there is no beeping of the heart monitor or pulse oximeter, no annoying alarms because one of his IV's has ended and the nurse needs to come in and reset it, no suctioning the vent that was helping him breathe, no sticks in the foot for daily lab draws, and no doctors thinking they know what's best for  him! However, on the other hand, and in reality, I am heart broken because I don't want his parents to experience this pain. I have wanted them to experience everything Kelsea and I have for the past few months. I have hoped and prayed that everything we have posted on Facebook they would soon get to experience as well.

At first sight, the reality sucks. How can God calling this beautiful little boy to Heaven be a much better plan that ours? Well, it might be a long time before we realize it, but His plan IS better. Being selfish, we wanted Gavin here on Earth longer than he was. However he is now sitting next to God, spending eternity in a much better place.

We can only imagine what it will be like, but Gavin is getting to experience it now! Looking at pictures that his mom had posted over the past 9 months, sometimes I smiled, sometimes I cried but no matter what, I feel that I have been blessed that our lives crossed paths with this little fighter and his family.

God places people in each other's paths for reasons we don't understand. It might be clear someday, but today it is still a mystery. One thing I do know for certain is that God brought us together for a reason and I know one day, Ryan and I are going to drink that beer(s) that we talked about. Although right now, the ending is not what we expected or hoped for, it is not the ending either.

Just because things have changed, it doesn't mean we are going to do things differently. There is an army of people around the globe who now have a stronger relationship with God and who have improved their communication skills with Him, drawing them closer and who have reevaluated their lives and their outlook on life.Just because things have changed, it doesn't mean we are going to forget everything that has happened in the past year. This family needs us and our prayers now more than ever. The decisions they have to make, the feelings they are going to experience over the next few days, weeks, months, and even years are things most of us have never experienced, but nonetheless, they need us to continue to intercede on their behalf and continue to pray that God's will, will be done.

God's plan, not ours.

Wednesday, December 11, 2013

Prayers to Seattle

As many of you have seen, either on my Facebook posts, Kelsea's, or my dad's, we have been asking for a lot of prayers lately, and they haven't been for us. They have been for our good friends, which we met through the Mother's of Omphalocele's  Facebook page, the Christiansen's out in Washington. I have mentioned quite a few times before and have briefly told their story and asked for the occasional prayer for them.

Well, lately, I have been asking for more than the occasional prayer. I have been asking all of our friends and family for full fledged, all-out, hard core prayers for them. A week and a half ago, their 10 month old son, after spending the first 60 days in the NICU and the past 133 days in the ICU at Seattle Children's, they had a day no parent wants to experience. They were losing their son Gavin and didn't think he was going to make it. At first, Carly didn't really say how bad things were, but I told Kelsea that I had a sinking feeling things were worse than what she was letting on in her Facebook page where she updates us all about Gavin. Through the week, her posts became more grave and serious and things were not looking good. Although nobody was ready to give up on him, I think many of us thought God was ready to call Gavin home.

It was last week that the call for prayers went out and they spread like a wildfire. It was amazing, rejuvenating, and comforting to see our friends and family, complete strangers to Carly and Ryan, put them at the front of their thoughts, even if it was for just a minute during the day. Slowly, prayers started to be answered. Over the past few days, Gavin has made remarkable strides. It was so great to even see a picture of him today. I know Gavin has not looked like himself and that is one of the hardest things for a parent to see. You child hurting and not even looking like themselves. Gavin still has a long way to go and he is by no means out of the woods yet, HOWEVER, he's fighting to get there.

We don't know what God's plan is, but I am asking each and every single one of you to please say a prayer, or continue to say a prayer for Carly, Ryan, their son Gavin, the doctors, nurses, and everybody else who has a hand on this child.  Ryan is trying to get away from work with FMLA and Carly has been in Grad school. They are an hour away from home, family, dogs and are living the hospital life. Please also pray that it be a part of God's plan that he help them financially so they can be together as a family and not worry about financial matters.

Although they have had some positive steps forward, the first in MANY days, they need more. I know they are struggling and they are worn. Even reading the positive posts, the song "Worn" comes to mind.

I am praying that God shows them a sign. Greater signs than what He has already shown them this week and let them know that God's plan is great and to continue to trust in Him.

On June 28th, 2013, I was worn. However, in my darkest hour. At my weakest point. God took care of things and showed me a glimpse of His plan. Please take a minute and read my post from that day. June 28th - Big Brother and God

I am also finishing today with by including Carly's latest posts from today. I haven't asked her for permission to repost these, but right now, I don't care if she tells me no! The following that Gavin is getting, the prayers and love that is being sent out to him, the connections and conversations people are having with our Heavenly Father are far too important. Now, as Bob brought up the other night, hopefully Gavin won't look me up in a few years with some HIPAA lawsuit!

Facebook Post from 12/10
Gavin has had a great 24 hours. He tolerated all of the medication and oscillator weans with flying colors today. Some medications were totally stopped and the labs that measure how he is doing with the oscillator weans have been great. The plan is to keep weaning as he tolerates. It would be so great to get him off of the oscillator because we will be able to get him off of the medication that keeps him paralyzed. All in all it was a 24 hour period that is worth celebrating. The medical staff has slowly started smiling more and I even saw Ryan get a high five from one of our favorite ICU doctors. We are amazed at the miracle we have been witnessing. We pray the progress continues!

Facebook post from earlier today - 12/11

This photo is Gavin's IV pole! The significance of the photo is that some of them are not lit up! Sunday they didn't have enough access for all of the meds he was on. This is visible progress. We just finished up morning rounds and everybody continues to be happy. We are making two more vent weans today as long as he tolerates them. Gavin also made the most urine he has made since this all started last week, which is so encouraging. He continues to just look so much better. His skin is pink and his pulses are better than they were last week. Also, last week his omphalocele was huge, swollen, and angry looking. Today it is smaller and less angry looking. There is a hypothesis starting that the C Diff (bacteria that causes digestive illness) Gavin tested positive for might have ca...used this. If this is true, there is even more of a miracle going on because Saturday morning I woke up and just felt like Gavin needed to go on a specific antibiotic, which just happens to treat C Diff. We had a phenomenal attending on Saturday and she listened to my intuition and put him on it. Unfortunately he didn't get a dose until late Saturday, but either way he had been getting better and Dr. Brogan said he would hedge his bets on the antibiotic I felt he needed. Everybody agrees he is getting better. Monday will be a huge milestone of the progress is still going on. Ryan and I are just blown away by this kid. He is tough as nails.

 Even though this post isn't about us, here is a picture from a few weeks ago....only because it has been so long since I have given an update on Hayden. I promise one will make it before Christmas (or New Year's Eve)!

Thursday, October 31, 2013


I know it's been quite some time since I've updated and you're gonna have to wait even longer for an update on Hayden.  Tonight, it's not about us. I have a request, if not a demand. Kelsea and I are asking that you pray for Gavin Christiansen. We are asking that you pray for good health for him, strength for his parents, and wisdom for his doctors. 

You may recall us mentioning him before. He was born roughly a month after Hayden, with the same condition. After getting to go home after 2 months, he followed in the footsteps of Hayden and gave his parents several scares with return trips to the hospital. 

He has been back in the hospital since the middle of July. His parents are stretched so thin as Carly is in grad school and her husband Ryan has started a new job this past year. They live an hour away from Seattle Children's, so are rarely home to take care of the house, yard, dogs, etc, not to mention have any time for them. For those of you that don't know, living in the hospital sucks and outs such a strain on you. 

All of you did such an amazing job of supporting Kelsea, Hayden, and myself, I am asking that if there is any spare energy, you turn it towards this family. 

I know there are MANY families out there who are in similar situations and need support and prayers, however this family is close to our hearts and has become a part of my family's daily life. And even though we haven't met them in person, YET, the Christiansen's have become dear friends of ours.

Carly doesn't post many blog updates (there is a Facebook page that is updated fairly frequentky), but here is her blog address if you want to get to know them. http://obabychristiansen.blogspot.com/2013/10/october-17-then-and-now.html?m=1

It broke my heart just now to read that he had to be out back on the vent due to respiratory difficulties. Please, make it a mission to help this family out however you can. We had an army supporting us and they could use the same.