Monday, September 16, 2013

Flashbulb Memory

The day JFK was assassinated. The day we landed on the moon. The 9/11 terrorist attacks. The Columbine School shootings.  I am certain that these are dates that you can probably vividly recall. You probably remember the weather, maybe what day of the week it was, and possibly even what you were wearing and definitely where you were when you heard the news. It is almost as if you had a camera and took nonstop pictures (with the flash on!) at the time of this event.  Two of those I was alive for and remember more details than I ever thought I possibly could.

365 days ago, I think I had two cameras taking non stop pictures. I can tell you what the weather was like, what I was wearing, and pretty much what happened for six days straight. When Kelsea and I first found out about Hayden's Omphalocele, we were devastated. Omphalo What tells the story of our first 48 hours. Kelsea's parents, being OB-GYNs had heard of this. My parents, never. We talked to mom first, because they were waiting to find out about the sex. I don't remember exactly what we told her, but we withheld a lot of information. I knew it would come to light, but we weren't ready yet because we didn't fully understand ourselves. The next thing, I am not so proud of. After Kelsea and I talked for awhile in the parking lot of QMG, I believe we were the last two cars there, we were in a better place and I headed down to Hannibal for the Varsity soccer game. On the way down, the weather changed, and nasty, dark clouds filled the skies. It let loose and the first half was played in a monsoon. I never should have left Kelsea that night. She called at halftime and I headed home. We comforted each other for awhile and talked to God and tried to give Him our worries. It didn't happen immediately, but we tried.

After she went to bed, I started my research. I have always said I love learning. There is a reason why I graduated with my undergrad in 5 years and with over 150 credit hours. There is a reason why I have two master's degrees and am not so certain that I am done. I couldn't help myself. Dr. Kagumba told us not to, but I also have always kind of done things my way! I looked at pictures and became even more scared. That week was the longest I have ever faced. Tuesday came and I went through the motions at school. Matt took the Freshman to Canton that night and Kelsea and I prepared to start coming up with questions to ask on our visit to the MFM Specialist on Wednesday. Wednesday morning took us over to Springfield, IL where we met with an MFM that said she had never seen an omphalocele as large as Hayden's and that after he was born, he might be transferred to Chicago or St. Louis. Well, on the way home, we made the phone call to get the request to see a specialist in St. Louis. Thursday took us back to work, then in a car for almost 6 hours to Minnesota for a funeral for one of  Kelsea's cousins, who was murdered in Wyoming the previous weekend.  We got back late Friday evening and I moved stuff in the basement so the carpet could be installed the next morning. I also has to get ready to head to Lincoln at 6 in the morning for a tournament in Lincoln, IL. After our two doctor visits and 1100 miles in 4 days, I realized, and even wrote about it in LIfe is a Highway, that God was preparing us for the future. He tested our patience, our love, and our resiliency those few days, and really showed us that He was in control and that things would be done His way. We thought is was the worst week we had ever experienced....but we were way wrong!

The next few months now seem like we were on a whirlwind trip. The days were continued with educating ourselves, trips to St. Louis, reaching out to strangers, phone calls to insurance, house preparation, mental preparation, and oh yeah, work!

As Hayden's due date drew closer, our reliance, faith, and trust in God grew stronger as did our commitment to providing the best opportunities for our son. Kelsea left for St. Louis (Best Laid Plans) with my mom, after an amazing night of prayer at Columbus Road. We could actually feel God take some of our worries off of our shoulders and put them directly on to the shoulders of those who reached out to us. Again, God showed us that we can plan and plan, and wish and want all we want, but it is still His show and we are just living in His world!

Hayden came early on January 18, 2013 and Fox 2 and Mandy Murphey were there in the delivery room to document the entire experience. However, this wasn't a complete surprise because babies with Omphaloceles tend to do this. Even though we were there for four weeks and I can remember just about every single day and every single nurse we had, the time still flew by in the NICU. February 17, 2013 and we were headed HOME!

The next few weeks were filled with ups and downs and ambulance rides and emergency room visits and short-notice surgeries, however, Hayden was progressing and growing and his Omphalocele was getting smaller!

Surgery came on June 24th, and as we reminisced with Kelsea's mom and step-dad over the weekend, this is what God had been preparing us for. I lived some things a parent never wants to experience those two weeks after his surgery. There were definitely many more lows than there were highs over the course of two weeks. However, Kelsea and I couldn't be happier that God led us to Barnes-Jewish, St. Louis Children's, and the Fetal Care Center of St. Louis. The doctors there twice saved Hayden's life and God helped guide their decision making process to ensure Hayden recovered as quickly as he could. Thinking back to some of those nights almost three months ago, I still get choked up. It brings tears to my eyes thinking about what those doctors did for us and Hayden and the fact that I feel like I am forever in debt and grateful to them. I hope some day he has the chance to cross paths with some of them. again. 

Our weight is a little over 14 pounds and even though he is not in the heavy-weight category, he is holding his own and reaching milestones left and right! Hayden is sitting up, without support, for small periods of time. His first tooth finally broke through the skin last week, and even though he isn't crawling yet, he is pushing himself up on his arms and working on pushing his knees and legs under himself. He has also become mobile...or at least when we put him in his walker! He loves the kitchen floor and can really get that thing moving across the tile when he is chasing after Tucker! He is not quite strong enough to make the trek over the carpet!

When somebody sees him for the first time, they are always amazed at how well he is doing. They always say it is due to the MANY prayers being said. I couldn't agree more and tell them that they are being heard and answered on a daily basis. We continue to feel God's loving touch on our lives and are reminded daily that he is in control. We have been so blessed. Even though we continue to do things on a daily basis that separates us from God, He continually forgives us because that is what He does!

Kathy Asbury and Beth Griffin have planned a benefit for Hayden that is quickly approaching. I have tried to stay out of it and have tried to not bring it up, but I have to mention just how wonderful people are and how God has been working in them. When they first asked us about it the day of Hayden's surgery, it was going to be a softball tournament. Well, due to some amazing people (MANY to be exact), the benefit took on a life of its own and people were jumping out of the woodwork to help plan the benefit and wrangle up some entertainment. Before we knew it, it was a full-blown K of C BBQ! Not really, but it was very humbling to see what people were wanting to do. It has since been scaled back and will be held at the Columbus Road Kidzone in a week and a half. It will be a more intimate gathering and Kelsea and I still plan to pay it forward as much as we can.

This past year has really put things in to perspective. There have been so many times when we felt like we had things so rough or that things were not going the best for us. However, we usually just had to leave Hayden's room in the hospital and we would pass 15 families/patients in 30 seconds who had it so much worse. There were patients in the PICU (where he was for 11 nights after his surgery) that will never leave. There were families in there who will never get to hear their child talk because of breathing tubes or other issues. Kelsea and I would get down on ourselves and feel sorry for ourselves at times, but we would quickly be grounded. We discussed the benefit (many nights) and what people were wanting to do for our family. We felt guilty because even though there have been many medical costs and future bills, there were still so many people who have bigger issues than we do. God has definitely showed us generosity over the past year and we have pledged to pay it forward and show others the love and generosity that He has shown us.

Before I leave you with some pictures, I want to ask for a special request. Hayden, Kelsea, and I have some special "online" friends in Washington and they have spent more time in the hospital than what any parents wants to do in a lifetime. I know it is part of God's plan, but I ask that you say a prayer today for Ryan, Carly, and Gavin Christiansen today and ask that it be God's will that Gavin be released from the hospital and be able to start eating and breathing without support. Gavin was born just shy of two months after Hayden and he has had a rough go with things. I take comfort in knowing that once this passes, they will be able to accomplish anything. However, they are also due for some quality family time at home again and away from the hospital. I have a feeling that Hayden and Gavin will get to hang out and play with each other one day in the not so distant future!

I honestly don't know when the next time a post will show up, so hopefully this one will hold you over for quite awhile. I enjoy writing and telling Hayden's story, but I would also rather spend my free time playing with him! Sorry, but he takes a little priority. Until next time, I will leave you with some pictures that may create your own "flashbulb memory."