It's Official. The Next Chapter is Near

I was definitely not the best player on the team. I was definitely not the fastest, most talented, strongest, or smartest player on the team. However, every single practice and every single game I played for the QHS Blue Devil soccer team I poured my heart and effort into every minute. Many kids in Quincy grow up idolizing QHS Blue Devil basketball players and play out the waning seconds of a game on the Blue Devil court, in their back yard. I would probably be lying if I said that Casey and I never did that in my back yard or on his driveway (which he usually beat me....but only because he broke some of my ribs and continued to re-break them every time we would play), but it was the soccer field we dreamt about daily. This early love of the game carried on well after my "career" ended. I was lucky enough to become a coach in this program after I returned to Quincy after a two-year "vacation" in Florida.

For the past seven years, this program has been such a huge part of my life. The guys that I coach with are family (literally when you count Cousin Eddie a.k.a. Eric!). They have become some of the best and closest friends a person could have. As I have mentioned before on Facebook and on posts, people on the outside would think we hate each other the way we joke around and give each other a hard time. However, it isn't everywhere that you find a group of guys who coach together have a tighter bond off the field that extends to families. It is rare that a couple of weeks will pass and at least some parts of the "group" don't get together and go destroy some food at a local establishment. Another crazy part is that all of the coaches over the past 7 years, all of the assistants and JV and Freshman coaches have all played for Matt at some point in the past. Eric, Travis, Ron, and myself and other who have helped out all played for Matt...some of us a lot longer ago than others! Just last night, several of us were texting back and forth at 10:30 while all watching the USA game in the blizzard in Colorado.

Even more important is how thankful I am for God's plans that we never see or fully understand. I am so thankful that God instilled this love of soccer in me so that I would eventually cross paths with Bob Cowman. If it wasn't for this intersection, I would not be where I am today. God knew all along that he was going to use this person, and our mutual love of the game, to bring me back to Him. For this, I am forever grateful.

I knew it was coming, but I wasn't ready. I was ready, but I wasn't ready to not be a part of this. However, it finally became official at the board meeting a few nights ago. I know Hayden will need surgery sometime in the future and I was worried that it would come in the fall next year, or that he would have dr. appointments that would take me away from the boys. Last fall, Matt, Eric, and Travis all stepped up and helped me out a ton when I had to miss some days during the season, but I didn't want to do that to them again. Not that I am the best choice for that level, but they need consistency and they don't need to worry about that level. I went back and forth about resigning this position for the past few months and Kelsea supported me whatever I chose, but I finally gave into what my heart was really telling me! When I leave in the morning for work, I am jealous that Kelsea gets to stay home with Hayden. However, the end of the day is so exciting because I know I get to see and hold him shortly. That feeling far outweighs and satisfaction I felt when I was coaching and being a part of the Blue Devil Soccer tradition.

I already miss it when I get the e-mails about Burlington and fundraisers and I know it will be hard to keep me away next fall. I have a feeling Hayden, and myself will be hanging around fairly often, trying to help out if I can. It's a chapter in my book that was a great one and I am sad to see it end. However, like a good book, I know the next chapter, and many more to come will be even better than the ones before it.

The following pictures are only a portion of what I have and they all are connected to QHS Soccer and my time with it in some form.

Lucky One

I feel so lucky to have the people in our lives that we have crossed paths with over the past several months. Some people see us and feel sorry for what we/Hayden has had,and will have to endure. I feel quite lucky that he has had the most amazing and caring people looking out for his best interests and that so many people have turned to God to have a discussion with Him regarding this little boy!

After having some issues with his hernia last night and starting down the path we did last week, he has had a great 24 hours, is eating well again, and ....best of all: is sound asleep!

His first bath Sunday night went off without a hitch. I can't say he loved it, but he didn't hate it either!!!

Rubber Duck

Hayden had a good day yesterday. Kelsea started nursing him at 10 AM and nursed him two more times throughout the day. He kept all of his food down and had zero spit ups or vomits. He started to pass the barium through his system and it looked like modeling clay when it came out.

All test results came back negative in terms of him having any type of infection and they still couldn't find any specific reason that was causing him to not keep his feeds down. His hernia is reducible and is still not a concern to the surgeons. They said as long as it continues to be reducible and does not get stuck that they would wait to do surgery until he gets older, probably at the same time they do his closure surgery. The surgeons don't like putting a baby this young under general anesthesia.

We are very grateful for a good family friend, Dawn, who was able to help us out with a hotel room last night. I made it to the hospital by 6 o'clock again this morning and Kelsea is hopefully getting some sleep right now. She needs it after we were woken up at midnight by kids running and jumping off the bed in the room above us. The front desk solution was that I could get some earplugs that would help us sleep through the night or we could switch rooms because they had just checked in and have three young kids. You can imagine how well that went over with me at midnight when she said to give them a half hour and if they haven't calmed down then to let her know again. The problem was solved once I put my shoes on and went down to the front desk. I was also very grateful that the front desk called me at 12:45 AM to make sure that we could not hear anymore noise!!!! I almost forgot, but one other solution was that WE could switch rooms at 12 AM as well!

The neonatologist just came by and agrees with the nurse that she would like to get us home today. I am waiting on surgery to do their rounds and see what they say. Hayden has taken down all of his bottles and nursed quite a bit. He just sucked down 100 mL of breast milk for dad.

I'm pretty certain they will kick us out today and we will be home in a few hours. Luckily the discharge process this time around will be a lot faster and hopefully we can get out of here before noon.

Dr. Warner came by yesterday and was thoroughly impressed with Hayden's progress. He was pleased at how his omphalocele looks and also said that the skin is growing wonderfully. He then told us that we could finally give Hayden a full bath and we could get him completely wet. That made Kelsea and I very excited to try something new. Guess its time to break out the rubber duck!


Update:
Surgery made it by and they are good with him getting out of here and said they would leave it up to the NICU team. I'm not a brain surgeon, but I think when neither side thinks he needs to stay, and you add two and two, that means we get to get out of here....again!

Changes

When you take a step back from your hectic life and think about just how quickly things can change, it is quite scary. There are so many things that we take for granted and it is so easy to forget just how good we have it. There is always somebody else who has it worse. However, right now, I feel like I am that "somebody" else and it sucks!

When I look back over notes, saved websites, Facebook posts, blog entries and see just how many things could have gone "wrong" with Hayden's entrance in to this world, it is hard not to count my blessings and thank God for the love that He showered Kelsea and I with. It is very obvious that in a pregnancy surrounded by as many possible complications as Hayden could have had, Kelsea and I have been extremely fortunate. We have such a happy and healthy baby. 48 hours ago I was sitting on the living room floor typing how well he was doing while he was sound asleep in his bouncer.

It is amazing what can happen in 24 hours. Tonight I am typing this post from a chair in the NICU at Children's in St. Louis. As I said before, the past 24 hours have sucked! There is no better way to put it. Unfortunately, I think Hayden drew the short end of the stick.

Although he didn't sleep a ton yesterday during the day, my parents said he did a pretty good job and was fairly happy. When I got home from school around 4:30, he was very comfortable and happy to be in my arms. We changed the dressing and compression and Kelsea started feeding him at 6:00. Everything was good and normal for the first 14 minutes and 59 seconds. However, at 6:15 on the dot, Hayden starting screaming bloody murder! He couldn't be consoled. Kelsea was able to get him to finish his close to 85 ml, however he wasn't happy. He cried and screamed and writhed like he was in pain for over an hour. Since this is completely atypical of the boy who is normally a little fussy, but never unhappy or in pain, it worried Kelsea and I. Around 7 I took off his compression wrap because I thought maybe I got it too tight. About 30 minutes later, we redid the kirlex wrap (gauze) because I thought maybe I had that too tight. None of this seemed to help. Kelsea texted Kathy Asbury (his family doctor) and she came right over. We feel blessed that God placed Kathy in our lives to take care of Hayden. She could tell something was up, but we couldn't pinpoint it.

Kathy was able to get Hayden to calm down and she said she would put a call in to his St. Louis doctors to see what their thoughts were. Kelsea tried to go to sleep and it all continued to go downhill from there. Hayden spit up/vomited most of his milk and then out came the stomach bile. He couldn't sleep and continued to scream and act like he was in pain. I was able to get him to calm down for about 10 minutes, but every time he would continue the cycle of spitting and screaming. The spits/vomits progressively got worse through the night and in to the morning.

I woke up a 4:45 this morning (actually it was Kelsea waking me up to tell me she was returning to bed!) and he started screaming! As I lifted him out of his crib, we had projectile green stomach bile all over the place. I hollered for Kelsea to help and we got him cleaned up. Kelsea texted Kathy back to update her and I had an idea today was going to involve a visit to the ER. I just didn't expect it to be the one so far away! I figured I should go ahead and get a sub, so I ran in to school at 6:15 this morning and got my sub plans put together. In the mean time, Hayden proceeded to get sick again and threw up more milk. We didn't know what to do in terms of him throwing up and continuing to feed him. On one hand, we knew we shouldn't continue to put breast milk in to a stomach that has, for the past 12 hours, set new land speed records for projectile vomit, but we didn't want to starve him either!

I got home around 7:15 and called for backup. Mom and dad came over shortly after and we got cleaned up and packed for St. Louis. Kathy suggested we go ahead and forgo local ER and take him to where the doctors know him. She contacted the ER and his surgical team and let them know we would be enroute. I told Kelsea I had a feeling we might be there for awhile and she needed to pack an overnight bag. Boy are we glad we did that. We finally arrived at Children's around 10:45. Hayden slept pretty much the entire time and we learned our lessons from over night and didn't feed him at 10 o'clock! by 11:45 we were back in a room in the ER and the doctors and nurses started their work. Of course, he was dehydrated and they couldn't get an IV in. The doctor told us the other option we had was called an IO line which can be used in serious cases or life-threatening times. Well, guess what.....it must have been more serious than we realized because they used a little cordless drill to drill a needle into his shin bone and put the IV directly into the bone. Crazy! The ER dr. also noticed it looked like he had what's called an inguinal hernia. He was able to get it pushed back up, but the intestines later dropped back down. Even though possibly connected to the spitting up, this is a secondary concern at the moment.

The biggest concern is if their is a blockage in his GI tract. We were able to spend a fun couple of hours in radiology with a doctor who was absolutely crazy and fun! They ran barium through his system and did serial xrays to see if they could find anything out. These will continue through the night. Until then, we are back in the NICU. This time we are in the private room side. It is like a whole different world. I wouldn't say it's better than on the other side, it is just different. Babies who have gone home normally aren't readmitted to the NICU. However, one of Hayden's doctors saw my post on Facebook that we were in the ER and poked her head in. She said she wanted to have Hayden back on her team and would try to get him back in. Well, after 8 hours in the ER, he made his return trip and here we are now!

He hasn't eaten since 6 this morning and he slept for several hours in the ER and in the NICU once he returned. We got a hotel room in the Parkway, which is attached to the hospital and Kelsea is back in the room sleeping. I am by the boy's side and he is hungry and rooting around, but he is calm. That is pretty darn good considering twenty minutes ago while kicking his legs, he ripped out the needle, which was screwed into his bone! We are hoping to begin feeds in the morning and I have already started my list of questions. This time though, on the Parkway Hotel notepad that was left on the dresser!

I wrote earlier about how I feel I am that "somebody else" right now and everything else sucks. It was a rough day and being readmitted to the NICU was definitely not on my list of things I wanted Hayden to accomplish in 2013. However, all things considered, we are pretty darn lucky. We have such a strong little boy. This is not where we wanted to be right now, but it was where God put us. Do we have to like it. I don't think so. Can we change it?? Not really. The best thing we can do is to take a step back and take a deep breath. We have to remember that this is all part of God's plan that involves every little player involved and that we are hear for a reason. I hate to leave him, as I so vividly remember typing four weeks ago, but I need my rest. After all, I don't want to be late for my 6:00 a.m. appointment with the doctors doing rounds! We poked our head in to our old room tonight and saw a few of our favorites and of course, the one who stuck her neck on the line for Hayden (won't mention any names) would give me a hard time if she didn't see me walking by at six in the morning!

We aren't happy that we are here, but it is not what we want. We aren't happy that we are here, but we are happy Hayden is where he is.

Time

I feel like I'm back in the swing of things at school. It has been a week and all is good! Well, at school at least. I miss Hayden and Kelsea when I'm gone. I was very fortunate to be able to spend almost 7 weeks with the two of them! Even though he is in great hands at home, I'm jealous knowing Kelsea gets to spend the whole day with Hayden!

Nights are going as expected! He doesn't really let me get much school work done at night from 8-10. I'm still trying to get kids caught up before the quarter ends Friday. Many of their grades were not where they should have been, so it's been a long week trying to get kids to turn in missing work, finish tests, and complete projects. It makes my life miserable trying to get this done before grades are due next week, but the kids need it.

With that being said, I'm sitting on the floor right now, enjoying some time with my baby who's sitting in his bouncer sucking on a pacifier while my other baby is trying to get some sleep. She better be at least....I have found her on Facebook and reading when she should be sleeping!

The boy is growing. I'm pretty certain he is over 8 lbs, but we don't have a "dr office" measurement! Just our own personal baby scale! He is eating, farting, burping, spitting, crying, and making the cutest noises while he sleeps! Pretty normal stuff! His tummy time is going great on his modified "tummy mat!" He favors turning his head to his right, but he was going back and forth tonight was getting some good height and "hang time" lifting his head!

I would also like to welcome Gavin Christiansen in to this world. He was born yesterday morning to Carly and Ryan. Carly and Kelsea have become "virtual" friends over the past few months as both of our families have travelled down this path of life with an "O" baby. You can read about her journey here:O Baby Christiansen. What an awesome family. Looking at her pictures and posts really kind of makes me miss our life before Hayden was born. I know that sounds wrong and let me explain. I love him being here, and wouldn't trade a single thing, nor have I ever asked for that. However, the last 4 months of 2012 had such an impact on my life, I miss it at times. Even though there were many unknowns, it was such a wonderful feeling spending so much time learning about Hayden and his condition. BUT.....it doesn't come close to sitting here and watching him tonight just passing the time!

We are also 3 page views away from hitting 22,000 over the past 6 months....you might not see it or feel it, but He continues to use Hayden to reach out to many, many people!

I Got My Boots Tied Tight

The day has finally arrived. I knew it was coming, and I was anything but looking forward to this.... I am heading back to work tomorrow! It has been just shy of 7 weeks and I am kind of nervous. We have gotten in to a routine and I am not looking forward to breaking that routine. I'm also a little nervouse because I know I will struggle with some students' names!

Kelsea and I are so grateful that our work has allowed us the time off that we have. Even down in the NICU for 30 days, we felt so blessed to be able to spend every possible second with Hayden. The doctors and nurses were always amazed at the time we were there, but we were very lucky to be able to do that. I told Kelsea that I think she needs to go back to work and I will stay home instead of her! She didn't buy it. I am looking forward to seeing my students and coworkers. I snuck in for a little bit Friday afternoon to talk with my sub and it spread like a wildfire that I was there. Kids were coming in to the class non stop during his planning and we didn't get anything accomplished. They were all exctied. It was also so neat because kids I don't even know where stopping in and saying hi and asking how my baby is doing. I am not sure what exactly they did, but I know two former students (two of my favorite from last year) spearheaded some campaign to raise funds for Hayden's medical expenses. I don't know what it entailed, but I do know they had assemblies at QJHS (I think maybe QHS as well) and showed the Fox 2 report to all of the students. Again, I have no clue what they are up to, but these are two pretty special people.

I can't even begin to imagine what tomorrow will look like. Luckily, it is ISAT week and classes for Freshman are only 30 minutes long. I have a feeling those thirty minutes will be spent answering questions and zero work will get accomplished. That is ok because I know my sub(s) did a wonderful job and the kids were in good hands. The year is winding down and I think we are only a week away from the end of 3rd quarter.

Hayden has a dr. appt tomorrow and I am bummed out a little bit because this will be only the second appt (I think) I have missed this entire time...including before he was born. I am so anxious to find out what he weighs. He has been doing great feeding-wise. With the exception of a few small spit ups here and there, he seems to be doing what is asked of him. According to his home health nurse who came yesterday, he is about an ounce and a half from 8 pounds. I'm praying he hits that mark tomorrow!

His omphalocele is still doing great. The thing is tiny and all but a few small pieces of the nasty looking green/yellow scab stuff (not really sure what it is/was) are still attached. Skin is completely covering his organs. It is still very new skin and pink and raw, but it is growing! There is only a tiny bit left of his umbilical cord stump. Dr. Asbury took off most of it last week which helped a ton. However, there was still a little tiny piece left attached to the base of his skin and we're certain there is skin growing underneath it, but she wanted to continue to let that fall off. Thank goodness she did what she did. You never want to say your child stinks, but Hayden did! It was making me sick to my stomach. I was literally within an eyelash last Wednesday of losing my lunch! I love him, but it was nasty!

I catch myself continually walking into his room or peaking my head in. At first, it was more of a concern and wanting to make sure he was still breathing and moving when he was quiet. However, now it has become more of getting my "fix." I am still so amazed when I see him sleeping in his crib. I continuously thank God for fulfilling His promises and delivering this beautiful child to us. I know this is a feeling most parent's have, but it is just a wondeful feeling. To look in to his room, and see him sound asleep, his arm sticking straight out, making his little grunting noises, his Omphalocele moving back and forth as he breathes. I could just stand there, leaning on the side of his crib, and stare all night long. Pastor Bob always told me things would change once I had kids. Boy was he ever right. It was like somebody flipped a switch. All things that were important before, seem so far in the distance. Seeing what God has done for us and what He has done for Hayden can change a person in an instant. I was reading a blog this afternoon that was written by a mom who is just a few weeks into her and her husband's journey of being pregnant with a child with an Omphalocele. It was almost scary reading a couple of her posts because every word she had written, it took me right back to a few short months ago. I was able to relive every moment that they had. To think of all of the issues that we faced, that we were afraid of, that Hayden could have had to deal with, and God gave us this perfect little angel...... It made me pray even harder and longer for this family, and others who are close to meeting there precious little baby that they would have the strength to continue this journey and that God would deliver to them a healthy, beautiful, happy baby!

Mom and Dad are flying back up tomorrow. They are glad the snow has stopped flying (well, sort of....wind still blowing it all over the place) and that the temps are warming up this weekend. Not sure how long they will be here, but I know they are looking forward to seeing him. Kelsea's dad was also able to make it down to Quincy on Sunday. It was very nice to see him and we were so happy that he was able to meet and hold Hayden. Hayden has now officially met all of his grandparents! Still working on all of the great-grandparents, but we are moving down the list. Still can't take him to church. We are going to wait and see what the surgeon says on our appointment on the 29th, but I am looking forward to getting back there. We have missed that part of our life and want to let everyone know how their prayers have helped us.

It is also time to go get the boy ready for diaper change and feed then off to bed. I am "off" the rest of the night and will hopefully be able to sleep until 5 (next alarm) as the wife pulls the 2 a.m. duty!

Coffee, News, Snow, and a Boy!

What a beautiful morning. I used to think that things couldn't get much better than drinking a cup of coffee, listening to the morning news, and watching the snow fall outside our front window. I missed the mark on this one! Take those first few things, but now add a precious little boy laying in your arms, sucking down another bottle of mom's milk and I was completely wrong! I love snow and cold weather. I think I could live in Alaska year round! I'm not sure how I'd do with the long periods of darkness and long periods of light, but I think I would be just ok.

Kelsea and I have been getting our schedule and routine down, if there really is such a thing as routine with a newborn! Today marks six weeks that Hayden has been on the "outside" with us and things are going wonderful. God is working overtime with this little boy and it continues to amaze Kelsea and I just how lucky we are to have both of them in our lives. It has been about several days since Hayden has struggled keeping his milk down. I think it was Sunday and Monday where he had a rough couple of days. He was up at night, spitting up, not just a little, but quite a bit of his milk he had taken in, and seemed to be in pain several times. However, we altered teh way we approached his feeds and tried several different things. We don't know what it was, but they seemed to have work. He has had an excellent week and is putting on weight. We also started him on an antacid because many times GERD is associated with babies who have an Omphalocele. This has seemed to help as well. He had an antacid put in to his TPN (Total Parenteral Nutrition) IV when he was still in the NICU, but hadn't had this for quite some time. He has had his awake time during the day and sleep time at night....which is good for both mom and dad!

Tucker is adjusting. Not sure how well, but he is adjusting. He definitely likes being around Hayden (or so it seems), but he is also jealous at times. He follows me around the house wherever I go. Some times, when I am on the floor with Hayden, Tucker will bring a toy and come right up next to me and start pushing on me, sometimes even walking and laying down between Hayden and I! We have made a concerted effort to make sure we haven't forgotten about him. Tucker has had some great times this past week playing in the snow outside. We have walked through the woods, around the neighborhood, and chased squirrels in the back yard. He also got to go to the dog park the past two days, although yesterday, he didn't play so well. There was a male rottweiler (who he has played with before) and a female. Tucker was getting jealous and wouldn't stop barking. He kept trying to play and join in the wrestling....but he was not playing nice. We ended up leaving because he wouldn't stop barking and I didn't want to be "that guy!"

Phil Carlson, from the Herald Whig stopped by on Wednesday to do another short interview so he can create an online presentation to go with the 800+ photos he has taken! He and Maggie have done a wondeful job of not being too intrusive and making us feel comfortable around him. I believe it is going to run in next Sunday's Herald Whig, the 10th.

Hayden's doctor appointment went well on Wednesday also. He was up to 7 lbs, 6 oz. Dr. Asbury said she would like to see him gain 15-20 grams per day. Hayden gained, on average, 28 oz per day! We are still monitoring how much he takes every feed because it is such an important issue for him and Kelsea is also able to finally start introducing nursing to Hayden again. We are doing it slowly and starting with one feed per day, but we are making progress. Hayden's Omphalocele is doing AWESOME! There is new skin growing all over it. Skin, although not very thick, is completely covered the organs. It is also getting so much smaller. I am not sure if that means the organs are slowly going back inside his abdomen, but it is remarkable. We used to need 2-5x9" sheets of Xeroform (the petroleum soaked gauze) to cover his "O" before adding the compression. However, we basically need only one and a tiny little strip. We could probably get away with one, but we want to make certain we have mor than plenty to cover the skin and keep it moist.

On a gross note, Hayden stinks! Dr. Asbury told us the smell is coming from his umblical cord "stump." Since we have been wrapping with and keeping it moist, it hasn't fallen off yet. All of the "scab" looking green stuff is slowly coming off and that will soon as well. However, you can imagine. It is basically dead skin. Not a pleasant odor! We didn't want to pull it off because we didn't want to mess with his skin growth. However, we spoke with surgery at Children's yesterday and they gave us permission to go ahead! We will get that taken care of today and get the boy smelling so fresh and so clean!

As we were talking with the Herald Whig reporter this past week, we did a lot of reflecting on the early days. He asked us a lot about our faith, and the people involved along this journey. It made me reflect more about God's plan and how we have no idea what that plan is or how we really play a part. At first, that is something that is hard to comprehend. How do I know I am doing what I am supposed to if I have no clue what it is. Wel, thankfully, He does know.

Jeremiah 29:11 states "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

 

It is ok to not know. If we put our trust in the Lord, He will show us the path. We have been fortunate enough to see glimpses of what that plan is, even if it is retrospective. We continue to be amazed every single day at God's plan for Hayden and how He has used him in other's lives. Earlier this week, I got a message on Facebook from a friend back in high school who was a couple of years younger than me. I can't even tell you how many times we talked in high school, but I know our paths crossed different times. It has been 15.5 years since I probably saw her last (WOW! That's kind of scary...I'm getting old!), but she told me of a story about a friend of hers from St. Louis who had a child that is 4 1/2 years old and also had an Omphalocele. When Kelsea and I were approached about allowing Fox 2 in to our lives to do this story, we weren't sure what the right answer was. We were afraid that by saying yes, we might have been just looking for our 15 minutes of fame. After many discussions between with each other and with God, we felt that He led us to this place because He had plans for others. We thought that Hayden's story might give others who were facing a difficult pregnancy some hope. At the time, as always, we couldn't even begin to imagine exactly how vast and detailed God's plan was.

 

My point is that God didn't give us Hayden, and lead us to St. Louis Children's Hospital just so our faith could be strengthened. He did it to help many others as we are beginning to find out. The girl that I mentioned above was able to show her son exactly what he experienced a few short years ago. She was able to show family and friends exactly what she experienced so they could understand better. When I was reading this message on Facebook, I couldn't stop smiling. It was so amazing to see just another small piece of the puzzle.

 

To save time...I am just going to add pictures to the bottom of the blog today. It is when I try to add them in the story that it slows me down and I try to get creative....so today, you get the boring blog!