The Best Chapter of my Life!

In the journey that is my life I have had many adventures full of ups and downs and though throughout most of them there are things that I wish I would have done differently or skipped all together. Usually when these moments occur or you discuss them later, one of my least favorite phrases tends to surface. While it comes in a variety of forms but basically it is "that everything happens for a reason" while I hate hearing this I usually do eventually agree that everything does happen for a reason. It would just be nice if we could know upfront the reasoning behind it. But knowing (or at least hoping) that everything happens for a reason, I would not want to change anything in my life prior to September 11th, 2007.

So now your asking why September 11th of 2007? Well it was on this day that I achieved the greatest honor a man can achieve in this life and that is becoming a father. My wife Devoney and I had were married in 2004 and prior to this pregnancy we'd had two miscarriages. So while we were excited about our coming child we were also concerned something might go wrong but we still kept our hopes that all would be well. And things started out pretty good with all of the doctor check ups going according to plan. 

But then at the 6 month checkup the doctors gave us some bad news, there were a few concerns but the the primary concern was that they suspected that he had hydrocephalus.

Hydrocephalus: a condition in which fluid accumulates in the brain, typically in young children, enlarging the head and sometimes causing brain damage.

Which was devastating news, but we knew that despite the extra challenges our son would face in life that we would love him just the same and do whatever we could to take care him. So in the next few months with Devoney on bed rest we began to prepare the way for our son.

Knowing that he would require much more attention and care, we decided to sale our brand new house which we had just gotten into about a year earlier. We made this decision for two reasons one we knew that our medical expenses were going to be much higher than we expected and that, this would allow Devoney the freedom to stay home full time if we found someplace cheaper to live. And at first that cheaper place  ended up being my dad and mom's house, which besides the free rent turned out to be a blessing for other reasons later on. We also met with a specialist who confirmed the diagnosis and recommended we schedule the delivery to be done at the University of Utah Hospital, so we would be near Primary Children's Hospital incase he needed it.

Shortly before the date arrived I ended up losing my job, which was stressful at the time, but again it later became clear that it was for the best. And luckily we had successfully sold our house with some left over to help cover our initial medical expenses. And the time flew by at least for maybe not so much for Devoney who was still on bed rest. But the day had come!

So we made our way down to Salt Lake City, and on the morning of September 11th of 2007 before going into delivery the doctors decided to do cat-scan which unfortunately bore bad news. The images showed that he did not have hydrocephalus, but that it was actually hydranencephaly and it was quite severe. His brain consisted of only the stem and strands that

Hydranencephaly, is a disorder where the cerebral hemispheres are completely or near absent at birth, including the cerebral cortex and basal ganglia and are replaced by cerebrospinal fluid.

extended from it. Because of which they told us he had zero chance of survival and that they would not perform the planned c-section and that they did not plan to monitor his birth. While we were devastated and had no idea what we could do, but we needed to do all we could. Starting with not giving up on him like the doctors had done. We insisted they monitor the birth and give him the best chance to make it. And though they still disagreed they did as requested, and at 7:47 PM our sweet little boy arrived. 

Prior to getting the heartbreaking news about how bad his condition was, we had not yet been able to agree on a a name for our little man. We both liked a few different names but after learning of his condition and and the difficulties and disabilities he would face, I decided that it would be fitting to name him after a superhero who also faced the challenges of a disability, who through his strong will to live and do good, still reached out and positively influenced the lives of others. I had also wanted to name him after my own real life hero, a man who I knew would always be there for my son in his times of need, someone whose strength and kindness had positively influenced my life and the life of so many others. So I suggested my name choice to Devoney (though I did not mention the superhero connection as Neo and Kalel both got shot down for their superhero connections) and we both agreed it was the perfect name for our little man. So we named him Xavier Michael Wolfe, Xavier after Professor Charles Xavier of the X-Men and Michael after my dad.

Despite his beating the odds placed on him, the doctors were still pretty grim. They told us we would not survive longer than a few minutes, and then only a couple hours, followed by that he would not make it through the night, and then only a day or two, which grew into weeks and then months. But we quickly learned that Xavier's sweet spirit did not play by the same rules the doctors followed. And that we would do whatever we could to make him comfortable and happy.

Although Xavier is really our third child as we know that we will be reunited with our two children that miscarried previously. I did not truly feel that I was a father until late in the night of Xavier's birth when he was in the nursery and I was standing beside his crib and he grabbed ahold of my finger with his little hand. And it was at that moment when I knew what it meant to be a dad, and I promised my little guy I would do my best to take care of him.

With the staff at the hospital still determined he would not survive they sent us home the next morning only after first having us make arrangements with a mortuary in both Idaho and Utah as they were sure we would need them before getting home. But we made it home and though we did have a few close calls in those first few couple of months for the most part he did quite well. Xavier needed a lot of care but we were more than willing to give it to him, and luckily living with his grandma and grandpa who would also do anything for him made our lives much easier. As we pretty much needed someone to be up with him at all times. So we took shifts, I usually got the nightshifts when grandma did not steal him away. And it was truly a blessing to be able to have the time to spend with him.

Our family doctors did a great job of helping us take care of him, but it eventually got to the point that he needed more than they could provide. Typically with hydranencephaly, they will put a shunt in right away to alleviate pressure buildup. But we were told when he was born that because of the severity of his condition that they would not do it, and that no other doctors would. But our family doctors suggested going up to Primary Children's Hospital (in Salt Lake City, Utah) and insisting on it. But when we got there they were fantastic, we did not need to insist they were determined to do the best thing for our little guy as well, much better experience than we had with their neighboring hospital. And though they could not put the shunt in right away, because he had an infection that had to clear up first, they took excellent care of him and were much better at working with his doctors at home. 

And when the time did come to get his shunt placed again they took such good care of our little man. It was such a relief to see the change in him as built up pressure was released, he was always a happy little monkey but the pain he was in had to be unimaginable. So it was such a relief for me to see him so happy. Primary's Children Hospital quickly became Xavier's home away from home which was not always a good thing but they also took good care of all of us.

After Xavier's shunt placement he did have other minor surgeries there as well but that was the most life changing for him and us. After his shunt was placed and the doctors were more hopeful of his survival we began to try and get back to a more structured life. (Though Xavier never really cared for a sleep schedule) but I went back to work as a nursing assistant in Blackfoot, ID and we were still dwelling in my parents basement. And Xavier doing great he was getting bigger and stronger. And we decided it was time to for me to try and go back to school I had wanted to become a nurse since high school, but life never went quite as planned. But I felt not only could I provide better for my family by going back to school but it would allow to take better care of my son in any future problems he may have.

So after looking into different nursing programs I decided on the one at the College of Southern Idaho (Big mistake but more on that on another day.) in Twin Falls, ID. I had previously lived in Twin Falls and worked as a Support Technician for Dell Computers, so I talked with them and they said they would take me back and also said they would try to work around my class schedule. My initial plan was to first do the LPN (practical nursing) program but then after looking into it I decided to just go right into the RN (registered nursing) program. But because of the wait list for that I did not end up starting classes until about a year after we moved. 

During that time Xavier did quite well, he had good days and bad days like all little ones do, but again we were confident that he would be with us for a long time. He had overcome so many obstacles and hurdles, and had such a strong will to live that we thought he could overcome anything. He had been working with multiple therapists who had helped him achieve many things we all take for granted. Though he was even learning a little bit of sign language which helped him express himself. He was legally blind but with some help from the doctors and some very cute little glasses we believe he was able to see a little more.

In May I decided to quit my job at Dell, I had already decided to quit at the end of the summer as they were not going to be able to work around my schedule as well as hoped and I was planning to find something else. But in April Xavier had some issues and spent a lot of time at his second home and then in May he had started getting sick and I felt it more important to be with him and fortunately because of his disabilities he would still have good health coverage. When he was sick we took him in to his local doctor who said it was just a cold and he would get over it which he seemed to do pretty quickly. After he was doing better we decided to go ahead with a planned trip to Canada (Devoney is from Cardston, Alberta) to see family. 

We had a great time traveling and visiting and Xavier got to meet some of his aunts, uncles, and cousins for the first time. Unfortunately we had to cut the trip short as my Grandma Evelyn Wolfe passed away while we were gone. So we headed back early to make it back for her funeral and though it was a sad  time it was also good to know she had been reunited with my grandpa again. 

Shortly after our return from Canada, Xavier had started to get sick again and though his doctor passed it off as a cold again, when we started having a hard time getting him to eat and take his meds we decided to take his grandma' sad vice and get him back up to Primary's. In which the trip itself was quite the adventure, for the 3 hour drive from my parent's house it took well over 6 hours and three vans. (One got wrecked everyone survived except the deer, one broke down and never ran again, and finally the oldest one huffed and puffed its way there. Though something or someone did not seem to want us to get there we finally made it and just in time. 

Shortly after arriving to the emergency room my little man's lungs and my heart collapsed, in a moment like that you feel so hopeless and can't help but wonder what you could have done differently to prevent this. As I stood there and watched them intubate my son and connect him up to machines to breath for him, I just wished I could do something even if it meant trading places with him. 

And though it was heartbreaking to see him in so much pain, I was so thankful to my mom who insisted we went to the hospital when we did. And that they doctors and nurses at Primary's were so caring and knowledgeable. I don't recall exact lengths of time but Xavier was in the hospital for quite awhile after her lungs collapsed, in order to get over the virus that caused his problems and to heal up from the damage it did. He had a difficult time coming off of the ventilator, so it took multiple attempts before he was strong enough to breath on his own. The virus was basically a cold virus, but because his body did not have a strong immune system it had devastating effects on him. But after about a month or so he was finally able to go home, so though we were appreciative of Primary Children's Hospital and The Ronald McDonald House which had become our home away from home many times during Xavier's many trips to Utah, we were excited and relieved to finally be taking our little man home again.

And though he was still having some difficulties we made it home and just started getting back into the groove of things, when Xavier's symptoms started to reoccur. Undecided if we should take him back to Primary's or the local ER we decided to seek immediate attention at the local ER first where they ended up life fighting him back to Primary's after his lungs collapsed again. His mom flew with him to Salt Lake and I headed up in car, but once again car troubles plagued my travels the head gasket blew on my Pontiac Sunfire, luckily I was close to home still and got a ride back to our apartment and started the travels again in our Pontiac Minivan which luckily made it back to Primary's. (The head gasket blew on it about a month later.) But anyhow I made it, and up with Devoney and Xavier back on the ventilator again, this time it was from another mild virus that he likely picked up from his first visit. 

At first we were hopeful that he would overcome this virus just like he had with the other, but the damage was greater this time and he had a harder time getting over both the virus and the damage that had been done. But we knew he had overcome many obstacles in his short life and that we needed to do whatever we could to help him overcome this new obstacle. But the doctors were not as hopeful, although they were much more caring and willing to do what we wanted they were not to sure about the outcome. We tried to make the best decisions we could with our limited knowledge and understandings of everything, but after about another month in the hospital. We were required to make the most difficult decision of our lives.

The doctors were confident that Xavier would not be able to come off the ventilator and breath on his own. They said that there was a slim possibility of him being able to survive if they performed a series of procedures and surgeries, but even with that they were not optimistic. And in his current condition and his suppressed immune system they were not sure he would survive the procedures. Their recommendation was to take him off the ventilation and keep him comfortable and let him go.

Not knowing what to do or what would be the best for him, it was difficult to decide what to do, but we finally decided that we did not want to put home through more pain and suffering, that would likely not help him in the end. And we decided to let go and let him return to our Heavenly Father.

But to this day I have struggle with whether we made the right decision or not, or if we made it for the right reasons. Shortly after making the decision they disconnected him from everything and let us hold our sweet innocent little boy for one last time. As I held him in my arms as he fought for his last breath, I was devastated as I sat there helpless once again unable to help my son, knowing he would miss out on so much in this life, I just wished he could have had more and that I could have done more for him. But he was gone.

And while I would have done anything to keep him from having to suffer so much in his short little life, and to have allowed him to live longer and experience what this life has to offer. And while his death was the greatest pain I have suffered, I would not have changed or traded anything in my life for the time that I was granted to have him here in my life. Having him in my life has made it all worth living so despite any trials or hardships I have faced in my life, they all led up to Xavier becoming a part of mine. So while I may ponder at times how my life could be greater if this or that happened or this and that didn't happen. I am so grateful for the events in my life that led to his existence in my life. And I still hate hearing that everything happens for a reason, and I'll always wish I could have done more for Xavier. His short 22 months with us changed me forever, he made me a father and though imperfect I will always be his dad and he'll always be my little man.

Happy 7th Birthday to my sweet little angel! I love you Xavier!