I know the question to our story that most people find themselves wanting to know but are to kind to ask is what happened to our sweet boy....how there was an end to a bittersweet beginning.
Wyatt was okay for the first week of life and was actually making improvements and then right around the 2nd week he was with us he started to change in a gradual way that did not jump out and alarm any of us but from hour to hour things kept changing in a downward spiral.
He came down with a staph infection that came out of nowhere... he started to have liver problems and he was getting quite fussy (which was not normal for our monkey) and last but not least he was starting to loose his awareness of us and things going on around him. He was starting to have some breathing problems without explanation and he was losing ground on his medical gains for no rime or reason that anyone could find.
When he was 10 days old an MRI of his brain was called for just really for a precaution due to his recent problems... before we go into that actually I guess I should explain.. when Wyatt was born due to a lack of oxygen from my placenta and the cord being filled with blood clots there was always a risk, a strong possibility, that our boy was going to have some cognitive and developmental issues that overtime as he grew would probably present themselves. We were asked if we wanted to have an MRI of his brain when he was around 3 days old to see what damage if any had been done and what we could maybe expect for Wyatt and his cognitive and developmental health. We kindly turned down the elective MRI knowing that we were going to love him no matter how well he could read, talk, walk etc. I remember saying to the Doctors who asked us "We are going home with him no matter what an MRI shows - What other option was there so why make chaos and questions- we want to just enjoy him and cross the bridges we needed to when we would need to but for now lets just sit back and wait to see what Wyatt does and where he leads us." He was perfect to us~
When they suggested later on that we do an MRI to rule out any problems that could be causing his slight decline and we were not to alarmed - at this point Justin had actually had to go back to work a few days a week and I was at the Ronald McDonald house with Linda where we were getting into a groove after a few days of Justin being back home in Pueblo West, and things were looking up even though we were having a few hiccups with Wyatt's progress. The MRI was scheduled and the night they did it Linda, Ron (Justin's biological dad), myself were waiting in Wyatt's room while they took him and brought him back. I remember the smile the nurses and respiratory therapist had when they brought Wyatt back and I felt even more confidant that everything was okay with the MRI.
The next morning was a Thursday and Linda and I had went to Target so I could get Wyatt a night time classical music C.D. to listen to for bedtime... we wanted to start a routine for him that we could use at home when we were ready to go.... Linda had some other things she had to do that day so she dropped me off at the hospital and I was in such a positive mood that morning and was getting ready to have Justin come back to be with us the next day after him gone all week.
I remember stopping at the milk drop station in the NICU... I checked in my pumped milk and turned the corner to walk the long hall down to Wyatt's room. It was a straight shot and I could see the door to his room from the corner you had to come around from the Milk Drop Station. I saw probably 10-15 nurses and doctors outside his room and I automatically focused in on Wyatt's Dr. They all looked like they were in a deep conversation but I still was not putting 2 and 2 together that something was wrong I just figured it was a meeting of the minds (what we liked to call it and they were finishing up as I got closer). As I approached and was within ears distance of all of them they quietly looked over at me and Wyatt's main doctor Dr. D came up to me and asked me if Justin was back from work yet.. I told her no he would be tomorrow, she then asked me if Linda or any of my family was with me and I told her no again.. they all looked at each other and the air actually felt like it was sucked out of me and she then said lets go in Wyatt's room and in followed behind us the social worker and 3 other doctors I did not know and they filed in Wyatt's room and quietly shut the door behind them. I could feel my legs get the jello feeling and my face began to get really hot and the air felt like I could not get enough inside of me with each of my breaths.
Dr. D was starting to say "Well Stephanie.." and then here eyes swelled up with water and they became very red and no one would look me in the eye at first. I said then "What's going on.. is everything okay?" Not really wanting to hear the true answer ... and then Dr.D started again
"Well Steph... things are not good at all actually they are worse than we expected." Her voice was shivering and small and I knew what she was wanting to get out was going to be so hard for me to hear and she wanted everything to be different for us this minute. She started to say "The MRI of his brain is devastating and is completely unexpected what we found this morning on his results. I am sooo sorry and if you want to wait for Justin to go over his scans and what this means we can." I took a deep deep breathe and tried to process what she was trying to tell me and I remember looking over at my sweet boy I could only see the top of his head from where we were and he was sleeping so peacefully and I was in pure utter shock that something like this could be wrong with this perfect boy who was right here in front of me... his perfect little head that I could see was so broken inside and none of us could fix it....
I told her to move forward with me there so that I could be prepared for my call to Justin after they left the room. She and the other doctors explained that Wyatt had a complete devastating brain injury that was caused by a severe and massive brain hemorrhage that happened in the last week (which explained his decline in the last few days) and there was no way to know, prevent or fix it. It was over 75% of his brain as well as the the parts that did not have blood showing were damaged by the lack of oxygen at birth. They all explained to me that he had the worse possible scenario for brain injuries and there was no way to recover from where he was at. He would never progress past the mentality of an infant best case and most likely not make it much past his first years of life as most commonly with this degree of injury a common cold becomes so severe that most children who do make it home with this injury spend months back and forth in and out of the ICU with severe issues until they succumb to one of their ailments.
They also walked me through the visual of the the MRI results. As I look back on that day now I still feel that air leaving me as it did then and the nauseating feeling that overcame me. I have never felt so confused and unprepared for something so horrific and unexpected. My head still gets dizzy just like it did in those moments.
They all kept grabbing my hands and stopping with the facts of what was and just holding me as I sobbed and remembering now I recall just saying over and over as they asked me if I was okay .. i repeated over and over "I just am not sure what to say ... what should I say?"and they all kept saying "Nothing... no one expects you to say anything." but I felt that I needed to respond but no real thoughts were entering or leaving me I was so broken and hurting just as my son was and no one or anything could fix us.
I called Justin and fell apart and he called his mom and started his way back to us right away. I remember in the midst of this Wyatt woke up and started to cry but I was so weak I could not physically move or get to him to comfort him... they nurse came in until Linda could get there... Right when she got there she held me and we sobbed together until Justin got there. Once he got there we held each other and then pulled it together for a moment to pray over our son and there and then we put everything in the lords hands to guide us to make the right choices for our son and us. Dr. D came back in and went over everything again with us and in the meantime my aunt and uncle came to be with us as well as Ron and my dad was on his way back from Oklahoma.
The next day came and a conference (what no one wants to have at Children's- it most likely is called for because something is really bad and life changing decisions are going to be discussed and made in them) with Wyatt's neurological team and Dr.D along with some other staff were all at. The night before Justin and I had discussed all different scenarios and which way we would handle each one in preparing for the meeting but really nothing prepares you for something like this. We had Justin's mom Linda and his dad Ron as well as my dad in the meeting with us as well. It was a somber entrance for each of us and there were tissue boxes pretty much in front of each seat around the large conference table. We all took our seats and discussed everything. The meeting lasted over 2 hours and at the end we were faced with the complete picture of our Wyatt ... it was devastating and unthinkable.
We were being faced with the reality that our boy was not going to overcome this and we had to choose one way or another and either one resulted the same. As we walked out my legs buckled and they almost felt as though they were not mine... Justin and my dad caught me and I started to scream out how this was not happening and things from there became a bit blurry and the next thing I knew was Justin and I were sitting in the chapel praying. From there we went and meet with the on call pastor looking for comfort and understanding. He did gave us that and much more.
After many calls and second, third and forth opinions that all resulted to the same conclusion for our babies future we were faced with the choice to sustain him until his ailments would finally overcome him or take him off all support now before things got worse and more painful for our sweet baby. We had to choose the least selfish way for us and that was to let him go now in the least amount of pain and free from other terrible inevitable problems that would come as he grew older.
We had him baptised on Saturday morning and shortly after they took him off support and in the days to follow we spent the most precious of time with him and he was able to meet some of his great grandparents and many other family that loved him ... We were able to hold him free from all the tubes cords and other things that caused so much distraction before , we took him outside, bathed him, sang to him, and just purely loved him and savored all the time we had with him.
The time came to say goodbye and he was in his daddy's arms where we prayed over him letting him know it was okay to go home and give his little fighter of a spirit a rest we knew he was strong and the time had come that we needed to be strong for him. On Friday May 4, 2012 at 7:14 pm He went from his daddy's arms to the arms of Jesus, his Grandma Mary (my mom) and his Grandpa Fred (Justin's grandpa) and many other loving arms.
The reason why I titled this post home is because of the meaning of home~ the definition reads:
meaning: 1.The place where one lives permanently, esp. as a member of a family
2. Of or relating to the place where one lives
I can and do talk to him all the time I send him my love and kisses every night... I still yearn for him to be here in our home where he was meant to be but I know that we will all be someday together in our eternal home where our Wyatt and our some of our other loved ones are now. For this moment, though I take solace and comfort in know that our sweet baby Wyatt is at home.