That afternoon I ended up lying on the OR table prepped and ready for an emergency C-Section. My OB and the Fetal Specialist stood there with me on the table and argued as to whether or not it was time to do the C-Section. My OB thought it needed to be done right then, the fetal specialist thought we could and should wait. Ultimately, the decision was left up to Paul and I and we opted for further monitoring and to wait. I was sent home the next day. Within 24 hours, I was back at the hospital because I couldn't feel Parker moving anymore and my OB said she wanted to do a C-Section right then. So, Parker was born on August 7th, 2010 at 11: 52 am.
Those couple of days two years ago were quite overwhelming to say the least. Prior to that, I had thought I was going to have a perfectly healthy baby boy and in a matter of days I realized that was not at all the case. Those few days were very difficult, but little did we know that was just the beginning. Looking back on these last two years I realize what an up and down journey it has been. Parker and our entire family has gone through a lot and Parker has come so far. He truly is a miracle and I can't adequately express the emotions, the stress, the joy and the gratitude we have felt.
Parker's birth is really quite a blur. I got a quick glimpse of him before they rushed him off to the NICU. I remember thinking he looked puffy and I was scared. My gut was telling me there was something really wrong - more than what the Doctors initially led us to believe.
Those first few days were scary. Parker needed help to breathe, he was hooked up to all sorts of machines, he couldn't eat, and he slept all the time.
We were told a Geneticist had been consulted because Parker had more genetic anomolies and health concerns than is normal and they needed to investigate further. They said it was a reason enough to get a specialist involved but not to get too worried about it. Yeah right, easy for them to say!
I'll never forget the day we got Parker's diagnosis. It was just a few days after he was born. We had been sitting in a small NICU room all day. It was evening, the lights were dimmed, all the machines were beeping, Parker was sleeping, and we were extremely worried, exhausted and frustrated. We knew the Specialist was supposed to stop by that day and tell us what the bloodwork came back with but we didn't know what time to expect him. We didn't leave the room because we didn't want to miss him. We sat in there and watched as the ventilator breathed for Parker. His little chest just kept moving up and down, up and down. It didn't look natural. We so badly wanted to help him but there was nothing we could do but sit there and feel helpless. We were so full of emotions and waiting for the Doctor was extremely difficult. We wanted answers, we wanted to know what was wrong, we wanted them to be able to fix our little boy.
I still hadn't gotten to hold Parker since he was born and when the nurse came in to ask if I wanted to hold him I was even more scared than ever. They had told me he wasn't well enough to be held but now it was OK? They must have bad news. I, of course, said "Yes" and I fell even more deeply in love with my sweet little boy than I knew was possible. He had to be OK, right?
A little later on, the nurse, the NICU physician, and the Specialist came into the room. The specialist took a seat and as soon as he sat down he started to tear up. He took a deep breath and muttered, "Well...I'm disappointed." Those words hit me like a ton of bricks. "I'm disappointed?" What does that mean? Why in the world is the Doctor on the verge of crying?
I felt like years passed by in slow motion before he said the next words. He explained that Parker was missing some of the genetic material on his 6th chromosome. He said there was nothing we could've done to prevent this. He drew some diagrams, did some explanation and told us Parker is likely to be the only one in the entire world with this diagonsis. He said the prognosis wasn't too good but he couldn't be more specific on what that means or what health problems to expect because his condition was so rare. He asked us if we had any questions but Paul and I were so in shock and overwhelmed that we didn't even know where to begin. Our world as we knew it ended right there.
We decided that night not to let anyone know Parker's diagnosis until Paul and I got bloodwork done as well. We were told that one of us could be carriers and if that was the case there was a chance for other family members and their unborn children to be affected by this as well. That was almost too much to handle and we decided we needed to know this information before sharing with anyone because that would undoubtedly be a question that would come up. So...we had to wait several days for the bloodwork to come back and that was practically impossible.
I remember on that Sunday morning, Paul and I decided to attend church. Parker was still fighting in the NICU and we were both exhausted but we felt drawn to church. I'll never forget that morning. We had just been told our child had a one of a kind diagnosis that would likely impact his development and health for the rest of his life. Our lives were going to look totally different than what we expected and we were having to keep all of this a secret from our families. We walked into church that morning knowing that this situation was way beyond us. We couldn't solve it or make sense of it on our own. We were in total need.
The sermon was given by a guest speaker who is a missionary. His sermon was on the Gospel and he taught us that "God's help can supply any need you have." The speaker then showed a video that acted as a metaphor for this idea. The video was of a father and son team, Dick and Rick Hoyt. They run marathons together even though the son, Rick, has a significant physical disability. This father's love is so apparent. His son has total need but with his Father's help they can accomplish the unthinkable. I'd highly recommend clicking on the following link and watching the video. Just to warn you though, you'll likely need some tissues.
As you may imagine, after watching this video, I bawled like a baby. Right there in the middle of church. The girl that hates being the center of attention and tries very hard to keep her emotions to herself let it all loose right there in front of God and everyone. But you know what, that video was exactly what I needed. It showed me that God was going to get us through this thing if we just allowed Him to help us. We could make something positive come from all of this and learn from it. With His help, this was going to be OK.
I also told myself that I wanted to be like Dick Hoyt is for his son Rick. I wanted to help Parker in any way I could and stop feeling helpless. I was going to start fighting, start advocating, start praying. I was going to do whatever I could for Parker and our entire family. We were going to make this thing work - no matter what.
The next week, we met with the geneticist at his office and he told us that Paul and I were fine. He was "almost" completely certain we didn't have any chromosomal issues. I was extremely relieved. While it didn't change anything for Parker, it was HUGE to know that the rest of our family didn't need to worry about this as well when planning their future families. We could now tell our families about Parker's diagnosis and start figuring out what we were going to do next.
Unfortunately, any sense of relief I felt was squashed with the geneticist's next words. He told us that Parker was still very fragile and he may have to continue to battle for survival. Not only right now but in the future. He said an illness like pneumonia could take Parker's life. He informed us that Parker just might not be strong enough to get over something like that. He teared up again when he told us that if at any time we decided to stop treatment or decided to hold back on life-sustaining supports that would be completely understandable and any decision we make would be the right one. He said we shouldn't feel guilty about those decisions if and when they needed to be made.
MY HEART WAS BROKEN. I tried not to cry but the tears rolled down my face anyway. My sadness turned to anger and I wanted to reach across the desk and punch the Doctor in the face. In case you're wondering, I didn't. But I was tempted. This was my little boy. My love for him was incredible. I couldn't imagine giving up on him. Not until I knew what sort of quality of life he would be able to have. Not without giving him a chance. No, that wasn't an option. I couldn't phathom that all of this was happening for no purpose. There must be a reason for it and I was going to be there for my child. Just try to stop me.
And...I'm so glad I did. My little man has gone through a lot - there is absolutely no question about that. I know there will continue to be struggles ahead and I don't know what the future holds. But what I do know is the Parker continues to amaze me, he is a true blessing, and I thank God for putting him in my life. Some of my favorite things about my little man:
Parker is one of the happiest and sweetest little guys I know. He is the best cuddler ever and has the most precious smile in the world.
His giggle is infectious and he will capture your heart in an instant.
Parker is determined. He's made huge strides developmentally and surprises his Doctor's with his progress.
His love for his sister and vice a versa is such a treasure.
Parker has taught me to appreciate the little things in life. I have better priorities now. He's made me a stronger person. He's helped me understand how truly blessed I am. He's shown me how fragile and special life is and he's shown me not to take your health for granted.
Parker does have a purpose - a HUGE purpose - and he has and will make an impact on numerous people in his life. He's my little man. I'm so proud of him. I love him. I want the best for him. I will continue to fight for him. I will always learn from him. I am truly blessed to have this little boy in my life and feel extremely grateful for these last TWO years!