Clayton Michael Henning- the story behind his wonderful, but breif life

So I've been thinking I should start this blog for a while now, I just remember how comforting for us it was to read from the carepage comments, so I thought this would be a nice extension of the carepage for us, and for all of you who wish to read about our story.

On Sunday, may 29th, 2011 at 7 am, my water broke. I was 37 weeks and 1 day. But I was in denial, I thought I was  just having loss of my bladder (which i had been experiencing at the end of my pregnancy! :)) but after 5 pants changes, I figured we should head i! I was emitted at noon at 5 cm! come 5 pm they started pitocin and by 6 pm I was asking for drugs, not so much because i was in pain, just cause i knew it was around the corner and I wasnt thrilled with the sneaky nurse upping my pitocin!  but the epidural was not going to be the case for me, I had wanted an epidural the entire time I was pregnant, never did I think that my health would not allow it. It turns out my platelets were too low and the risk of bleeding too high for an epidural, but this time it was 7 pm  and I was not feeling so hot, they checked me and baby was right there!! time to push, after 40 minutes, Clayton Michael Henning was born. 8:06pm. 6 Ibs 7 oz.  21" long.

Immediately after his birth, I knew something was wrong. There was an this deadening silence, unforgettable silence in the room. It still brings chills to me just thinking about the panic look on everyone's faces. They quickly resuscitated him and whisked him upstairs to the NICU at st.Luke's. I was able to join him a short while later and there I would learn the multitude of test they were running and the possible prognosis' he was facing. I just remember looking at Marcus and praying, praying God would do what he could and help our little boy. I also remember Marcus and I praying for Clayton's "best case scenario" we'd come to rely on this, Clayton's best case scenario.

By morning St.Lukes was talking transfer, to the University of Iowa, which was terrifying. I am from the area and I know, when you're sent to the University, things aren't good. Clayton was showing signs of severe Hypotonia, he didn't have much for a suck/swallow/gag, he was requiring a ventilation to support his airways. At this time no one really knew what was wrong, but things werent looking good. Doctors weren't saying much, they just knew the U was going to be the best for him. By the am, we were on our way. Marcus & I were discharged from the maternity ward, and we went upstairs to join Clayton before his transfer. Holly was going to be his transport nurse. (a bit of history on Holly, Holly is my good friend from back in grade school, she was part of our wedding and continues to be a really great friend & we both sare the love of Boxers! ) We were so honored that Holly was going to be with him for his first "field trip" It just felt so good that he was going to be in wonderful hands, even though mommy & daddy couldn't be with him.

 Leaving the hospital that day, without the "dream" we had gone in thinking we'd have was the most devastating thing. I will NEVER forget that feeling, I think through all of this, that was the hardest, because here we were leaving without him, leaving without the dream, but more terrifying we were about to enter the unknown, what was Clayton & our future going to hold?
Everything went smoothly with his transport and he was settling in well. We were in Bay 1, which was classified for the sickest babies, It took me a while to come to grips with the fact that Clayton was one of 12 of the sickest babies, but so far he had been showing us some fantastic improvements. The U did multiple testings, everyone was just trying to figure out why Clayton was so sick. They had done a MRI of his brain, which came back normal, normal brain function!! That was such a relief! They were doing multiple chest x-rays, ultrasound of his tummy, Eco-cardiogram of his heart, multiple blood testing, genetic multi-array(this would prove to be the one that gave us diagnosis) on Friday, less than a week in bay 1, Clayton was being moved! He had been successfully taken off the vent, and was a bit more stable so we were going to be moving to bay 2. This was promising news! We began to think that Clayton was going to be ok, he was going to have a long road ahead of him, but he'd prove all of them wrong! For he was our strong boy! heck so far he'd already proven a lot of people wrong!For the next few weeks, day after day Clayton showed improvements and Marcus and I spent LOTS of time with our boy. We were with him from sun up to sun down, going home not cause we wanted to, but because we had to. Marcus said one day, " we are better off going home and getting some sleep and being 100% for Clayton than not and only being 30%." as hard as it was some nights to leave, we knew he was in wonderful hands.  Many of his caregivers loved him like he was there's and what more can you ask for! We once again were moved- to Bay 4, which was a bit more roomy, a couch, TV(this was how Marcus & Clayton bounded over Bonanza), and bathroom. Clayton was getting better, we were just waiting for a diagnosis, and the doctors said since we were spending so much time there with Clayton, they wanted us to have more room!  While in bay 4, We met one of the most courageous and beautiful people I have ever had the privilege to meet, Nurse Alyssa. She was amazing, she knew exactly how were were feeling and knew just how to comfort us. I still am in aw over all the wonderful people we met.

The day the diagnosis came, I will never forget. Marcus and Clayton were enjoying a lazy Friday watching Bonanza, I had even commented on the page that it was going to be a good day, that Fridays were always good days. But was I wrong, Wow what a day it was.  Clayton's Genetic Multi array was back, it showed that he had a mark on his chromosomes, the findings of this and all his symptoms lead them to the diagnosis of X-Linked Myotubular Myopathy. We were speechless. They were telling us, that our boy was not going to "just grow out of it" this was a life altering diagnosis. The prognosis wasn't good either, babies born with X-linked MTM do not typically live past 1 year. They have incredible difficulty with breathing, eating, & swallowing. On top of that he would possibly not walk, or talk. Clayton was sick and for the first time since leaving St. Lukes, I thought we might loose him. We as a family had a lot of decisions to make, it now wasn't what we wanted, it was what was best for Clayton. During this entire time Marcus and I had held onto hope that Clayton would simply "grow out of it" but we always kept in the back of our minds about what his "best case scenario" was. It was now, that we let heaven enter our minds. I remembering asking God, if he thought heaven was Clayton's "best case scenario" but I got no answer, well until Monday that is.

So we had a wonderful weekend, Father's day was wonderful! Not the father's day most dream about, but it was the best we could have! Clayton was doing really well, by this point his oxygen was down to a regular nasal cannula and on 1/4 liter. which i was thrilled about, that meant one more step closer to going home!! The doctors had been talking about some surgical procedures to insert his feeding tube in his belly and do a stomach wrap to prevent his reflux, and do the muscle biopsy, which was going to confirm the diagnosis. These were all supposed to be scheduled for Monday.

 
On Monday, Clayton had a different plan. We received an early morning phone call from our nurse Stephanie, whom we loved! She told us to come in, Clayton was having some breathing difficulties and just wasn't happy. Upon arrival, there were a few nurses in the room, I knew something wasn't good. After a bit, they decided Clayton would need to go back to Bay 2 to get some extra oxygen support and find out why he was so upset and why his stats all over. I can still remember the walk back to bay 2, it was excruciating, here Clayton & us, had tried so hard to get better and get home and here we were moving backwards. I felt defeated. It was very scary, Clayton had so many doctors working on him, checking his blood gas, chest x-rays. It turns out his lung had collapsed, the little man just didn't have enough strength to keep them open. Through all this, we were now faced with the heaven question again. Both Marcus and I stepped back and looked at what we were facing and what Clayton was telling us. I knew it was what we had to do, but thinking about it was terrifying. This was the day we also met another truly amazing person, Doctor Jen.  (she is now my doctor, you will hear much more about her in other blogs!) She was there to help Clayton, but really she was there helping us, even though she didn't have to. I never realized it until leaving the hospital after Clayton's death, but Clayton allowed us meet some really amazing people. I thank God every day for those amazing people, they have touched our lives forever. 

So after making the decision that Clayton was going to lead the way, time was now all up to Clayton & God. We were going to support him and pray for him to get better! Tuesday we called all the family in and just had a "family" day! It was wonderful, we had a baptism for Clayton and just let everyone hold and love on him. So he was quit the happy camper! who wouldn't be?! Tuesday night we did pictures, which I am so grateful for, we were able to get some fantastic professional pictures of us n Clayton, even without tubes! Wednesday we did Crafts! Clayton made hand molds, a foot mold and did some hand embossing with our hands, moments I'll cherish forever.

Thursday night we had some wonderful friends come visit us and Clayton, it was so great to have them see him, they too were like family, and we wanted them to have a wonderful memory of Clayton too. Clatyon was having a tough day that day, and through the evening. I remember after walking our friends out to the car,  I said to Marcus" I'm at peace with this" I knew what was waiting in the wings. Clayton was telling us, "mommy n daddy, I'm tired, I can't be strong anymore." It still brings tears to my eyes, but I knew our son was leading the way. We spent the night at the hospital in Clayton's room that night, knowing Heaven was soon to be. Alyssa was there by our side, comforting us and most important getting Clayton comfortable. When I think back to the amount of courage in that room that night, it brings chills. Here we were Clayton's mommy & daddy telling him it was OK to go to Heaven, not for our own reasons but for his. As scared as we were, I knew life in heaven would be so much better for him.

At 8 am Friday,  we took off all the tubes, removed all the monitors. It was just mommy, daddy & Clayton. It was beautiful and peaceful, exactly how we wanted. I tell people, its not something you look forward to, watching your child die, but if I could have planned anything for Clayton, this was exactly how I would have planned it. Simply beautiful.

So exactly 1 week from the diagnosis, on June 24th, 2011 @11 am Clayton Michael Henning flew away with the angels to heaven.  I'll never forget how peaceful and LOVED he looked, when Bridgett (another nurse favorite!) brought in an Iowa Hawkeye Blankie to wrap him in,  she said, "once a hawkeye, always a hawkeye." this is a saying I will NEVER forget, it's kinda Clayton's "theme song"

Clayton with his favorite- seahorse

Clayton's balloon went onto heaven first- followed by everyone who loves him