Mile's Story

My photo
We're the Johnson's -welcome to our busy lives, a little of this and a little of that!We love doing home renovation projects and have always got one going so I decided to start a blog to keep up with all the crazy projecs I get my husband into and the fun adventures we have with our son Owen.Like I said a little of everything!!

Tuesday, August 30, 2011

Crazy moments

When I was in school one of the things we learned was the 5 stages of grief and how each person goes through them differently, so you would think I would be able to step back and analyze myself and what I'm feeling--not true when its you going through it. Of course as any parent I've had my moments of bargaining...I would have traded places in a second for Miles, I think any mom would. Then I seemed to skip straight to acceptance, it happened and no matter how much we hurt its done, I have been working really hard on this stage and trying to use it to help me cope. The one stage I wasn't ready for though was anger..I didn't think I would hit that stage, why I don't know, but I assumed I could just skip over that one. Its been a rough week, had a breakdown the other day when we went to a pool for the first time since I was pregnant with Miles. Last thing I can remember was when I got in Miles didn't like the cooler temperature and shot straight up to the top of my belly, it was so clear I swear I could still feel the knot on my stomach. I couldn't help thinking about how we had all these visions of taking him and Owen swimming next year and how busy and fun it would be with both boys. So we we're sitting on our patio the next day and I happened to catch a seed floating in the air that had caught on our screen.....I started thinking about how complex the world actually is and what all has to happen "just so" to make it all work and all the sudden I got so angry.If all of these things can manage to function like they are suppose to in this huge world why couldn't our baby have formed right and been ok--some stupid flower can make it but we lost Miles. The whole concept made me want to scream.I know it sounds crazy but I promise anyone who goes through this will have moments like this that catch you off guard and make you feel like your losing your mind--but your not alone.The bad thing  is that even the anger passes but the heartache stays regardless of what stage your in. The more I read on CDH the more I learn about other "misformings" that can happen and it just seemes so unfair that a little hole can take our babies away when we have so much love and so many dreams for them.
I got a card from a good friend yesterday and it had a poem that helped me with a line I really like "for nothing loved is ever lost". I know Miles is not lost, and even when I'm angry I know he's where he was meant to be from the beginning, and he will always be loved so much.This we must accept.

Don't think of him as gone away--
his journey's just begun
life holds so many facets
this earth is only one.
Just think of him as resting
from the sorrows and the tears
in a place of warmth and comfort
where there are no days and years.
Think how he must be wishing
that we could know today
how nothing but our sadness
can really pass away.
And think of him as living
in the hearts of those he touched...
for nothing loved is ever lost--
and he was loved so much. -E. Brenneman

Wednesday, August 24, 2011

More every day

Tommorow will be three weeks, each day seems to be getting harder right everything goes back to "normal" I feel a little more empty. All we have left is a empty nursery, a few pictures, my post baby body, and hearts full of aching and love-but I know we will make it through and it has to get a little easier at some point. I've just finished reading Empty Arms, which I highly reccomend for anyone who has lost a baby, it has helped me immensly. I told someone the other day that I was doing "ok" and really what else are we suppose to do-we can't change it, so either we cope and try to move forward or wallow in the loss and let it consume us. On any given day I go back and forth a million times between wanting to do both, but then I think about my guys and realize I have two awesome blessings and need to do whats best for us as a family.

J.W. and I went to talk to the OB the other day and were able to get some answers as to what we face from here. As he put it the chance of it happening again is 2-3% which is "low" -but try telling parents who just lost a baby that, 2% might as well be 100% to us right now. He did point out that in ANY pregnancy there is a 2-3% chance of something going wrong....that covers all defects and losses. So to make a long visit short- if we decide to try again we will have a 2 in 100 chance of another cdh baby, but we will be sent to a specialist at 15 wks for a in depth sono to check the diaphram ect. and if something were to be wrong we'd go over options and make decisions before the 20th wk. The whole idea terrifies me right now...and although I know we're in no hurry to decide I wonder how in the world I could go through that 15 weeks without losing my mind.If something were to go wrong again how would we choose what's best for that child and for Owen. Each time the fear rises I try to think of Miles, he was so beautiful-looked just like Owen with J.W.'s dark hair and I am so proud and sad at the same time.I feel we made the best and only choice we could for him and I'm trying to have faith and pray that God will lead us peacefully down whatever roads we choose.

Friday, August 19, 2011

Our Story

Aug 4th 2011 we woke up and headed to the hospital ready to meet our son. We have a awesome 3yr old, Owen, so we'd done this before and were just ready to get through the induction and have Mile's. After about 7 1/2 hours of pitocin, a epidural, and a lot of fluid (the dr. had broke my water slowly because he knew from the sonograms that I had a lot!) Mile's decided at about 3:30 he was ready to make his appearance. The final stage of labor was quick and by 3:42 we got our first glimpse of our beautiful little boy, and heard the sweetest little soft cry-thats when things sarted to go wrong.
The instant the cord was cut he started having breathing problems....the nurses quickly realized it was bad and rushed him out of the room hollering "code blue" and to call peds. The next hour was complete torture as a parent, J.W. and I were left sitting waiting on updates as the staff closed down the nursery and worked on Miles. The peds Dr. came in and told us they would try to fly him to cooks and explained that the x-rays had shown a condition called cdh and what had happened. I was so panicked but hopeful that if we could make it to Cook's they could fix our baby and our family would be o.k..
A few minutes later the dr. came in again to tell us that Mile's had been fighting and his heart was having to overcompensate so much that it gave out, and although CPR was underway the loss of oxygen would have serious permenant effects and we needed to make a decision.As a parent I can tell you the hardest decision you can ever be faced with is to have to love your child enough to tell someone to let them go.....I'm not even sure how I got my voice to make enough sound to get the words out. We never even got the chance to hold him while he was with us, all we had was a few wonderful seconds that we will alway hold in our hearts.

The next days were a blur and all I wanted to do was lay in bed and shut the world out....I kept thinking if I slept I'd wake up and my baby would be in his nursery and the world would be right again-it would all be a horrible dream. Being a Christian the only thing I felt I could do was to lean on my beliefs and my faith even though I didn't feel much like God had been by our sides-I have always been a firm believer that God has a reason for everything, so I clung to that notion as empty as it felt at the time. The church and our community showed such support, we were thankful for all of the love we recieved.Its been two weeks now and I have spent so much time researching CDH and talking to others that know or have been through a child having CDH. Our biggest questions are why, how,will it happen again, and what do we do from here?
I decided to blog our experience in hope that as we go on we can possibly help someone else who's had the same experience.Every bit of information we can help get out is knowledge and hope that tommorow will be better for another baby or family dealing with CDH....