Just when you think things can't get worse....

I haven't posted much lately. I haven't had anything funny, witty or inspiring to say. (I know, I know... you all are thinking that I NEVER have anything funny, witty or inspiring to say). Chris gave me the green light to let people know what is going on.. so here goes...

The last time I posted about Chris was when he had the loop recorder inserted. Last week he went and had the data "intercepted" as they call it. His cardiologist called on Friday to let us know the details. In the 3 week period since he had it placed, his heart stopped at least 85 times. For 4-5 seconds each time. Completely flat lined.

Eighty. Five. Times.

Now, count 5 seconds. One one thousand. Two one thousand. Three one thousand. Four one thousand. Five one thousand. Now imagine that whole time your heart didn't beat.

Doesn't seem possible, right? But ya, that is what is heart is doing. An average of 4 times a day. And generally it is not when he is sleeping.

His cardiologist also informed us that he needs a pacemaker and he needs it sooner than later. If he does not agree to have it done before Christmas time, he will report Chris to the DMV and have his drivers license pulled. He referred us to another cardiologist in his practice to discuss the procedure since he does not place pacemakers himself. After a long weekend of emotions and discussions we decided to wait and see what the doctor we are referred to says. We met with this doctor on Wednesday. He studied all the data and shows us the scans where you can see his heart stop. I asked him if he agrees with the time frame that Chris' cardiologist gave us which was before Christmas. He said that is being very generous and that it really should happen this week. Being that Chris is still on blood thinners it cant happen just yet. He has to be off those meds for a few days. We are waiting to hear from scheduling to set the date but it could happen as early as next Tuesday.

This is all very hard on Chris because he feels perfectly fine. Doesn't get light headed like they say he should be. The doctor that we met with this week said that isn't abnormal. A lot of people don't feel anything. Until it is too late.

I am really ready to be able to sleep well at night and not wake up in the morning and hold my breath until I hear that he is still breathing. 

I will keep updating as we have information but for now, please say a prayer that he continues to feel good until the surgery can happen and that the surgery is uncomplicated.

Down syndrome... a dads story

During 31 for 21 I asked Chris if he wanted to write something about Zach. He sent it to me but I misunderstood and thought it was not a final draft. Silly me. Sorry it took so long Chris! 

I remember when Zach was born.  It was one of the happiest days of my life.  All I could think about was the soccer playing Hiatt boy running up and down the field and owning the players because of stuff that I had taught him.

I was the one that got to take him to his first bath and hang out with him in the nursery.  It was a very special time for me as a new dad.  I could barely contain how happy I was and think about all the things he and I would do.  I just could not wait to watch him grow and become the boy that I longed for.

We were so ready to go home and start our life with our new born when the news was told to us about the possibility of Down syndrome. The way the doctor told us made me want to reach out and shake her for more information other than that the social worker would come in and talk to us.  The social worker was actually a blessing in disguise.  I do not remember her name but we got more information from her and what was going to be happening to us as a family then the doctor provided in the whole 30 minutes we saw her in the 3 days she came to check on Zach.  We were told we were moving to the NICU and that he would remain there until his jaundice was good enough for him to go home with us.  We were also told that it unfortunately be 2 weeks before we had conclusive proof if he truly had Down syndrome.

We cried…A LOT!  We were not prepared for this.  We asked all kinds of questions of doctors and nurses who came into the room.  We did not believe what they were saying and they must be wrong because so many doctors did not see the markings and the traits that are associated with Down syndrome.

Zach was moved to the NICU and we went home quick to grab a change of clothes and rushed back to the hospital.  We met the head of the NICU who was very cold and very straight forward with us.  She told us that Zach would never play any contact sports and that he was not really going to do much.  The one good thing that she did for us in the beginning was pulled some strings so that the conclusive test would be done before the end of the weekend and we not go home without knowing for sure.

We spent just about every waking moment with Zach and even woke up at 2 am to feed him and for Jen to pump.  The nurses were awesome and super understand and friendly.  I think that they understood that this was a child whom these parents loved more than can be imagined.  The nurses knew that physically there was nothing we could other than to be there for their child and love him unconditionally.

I think that it was Saturday when the head of the NICU called us over and gave us the news that she had received the test results back from Stanford.  The tests came back positive for Trisony 21 and that she was sorry.  She was still very cold and reserved.  I was not a big fan and I remember thinking and even telling Jen how much I was not a big fan of hers.  We cried I think at the realization that what we kind of dismissed as a false reading was coming true.

Zach’s bilirubin finally got to level’s that the nurses and doctors in the NICU felt were ok for him to be released.  It was at that point that attitudes and feeling changed. The nurses who were always sweet became happier for us being able to take home our son.  The head of the NICU became a totally different person.  I think that she was so used to having to deliver bad news she was always in her cold doctor form and now we got to take home our son she was very excited for us and talked to us like new parents.  We were very excited!

While he was in the hospital I decided I was going to give up all my physical activities that I did for fun.  No more soccer because from what I was told Zach would never play sports of any kind.  It was not until after we left the hospital that I found out that Down syndrome was not a burden or hindrance but more of a different life experience.  Zach was healthy and there were several well documented cases of kids with Down syndrome playing sports and even excelling at them. 

Today Zach is on a special needs soccer team.  He has played now for almost 3 years on this team. He is still small and probably one of the youngest on the team at 6 but he is out there chasing after the ball with his mom and dad and sister on the sidelines cheering him on.  I am still playing as well and it does bring a sense of joy to see him out there running around and having such a good time.  I think that in a few years when both he and his sister are playing in different leagues that he will be a force on the field and a scoring machine.

I look back at all of the fear and worry that I had when I was told he would be just a kid who did nothing and it makes me smile because I never met that kid and the only child that I see is one that is going 100 mph from start to finish whether it is soccer or school or even life.