Autopsy Review

Today was a hard day.  First around noon we headed up to the Children's Hospital to attend the autopsy review.  As we had known that Ashlyn died of a stroke they had one of the neurologists who specialized in strokes in children come over and speak to us.  He explained that the stroke itself likely didn't kill her but was probably the only one the medical examiner could find.  He believed her death was likely due to the fact that the cerebellum is so close to the part of the brain stem that controls breathing and that there may have been a primary clot around the area. This first clot may have then split into pieces one of which hit the cerebellum and stuck there.  As both areas are so close together and the part which controlled her breathing was so small it wouldn't have taken much to shut it down and it is too small to actually see if there was damage done there.  As Ashlyn already had a breathing issue with her sleep apnea her tiny body just couldn't survive it.  The doctors all believed that it would have been quick and she wouldn't even have known what was happening.  She just went to sleep and never woke up. 

It is just so unfair.  She went through so much at the hospital and then for some unknown reason she has a stroke.  They have no idea how or why she ended up with a blood clot swimming around.  The doctor thought she just may have been one of the unlucky ones that this happens to and they never know why.  I am just hoping it was quick. 

They all told me once again that there was nothing I could have done to prevent it even if I had been in the room when it happened, even if she had been at the hospital.  But that doesn't make it easier.  I just don't understand it.  My husband is still wanting to know when it happened.  I don't know if I want to know.  I don't know if I could handle it if it turns out I put her down at 1:00 and she died only minutes later.  I don't want to know if she lay in her little crib for hours before I knew she was gone, before we did anything. 

Then later on this evening we had grief group.  I listen and nodded but I couldn't say anything.  I felt like I was interrupting if I did.  I am so exhausted. I need some sleep.  Connor keeps waking up at night and I haven't had a full nights sleep in a week.  He finally got to sleep on his own tonight but I am sure he is going to wake up again and claim he can't get to sleep.  I feel so sorry for my little guy. 

Sometimes I wish I could just curl up into a little ball and go to sleep and never wake up.  I am so tired of dealing with everything and it just seems to never stop.  If it isn't one thing, it is another.  What the hell did I do to deserve this?  What did my boy do?  What is the point?  This so sucks!!

Grief Group

So that last couple of weeks have been pretty difficult.  We started attending a parent's grief group up at the Children's Hospital.  The first night was hard because each family told the story of their child(ren) and how they had passed away.  There were only a couple of us that faced a horrible surprise of finding a dead baby in their crib.  Most had known that their children or babies were dying.  Some were able to make the decision to take a child off life support.  It was really emotional. 

This past week we met again and we watched a video on how some families have coped with losing a special needs child.  Some of it was very familiar.  How your life revolves around the child and how losing the child also takes away a lot of what your life had become, how empty your life now seems.  Then the moms separated from the dads and we continued with our own stories.  It is amazing how connected you feel with other parents.  Losing a child is so different from losing anyone or anything else.  I have lost friends, family, pets, even had 4 miscarriages and it is nothing like this. 

We also had an appointment with my family doctor this week for our first review of the autopsy report.  She couldn't give us too much insight but did tell us that if we wanted to have another baby she would support that decision and help us as much as she could.  I would love to have another baby but I am not sure my body is going to back me up on that and I am not sure if I want any medical intervention to make it happen.  She told us not to wait too long because of my age and suggested that we contact the Fertility Clinic again to see what they have to say.

We have another meeting on Tuesday at the Children's Hospital to review the autopsy report in more detail.  Maybe they can give us a better explanation of what happened.

On a happier note, we had my son's birthday party today.  It had a pirate theme and I think it went rather well.  But I keep thinking that the kids and/or parents went away thinking negative things.  I don't know why. 

The worst thing of the night is that I have a meeting on the 28th.  I have known about this meeting since last May because it is for my son's school fundraising society.  The 28th is my son's birthday and I never made the connection.  I kept talking about my son's birthday being the 28th and never made the connection that the meeting is on the same night until tonight.  Well, I can't go.  I feel pretty bad about it because it is the first meeting of the year but my family comes first.  Especially right now. 

My boy has been having some pretty rough times lately.  He has been waking up screaming in the middle of the night and won't tell us why.  Now we are starting counselling with him.  I hope it helps.  Well, it is getting late.  I hope I can sleep tonight.