6 months

I should be writing a 6 month post for Henry.  He should be sitting up on his own, growing teeth, and starting solid foods.  He should have his 6 month appointment soon where we would get proof that he's giant.  I loved hearing how big he was- his little dot at the top line of the chart, always above the 90th percentile.  I've been mourning the absence of these milestones.  And missing my little boy like crazy.

Henry passed away on July 3, 2015.  He had been sick on Monday, but we never dreamed it could be anything so severe.  Until he stopped breathing and Kurt and I did CPR on our sweet, tiny, perfect son.  I dialed 911 and officers arrived within minutes.  Soon after, the paramedics were on the scene.  Henry was rushed to the hospital here in Ogden then air lifted to Primary Children's in SLC.  On Tuesday and Wednesday we were hopeful.  He was still moving his arms and legs, opening and closing his eyes.  He didn't focus on anything though.  There were a million tubes and monitors hooked up to his little body.  His head was covered with sensors for an EEG to monitor brain activity.

Henry's heart had stopped functioning properly.  The left chamber was only pumping at 20%.  He stopped breathing since his heart wasn't pumping blood and moving oxygen through his body.  He was in cardiac arrest for over 30 minutes.

Before they could run too many tests on his heart to determine what happened, they had to find out how well his brain was functioning.  The doctors said there would definitely be brain damage, but they didn't know how extensive.  Henry needed an MRI.

I was terrified for that MRI.  I just knew somehow that it would be bad news.  Kurt and I prayed for a miracle.  The answer we received was that we had already been given one- Henry himself was a miracle.  I can't disagree, but it wasn't the answer I wanted.

The morning of our 3rd day in the hospital I woke up after a few hours of sleep and got to Henry as soon as I could.  His MRI was that morning.  I felt awful.  He was no longer moving around or opening his eyes.  In the early afternoon they came to our room with the result.  A whole team of doctors.  They showed us his scans.  Dark spots were healthy, bright areas were damaged.  The first scan, his brain stem, looked ok.  But the next scan, and the one after, and the one after, and so on- his entire brain was glowing.  The damage was universal.  That was the phrase they used.  Universal damage.  Essentially, Henry was already gone.

We spent the rest of the day with him.  We were finally able to hold him.  They asked if we wanted to donate his organs.  We said yes.  If Henry's brain had been ok, then he might have needed a heart transplant.  If that had been our scenario, I hoped some parents would have been brave enough to give Henry their child's heart.  So we said yes, even though it made me feel uneasy.  However, after looking over all his info, it was determined there was too much damage to his organs and they weren't able to use them.

So we held Henry.  And we cried.  We told him we loved him.  We asked him to say hello to our loved ones on the other side.  I told him Grandma (his great-grandma) would take care of him.  And then the time came to let him go.  Kurt and I had to make the decision.  They would have left him hooked up to machines for as long as we wanted.  But we knew.  We knew he wasn't really living.  His brain was gone- he couldn't feel happy or sad.  He didn't have control of his body anymore.  He wasn't going to wake up.

The nurse, Stephanie, started unplugging everything.  I held him.  I held him for half an hour until at 12:34am on July 3, 2015, Henry took his final breath.

And now I don't know what to write.  I just sat here at my computer for several minutes.  Which I guess is how I felt.  I didn't know what to do.  I was shocked, sad, numb, disbelieving.  How did this happen?  A week ago Henry was fine.  We had gone to Washington for Luke's baptism.  All those check ups with pediatricians, those ultrasounds with the OB, nothing out of the ordinary was detected.  Nothing was wrong, until everything was wrong.  So wrong it couldn't be fixed.

After two months and twelve days, these emotions have lessened.  I'm not so shocked anymore nor numb.  I'm definitely still sad, so incredibly sad.  And sometimes I'm disbelieving.  It's not as bad, but I always thought he was just in the next room initially, sleeping.  I'd shush Hattie and then I realized she didn't need to be quiet.  Henry wasn't there.  When leaving the house I would think, 'ok, now when did I last nurse?' And then realized it had been days, then weeks since the last time Henry had nursed.

I also felt guilty.  I should have taken him to the doctor as soon as he was 'sick'.  I use quotes around 'sick' because it's not adequate.  Henry was way beyond sick.  How did I not know?  I do remember what I was thinking- he'd never had so much as a runny nose before.  Kids get sick, this was his first time.  He'd be better in the morning, and if not, we'd call the pediatrician.  If only we had taken him in sooner, we could have saved him!

The realization I came to was that calling or taking him to the doctor might not have changed anything.  No one could have stopped Henry's heart from malfunctioning.  But what plagued me after realizing this was that maybe we could have saved his brain- kept him breathing because his heart was monitored and given him a better chance.  But would it have helped?  Maybe it would have just prolonged the inevitable.  As mentioned before, his heart was so bad it probably would have taken open heart surgery or a transplant to fix.  And the prognosis for those aren't great.  Or maybe surgery would have gone ok, but he would have always had heart problems.  He would have been in and out of doctor offices and maybe in and out of the hospital.  And maybe after months or even years he would have died anyways.

I would take that.  I would choose that life, a life where I had more time with my son, albeit difficult.  The point is- even if we had taken Henry in sooner, it doesn't mean he would have lived.  We'll never know.  The what if's can drive you crazy; doctors, friends, acquaintances, books, and pamphlets have all warned me.  But obviously I have still considered them.  How could you not?

I have some very low moments and even days.  When I cry all the time and feel so sad, discouraged, and confused by all of this, even though I know.  I know there's another side- spirits live on.  I felt them in that hospital room as I held Henry when he passed away.  I know that his spot in heaven is secure.  And I know that I can see him, be with him again when I too move on.  But that seems so far away.

In my better moments, I see how much good surrounds me.  Especially, Kurt and Hattie.  I have a husband who I can go through this with.  Who sometimes cries with me and is sometimes strong for me.  Who listens to me during those low moments and never judges my thoughts or feelings.  Our marriage has grown closer and stronger and I know that the very opposite could have happened.  And then there's our little ray of sunshine, Hattie.  Oh how I love her.  I must push on because she is so full of life.  I want to see her learn to read, ride a bike, graduate high school and college, I want to be there when she gets married and has kids of her own.  I want to be there when she's happy, silly, sad, angry.  I want her to cry on my shoulder and lean on it for support.  Who better to help her through life than her own mother?  My mom stood by my side those three days in the hospital, even while I held my little boy as he died.  I couldn't have done it without her.

We received over a hundred cards in the mail and at the funeral.  I haven't counted, but it's a lot.  We're still waiting for medical bills to come in, so I don't know how much we owe, but I know they're going to be expensive.  I would fear them, but we are surrounded by wonderful, generous people who have donated to help us cover those bills.  I am awe struck by the money that has been sent to us, donated through the gofundme account, and those who are participating in the yard sale.  My amazing ward is putting on a giant yard sale.  They've asked ward members and anyone in the community to donate items to be sold.  I can't believe the generosity of family, friends, and even strangers.  It warms my heart and makes living life a little easier knowing that people do in fact look out for other people.  Namely, me.

I have learned the importance of accepting help.  I'm someone who rarely asks for anything.  But when a tragedy happens, people want to help.  Others want to ease your burden.  No one can fix what happened, nothing can be done to heal me and my family.  I'll always bear a Henry shaped hole in my heart.  But others can help feed me and pay expensive medical bills.  They can help me not worry about other things.  And that is something quite wonderful.

We still don't know why Henry's heart stopped working.  The preliminary autopsy results indicate that it was not a structural problem in his heart or arteries.  It also indicates that it was not a virus.  I have found some relief in this.  While at the hospital, doctors assumed the most likely cause of his heart malfunction was a virus.  Even though it didn't quite fit- typically a child would have been sick 2-3 weeks before and then the virus worked its way to the heart.  Henry had never been sick though.  I kept thinking- if only I hadn't taken him so many places.  Maybe I could have protected him.  Kept him from contracting the virus that killed him.  Or I should have bathed him more...maybe that would have made a difference?  But those worries are now void.  I couldn't have prevented this.  Well, other than giving him better genes.

A genetic cause has moved higher up the list of possibilities now.  Which is why they are recommending genetic testing and for Kurt, Hattie, and I to get our own hearts checked out.  When we saw the pediatrician about Hattie's leg (also- Hattie broke her leg!) he said that if nothing had manifested yet, then Hattie is most likely fine.  But we'll all get check ups anyways- you never know.  And I don't want to take any chances.

We may never know the cause of all this.  The doctors have made sure to point that out.  The genetic testing could come back inconclusive.  We're waiting for the final autopsy results and we'll go from there.

I'm glad that Henry experienced much in his short three months.  He went to several parks and museums, he took walks through the neighborhood and by the mountains.  He played with his cousins and met most of his extended family.  Henry went to the grocery store, watched me cook, and did tummy time with his sister.  He traveled to Idaho and Washington where he met his surviving great-grandparents.  He went to church, the Payson Temple open house, and saw his cousin Luke get baptized.  He experienced sun, snow, and rain.  He was held by his mother and slept on his father's chest.  He was loved beyond expression and still is.

It's not easy getting out of the house with an infant.  And there were certainly many days when we didn't leave home.  But I'm so glad we did. I'm happy we traveled and spent time with family.  I hope Henry thinks fondly of his time here on Earth.  I'm happy I'm a stay at home mom who spent every possible hour with Henry that I could.  We are not wealthy people.  It's not easy, financially, for me to stay at home.  But I know without a doubt that it's where I want to be, and that it is worth it.

One more thing before I go: thank you blog!  Thank you alifeofcharity.  I spoke at Henry's funeral.  I talked of his life and I used my blog to do so.  Henry's entire life, minus his last few healthy days, has been documented here.  I read through (which was difficult) and crafted my talk based on what was written here.

I can't look back at previous blog posts, it's too hard looking at that sweet face and seeing how happy and wonderful things were.  I thought of discontinuing my blog.  But I can't.  This blog is my history, my family's history, Henry's life story.  Heaven forbid, but if something happens to anyone else in my family (present of future members) I know I'll be thankful for this record.

Oh Henry.  I miss you my sweet boy.

The day Henry was born:

His last pictures as a healthy boy: driving back from Washington, about 24 hours before calling 911.  He's so sweet.  Held my arm while he was sleeping.  Also- look at those giant hands!  And, yes, he required an outfit change during our road trip :)

And one more that I just like.  Me and Henry!