Category Archives: Hospital Stay

He Doesn’t Have a Heart

I held my son last night.  Held and rocked his cold body.  He felt no colder than had we taken a walk and the breeze was blowing on his face.

In the minutes before going down to see him, I was so scared.  I wasn’t sure if I wanted to see him … completely lifeless.  But I had to try.  If I gave up, I was afraid I would never forgive myself.

We made the long walk down to the third floor, winding through hallways and corridors.  We walked into the recovery room and into a side room.  There was Annette, the Donor Network Coordinator.  She was standing alone in a low lit room, holding my pale, lifeless child.  What an amazing woman … to hold him.  She was swaying side to side and greeted us with a smile.

Pastor was right, the fear of seeing him evaporated at the first sight of him.  I walked directly to Annette and took Owen into my arms.  I sat in the corner in a rocking chair and took off the goofy hat they had on his head.  His hair would have been red.  He was wrapped in his baptismal blanket.  Given to the Lord for the second time.

Pastor read a book about a child’s first conversation with God — from the womb til death.  I listened at first but zoned out into my own world.  Just me and Owen again.  Gazing at his face, talking with him as if he were sleeping.  Rubbing his hair and holding him close to my chest.  I felt like I could talk to him freely now that the battle had been fought.

I cried.  It felt good to cry … I didn’t want the tears to stop.  I want to cry every second for the next days … let all the hurt and pain out so I don’t have to feel it.  Like turning on the faucet to get rid of the rust in the pipes.  Run the water long enough, the water will run clear again.

I couldn’t help but think of how he was empty.  I tried to see if he felt lighter.  Was careful not to squeeze him too tight for fear he would collapse.

Reality set in.  Not only has his heart stopped, but it’s missing from his chest.  No miracle or act of God could save my Owen.  This was irreversible.  The finger of God would not be pointing down on Owen and granting him a miracle.  I mean I knew he wasn’t coming back.  I believed that with all of my being.  But once I hold him without his heart, I was changed.  It was the first final statement that I had to accept.  It made me want to panic … to try to undo all that had happened over the past week.  He was really, truly gone

I now live in denial.

While in the room, Doug and I took turns being strong and weak.  He held me up when I wanted to crumble.  Soon it was time.  It was late and time for Owen to go to rest.  Doug reached for the door to call a nurse as he wasn’t sure how to work the sides of the crib (how to pull them up).  I looked at him … Doug, we can just lay him down, he’s not going to roll over and out of bed.  A first of many thoughts that we will catch ourselves in.

Then we went home with our families.  The night had come to a close.  It was beautiful.  It was sad.  It was an end.

Love, Mel

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Three

When pregnant I told the following story so many times.

When we found out we were having twins we were so excited.  We felt so blessed to have twins.  Doug’s brother and sister are twins.  So special.  Then we found out we were having triplets.  It’s funny how just one more turned from fun to terrifying.  With twins I have two hands to feed two babies at a time.  I have two legs to rock two babies with.  God didn’t give me three of anything!

There would always a baby being “left out”.

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Warrior March

The anesthesiologists came at exactly 6:15. She asked me if there was anything she could do and I said to take note of the time when she turns the ventilator off. She promised.

We all walked Owen down to the operating room. A warrior needs his army when marching on to battle. And that’s just what we did. The nurses silenced as we walked by. Doug walked with his shoulders puffed up. I felt so proud of my son. I could feel the respect from the staff for my little Owen.

I pictured all of Doug’s army men standing along the wall, paying their respects. Samurais and everything.

We walked down to the swinging doors, where we said our goodbyes. One last kiss. One last pat on the head. One last hand hold. There I stood. Waiting for the doors to swing open from someone else coming or going. Sneaking another peak of my little warrior marching on to his last battle.

While I already know he wins this battle, I asked Doug if thought Owen would be scared. He told me of course not. He died in bravery and in strength. Our child completed more in his life than anyone else we know.

Love, Mel

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I only asked for two things

The time is set. Owen goes into surgery at 6:15pm. About two hours.

We opted last night to do an autopsy. Since there isn’t a positive idea of why Owen stopped breathing, we felt it was the responsible thing to do. With the boys we wanted to make sure that there isn’t a defect.

Late last night we got a call. It was the medical examiner. They said that they were claiming responsibility of the autopsy rather than letting Children’s take care of it. That meant after the surgery the state who take Owens body, take it somewhere, do the autopsy, then release him to the funeral home. Doug was livid. He felt there was no reason our little guy couldn’t stay with the people at Children’s, ones we trust.

I told Doug to let me take on this weight. It was best for the boys and we should let him go. We really won’t even know the difference.

Doug and I went home today to get the baptismal blanket. It wasn’t scarey like it thought it might be. It feels like home. Owen is still there. We did dumb stuff like throw away the spoiled food, empty the garbage. I hung some clean clothes and started the dishwasher.

We got back to my parents house. I called to check in on Owen. The donor network coordinator told me that since the medical examiner wanted to take over the autopsy … they wouldn’t be able to take out his tubes.

I have asked for two things … to hold Owen’s hand when they pronounced him brain dead and to hold my child, free of tubes. Owen was pronounced at 9:14 last night but I wasn’t told until 9:32 and I was sitting in a chair in the corner. And now I won’t see him without his tubes?

I’m angry. I’ve given so much and tried to be unselfish. Letting the doctors do their job, following protocol, fighting to ensure kids would receive a donation. Is it really too much to ask Lord? Just to hold my baby again, like before?

I don’t think I am strong enough … I don’t have anymore to give! Why Lord is this happening? What do you see that don’t?

——

Ok … I was writing in the car on the way to the hospital and we just arrived. Lord was laughing at me when I was mad. He said just you wait Melissa.

We walked in and his GI tubes fell out! Take that medical examiner! He’ll still have the breathing tube and IVs but I can see his face!

We also received an update that his liver, kidneys AND heart all have matches. Get this … both of his kidneys are going to an adult. That makes three recipients. The number three. This time a good three … Not four organs minus one would equal three. We prayed for a miracle and we are getting three.

My Owen lives on. Amen!

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Lift them up

I was pretty nervous about coming home last night. Leaving my Owen alone in the hospital. But after seeing the three boys smiling, I know I made a choice I can live with. Right is hardly appropriate for the decision I had to make.

The first thought when I woke up this morning was, what am I going to do when life starts? What happens when the family goes back to their lives, and Doug back to work. What do I do when it’s me and the kids … I’m the stay at home mom again. Who will I talk to when I need to distract my mind? Who will listen to my inappropriate comments and jokes … just because I don’t know what else to say?

That will be a true test – am I and my faith strong enough? When the paralysis on my daily life is lifted, will there be a breath? Will I pass the tests? Will my daily life fail the apnea test by three points? Time. I keep just saying … time.

We called to check in with the Donation Network. They have started him on a few more drips and are drawing labs every four hours. He did well during the night. We are still waiting for some more information to come back from his Echo, but so far nothing has been ruled out.

It looks like his liver might go to California. The distance will push out Owen’s OR time farther since the other donor team will need to fly out here to get what they need.

I lift up Owen’s nurses & doctors.  May they find peace.  Lord, if you are listening, they deserve the next miracle.  They are your earthly hands caring for this small body.  They have been strong and they have cared for more than just Owen, my family.  Let them be next with a miracle.  Know what their hearts yearn for and hear it.  I know that I don’t have the power to pay them back for what they have done for my family.  Let me them feel the warm that they have provided my family.

I am going to go and call the funeral home now.  Something to occupy my mind while we wait for a surgery time.  I need to go back to the house and get Owen’s baptismal blanket too.  Go into the same room where he left me.  Maybe he’ll be waiting there for me.

One step at a time.  One minute, one second at a time.

Love, Mel

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Little Warrior

If we haven’t been through enough. The apnea test needed a certain number difference on his CO2 levels. Want to know what it came back at? THREE points short of being able to legally declare him brain dead. Honestly?

So we were faced with a choice. We could repeat the test in a few hours or we could stop treatment. If we stopped treatment we would have to pull his tubes and wait for him to go. If we let his heart stop, he would only be able to make a tissue donation. Because of his age, that only includes his heart valves. He would be minimized to the same donation a pig can make. This isn’t good enough for our little warrior.

Do we wait for another apnea test and risk his heart stopping on it’s own? Or do we let it go and only have his heart valve to give? We fight on!

Who knew that when we selected names .. Owen would be so fitting. It means Little Warrior.

Our sadness turns into a fight .. A burning deep within to find a way to make some good of this. We prayed for a miracle and we are getting many. Liver, kidney, lungs, heart, donations to the Children’s Miracle Network from those who heard our story on the radio. Then multiply that out to the other sick kids who will feel the warmth from the Children’s Miracle Network?

How messed up is it that we have to jump through hoops to do something good? The longer we wait the more he deteriorates and the more chance of his organs will be gone beyond donation. We asked what we could do … He must live on.

There is another test. A flow study. They inject radioactive fluid into his brain and study it to see if there is any blood flow to his brain. It was the fastest way we could get a legal statement. So we fight on.

He’s having the test right now.

My prayer has changed and I feel guilty. I pray that we get a brain dead statement so we can move on. So we can continue in the hope of others. Many others. This is a bigger miracle than we could have prayed for. We asked for one and the Lord gave us many.

Tonight we go home to sleep. We could stay … but by going home, we can make an impact … an impact on our boys. Staying here with machines doesn’t give any value. The first baby step back into the world. We will come back tomorrow morning for his surgery and to hold him one last time. The donation center said they can give us updates as the surgery is going on. So we’ll get updates as to what is viable as it’s happening.

Perhaps a family who will get a donation from Owen is reading this. If you are, we already love you. Your baby has many great things to do in life. Know that they will have a little warrior in them.

Love, Mel

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Nothing

He’s gone and for once I’m at a loss of words. Nothing.

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Where we’re at

More waiting. We met with the BloodCenter of Wisconsin about Owen’s donations/gifts. Filled put all kinds paperwork. Was asked all kinds of family medical questions. (which ironically I found humor in the questions). I’ll be able to hold Owen one last time, without any tubes or wires. I just wish that when I wrap my arms around him, finally, I’ll be able to magically bring him back.

His swelling has gone down and he looks like himself again. My sweet chunky little man. His eyes look like themselves … Still lifeless. He looks like he is sleeping and not so sick. It’s harder now to look like him. I find myself screaming inside to just wake up. Come on Owen, open those eyes, wake up from your long nap.

We took off the EEG things that have cluttered his head. His head was covered in oils and nasties from the glue. The nurse and I washed his head and combed his hair. While as a mom, it was a sigh to finally care for him and clean him, it’s harder to look at him. He’s as I remember him. Peaceful and resting. No longer sick and fighting.

Doug and I have a lot of decisions to make and aren’t really sure where to start. I guess a funeral home is the first step. Then things like what will he wear, what music will we play, photos to put out, verses to read. We should have food and snacks. What car will we drive there, who will watch the babies.

My hope is to have a place to be with him. A park, a path, a bench. Just something that has a plaque. His name, birthday, and death. To continue his story … Even of people don’t know of this blog or what happened on that saturday in may, they will read his name and wonder who he was. Maybe even think of who he might have been, who he could have been.

Like with Owen’s miracle, there will be answers with time. Time for answers. Time for healing and time for peace. Time for crying. Time for anger. To to scream and throw a fit.

My roots are deep in my family, kids and faith. I stand unwavering in the winds of tragedy. My leaves will begin to fall as time wears on. My branches will be bare and small twigs might break off. But as the seasons change and time endures, my leaves will come again. This tree will bloom. Flowers will decorate my branches and my Owen will have a place to perch.

Time. It’s the only part of me that keeps moving without any thought.

Love, Mel

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Lasts

I helped with Owen’s care for one of the last times tonight. I can’t remember the last time I saw his eyes full of life. My last memory of him is when he was sleeping his his bouncy chair. My sister fed him and tucked him into bed. The only eyes I see are lifeless and empty. While on the phone with 911 I looked down and saw only empty.

The second and last test will happen some time around 6pm tomorrow. Things will move quickly after that. We agreed on a do not resuscitate plan for tonight. If his heart decides to say “I’m done” there isn’t really a reason to keep him going. We would no longer be doing things in support of him but rather to him.

Since we are donating what we can, they will be taking him still on the ventilator.

I’ll have to watch doctors take my breathing child with a heart beat away from me, never again to return in flesh to me. This is all logical, they can’t let him stop breathing until they have what they need. Yet, this was not in my thought out plan.

Doug made a comment that we’d be home tomorrow night. It didn’t even occur to me that when it’s over, we go home.

I think of stupid stuff. Like what will I wear to the funeral…skirt or pants, flats or heels. Where will we eat afterwards? Will the room be large enough? How will I find the strength to greet everyone or stand that long? How quickly can I sell the triplet strollers? I’m going to burn his crib. Where should I buy a double stroller from?

I feel horrible for thinking of things like feedings will be easier, I can feed two babies at once. Or that loading up the boys for outings will be easier since I can fold the captain chair down. How horrible that I’m thinking how my life could be easier with one less baby. My thoughts make me sick. Yet I can’t seem to stop them, they just come.

I want to cry. I want to sob and cry out. I’m pissed though. Really pissed. I’m angry for what has happened.

My life has been an adventure. Car accident & flight for life, bells palsy, kidney infections, triplets, etc. You know what makes me feel the worst? That I had to drag my family and friends through all of this. Because of me, my 16 year old brother knows the loss of a child. I was the vessel that allowed both the gift and taking of a nephew. Me? I know my shoulders can bare it. It’s not fair that those I love have to feel the burden of my trials.

Enough. I need to stop my brain and rest, even if it’s just for a little.

Love, Mel

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The truth is heavy

This isn’t the blog I wanted to write. This is the news I knew of but didn’t want to hear. The truth, as heavy as I imagined.

They ran the test but couldn’t finish. His blood pressure is too low to get the last one in. So we are giving him a blood transfusion and will complete the last test in the morning. The last test is to take him off of the ventilator to see if he’ll to take a breath on his own. It’s not something to hope for, more of a formality.

The doctor is pretty sure Owen is gone. We are getting the closure to fully accept this harsh truth.

There will be a miracle this week, just not mine. Doug and I plan to donate as much as they will take. He will live on in his eternal life as well as on earth. I don’t know if there will be the option to know who they go to, or if I will walk this earth looking at children and wondering if they carry my Owen.

What am I going to tell Jaden? Or Weston and Logan when they are old enough? Do they already know he is gone?

The thought that makes my gut wrench is thinking about when things go back to normal. when we are out in public … People are going to comment on my twins. I might punch them in the face. How do I not relive this every time someone says my kids are cute. Will I ever glow as a proud mom or always have to breath thru the pain?

It won’t be official until late tomorrow. They will give him a complete test to be absolutely sure. We pray for comfort and peace. Owen you are in the lights, but you won’t be coming home. I’ll leave them on anyhow.

Love, Mel

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