That knot

Ugh. Few people know THAT knot. The knot that the parents of Ethan Powell have in the pit of their stomachs this evening. It feels literally like your heart is in your throat and you feel like you are holding your breath but then you realize you aren't.

You sit there in that room, doctors sit there with you. You all watch the monitors because you all know that there isn't one person in that room that can save that child right now. It's up to God and that baby at this moment. You watch the numbers and they mean so much, ever drift of a blood pressure every drift of a sat number means the world to you. You watch those numbers and when they start trending quickly in the wrong direction you see the doctors tense and the nurses look at them for instructions.

The monitor constantly sings it's scary song..... ding ding ding....ding ding..... over and over and over again no matter how many times they silence it. The blinking red numbers scream at you. Nothing else in the world exists. You don't hear the sounds of others talking, you don't hear the sounds of ventilators or the hustle and bustle in the hallways. You only hear the sound of that monitor and hang on to every word that is muttered from a doctor or nurses mouth..... listening, waiting for some indication that they know what's happening, for some clue.

You want to run away and hide and you want to run to your child and scoop them up and take them away from the invisible danger in the room. You can do none of those things. Helplessness takes over and you wish you could even cry but you can't. You are so far above, or maybe below any emotion.

The staff tries to comfort and inform you. You shake your head but don't really hear what they are saying......... the dinging of the monitor is so overwhelmingly loud and fills the entire room with it's terror. You sit there, the most insignificant person in the room yet the one with so much to lose. You are frozen in your seat as people glance your way, waiting for you to crumble. Yet they don't understand that you are so far beyond that, you are on autopilot. Time slows down, seconds become hours and that god forsaken dinging won't stop. You feel your heart pound and think it might just burst at any moment........

Maybe it gets better. Maybe with enough blood, enough medications, enough equipment they finally stabalize him. You walk to his bedside and hold him as much as you can, terrified to touch him, terrified to feel. You look at his battered body and, maybe selfishly, thank God for another chance. You push the thought from your mind as to what this constant turmoil is doing to him because the alternative is too much to bear. You kiss him and dust yourself off as doctors beging to put their chairs away and filter out of the room with a sigh of relief. But the knot never goes away, it stays in it's spot in your stomach, sometimes waning for a time only to be brought back up when it all starts over again.

You never know when that monitor is going to start, and you never know if this is the time they won't get it to stop. Your life hangs in the balance almost as much as your child's does, your very sanity dependant on what the next 30 seconds will mean. This is a ride you can't get off. A scary room you can't find the exit to. The walls close in on you.

Imagine living this every day. Imagine living this every hour. The rollercoaster ride from hell. Just imagine..... and you will understand why when it's finally over the relief is as welcomed as anything. The pain is there, but at least you know that this pain will be different, in some ways easier to bear in some ways more difficult. Because the rollercoaster, the teetering between life and death is now over and the decision has been made. Once again you kiss his tiny body, afraid to touch him, and exhale slowly as the knot, for the first time in a very long time........... fades away.

For years you continue to hear the sound of that monitor in your head, it wakes you from your dreams and sometimes prevents sleep from coming altogether. But now, you get to wake from the nightmare from time to time.

Please pray for Ethan tonight. Pray for him to be healed in whichever way God has planned for him. Comfort his parents and give them the strength to hold on and if the time comes, the strength to let go.....

Every mother's nightmare

Every mother pushes the thought from her mind. The thought that something could happen to her child. It wakes us from our sleep, we think we would fail to survive it.

Some of us have for whatever reason have to live it. Somehow we do survive it but how much of our soul is still intact isn't always certain.

It started with the vasectomy, kind of strange isn't it? Then the reversal. Then by the grace of God the positive pregnancy test. An uneventful pregnancy, perfect in every aspect until at 36 weeks my water broke.


He was born in January 2006 at 2:32am. A petite 4 lbs 14 oz. The next 16 hours were pure exhausted bliss. Until he stopped breathing...

That night we heard the dreaded words that would change our lives. Heart defect. We traveled to one hospital to stabalize him, then another to fix him.

We lived in a Ronald Mcdonald house for over 6 weeks.
Our lives turned on it's nose. Normal became a thing of the past. Our lives were dictated by every breath of a ventilator, every blood test, every ultrasound, CT scan. They say it's a roller coaster. It is. Imagine that feeling as you are going up the track.... the anticipation. Then imagine going over the hill to the first big drop. The track could well derail and hit the ground.... or it could be fine and climb another hill only to drop again. There is no certainty. So many days and nights I would sit in his room, 3 or 4 chairs aligned in a row with doctors and me just sitting there with baited breath waiting for Alex to show us all what to do next.
Alex showed us strength far beyond anyone's comprehention. So many times he pulled through from deaths door. He taught us to live in the moment, because you never know what the next may bring.

Alex showed us patience. He endured so much to stay with us until the moment we were strong enough to live without him.

The day he died changed my already changed world. My children now knew that children die. My husband and I now completely understood the uncertainty and precariousness of life. We learned to take each day as the gift that it is and never let one day go by where you are not happy with the way you lived it. It might be your last.
The day we put his tiny body in the ground made me realize that in an instant, life is over. It's that quick. You live, you die, you are put in the ground, and people walk away. All that really matters is what you do between the day you are born and the day you die. How many lives you touch, how many lives you make better in some tiny way.


So, from that day forward, I have tried and will continue to try to make each day count. I will try to live without regret. I will try to teach others the lessons that my son taught me. I learned more in 6 weeks than I will teach in a lifetime.

That day

I always thought that today, the first anniversary of Alex's death that I'd have something extremely profound to post here. I don't. So I'd like to just remember for a moment. Remember a day that will be hard for me to remember and hard for you to read.

I knew. I knew days before. I don't know how I knew but I did. I talked to my friend Brandy on Monday about it. I kept telling myself that I was being stupid, he'd be fine.

I saw so many other babies get better. I saw their chests closed, I saw thier mothers hold them.

I felt the need for the other kids to come and see Alex. That didn't happen because they got sick. I so badly now wish they had.

That day, that phone call. Hearing those words "Alexander has taken a turn for the worse, please come" I knew then. There's something strangly frightening in those things you know without being told.

I ran. I ran through the snow until I couldn't breathe. I ran some more. I ran into the hospital and waited for an eternity for those stupid elevators. I ran through the halls....... I wanted to run the other way. I got to the unit and I took the back way to his room, subconciousely I knew if I ran past the desk someone would try to stop me. I needed to go in there, I needed to see.

I ran into the room and saw 2 of our doctors standing on either side of Craig. I'm not sure if the room was silent or if I just wasn't hearing the chaos that was going on, I don't remember hearing anything. It must have been loud though because I had to holler Craig's name 3 or 4 times before one of the doctors heard me, I was standing right next to him.

I didn't look at Alex's bed. I asked if he was coding and was told yes. I had always envisioned breaking down hearing words like that, I was running on pure adrenaline I guess because I was very matter of fact about it.

They wanted more tests. We all knew it was futile. I'm glad we did those tests though.

We go back into Alex's room. The nurse is doing chest compressions. I look down at his little body and see his chest ripped back open. I can see the metal clips holding his sternum together. The mama bear in me took over, stop hurting him! I looked at the nurses teary face and told her to stop, she looked at the dr who nodded his head and lifted her hands off his chest. I kissed Alex and told him I loved him, so did Craig. He was already gone, his soul was gone to heaven long ago. Someone turned the monitor off. That monitor had been my lifeline for so long, my information station. The only real consistant thing I had, that was probably the most real thing, seeing that monitor go black.

I sat down and she put Alex in my arms. The most primal emotions took over and I cried like I have never before in my life. I wailed, I couldn't breathe. So many thoughts filled my head and then were replaced by new and sometimes conflicting ones in seconds. I was strangely relieved. I kept saying in my head "it's over, it's finally over" and then guilt for thinking that would come. For once his peace didn't come from a medicine pump, his chest didn't forcefully move up and down in the unnatural way a ventilator breathes. He was at peace, for the first time ever.

they asked if we wanted a private room. I couldn't bear to move from HIS space. I felt like if we moved then that started the change and I wasn't ready for the change just yet. I needed to do it slowly, one step at a time.

Telling the kids was excrutiating. Watching their hearts break in two. Watching them hold his tiny body. Shaylin's words "momma he's cold" will ring in my head forever and ever.

I wanted to stay forever and hold him but I coudln't. The physical changes were setting in and I didn't want to remember him that way. I said goodbye and laid him on the bed that he had laid on for the past 6 weeks, in his little blue pajamas and hat, the only clothes he'd ever worn. I turned around and walked away. I walked away from him. I had always refused to leave the cities without him, and now I had to.

I left a peice of my soul there too.

Home away from home

So I went to the hospital yesterday. When we pulled into the ronald mcdonald house lot I started to panic and shake and couldn't even park. I started to wonder if this was maybe a REALLY bad idea. I had my friend park my truck for me cause I just coulnd't do it and Tyler's mom let us in.

We went to the hospital and our favorite nurse Susan was Tylers nurse that day. I was soooo happy to get to see her. We chatted with some of the staff and I really did good seeing everyone, I didn't lose it or anything. It was strange because for the last month I've felt like we left Alex there, that was his space but walking back in there it wasn't...... it wasn't his space anymore. I didn't have that stress knot in my stomach or anything and didn't even feel the urge to look into his old room.

We spent some time there at the hospital and I was really upset to learn that Gracie had died, she was our roomate and had TOF/PA as well and was back for her second surgery. Her family made some awesome t-shirts and left some for the kids and craig and I, they say Kardiac Kids on them. really nice.

I later learned that of the 6 heart babies that were there, 4 of them died in that same week, Alex was first. Only 2 are left, Tyler and Luke. My heart breaks for thier families, especially Gracie's parents because they were in our room that day, hearing everything that was going on with Alex's death, her dad comforted Craig that day, and then had to repeat it with thier own daughter days later....... they are such wonderful people too:(

Later on we went back to the rmh and I was really surprised to see a family still there that we had gotten to know. I thought they would have gone home already and it was nice to be able to talk with them again and thier son had become good friends with Shaylin and Jacksen and I was able to get a picture of him for them.

I'm really glad I went. And really glad Craig didn't. Not that I don't want him to go but it was my time to go, I needed to and he wasn't ready. When he's ready he will go.

I think it was very healing to me and really put some closure to things. I now feel Alex all around me where I didn't before because I just always felt like he was THERE. Seeing for my own eyes that he isn't is what I needed to do.

I terribly miss everyone there though. I told people that if I lived closer I'd probably just loiter all the time. It was so nice to get to chat with Susan again, makes me miss our days of just spending the whole day together, she really is a wonderful person and I am grateful for her and so many others for doing what they did for us, and for Alex and so many other families.

Death certificate

I was doing better today, until I got my mail.

Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.

What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.

I was shaken, but somewhat ok until I read

Primary cause of death: Metabolic Acidosis hypotension

Other primary: Suspected Sepsis

Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia

Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.

The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .

So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.

A month ago.....

A month ago, at this very moment I was kissing my son goodbye for what I thought was the night. I remember I didn't kiss him directly on his head like usual because Jack had a sniffle a few days before and I didn't want to give anything to Alex so I used the foam sanitizer and then kissed my hand and touched his head. I said 'see you tomorrow angel boy' and left. And that was the last time I saw him alive.

This last month has seemed like an eternity. It's hard to beleive that it's only been a month, it seems like so much longer.

Today I brought him his easter presents. A thomas the train toy that I had promised him when he was in the hospital because I knew Jack wouldn't share with him, and a little bunny that said 'my first easter' on it. Oh how I wish he was celebrating easter with us.

Thank you to whoever put the little baby sized easter eggs out there for him, they are adorable!

Should I go or should I stay?

Well I went today after all, I just couldn't not go when it was my moms birthday. Instead of going to Chuck E Cheese though we went to the Como zoo.

As I was driving along I-94 and our exit came up, I had this insane urge to just keep on going and go to the hospital. I mean such a strong urge that I almost missed my exit completely. But I got it together.

So I take the exit and my cell phone starts ringing. I wasn't going to answer it because I am quite a danger to society if I drive and talk at the same time, but I just answered it anyway. Turns out, it was a mom of Alex's old hospital roomate, the docs use to call our boys the 'wonder twins' because they were born within a week of each other, had the exact same diagnosis, and pretty much followed each other's course of treatment, complications and all.

We chatted for a few minutes about how Tyler was doing, how we are doing and all that.

So now, I have this insane urge to visit. I really really REALLY miss it there. I miss the house, the hospital, the staff, hell even sometimes I miss the nasty cafeteria's 'is this really meat?' burgers. It feels like we just left such a HUGE part of our life at that hospital. We were forever changed inside those walls, like a factory where you go in and they completely remake you, and you go out the door headed for the big new world a different person.

I'm worried though. Will going there, seeing Tyler and Luke and all the nurses and stuff completely undue any healing I've managed to accomplish? Or will it help me to finally put it all behind me once and for all?

That is the question.......

A peice of our hearts left earth today

Alexander passed away today. Craig called me from the hospital at 11-ish and told me that Alex's chest x-ray had come back better (his right upper lobe was cloudy last night) and that he had one blood pressure dip and they got it back up.

About 10 minutes later I got a phone call from a nurse saying Alex had taken a turn for the worse. After running in my pajamas through the snow to the hospital I walked into his room and there were many doctors and nurses. I asked if he was coding, and they said yes. A couple ofo his doctors took Craig and I to another room and said that they were waiting on the results of an echo and x-ray. We all knew they wouldn't show anything that could be fixed, Dr D was even tearing up. They said to give them 5 minutes and Craig and I went to call some family.

We came back into his room and as expected they told us that the tests hadn't revealed anything. We went to his bedside and told them to stop chest compressions. We kissed him and told him we loved him and it was time to go.

The staff was wonderful. We got to hold him right away and after a few minutes I asked them to please take the breathing tube and chest tubes out, we wanted to see him without all of that junk for the first time since the day he was born. A staff member of the Ronald Mcdonald house brought the kids up.

We all made handprints and wrote a little message to Alex on the posterboard, the kids all held him and said thier goodbye's. They let us stay as long as we wanted.

We got to bathe him and dress him in one of the outfits we had bought for him, they made a plaster mold with his hands holding our fingers and his feet. They made the whole thing extremely special and as easy as possible for us and although this is probably the hardest day of our lives, we will always cherish the love and sincerity of the staff at U of M. I know his caregivers loved him and allowed us many nights of sleep because we trusted them.

Thank you everyone for the outpouring of love and prayers you've sent. Alex definitely fought and is the smallest yet strongest person we have ever met. And we are very proud of be able to call him our son, even if God needed him more than we do.


UPDATE: The services for Alexander will be held on Tuesday March 21. Veiwing will be at 9am and service at 11am. at Chetek Lutheran Church, 1419 2nd street Chetek Wisconsin 54728.

If anyone would like to donate in honor of Alexander, please do so to the Children's heart foundation at

http://www.childrensheart.org

which will use your money to further research ways to help kids with congenital heart defects.

or to the Ronald Mcdonald Charities at http://www.rmhc..org