A walk through the valley

Integration

2009-04-08T15:45:00.000-07:00

Since I'm now far more comfortable in sharing my journey with the world, I'm posting exclusively on my main blog. Alex's death is not a separate thing from the rest of my life, it's a huge party of it and I need to put those peices together to continue to move forward.

If you've received a random act of kindness card in memory of Alex feel free to tell us about it by clicking the link below and commenting on the first post you see! It warms all our hearts to hear about the people Alex's story touches.

www.momofmany.com

Please come on over after you've read Alex's story.

And he lives on

2009-03-29T14:47:00.000-07:00

A few weeks ago the hospital I worked for announced that they were looking for stories for the WHA "Employee pride" program. The stories should be what brought you to healthcare. Of course I wrote about Alex, since he has been what has directed every day in the past three years of my life and I won! The family and I get to go on a trip to the Wisconsin Dells for a couple days of waterpark fun in May!

I thought I'd share the story with you:

In 2006 my son was born with a devastating set of heart defects. We spent the entire 7 weeks of his life in the hospital fighting for every breath he took.

Shortly after his death I was given the honor of attending the passing of another baby we had known. That day I realized that although I could never get back what was lost the day I held my son for the last time, I could carry his spirit on with my hard earned knowledge and understanding. As I held this child’s tiny body in my arms and looked into the eyes of his mother I felt the deep connection we now shared. Our stories were forever altered and had taken the same fork in the road.

I left that day and knew that through this experience my son was asking me to carry forward the compassion and empathy that few people can truly have. I couldn’t spare my children the pain of learning their brother had died, and I couldn’t alter God’s decision to take my child, or the family members of others home. But I could take the hand of a stranger, look into their eyes and in a silent moment share their pain and give them the hope that it is possible to survive and move forward.

And so I went into healthcare. I currently work in admitting and am in school for my Medical Assisting degree. Every day I bring a little bit of my son with me. A child who lived until we were strong enough to let him go and gave more than he ever took with him. A child who taught me that some people are born with special hearts, the rest of us have to work at it.

I've also been putting some ideas together in continuing to spread Alex's message and of course this blog will be the hub of that effort.

A few months ago we were fortunate enough to be in a position to preform our families largest Random act of kindness to date. We purchased a handheld Nintendo game system and 2 games for a little boy in the store we were shopping in. It was so much fun to see him walk out with the games with his little face lit up like Christmas morning!

More to come!

Oh Alex

2008-10-05T13:28:00.000-07:00

You've been on my mind so much lately. I've started a new job at the hospital and talking about you with co-workers has been difficult. I'm not sure why, I've never found it difficult to talk to you before.

Last week the NICU team from Marshfield came to get a newborn from the nursery and I felt such a huge lump in my throat watching them walk past with that tiny incubator. I remember seeing you in what could have been that very same incubator and saying goodbye to you as you left for your journey to Marshfield that night, uncertain if I would ever see you alive again. For a moment I felt a connection to that mother upstairs I didn't know, as I knew how she was feeling watching her own tiny baby dissapear down the hall.

I miss you so much. It still physically hurts in my chest sometimes. Feeling like I might suffocate under the weight of it all. Then there are times I cannot comprehend it really happened, I replay the memories in my mind like a movie I watched a long time ago.

I love you bubba and what I wouln't give to hold you just one more time.

~ momma

Not fitting in

2008-08-17T10:40:00.000-07:00

Remember the first day of school? I know, wayyyy back for some of us. Ok, maybe just me. Remember not knowing anybody? Remember finding someone who you thought you had things in common with just to find out that they were so very different than you? Remember feeling like you didn't know if you'd ever fit in?

That's where I am. As some of you loyal readers know, this journal has moved around a bit. It has evolved and downright changed sometimes. It went from caringbridge to another blogger spot then merged with my family blog. It just never felt 100% right.

Then I started writing my book about Alex's life. The title of the book started out "Broken dreams" but in writing I realized that it wasn't about broken dreams at all, because when something breaks it's no longer useful, it's lost it's purpose. Alex's life and death have always been very useful. Him being born broken wasn't the end of the purpose of his life and his death wasn't either. It was a journey.....

So, the title of the book became "A Walk through the valley" one night. We did walk through the valley of the shadow of death in a very real way. But that walk THROUGH means we came out the other side, or at least that we have the ability to do so someday.

So here we are now in a new space. A space that feels very right with no agendas and no plans. Just living, dealing, and becoming the new me at my own pace. No censoring my feelings in fear of what people might think.

I'm Kat, my son is in heaven. I miss him terribly and some days I'm not sure how I got here or how I'll move on. Take me as I am.

The Lord is my Shepherd; I shall not want.He maketh me to lie down in green pastures:He leadeth me beside the still waters.He restoreth my soul:He leadeth me in the paths of righteousness for His name' sake.

Yea, though I walk through the valley of the shadow of death,I will fear no evil: For thou art with me;Thy rod and thy staff, they comfort me.Thou preparest a table before me in the presence of mine enemies;Thou annointest my head with oil; My cup runneth over.

Surely goodness and mercy shall follow me all the days of my life,and I will dwell in the House of the Lord forever ~ The 23rd Psalm

In a better place

2008-08-09T09:59:00.000-07:00

I think I'm in a better place today. Some days those feelings just come on so strong and I just have to feel them and let them happen. Writing about them helps, helps me process and figure out what exactly I'm feeling because sometimes it's all a jumbled mess of anger, sadness, and fear.

I think I'm probably going to have those days forever. And that's the way it is. That's the life I lead now. All I can do is be stronger than the sadness, stronger than the fear and anger. All I can do remember where I came from in my faith and remember why I don't want to go back there.

Thanks Tawnia for the comment. I love footprints. That made me smile.

Alexander's photo slideshow

2008-08-08T17:41:00.000-07:00

Photo and video editing at www.OneTrueMedia.com

Is any of it real?

2008-08-08T15:29:00.000-07:00

I'm having a really bad day. A day where you know what? I'm tired of telling everyone it's ok and that God loves us and all that bullsh*t. What the hell kind of God takes someone's child away? And he does this EVERY SINGLE DAY. Not a day goes by where somewhere in the world someone's precious child isn't ripped from their arms. What kind of God lets that happen?

Sometimes I try to convince myself that it's not God that does this, it's satan instead. But really, if God is so much stronger than satan to be able to cast him into hell for eternity, isn't he tough enough to stand up to him and say no to childhood death? And if he's not, is he really that powerful at all?

I read these blogs of people who have lost a child but just continue to worship God and at times I am in awe of their faith and at times I want to grab them by the head and shake them and ask them who they are kidding. Maybe God is just an excuse we hide behind when bad things happen so that we don't have to face reality. Maybe our little bitty psyche's can't bear the thought of never seeing our children again so we cling tightly to that story the pastor told us about heaven. I think this might be true because in reality the bible says that earthly people won't even matter to us when we get there, that we will simply be in awe of the presence of the lord. So why do we talk about seeing our children in heaven? It doesn't even make sense!

I try to beleive, I try to keep my faith. I try to understand but the big man upstairs doesn't seem to be giving me anything that I need to understand. I've asked for help, I've asked for answers. I haven't gotten any. Sometimes I think if there is a God that he has some twisted and sick sense of humor to sit and watch so much suffering. Even the most uncaring people in the world usually couldn't fathom watching a child suffer in a hospital room with his chest ripped open, or slowly die from cancer, yet God does it EVERY DAY! What the hell?! And then as parents we are suppose to thank him? We are suppose to worship him? Hey dude, thanks for making pain the only thing my child ever knew and then making sure the rest of us knew what pain was too.... how nice.

Today my faith is tested. I'm tired of praying to a God who never seems to answer.

That knot

2008-04-04T12:05:00.000-07:00

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.....

I failed

2008-01-30T15:40:00.000-08:00

Monday was Alex's 2nd birthday. I failed at it. I had planned this whole thing, bringing helium balloons out to the cemetary and tying notes to the strings from the kids and Craig and I and letting them fly to heaven, much like we did at his funeral. When the day came to actually do it, however, I froze. The thought of going to the cemetary became overwhelming to me and I just couldn't make myself do it. What the hell my problem is I don't know. I haven't been there in like a year and a half........ A YEAR AND A HALF! Seriousely, what the hell is the matter with me?

The pit

2007-11-21T15:39:00.000-08:00

The day my child died, I fell into the pit of grief. My friends watched me struggle through daily life, waiting for the person I once was to arise from the pit, not realizing "she" is gone forever.
The pit is full of darkness, heartache and despair, it paralyzes your thoughts, movements and ability to ration. The pit leaves you forever changed, unable to surface the person you once were.

Some of my pre-grief friends gather around the top of the pit, waiting for the old me to appear before their eyes, not understanding what’s taking me so long to emerge. After all, in their eyes, I've been in the pit for quite sometime. Yet in my eyes, it seems as if I fell in only yesterday.
Not all of my pre-grief friends are gathered around the top of the pit. Some are helping me with the climb out of the darkness. They climb side by side with me from time to time, but mostly they climb ahead of me, waiting patiently at each plateau. Even with these friends I sometimes wonder if they are also waiting for the pre-grief me to magically appear before their eyes.
Then there are the casual acquaintances, you know the ones who say, "Hi, how are you?" when they really don't care or really want to know. These are the people who sigh in relief, that it is my child who died and not theirs. You know...the "better them, than me" attitude.

My post-grief friends (and a rare pre-grief friend) are the ones who climb with me, side by side, inch by inch, out of the pit with me. They are able to reassure me when I need reassurance, rest when I need resting, and encourage me to move forward when I don't have the strength. They have no expectations, no memories and no recollection of how I "should" be. They want me to get better, to smile more often and find joy in life, but they also accepted the person I've become. The "person" who is emerging from the pit.

Author Unknown

Bitter old hag

2007-11-18T15:38:00.000-08:00

As I've been sitting here for the past little bit reading some caringbridge sites of kiddos we either knew when we were in the joint, or who we have come to "know" through those we knew I have been reflecting and thinking about me, my positions on things...

I notice I've been bitter lately. Lately being the past couple years or so. Alex would be coming up on turning TWO now you know. TWO! It astonishes me that 2 whole years have nearly gone by... anyway back to my point.

I've been bitter, I've been angry, I've been downright pissed off. But you know what? Who wouldn't be? I have to talk to people, see people, and hear about people who take what they have for granted. They go about their day. They go to work and spend 2 hours a day with their families and somehow that is ok. They just don't realize how quickly EVERYTHING can be gone.

I'm simply sick and tired of people who take it all for granted. Every single morning I wake up and nearly cry because my kids are still here for one more day. Every night I go to bed begging God to give me another day. I have learned the hard way that people don't stay here forever. So many people don't think they take it for granted but they DO. You can see it in their day to day lives.

I guess I get so angry about certain issues because I know what it feels like to just wish you had that 1 more day. I wish I didn't need to sleep during those 7 weeks, I wish I didnt' leave him for a second to eat, use the bathroom, whatever. But I did. Those things I really did HAVE to do. People walk away from their kids every day for things they don't HAVE to do and I can't fathom making that choice.

People worry about such stupid shit. They worry about sports games and shopping and if their dry cleaning will be ready by 5. Why? What the hell does any of that stuff matter? It consumes people's lives and I can't figure it out. WHO THE HELL CARES?! Is your home standing? Is your heat working? Is your family safe and healthy? Then get down on your damn knees and thank the lord above.

It's just really frustrating. Yep I'm angry and bitter and all that other stuff. But I'm grateful and happy too. I don't take one minute for granted anymore. It's been said that I am a changed person since Alex died. Well of course I am! I'm a whole lot different than I use to be. I know I've become a lot less tolerant and likeable. My mission in life isn't to make everyone else happy, i'm sorry to say. It's to make my life and that of my family the most rewarding it can be.

I'm still learning. I'm learning who I was, I'm learning who I am, and I'm learning who I want to be. Forgive me if I confuse or anger you in that process but it's a ride you can't join me on. It's a ride that won't be over for a long time and maybe I'll never figure things out. You have the choice to ride it beside me or to stray away. I don't have any choice in the matter but you do, use it. Don't pretend, don't patronize, and don't make my grieving/learning/growing process about you, it's not. It's about me and it's a very difficult path to follow because there's never a straight line........ the path zig zags, loops, and sometimes just simply turns around and goes back where it came from. All I know is that for right now I am sorting things out and I am keeping those close to me as close as I can.

Life aint always beautiful

2007-10-07T15:37:00.000-07:00

Isn't that the truth. 2 children who's websites I frequent died yesterday. They both had a brain tumor called a diffuse pontine glioma. It is inoperable and treatment is aimed at slowing it's growth. The average life expectancy is 6-12 months.

This morning Hailey and I were talking about hard subjects, as we frequently do. We talked about Alex and how he fought so hard to be here and how people aren't always perfect but sometimes the least perfect have the most to give. I wonder sometimes what the greater plan is for us all. The why's are so difficult to deal with sometimes. I don't think I will ever understand why Alex died. I don't know that any parent who loses a child ever gets that moment of clarity.

I think about all the children who are simply denied the chance. The babies who are lost to "medical termination" upon their parents finding out they have down syndrome, or some other abnormality that makes them "less than perfect" in the eyes of the world. It makes me angry. I wish I had my disabled child, I WISH I could push him in a wheelchair, I wish I could hug him, kiss him, and sing him to sleep.

I am comforted in the fact that we did everything we could. He was in an amazing hospital and every medical opportunity was available to him. We could have "let him go" as some would have. HE chose when it was time to go, I'm grateful for that.

Every one of us is less than perfect in some way. If we ought to abort a baby because it's not "normal", where is the line? Aborting one who has a cataract? who will need a brace for scoliosis? And when is the line drawn? If they are taken before birth it's ok, but when will we start moving on to sacrificing 2 year olds who contract a disease? I just don't understand how we think we have the right to decide who lives or dies. It doesn't make sense.

I was once reminded that God gives us free will, but he also gave us a brain. But did he intend us to use that brain to make decisions best left to him? Where is THAT line? You have to draw it somewhere.......... so where?

I struggle with these questions. A few days before Alex died I finally broke down completely and relinquished control to the lord. Right there in front of the dormatories of the University, in front of the busy hospital. I'm sure I looked like a lunatic but the weeks of what felt like running through water finally caught up with me and I had nothing left to give, I had no fight left in me. I told God he wins, I give him control. It was then that the put my son out of his misery. I never gave up on Alex but I gave up my selfish fight for him with God.

Some people don't understand the decisions C and I make regarding our family. It's difficult sometimes because it would be senseless for us to learn the lesson we did, to give up control, and then try to take it back now. But what does God intend for us to have control of, and what does he solely take control over? I just don't know.

To some people it's all so simple. It's just not for us. I don't think things will ever be simple again. Things use to be so simple even though we didn't realize it, now the seemingly smallest things just aren't anymore.

It's exhausting sometimes. This post probably makes no sense either hehe, it's one of those that I'm just typing as I'm thinking so I apologize for that. It's one of those more for me than you kinda posts.

Post traumatic stress

2007-09-16T15:36:00.000-07:00

Why do some kids get thier miracles and some don't? I don't know that I will ever understand that. I find myself envious of people who get it. It's very strange to read the story of a kid who made it back from deaths door and have this strangely sad feeling. Most people read stories like that and feel better about life, I do not.

I've been trying to get myself back in my "happy place". I tried to find a counselor to talk to and none are taking new patients that my insurance covers...... it figures.

Many people don't really know this about me but I've had Obsessive Compulsive Disorder since childhood. (I know, if you've seen my disaster of a house you are really surprised huh?) And it's really flared up again. I almost don't even notice it until I'll be instinctively making all the vents in the car perfectly straight or something and Craig will just mess them all up and tell me it's OK if they don't all face perfectly forward...... no it's not! hehe We joke about it a lot because it's really just stupid things like that, but it's just the overwhelming need to have certain things perfect. Hard to explain.

It's not just silly things either, the obsessive thoughts are what is debilitating. The "death monster" that I spoke of before. It's like if I don't do the "rituals" then something bad is going to happen. You'd think people with OCD would live in immaculately clean surroundings. That's not really true. The silly rituals get in the way of things and some days you can spend hours just making sure every sock in the drawer is folded the right way, that the other stuff doesn't get done. So while my house may be a rat trap, there is something that is perfect....... dumb eh?

Anyway. I'm working on it. I go back and forth with it getting bad and then it becoming nearly nonexistant. Now that i've realized that's what this is I just have to recognize it and deal with it and get it to regress again.

But for now, don't mess with my vents! hehe

When reality isn't

2007-09-04T15:34:00.000-07:00

In a wierd way, i've spent the past almost 18 months in a sort of denial. To ask me I would have vehemently swore that I was not in denial, I was coping the best way I could. But I was/am.

I don't think i've ever taken the time to totally process. When Alex was born and got sick, those weeks were such a constant roller coaster. There was never any downtime to think. I never had the chance to really say "Ok, my child was born gravely ill, this is our reality"

After he died, we threw ourselves into things, we got pregnant with Nathan, again, never taking the time to process. To really accept that our child died.

Now that things are leveling out. I find myself realizing that my child was born, he was critically ill, and he died. HE DIED! I read stories of other kids who have died and I feel such a deep sympathy for thier families, it's like I don't realize sometimes that I am one of them.

I remember the Monday before Alex died, the day when the inate "knowing" took over and without being told, I knew he was going to die. I remember making the kids lunch and crying that whole day. Hailey asked what was wrong and I just blurted out "I think Alex is going to die"..... I felt SO bad about saying that, watching the tears well up in her eyes. Yes he had taken a turn for the worse but there had never been a time when anyone said to me "you know, Alex probably isn't going to pull through". I started to question myself. Why would I say that to her?! A child!

That afternoon at the hospital I talked to the child-family life specialist and I didn't tell him that I had told Hailey that, but he said something to me that made a ton of sense. He told me that the worst thing I could do is hide from my kids. They KNOW when something is going on without being told and if you don't say anything, they get scared and upset. If you say it, then at least they know what's going on. You see, kids have a great way of making other people's problems about them. Not that they are selfish, they just always think that if an adult is upset it's somehow thier fault. So by saying what I said, Hailey knew that I was upset about Alex, and it wasn't her fault.

This grieving process. It's hard to get a handle on. There is no right or wrong way to do it and that makes it extremely difficult to know if the things I do, my coping mechanisms, are they normal or abnormal? Am I grieving in a "healthy" way, or not?

I suppose I'm greiving in my way. And that makes it the right way. I just wish someone would come along and tell me how I can put this behind me....how I can understand.

He's been on my mind a lot more than usual lately. It struck me odd the other day when I saw a kid who had a feeding tube and the mom was tending to his needs. I got sad and thought how I wish I had the opportunity. Who WISHES for a sick child? It's so strange, like I was robbed of being mom to an Alex who would have been normal and healthy, but then I was robbed of an Alex who was sick and needed such indepth care. I had prepared myself for spending the rest of my life tending to his needs with medications, doctor visits, surgeries, procedures. And I'm grieving THAT too. I guess anything you prepare for and dont' get is a loss.....

The death monster

2007-08-08T15:33:00.000-07:00

Today I'm struggling. I'm fighting back the tears. I have sat here all day feeling like there was something I needed to do but I can't figure out what it is. Slowly it has crept up on me, the sadness.

I feel like I missed my opportunity to grieve. I shoved it all away for so long and now the people who were once there don't even know I still struggle as much as I do. I can't bring it up to Craig,. I can't make him sad.

So I deal with it alone. It isn't fair that I have to live every day in panic. Have you ever had a panic attack? Try having one for a year and a half straight and not telling anyone. I really don't know how physically I can keep going on like this, honestly. Stress isn't good for anybody and the constant unrelenting stress all day every day............ oy.

Yesterday we were at the grocery store. Nathan was in his new shopping cart cover (I've become a germ-a-phobe) andhe got tired so I laid him down it in on h is little matching pillow. Craig was pushing and I looked over from my shopping list and in my mind....... he was in a coffin.

I feel like there are these death monsters beating down the door all the time. Just waiting for a chance to come in and steal me, Craig, or one of the kids away forever. Nathan is sleeping.... is he breathing? Jacksen has a leg cramp.... is it cancer? Christian is tired today...... is he gravely ill? I have a headache...... is it a tumor? I have to go to the store, but I can't go because it's Saturday evening and there might be a drunk driver. I need a filling, the lidocaine makes my heart race..... will I have a heart attack? Craig has a cold....... is it lung cancer?

Can you imagine living life like that? That's an ALL DAY thing for me.

I'm tired. Physically tired, emotionally tired.

UPDATE a few hours later:

I think I just need to continue to use this journal sometimes just to rant and vent and cry. Then I can pick up and dust off .I have felt a lot better since I posted this entry. I am going to make an appt in the morning with a counselor. Maybe they can't help me, maybe they can't understand.... but maybe I need one place where I can just be REAL for an hour a week..

A new beginning

2007-06-29T15:30:00.000-07:00

I stopped by to check the guestbook entries and saw Trista's entry and cried. Some days I yearn for that moment of healing........ that moment that the hole in my own heart closes just a little and then I realize that it closes a little every day. I don't have a "superman" scar that people can see, but some days the scars are covering my entire being.

I always knew that our experience was for a reason, I think that I thought that one day someone would just knock on my door and tell me what I was suppose to do with it. God and I have many conversations about that. I have trouble reading between the lines and seeing the rainbow for the clouds sometimes.

Every day that I have lived since the day Alexander was born has been a new day to do something with my life. In the past year and a half I have had to rebuild myself and I still sometimes wonder if I ever will be a complete person again. I have gained confidence, I have gained tremendous knowledge and compassion, yet I have lost such a part of me that I can't get back. I am just now realizing that maybe I don't need it back. Maybe Alex's illness and death was my rebirth. Maybe I got the opportunity to start new in life, that's a very liberating idea.

I'm different now. At first I resented the stares, the saddened looks as people glanced my way. Now in a way I cherish that. When Alex died all expectations that I put on myself of what I thought I needed to be melted away and I was given a chance to become anything I wanted to be.

I think I have come a long way in that venture. I think I'm a good person now. I didn't always feel that way. I can look at myself in the mirror and although I've aged physically this past year, I like what I see. I see a woman who has finally become something. I have finally gotten my career where I want it to be, I have finally become the mother I wanted to be.

I don't think I've dealt with it all in ways that were expected. I think you have a choice, you can lay down and die or you can realize that quite honestly the death of your child is the worst that life can do to you..... I've survived it and that means I have the strength to do anything. I refuse to lay down and let my spirit die.......

Every mother's nightmare

2007-06-26T15:31:00.000-07:00

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

2007-03-16T15:29:00.000-07:00

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.

Happy Birthday Alex

2007-01-27T15:27:00.000-08:00

One year ago at this very time my body began the process of birthing you. As I sit here holding your brand new brother in my arms I still hold a hurt in my heart. All the hope and joy we felt one year ago still haunts me. We had no idea what a roller coaster ride we were in for and today it's all very surreal.

Thank you Alex for helping your brother into this world safely. We can see your spirit and determination in him already. Thank you for the gift that you and god gave us. A part of you lives on...

Happy birthday sweet boy. I love you and miss you to the depths of my soul.

A poem from mommy

2006-07-09T15:25:00.000-07:00

a little something I wrote.

Sometimes........

Sometimes I am scared, scared that I will lose again, scared that my memories will slip away.

Sometimes I am angry, angry that such a beautiful person was taken too soon, angry that I didn't get to watch you grow up.

Sometimes I am grateful, grateful that we had those weeks with you, even though we couldn't hold you, you were there within our grasp showing us wonders that we had not yet been worthy to experience.

Sometimes I am sad, sad because I miss you so much my heart hurts.

Sometimes I am guilty, guilty because I might have been able to change things if I had only known

Sometimes I am happy, remembering how your strength and spirit filled the room, seeing you do it your way regardless of the "rules".

Sometimes I cry, I cry tears of sadness, I cry tears of heartbreak, and every now and then I cry tears of gratitude.

Sometimes I hope. I hope that I was a good mother to you even though the obstacles made it difficult for me to be a proper mother. I also hope that I can be half the person you were.

There are a lot of "sometimes". But there is one "always" and that is...... Always I will love you.

I know that time in heaven goes so fast, by the time you turn around to see if I am there with you, I will be. You feel no pain, you feel no fear. When I look up at the night sky and see that one brightest star, I imagine you sitting on it looking down on us and giving us your strength that we can go on without you. I may never understand, but at least I can wake up each morning knowing that nothing can ever take you from my heart.

I love you Alex, and I misse you terribly. For once in my life I'm not afraid to die, when it's my time someday I know that I will forever be with you again.

One direction or the other please

2006-07-07T15:23:00.000-07:00

Things seem to be getting harder for me and easier at the same time. I don't know how or why. Yesterday we went to our first midwife appointment and since it was my birthday the midwife agreed to let us take a quick peek with the ultrasound machine since it's far too early to hear the heartbeat with the dopper. The machine they have in the office there is ancient, and not very good and for a while we could see the baby, but no flicker of a heartbeat. I stared at the screen, willing that little heart to show it's presence.......... and then it did! Such a relief.

So why do I feel sad? I feel sad that this isn't Alex. I feel bad that I find myself thinking that another baby couldn't possibly ever be as special as he was. I feel bad that I don't know if I can bond with this baby because I'm afraid he or she will be taken too.

I don't feel good physically. I feel weak. I feel like something is wrong inside my body and I find myself always fearing for my own life. Something IS wrong with my body...... my heart is broken and I'm not sure it will ever really heal.

Grieving my child is something I could not prepare for. Initially not even as much as now. See at first people expected me to be a basket case. Now.... it seems people expect a person to just kind of get over it in a way, move on. It's so difficult to do that. Part of me never wants to move on, to get further and further from our lives with Alex. I am losing my memories, a little at a time and sometimes it just feels like it never really happened at all. I mean in so many ways it's like this past year never happened, because our lives by all outward appearances are exactly the same as they were a year ago. 5 kids, expecting another, Craig working his tail off, me trying to keep things running smoothly and struggling with the constant changes that having children brings. The only difference really is we have pictures on the wall of a baby who we never got to know, we live day to day with loss on the inside, while being "normal" on the outside.

Kids and grief

2006-07-02T15:22:00.000-07:00

Wow, what a pity party that last entry was eh? Jeez Kat. I'm told I'm allowed to have pity parties now and then so I guess I should just take advantage of my right to whine and do it every so often.

I really am unsure if I've accepted things though. I've decided that after the holiday I'm going to call and make an appointment with the family therapy services. There just isn't any reason not to. If not for me, for my kids.

It seems that the kids' grief is rearing it's head now. It's really a learning experience. Kids do grieve differently than we do. Christian has been pretty teary lately and when prodded he admits he misses Alex. It's hard for Craig and I to ask the questions we need to and get to the bottom of things with them because our kids hurting so much is pretty hard for us to bear. So it's time to talk to someone.

It's really strange how the grief changes and evolves. In the early weeks you are under this fog and it's difficult to remember, to think, to process thoughts at all let alone difficult ones. That fog very very slowly lifts and then I've had a period of "I'm ok" You feel a bit empowered, because you know you have just experienced the worst emotional hurt possible in this world, and you survived it.

Now, the fog is gone the acute pain has gone. But now the questions rear thier ugly heads. Replacing the acute pain is a dull ache that won't go away. You don't feel quite so empowered anymore because you aren't entirely sure what life is for you now.

It's all just impossible to put into words because I struggle to understand it myself.

Nothing makes sense

2006-07-01T15:21:00.000-07:00

Sometimes I wonder if I'm just not in a huge state of denial.... I don't visit the cemetary and I'm starting to feel insanely guilty for that. Maybe it's because although I think I've accepted it, I really haven't. In so many aspects I'm still living Alex's life........ maybe I have yet to realize his death?

Lately the whole thing has just seemed kind of surreal. Like there's no possibly way all this has happened. I feel like it was this crazy dream, one of those dreams that haunts you long after you wake up even though you know it was only a dream.

Maybe none of this makes any sense. I don't even thing anyone reads this journal anymore so I'm thinking about discontinuing it. Why should they read it? The adventure is over. The excitement is over.......... all that is left is............ I'm not sure what.

A real baby

2006-06-30T15:20:00.000-07:00

Last night I had a dream that I was running around this big city and I couldn't find my way. I was afraid, lost, but refused to give up. I woke up and kind of chuckled how that dream so truly reflects the past 5 months.

It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.

I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.

Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.

Well, the work is never done!

The blame game

2006-06-25T15:19:00.001-07:00

I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.

Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...

Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.

I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?

That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?

In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.

I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.

The blame game

2006-06-25T15:19:00.000-07:00

Stolen innocence

2006-06-23T15:17:00.000-07:00

Upon learning that children will be soon having a new sibling, most kids will speculate as to whether the baby will be a girl or a boy, or in the case of Shaylin, will declare her hope that the baby will just simply be cute. However my children, instead now just say they hope the baby will be healthy.

Innocence is something we take for granted with our children. We watch them learn and marvel over butterflies, the moon, clouds and take simple joy in thier experiences. It's very difficult when a part of that innocence is taken from your children, through no fault of anyone it's gone, forever.

I first became aware of this at the Ronald Mcdonald house when one day as I was sitting by the fireplace watching Shaylin and Jacksen play with thier little friends, I witnessed a game that both interested and saddened me. The game involved a baby doll and the children played out the scenario that the baby was sick and needed an ambulance, when the ambulance arrived these children, the oldest a mere 6, began putting "lines" in the baby and instructing each other on life saving measures.

My children now worry about things that are far beyond the imagination of most children. They worry if thier new sibling will be healthy, if he or she will live. They confront thier own mortality...... if babies can die, then children can too. They now know that people die and go away forever, aside from Jack who insists that every pair of baby shoes we see at the store would looke insanely adorable on "baby wex".

As sad as it is, there are also blessings involved. My children have a much greater appreciation for thier safety and thier lives than most other children. The families and special children we met at the house have shown them that people may not always be like them on the outside, but that's ok. They don't see things in black and white anymore. The fact that they know that nothing is forever, makes them more inclined to make the most of every day and to appreciate what they have been given. And that is a lesson that as parents we cannot teach, it's a lesson only learned through experience.

Thank you "baby wex", for helping show us ALL the way.

I don't understand

2006-06-22T15:16:00.000-07:00

It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.

The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.

It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!

Dads hurt too

2006-06-19T15:14:00.000-07:00

Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.

Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.

Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.

Why do kids have to die?

2006-06-17T15:13:00.000-07:00

I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.

So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.

I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.

I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.

Slipping

2006-06-13T15:11:00.000-07:00

So I didn't go to Tyler's funeral on Saturday. I won't elaborate.

I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.

I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.

Healing, a little at a time

2006-06-09T15:10:00.000-07:00

Tomorrow is Tyler's funeral. I'm a little nervous still waiting for the part of this that's going to suck me right back to losing Alex and tear me apart. So far, so good though.

Yesterday we had a bbq at my moms for Craig's birthday. It was a beautiful day and we spent the day just being lazy and watching the kids do 'stupid human tricks' as my sister liked to put it....... you have to understand, her sense of humor is even more left field than mine (corrected the I before E thing there Jana, in case you ever read this aren't you proud?)

Today we went to the MN zoo and had a blast. Allen snuck out of work and joined us and we made a day of it. After we went and saw a IMAX 3D film which was awesome, it was hilarious to watch Shay and Jack (who have never before even been to a normal theater) reach out and try to touch the 3d pictures. I'm not sure the poor man in front of Shay appreciated it much though. They would get scared at the jumpy parts and then just giggle like insane little elves lol

I noticed about halfway through the day that although I still find my eyes wandering toward babies, especially newborns (since Alex will forever be one in my mind, even though he'd be over 4 months old now) I don't look at them and feel that overwhelming sadness I use to.

It's amazing how the heart can heal. The problem I battle now is how much healing is fair and how much should I make myself feel guilty for if that makes any sense. I like to beat myself up when life is going well for me I guess and I need to stop doing that.......

Rest in Peace baby Tyler

2006-06-07T15:08:00.000-07:00

Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.

Godspeed little Tyler, I am forever grateful for the opportunity to know you.

Just keep moving on

2006-06-05T15:07:00.000-07:00

As when Alex was in the hospital, no news is good news. As we heal, this journal becomes less needed as a venting place for our pain.

Things with Bubba's bears have been plugging along. We are getting a growing number of bear requests and I'm happy to be putting the time into this. As soon as I get all the bugs worked out I can start handing more off to the many people who have volunteered to help with it, which is going to become a welcome break since it really has become a full time job and I find myself pretty exhausted at the end of the day sometimes.

Today miss Shaylin graduated from her pre-kindergarten program. She was a doll in her little cap and gown and they always just make those things absolutely adorable, you can't help but get a tear in your eye........ go class of 2019!

Tomorrow is the last day of school for all the kids. This school year has just flown by with everything that has happened. It's kind of strange how this time last year we were in exactly the same place in a lot of ways as we are now. Expecting a baby, preparing for summer with 5 active children keeping us busy with summer school activities. The only thing that is so very different is that we are different people than we were. It's strange that such different people are living the same life.

Of course it's not the same. It will never be the same. But to all outward appearances it really has to be. We are showing people that we can survive, our family has taken a hard hit, but we will stay together and be stronger than ever.

Fear through anothers eyes

2006-06-02T15:05:00.000-07:00

So, someone stole the flowers off Alex's grave that my mom put there for memorial day. How nice is that? Stealing flowers from a deceased person is bad enough, but a BABY? Do people have no morals?

Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.

Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.

And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.

Reality hits

2006-05-30T15:02:00.000-07:00

Now that the news has really started to sink in I find myself torn. I am very excited but I'm SO scared. I'm not so much scared of them finding something during the tests they will do when I'm pregnant , I'm more afraid they will miss something and we'll think once again that we've just had a perfect healthy baby and then he or she will get sick like Alex did unexpectedly.

I guess this is normal. And we won't breathe easy until after the baby is born and we get an echo done to be sure there is nothing wrong.

Ask and ye shall receive

2006-05-26T15:00:00.000-07:00

Well, I am happy to share the wonderful news that we have been given a gift from Alex and God.

We are expecting a new little miracle February 3, 2007

I'm sorry, my baby died

2006-05-23T14:59:00.000-07:00

Well, I finally did it...........

You may be aware that after the birth of a baby there is a '6 week' post partum appointment that every new mother must have, and every new mother thoroughly dreads. In my case, dreads enough to put it off for months.

My original appointment was to be March 14th, I decided not to go that day because Alex was really unstable and I couldn't bring myself to be 2 hours away from him. After he died I just didn't want to do it, it was another one of those things where I was suppose to be bringing him with me and showing him off to all the midwives and nurses, and I couldn't.

Well, my reproductive health at stake, I did bite the bullet and go. I should really have called first to make sure the staff was aware that Alex had passed, but I didn't. I kind of figured that they would already know.

So the nurse takes me back and is doing the bp and all that and she askes 'what is your babies name?' And I swallow hard and say 'he's deceased'. She of course said she was sorry a few times and finished up her part and left to get the midwife.

The midwife comes in and starts crying, which of course makes ME start crying, it's just a chain reaction every time. I'm ok until people cry. I jokingly yelled at her for making me cry and she said 'i know, but we feel like these are OUR babies too'. I can't explain it, but that made me really happy to hear.

All in all I was there for over an hour. We talked a lot about Alex's condition and what happened and our plans for having more children. She went over with me how things will be a little different my next pregnancy because I will be involved with a perinatologist in Marshfield for level 2 ultrasounds and fetal echo's. (A perinatologist is a high risk obstetrician, although I won't be 'high risk' unless they in fact find something wrong with the baby) The only thing that remotely makes me high risk is that I had a premature baby, and honestly that was probably due to him starting to struggle in the womb and initiating labor because it was time to be born.

I was pretty happy that I will still be able to have the pregnancy followed by the midwives rather than seeing an OB (again, unless there's something wrong) because I really love them and the way they do things.

Anyway, everything looks fine in that respect and we were officially given the green light. It was really nice, after the crying to be able to talk about Alex, and someone really wants to listen.

One more point to add, to anyone who might still be harboring doubt about my mental health. We talked about depression, about things that can help etc and she agreed with me that antidepressants probably aren't the answer as long as I can still be productive and live life. At the end of the visit she said that I surely don't seem 'depressed', sad yes. But not depressed.
So I am taking care of myself, and I do have the doors open for help if it's needed.

If you want to hear God laugh....tell him your plans

2006-05-21T14:57:00.000-07:00

I would like to start off by thanking everyone who has shown us that there are good people in the world by thier kind words and generosity contributing to the Bubba's Bears 4 CHD project. I never in a million years expected the kind of response we have gotten.

I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.

It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.

We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.

The elevator story

2006-05-20T14:56:00.000-07:00

So, I said i'd be sharing stories of our adventure and here's one that I am remembering today.

The Elevator incident.

When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.

Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.

The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd

So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.

We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.

The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.

The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.

A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.

By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.

I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.

Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO

Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.

I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'

The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.

A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.

Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.

Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.

A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.

random oddities

2006-05-20T14:55:00.000-07:00

After some thinking about the entry on Thursday (2 before this) I have come to the conclusion that this journal DOES tend to be a bit misleading. I mainly post entries here when I'm struggling, so that's what people see.......

Rest assured folks. I'm as sane as I always was (which may or may not be a good thing).

Last night I had a baby dream. Not sure if the baby was Alex, but it felt like it was. A healthy baby boy and I was just doing all the things you'd do with a healthy baby boy. Interestingly enough, I knew it was a dream and didn't wake up upset.

I don't have much to say today. It's a gloomy day and I have a pile of laundry waiting for me. A great day to preform some bear surgery and get some things done around the house. Which you can tell from this entry, I'm not doing.

God's children

2006-05-19T14:54:00.000-07:00

For those of you who've seen me make mention of Tyler, please pray with everything you've got.

A little background. Tyler was born January 17th with the same diagnosis Alex had. Alex and Tyler were roomates for over a month and we got to know his family well.

Tyler has been struggling lately. He has from what i'm told a blood clot in his heart and there was some concern he was becoming septic a few days ago.

At 1:30 this morning I received a phone call from his mother that his hemoglobin had dropped, she was on her way to the hospital and all she knew is they were doing a scan to see where he was bleeding from (if you remember from Alex, when your hem drops, it's bleeding somewhere).

Then at 3:30 she called me again. Tyler had taken another turn for the worse and was very dusky (hospital lingo for turning blue), they had gone up on his vent settings but it wasn't helping and at that time they were bagging him and his mother heard them say he was 'hard to bag'. I asked her to ask the doctors if she should have someone come, and the doctors told her to give them 30 minutes and they would come talk to her. I haven't heard anything since.

So I ask for your prayers again, your prayers were amazing in helping Alex to overcome so much, they are very powerful. I'd also like to ask you to pray for our other former roomate Luke, He's having some issues he's trying to overcome as well.
___________________________________________
Update: I got ahold of Tyler's mom. He pulled through but is still less than stable, the docs really aren't sure what's going on.....

Only as crazy as the xrazy worm says I am

2006-05-18T14:53:00.000-07:00

hmmm. After reading the latest entry in our guestbook I am left pondering. Are my posts in this journal painting an accurate picture? Or am I just not seeing the accurate picture myself?

I'm not sure if that makes any sense or not. What I mean is, do these entries make me sound more depressed and grief stricken than I feel like I am, or am I really THAT depressed and grief stricken and I am the only one who can't see it?

You see, I actually think I'm doing fairly well. The bear project, the warm spring weather, and doing things outside with the kids have been keeping me busy, and happy lately. Sometimes I feel guilty almost, like I shouldn't be as 'settled' as I am with all of this. Am I just lost? Am I really battling demons so deep that everyone can see it but me? I'm not sure.

To the person who posted the last entry, thank you for your concern. I could tell it wasn't accusatory, but rather genuine and I thank you for that. The kids are doing well, I am very proud of them.

As far as antidepressants, I am not one of those people that thinks badly of them. There was a time when I needed them to get things under control and If that time comes again, I will. I do remember though that although they helped me to deal with things better, they also made it difficult for me to express my emotions,, and I really think that is important as of now. I'm told there are phases of grief, and a book I read said that if you dont' allow yourself to go through them, they will come back to haunt you. So I think it's important that I grieve properly, which, at least with my history I don't think is possible on medication.

Counseling may be an option, but I'm not entirely certain at this point anyway that it's needed. I fear it will just keep me in those depressing moments to talk them to death if you know what I mean. Alex is gone, there isnt' anything I can do to bring him back and I'm trying to pick myself up and carry on, and up until right now I had been sure I was doing a decent job of it, but maybe I'm deceiving myself. hmmmmm

I will have to spend some time thinking about this.

Prayer request

2006-05-17T12:27:00.000-07:00

Please pray for Alex's old roomate and 'wonder twin' Tyler, he's a 'very sick little boy' as per his doctors at the U. It's never good when they say those words.

The way I see it Forest Gump had it all wrong

2006-05-15T12:26:00.000-07:00

I think Forrest Gump had it all wrong with his Life is like a Box of chocolates thing. Life is actually very little like a box of chocolates. A box of chocolates comes with that nifty little map in the top of the box to tell you precisely where your beloved caramel chocolates are located. And even if you somehow, by chance LOSE that little map, you can be fairly certain that you are still going to get....... chocolate, yes?

I've been thinking about this, as if I have nothing better to do (and yes i'm certain I have certifiably lost my sanity) and trying to think of a clever metaphor for what life IS actually like. All i've been able to come up with is a pile of &*#$ and well, that's not very clever or nice....... although maybe fairly close to being accurate.

So anyway, that's my wisdom for the day, or lack thereof. And btw, I'd like to thank the FDA, FBI, CIA, NBA, of whoever it is that ensures that when I buy a box of chocolates, I DO know what i'm gonna get.

mothers day... but different

2006-05-14T12:24:00.000-07:00

Well, I thought i'd be ok. Really I did. Mothers day is just another day. I dreamt last night that it was the evening of mothers day and I thought 'whew, i got through it!' Only to wake up this morning realizing it had just begun.

I woke up crying, quickly got dressed and went to the cemetary. I sat there for a while, crying and talking to Alex and asking all of the mommies in heaven to take special care of him for me.

This afternoon my brother visited. He had been gone on vacation and it was nice to see him.

I now have a migraine. Strange because I haven't had one since I was pregnant and didn't quite know what it was when the vision changes hit me. So this will be short, the bright light of the computer monitor isn't so pleasant. I just have to get through dinner and then I can rest for a bit. Craig, bless his heart tried to get today off but couldn't.

The roller coaster

2006-05-13T12:23:00.000-07:00

I sit here tonight worrying, not about my own child but about someone else's. Apparently little Tyler is septic. If you remember, this is what ultimately took Alex's life. No child should have to go through any of this, it's not fair!

I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.

I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.

I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.

I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.

I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.

Dreams

2006-05-09T12:21:00.000-07:00

Dreams.

Last night I dreamt I had twin baby boys. I have no idea what was wrong with them except that they were in the hospital and both had trach's. It was one of those riled up worrying dreams, worrying about how I'm going to keep them alive and where the next curveball is coming from. I hate those dreams. I feel that all too familiar knot in my stomach, the knot I had while Alex was in the hospital. It feels like when you suck your belly in and breathe like that all day..... your muscles are sore. It's strange.

Apparently Craig dreamt of Alex last night. I realized that I don't dream of Alex anymore....... not him precisely anyway. I dream of hospitals, illness, fear, but the baby involved is never Alex. What does that mean?
Kind of makes me feel guilty and even sad. Sad because at least if I dreamt about him for that moment I would be in some remote way WITH him.

I do however dream of twins a lot. Maybe it's because I worry so much about Tyler and Luke that in some way I feel like I had more than one sick baby. I don't know.

On another note, I think Austin and Chris might have mono or something. I won't go into it but lets just say that my boys, who NEVER get sick..... are really being kicked in the butt by something these past few days:( I'm watching the situation closely.

Anyway, looks like it's gonna thunderstorm and Jack could use some cuddling I bet.

All I have

2006-04-28T12:15:00.000-07:00

Today was an especially hard day. 3 months old. You would be laughing, learning to roll over, preffering my face to any other, reaching out to play with your toys..... The visions of this that I get in my head are beautiful and so painful at the same time.

Every day, in everything I do I think of you. When I wake up in the morning I feel like I should be doing something and then it hits me....... I should be getting you out of bed and feeding and changing you, excited to start our day together. I remember when the other kids were little, just waking up every morning and being glad that it was finally morning........ now I wake up every morning and feel sad that I have to live yet another day without you.

Today daddy and I were very sad and we opened your box. The box sits on our headboard and seems to only get opened when we are feeling especially sad and you know it only makes us sadder. Everything that was connected to you is in that box:
your footprints from the hospital,

your booties, both the blue baseball ones that the nurses loved so much because they fit on your swollen little feet so well and the jingly horsey ones that were on your feet the day you left us, that still have blood on them from when nurse Kelsa made them messy a couple of days before.

The invitations to your 'birthday party' we had for you the first day

Your hospital bracelet taped to the disk that has your first echocardiogram images on it.

Your lock of hair, crib card, the pacifier the nice nurse at Marshfield gave you. So many things that in a perfect world would hold some sentimental value, but in our world they are our most valuable posessions. The one thing we don't have is your hat. The hat that your nurse searched high and low for because your sweet head was too tiny for the regular baby hats..... yours had to be special. We never got your hat from the hospital.

We miss you so very much. Daddy said to me today that he was scared to have another child because he was afraid that you would think we were trying to replace you. I told him that we all know, you included that no one in the universe could ever replace you.....

I hope you are having fun in heaven. I take comfort in the fact that you will never have to experience the pain that we feel, your new perfect body will always be young and healthy and you will never feel any pain again, only joy basking in God's light. I can't wait until the day that I can be with you again I dream of it a lot when the nights get quiet and I can't sleep. I envision me going to heaven and seeing you and scooping you up in my arms and holding you tight for an eternity.

Sweet bubba, I hope you know how much we loved you in life and how much we will always love you. I hope that all those long days in that hospital bed you felt that. I hope we made the right decisions for you, we made them out of our love. Until we meet again.........
____________________________________________

I'm not sure if I've shared this poem before or not, but it is one that the 'poetry therapist' (which I thought was kind of a hokey profession and she cried more than I did the poor soul) brought and read to me the day before Alex's surgery and it does a good job at explaining things

But not Today
-Brenda Neal

Sometimes
I can let go of the past,
a past locked behind the doors
of painful memories.
But not today.

Sometimes
I can accept the reality
that is me
and the journey headlong
into the unknown.
But not today.
Today change comes hard.
I wear my feelings on my sleeve,
and nothing seems right.

Sometimes
I feel I can
weather anything
tackle anything
do anything
But not today.

2006-04-27T12:14:00.000-07:00

I haven't updated in a bit. I got a phone call from Alex's girlfriend in heaven, Gracie's mom yesterday. It was so nice to talk to her. It's nice sometimes just to be able to talk to people who have been there and ARE there themselves.

I'm still throwing myself into making the bears for kids with CHD. It's a nice way to pass the time and I can't wait until I get enough done to actually send them out. Again, if anyone has any nice stuffed bears laying around, please let me know. You can see some of the ones i've finished at http://profiles.yahoo.com/kat_maid_to_ahcsj not sure how long i'll have the pic on there.

Somethign to share:

Bereaved Parents Wish List

I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that he was important to you also.

If I cry and get emotional when you talk about my child, I wish you knew that it isn't because you have hurt me. My child's death is the cause of my tears. You have talked about my child and you have allowed me to share my grief. I thank you for both.

Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions, so I do want to hear about you, but I also want you to hear about me. I might be sad and I might cry, but I wish you
would let me talk about my child; my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child's death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over. These first years are traumatic for me, but I wish you could understand that my grief
will never be over. I will suffer the death of my child until the day I die.

I am working hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.

I wish you wouldn't expect me 'not to think about it' or 'be happy'. Neither will happen for a very long time, so don't frustrate yourself.

I don't want to have a 'Pity party', but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling miserable. Please be as patient with me as I am with you.

When I say, 'I'm doing okay', I wish you could understand that I don't 'feel' okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, hopelessness and overwhelming sadness are
all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to 'take it one day at a time' is excellent advice.
However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

I wish you understood that grief changes people. When my child died, a big part of me died with him. I am not the same person I was before my child died and I will never be that person again.

I wish very much that you could understand ~ understand my loss and my grief. But, I pray daily that you will never understand.

--Poem from Compassionate Friends

Quality of life

2006-04-22T12:13:00.000-07:00

So I was thinking today about the possibility of having another child and I realized, I don't want another child. I want Alex. I love my 5 living children dearly, but no other child in the world is as special as Alex was and even if we have 20, there will always just be this special person who isn't with us. It isn't that i wanted a sick child, that I wanted to have to worry every day of my childs life that it might be his last, but we were so willing to take on whatever God had planned for us with him. I remember after his second surgery one of the cardiologists came to talk to us about the fact that they found the 2 small bleeds in his brain and that there was no way of knowing what this meant for him long term, I remember thinking "so what?! He's ALIVE" and even said so much to her, in a nicer way. She said it was a good thing that we had that outlook on it.

I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.

And it makes me think about Alex.

We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.

We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.

His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.

He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".

He had those brain bleeds so he could have been impaired neurologically, to what degree who knows

He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.

He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.

And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?

Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.

I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.

What to do

2006-04-21T12:11:00.000-07:00

I thought about discontinuing this journal. It's become so sad and I don't want Alex to be associated with sadness because he made us so happy in his life.

But I think it's important to keep it. Because someday someone might read it who is new to thier loss and by reading it they might find some comfort in knowing that sometimes you really do lost control, as parents we try to just be so strong and make the world think that we are dealing with things when we aren't and it's ok to just not be able to deal with it sometimes.

So I will keep this journal and let my feelings come out in it, and maybe someday the entried will not be so sad, maybe as I heal it will change some and it will be important for me to be able to read back and see the changes, see the healing as it happened.

I'm not ok!

2006-04-20T12:10:00.000-07:00

I thought I had done the right thing by going back, but now I am left unsure. These past 2 days have seemed more challenging than the one's before. Is it because going back there really showed me that he's gone? Maybe there was some comfort in pretending he was still there.

I miss him. I barely got to know him but it's unbearable how much I miss him. He would be 3 months old as of next friday and I was brutally reminded of that by a pamphlet I got in the mail today 'your 3 month old'. It left me sobbing on my bed tearing everything out of the box.

It's been said that God only gives us more than we can handle. Did he screw up this time? Maybe God isn't omnipotent like we want to beleive and he made a mistake. Can I really deal with this? Can Craig? Can we ever become real people again or will we live the rest of our lives just this shell of who we were meant to be?

I try not to be angry. I try to just keep it all together and carry on with life like Alex would have wanted me to. He fought every single day for his life and woulnd't want us to just let ours slip away from us. But I don't know if I can. I don't know if I will ever be able to get through a day without my heart hurting so much.

It's just not fair. Babies aren't suppose to die. He was suppose to bury ME in the ground.

I have trouble beleiving sometimes that a good god would let people hurt this way. The way Alex did and the way I am now. Someone said to me that sometimes God chooses to heal, and sometimes he chooses to comfort those of us left behind. We'll I'm telling ya, I'm not feeling any comfort. I feel like God abandoned us just when we were starting to finally get it. It doesn't make any sense! I sat out on the deck the other night crying in the rain, telling God that if he's so almighty, to get his butt down here and tell me why he took my son, at least I deserve that......... Did I get any answers? no and beleive me i've listened. I've listened so intently for any speck of anything that would provide me some peace and it's not coming.

Yes, my faith is waivering. Just when I had really found it. Because God took my child from me and left me alone, in my own misery to deal with it.

People say stupid things, 'oh he's better off in heaven'.... Well if that's the case, why did God send him here at all? To feel pain? Are there no better ways to teach a soul than to destroy it? Maybe he didnt' destroy Alex's, but he did mine. I've always beleived that God molds us, to fight in his army when the time comes....... how can I fight if I don't have anything left to give? Alex may well be 'better off' in heaven, but he would have had a damn good life here too. He will spend eternity in heaven, life is in the blink of an eye....... why not let him live some of it?

The world is just going on around me and I'm struggling to keep up. Am I depressed? another silly question people ask.... I'm depressed, I'm scared, I'm unsure who I even am or what I beleive. The world keeps on turning and mine is just standing still....

Home away from home

2006-04-19T12:09:00.000-07:00

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.

The first Holiday

2006-04-17T12:09:00.000-07:00

So Easter was hard, harder than I even thought it would be. I didn't even want to do anything and if I didn't have kids I wouldn't have but it's not fair to deny them the simple childhood pleasures we have to go on living.

We went to moms for dinner. We didn't stay long and I feel bad for that but I just wasn't in any mood to celebrate anything. I wanted to go to the cemetary but I didn't, I just couldn't. I did go today though.

All in all, i'm just really glad easter is over. Mothers day will be the next obstacle to get through.

Tomorrow I'm planning to go the Minneapolis. Just me and a friend. I'm not sure if it will be as theraputic as I hope and the closer time gets the more I'm starting to panic.

We got some of Alex's medical record today, it wasn't exactly what I was hoping to get but it was something. I of course don't understand all of it because it's all in 'Dr Speak' but I understand enough. I think reading that kind of stuff takes me back, for the moment to when he was still alive. All those numbers and notes are relating to him so in a way through that, he's still here. Unfortunately I eventually have to stop reading and he's not here.....

I'm really struggling with being able to do everything. It's very hard to try to grieve, and be a mom to 5 other kids at the same time. There are sometimes too many hours in the day and not enough of me to go around. I hope this gets easier someday.

Death certificate

2006-04-17T12:05:00.000-07:00

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.....

2006-04-15T12:07:00.000-07:00

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?

2006-04-14T12:06:00.000-07:00

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.......

I don't understand!

2006-04-12T12:04:00.000-07:00

For some reason today has been a very hard day. I am finding it very difficult to find my 'happy place'. Easter is coming, not only is it the first 'real' holiday we planned to spend with our sweet baby boy, but it is also our first goal 'home date' in the hospital, then when we realized it probably wouldn't happen, we were rooting for Mothers day. So Easter is going to suck this year because of that and to top it off it falls on the 16th and marks the 1 month anniversary of losing Alex. I just don't want to do anything anymore.

People try to get me out of the house. My mom wants us to go to Minneapolis on Friday, which is her birthday to take the kids to Chuck E Cheese and have a nice day out. I don't want to go, we had planned to take the kids to Chuck E Cheese on our way home from the hospital on the wonderful day when Alex would finally be sent home from the hospital and that didn't happen.

People think i need to get out of my house. My house is my safe place. I dont' have to see babies, pregnant women, any of it in my house. I can cry without being gawked at, and i'm not 'the woman who lost her baby'.

I find myself feeling very bitter today. I'm mad at God. I try to tell myself that God took Alex home and ended his suffering, but then on these hard days I think that's a bunch of bull, God preforms miracles every single day and he didn't. Why didn't Alex deserve a miracle? Why are prisons full of people that do awful things and yet for some reason Alex, an innocent child's life was taken from him before he had a chance to live it. It makes me so angry. Instead he felt pain every day of his life, for nothing. To have it end anyway.

I'm sure eventually I'll find my way back to my happy place for a while. But not today.....

God, Take This Child....
By Nancy Scott

Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.

We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.

We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.

It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.

God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)

God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through.

He's gone. He's really gone?!

2006-04-08T12:01:00.000-07:00

I know, i haven't updated in a long time. Just trying to be normal. I don't feel like I have anything positive to say and I don't like to be depressing everyone.

They say this gets easier. I'm not sure who 'they' are, but that it gets easier doesn't help me NOW. I'm dealing with today, today.

I'm frustrated because people don't know how to react to me, and I don't know how to react back. I hate it when people try to avoid the subject because I love to talk about my son and quite honestly, not much else at this point in my life is worth talking about. Don't avoid me because you dont' know what to say. Ask me about him, about his life, even about his death..... but dont' act like he was never here.

I'm still trying to wrap my head around the fact that this is it, Alex is never ever coming back. His little body will be in the ground, in that cemetary forever. I will never again hold him, see him, none of it. How can something so wonderful just be gone just like that? In the blink of an eye it seems?

I'm really trying to be normal. Trying to appreciate what I have. I find myself short tempered with the kids and I hate that. It's not them i'm mad at, i'm not mad at anybody. They are hurting and dealing too and I'm not making it any easier for them and that sucks. This is a huge turning point in thier lives and my response to them can make it or break it, how's that for pressure?

It seems Jack must be reminded daily that Alex isn't coming back. Everytime he sees anything relating to a baby he will say 'that's for baby Alex, baby Alex in the hostible' and I'll say 'no Jack, baby Alex isn't in the hospital, he's in heaven, up above the clouds with Jesus' and he'll say 'baby alex get better and open his eyes' and I have to say 'no jack, baby Alex can't get better, he's gone forever and ever' Every day we have this conversation. I don't want him to forget Alex, but it just hurts me to have to say those words over and over again. Almost like I'm not only telling him, but myself as well. It's really emotionally draining.

I know I should go to counseling, we all should. But I have yet to make the appointment because I'm afraid. I'm afraid because I don't care how many years of schooling you've had, you DON'T understand and I'm afraid that I woudl be completely unreceptive to them because I would always be thinking that. Always be bitter about it.

I got on the scale for the first time the other day and realized that I have lost exactly 23 pounds, I gained exactly 23 lbs during my pregnancy. I had this though that it's like it never happened! Yet it did, and I don't have anything but pictures and memories to prove it.

Here's a poem I like

My parents, they tell a lot of lies
they never did before.
From now until they die,
they'll tell a whole lot more.

Ask my parents how they are
and because they can't explain,
They will tell a little lie
because they can't describe the pain.

Ask my parents how are they,
They'll say, we're alright.
If that's the truth, then I say,
why do they cry each night?

Ask my parents how they be,
they seem to cope so well.
They didn't have a choice you see
nor the strength to yell.

Ask my parents how they are,
We're fine, we're well or we're coping...
For God's sake guys, just tell the truth
just say your heart is broken.

They'll love me all thier life,
I loved them all of mine.
But if you ask them how they are
they'll lie and say they're fine.

I am here in Heaven.
I cannot hug from here.
If they lie to you don't listen,
Hug them and hold them near.

On the day we meet again,
we'll smile and I'll be bold.
I'll say, You're lucky to get in here guys,
with all the lies you told!

Slow and steady

2006-04-07T12:17:00.000-07:00

It's been a while hasn't it. I really feel again like I am starting to normalize. For a while I cried all day long, then it was a few times every day, now it's more like a few times a week. I feel guilty for that but I remind myself that Alex really woudln't want us to be sad, but to celebrate his life and celebrate his eternal life. some days it's easier to remember than than others.

We are trying for another baby an that gives me some of the hope back that I felt I had lost. I don't expect it to happen right away and I'm sure that we will have a hard time if months pass without it happening. But it really is all in God's timing. He was patient with us when he so much needed Alex back, we will be patient with him.

I find myself meeting so many people I otherwise wouldn't have. Parents who have lost children, all with thier own special wonderful and sad story to tell. It's like this secret club that no one wants to be in, yet we are and we rely on each other to get through.

Craig and I are planning another trip to Minneapolis, not this coming week but the following. We want to deliver some teddy bears and there's a woman I met on a heart babies board who's son is having another surgery this coming week so we will get to meet him and his mommy.

I use to really long to be there, at the hospital, the RMH. It was like we left so much behind. Now that is starting to fade. I miss everyone, but I don't have this need to be there. In fact I hope that for the rest of my life I never need to be there again.

Sharing the gifts we are given

2006-04-01T11:59:00.000-08:00

If you are visiting Alex's site because you received a Random act of kindness or a giving box, please sign the guestbook! We like to see how far Alex's love is reaching. While your here, take the time to read Alex's story, the journal, and browse his pictures.

Some people are born with special hearts, the rest of us have to work at it;)

Don't know what I'm talking about?! Read on!

Facts about congenital heart defects:

1. Congenital heart defects are the #1 birth defect in the U.S

2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.

3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)

4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.

5. Congenital heart defects are the #1 cause of birth defect related infant deaths.

6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.

7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.

9. Currently, there are over 35 known types of CHD.

10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/

Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd

A request in honor of Alex...

At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.

Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!

Please also forward this to your friends!

Thank you!
Kathleen and Craig and the kids

____________________________________________________
This random act of kindness was done in
memory of Alexander Evertsen who passed
away March 16,2006 at the age of 6.5weeks
from Congenital heart disease. Pass this on and
keep the kindness going!
http://www.caringbridge.org/visit/alexanderevertsen

What is normal?

2006-03-30T11:58:00.000-08:00

What is normal? We are really trying to figure out what 'normal' is for our family now. It seems like the past year is just such a blur, trying to conceive Alex, the pregnancy was so boring and uneventful (haha, little stinker) and the roller coaster ride that has been 2006.

I feel like we are adjusting well. I feel like we have really grabbed ahold of the lessons we've been taught and are starting to implement them into our lives and you know, life is really a whole lot less stressfull when you stop trying to direct it and just LIVE it. Things that use to seem like such issues are now just so trivial although Craig still is in his 'must worry about the little insignificant things so I don't have to consume myself with the big ones' mode of thought, but he'll come around.

Some days are good. Some days not so much. Sometimes we'll have a day that seems good and then something out of the blue will smack you upside the head and send you spinning for an hour or two until you work through it, shed your tears and find that place in your soul where it's ok again. I don't like being knocked out of my 'happy place' I must say. But I know that these moments are needed, they are part of the healing process and if I don't have them now, they will come back to haunt me later.

People have started asking THE question. You know the one, the one you are thinking right now....

Are we going to try again? Then answer to that is that it is not for us to say whether or not God has more children planned for us. I figure if I can leave my precious sons life in Gods hands, I can leave a lot of other things there too. So, who's to say what the lord has in store? We aren't rich people but the old 'Ask and ye shall receive' hasn't failed us yet and I don't think God intends to start. So many people dwell on what they can't provide and tend to forget that children aren't expensive, lifestyles and keeping up with the Jones' is what will get you.

Are we afraid of repeating the process? Terrified. But that's not our call to make. We have faith in God's almighty plan and he alone knows what is best for us in our lives.

I've been told by a couple of different people that I should write a book about the lessons that Alex has taught. Someday I might. I plan to keep updating this site and getting it all out as it comes and then someday I'll see what I'm called to do with it. I know Alex's life has and will continue to impact many people, I just need to find the direction that I am suppose to go with it.

Yesterday Craig, Jack, and I stopped at the cemetary on our way back from grocery shopping. As we were leaving I said 'bye bubba' Craig said 'bye buddy' and so Jack says 'bye bubbie' it was rather cute. Jack seems to have a better handle on it all now. He told us that baby Lex is sleeping in heaven with Jesus. We've been talking a lot about heaven and God and things and I really think he's beginning to understand.
The other kids seem to be doing remarkably well. Shaylin I've noticed has regressed a bit. She's now afraid of the dark and gets frustrated very easily, she's at that age where she is just beginning to realize that she is an independant person from us and Alex's death I think has made her realize her own mortality, that it's not just old people that go to heaven, sometimes children do to. What a hard lesson to learn at her age.

God is in control, like it or not

2006-03-27T11:56:00.000-08:00

Some days are harder than others. I've found that Alex's life has brought me so much closer to God than I was. I remember on that Monday walkingn to the hospital just feeling terrible about things after Alex's rocky weekend when I just stopped in the middle of the sidewalk in front of the hospital, threw my hands in the air, looked up to the heavens and said out loud 'I give up God, I quit trying to be in control! Let's do this your way' 3 days later he called Alex home. Now I could get angry about this, that I gave God control and he took my child from me..... but instead I feel like rather than taking my child from me, he ended Alex's suffering and took him home. My fight for control with God was only harming my son.

We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.

I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it

'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.

Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '

Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.

Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve

Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:

Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve

VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.

overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD

Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall

Children with TOF have a boot shaped heart.

Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.

There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.

Why?

2006-03-25T11:55:00.000-08:00

Yesterday was a bad day. They 'why' demon crept up on me and stuck around most of the day. I know I can't give in to they 'why' because there isn't an answer to that question that I can know until the day I see God and Alex in heaven and then i'm not sure it will matter.

I got a wonderful card today from the social worker we worked with at the hospital, it really warms my heart when people say that they could see our love for Alex and I hope that he felt that too. Apparently Alex was her first PICU kid and she said that her experience with him taught her a lot and will always influence the way she deals with families in her work, and the way she is with her own family. It's amazing how many people such a little guy influenced.

I'm still struggling with my feelings, as is probably to be expected. Most of the time I am just so grateful, I'm sad that he died but I'm grateful that he lived. Some of you know that Alex was the result of a successful vasectomy reversal, he was a miracle from the start. Sometimes that makes the WHY demon come out thinking about it, because he was so loved, planned for, and wanted.

I think one of the big things I've learned is that the people in our lives aren't ours to keep, they are on loan for a while, some of them many years and some only minutes, days, or weeks. Appreciate them and let them know how much you do. And take all of the lessons they are here to teach and learn them. And when they are gone, be grateful that you had the opportunity to know them. After all, it's better to have loved and lost than never to have loved at all.

My Dream

If I could have some fairy dust
To make my dreams come true
I'd take it with me in my sleep
So I could dream of you

I'd dream I were an angel
If only for one day
So I could be in Heaven
Just to spend the day with you

I'd tell you how I loved you so
And miss you oh so much
And how just for a little while
You were mine but not to keep

I'd hold you oh so very close
But then I'd have to go
You see my little Angel
You were my gift but not to kep

I have to say night night now
It's time for me to go
But this feeling in my heart for you
will never go to sleep

Everything is blurry

2006-03-24T11:54:00.000-08:00

It's been 8 days. I can only be thankful for the fog I've been in because it has made time pass quickly. I'm still throwing myself into everything, I've researched every medication he was on, every symptom he had, the thank you cards are finished and either mailed or sitting on my desk waiting to be mailed.

We packed up the baby things yesterday. It wasn't as hard as I imagined. The fact that he never came home to use any of those things has spared me some because I can convince myself that since he didn't use them, they weren't his. The house appears so empty now though, aside from the plethora of flowers and plants in every room to constantly remind us that he isn't here.

We visited the cemetary yesterday. Oh how I can't wait until the grass has grown and his stone is laid. To go out there and see the dirt and the peice of wood laying over where he lays disgusts me, like he was thrown in the ground and covered. We brought his big tigger that was won for him at bingo by a little girl at the Ronald Mcdonald house, Autumn. It melts my heart how she won it and gave it to Alex.

I still wake up every morning and think of my walk to the hospital. I retrace the route in my mind, feel the snow under my feet and the wind from the river on my face. I see the university students rushing to class and the huge buildings of the hospital and it's ajacent medical buildings. I remember the smell of the place, that distinctive hospital smell and hear the sounds of the elevators. I remember walking into the PICU and seeing all the familiar faces, walking into his room and saying my usual 'good morning bubba, I love you' and rubbing his fuzzy head. I still feel the fuzz of his hair.

Then my mind wanders back to today and I realize that all I have left is pictures, pictures in my mind and on the wall. He will never be forgotten but I feel those precious memories slipping away every day and it makes me sad.

At the bible book store I found a card with his name on it, it says:

Alexander
'helper of mankind'

Have I not commanded you?
Be strong and of good courage:
do not be afraid, nor dismayed, for the Lord
your God is with you wherever you go.

Joshua 1:9

Guestbook entries for 3/21/06

2006-03-21T23:52:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 20, 2006

Kat:
Your strength is amazing! Thank you for sharing your story. My 14 month old son also has TOF with pulmonary atresia (missing his pulmonary artery all together as well) and a large VSD. I know we have a LONG road ahead, but I'm grateful for each and every day that we have with him. I will carry Alexander's story with me- what a brave little man!

Buffy Storm

Kat: I want to express my deepest sympathy for your loss. The Lord works in mysterious ways, as the poem you have written suggests. My wife, Buffy, showed me your website and I find myself tearing at work. You don't find many people with the same exact disease as your own son. If you ever want to talk about it, please feel free to email us. Again, I'm so sorry for your loss and wish you the best in dealing with everything and trying to move forward.

Bill Storm

Kat,
I can not begin to imagine your pain. Please know that you and your family are in my thoughts and prayers.

Tabetha Hodge

Guestbook entries for 3/20/06

2006-03-20T23:49:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 20, 2006

Kat & Family,
I am so sorry to hear about your loss. My prayers are with you and family. Alex is such a darling and I know that you have a special guardian angel watching over now.He had been a great fighter and fought his battle so as to spend some more time with you. I know that nothing that I can say will make you feel better but I will always pray to God to bless Alex and to give you and your family strength to cope. Hugs ((()))

Aryan's mommy S

Kathleen,
I'm truly sorry to hear about you loss. You are in my prayers.Please remember that your not alone continue you remain strong.
P.S. Alexander is beautiful
Roxanne

I came across your story at Baby Center as well. Very touched by what you said ... "I am grateful for the time we spent. God was so patient with us, waiting until we had learned some valuable lessons before he took Alex home. Alex was so patient with us, hanging on until we were as ready as we ever could have been to deal with this pain. I know 2 months ago we were not strong enough to live through this, Alex made us strong enough." ... you said it all right there. You have a beautiful son, a beautiful angel! Thanks for letting me read your story and the best wishes for you and your family!

Michelle Torgerson

I'm so sorry to hear about the loss of Alexander. I can only imagine the pain you are going through. He's a beautiful angel.

Maria Bennett

My heart goes out to you and your family! I am thinking of you the this time of sorrow! Alexander was a beautiful little guy, and I thank you for sharing his story with us!

Janelle Duplessis

Kat, There are no words to say how I feel in my heart. When I saw the pictures of your son my heart skipped a beat. He is gorgeous. Reading your story brings tears to my eyes as just 2 1/2 years ago, I too lost my baby. There are no words that anyone can tell you to make the pain go away. You will get to the point where "i'm sorry" starts to sound like pity instead of comfort. Then, the why's begin.. and what did I do to deserve this pain... While I was reading, I didn't cry until it came to what your pastor said, and he is right. The pain that you feel now is nothing compared to what is yet to come. I will be praying for you so that God may grant you all the comfort that you need. In a world where people take their children for granted, we will have to bury ours. For that I am sorry. For the pain that you feel when you see your son in the casket, Im sorry. But he is in a better place and without pain. So God knew you could take the pain, so he didnt have to. For that, God made you his mother... I will pray that My children in heaven watch over yours until you can get there to see how he is for yourself...
God Bless you and yours...

Samantha P

I am so sorry to hear about your little guy. It definetly brought back memories because just 4 months ago I lost my little girl to heart defects. You will find comfort with the little things...I'm so sorry

Jade Johnson

Your little Angel is SO gorgeous. He is a little tow-head. God Bless you and your family...you are in my prayers....
Tracy

Kat I wish I was close enough to hug you. I just want you to know if you need anything that a long distance friend can do let me know.

Shannon Schutz

Guestbook entries for 3/19/06

2006-03-19T23:46:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 19. 2006

Kat and family - I am so sorry to hear about the loss of your beautiful baby boy. He sounds like a real fighter, and I am glad that you have those last few minutes of precious time with him to hold onto.
~Bree

Kat and family
No words will ever take away your pain, but please know that I am so sorry for your loss. You and your family are in my thoughts and prayers.
Crystal

What a cute little boy! I'm so sorry for your loss. He is together with my little angel in God's beautiful garden.
God Bless his little soul.
^i^ Caroline's Mommy, Sarah

Alex is a beautiful little boy. Thank you so much for sharing his story with us. You are in our thoughts and prayers.

Kara Joey's Mommy

How am I suppose to do this?

2006-03-19T11:51:00.000-08:00

I can't figure out how I'm 'suppose' to act or feel. As a mother I think a lot of us think about losing a child, about how that would be and how we would feel but so far I'm just in a fog. Sometimes the emotions come strong and I'm left sitting on the floor sobbing and feeling physical pain in my heart, other times I'm laughing and remembering those long weeks in the hospital.

Today I've been calling everyone a 'bad egg' remembering nurse Lori and how she'd point her finger at Alex and say 'your a bad egg mister'. It made me giggle then and still does. People must think i'm crazy, off my rocker.

I miss Alex, I miss the people at the hospital that we had come to know and feel like I've not only lost a son, but an entire family. I've been running at mach 20 for 7 weeks and now that were home without him there's nothing to do, I feel lost.

Just like always, Craig and I are opposites. He cannot stand to read Alex's guestbook, or look through the things from the hospital. I on the other hand have thrown myself into it all, organizing his things, researching heart defects, posting on message boards.

Even though Alex gave us signs for days that the end was near, and I saw those signs and I think without realizing, prepared myself somewhat; his death still came as such a surprise. It was so fast. It's so hard to beleive that 4 days ago he was here, and then in the blink of an eye he is gone.

I think about the night before he died. I was at the hospital and I spent more time than usual at his bedside ( I tended to spend a few minutes touching him, then sit in the rocker and watch him, and repeat this process over and over) . I touched every part of him that I could through that evening. He seemed so at peace. A little tiny speck in my mind thought something wasn't right. His sats were bouncing around and I thought his fingers looked duskier than normal, his fingernails were a deep purple. It didn't occur to me that the next time I would see him would be to see them doing chest compressions on him.

I feel a lot of guilt. I regret that we didn't bring the video camera to the hospital and videotape every moment of his life. I regret that we didn't take more pictures. I feel guilty that he was born 4 weeks early, maybe if he had those last 4 weeks to grow he would have been stronger and better able to fight. So many things I would have tried to do differently had I only known.

I am grateful for the time we spent. God was so patient with us, waiting until we had learned some valuable lessons before he took Alex home. Alex was so patient with us, hanging on until we were as ready as we ever could have been to deal with this pain. I know 2 months ago we were not strong enough to live through this, Alex made us strong enough.

Yesterday we made funeral arrangements, tomorrow we pick out his stone. It is so surreal. The pastor told me we haven't begun to grieve yet, we are still in shock and that scares me. It scares me because the emotions are so strong, the pain is so raw that I don't know what Ii'll do if it gets worse.

I feel at peace in some ways. When I was running to the hospital that day I knew he was passing. When it happened the pain I felt was so extreme I thought my own heart would stop beating then and there. Then as the day went on I felt this overwhelming sense of releif. Releif that he wasn't huring anymore and I still feel that. I feel him all around me but no longer have to see him hurting, see his wounds and the constant oozing of blood from one site or another. He isn't hurting anymore. All he knew in life was pain and that has finally ceased, I'm grateful for that.

This peom will be on his memorial...

God saw you getting tired
and a cure was not to be

So he put his arms around you
and said 'Alexander come with me'

With tearful eyes we watched
And saw you fade away

Although we love you dearly
We could not make you stay

A special heart stopped beating
Your body it did rest

God broke our hearts to prove to us
He only takes the best

Fly high little bubba, fly high.

Guestbook entries for 3/18/06

2006-03-18T22:57:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 18, 2006

I'm sorry to hear of his passing.
Tina

I am so very sorry for your loss. You, your family, and your Angel in Heaven are in my prayers.

Beth N

Your entire family is in my prayers. I just read his whole stories and found my self full of so much hope during the good times, and sad to hear about his passing. He was so very strong, and so were you and your family. may God give you all the strength to get through this and the times to come.
Tiffany

Dear Kat and family,
Please know you are in my thoughts. I am so truly sorry for your loss. I have had you all in my prayers since the beginning and I truly look up to you Kat. I know we all keep saying how strong you are..but you are truly an exeptional woman. I think of your guys daily and you have help me appreciate my own life more. Thank you.

Lisa Cossette Cskye

Dear Kat, I'm so sorry for your loss, you and your family are in my prayers, it's nice that you all got a chance to say goodbye to him in your own, stay strong for Alex, trust me he is watching over you......
~*~Monique~*~(

I am so sorry for you loss of Alex. Just wanted you to know that your family is being thought of and prayed for. May God's peace surround you and know that Alex is in God's hands with all the other little angel babies that were taken too soon.

Kristin Ryan

Kat and family - may God watch over you during this time. We thought about you guys often and kept little Alex in our prayers every day. Sorry to hear of your loss.
God Bless,Jessica & Trevor

Kat i'm sorry to hear of alex passing
love Stephanie and family

I cannot express the deep sympathy I feel for you and your family Kat. Words can never ease the pain, but know that many are praying for you, your family and your new Angel.
Toni,Leif,Hunter,Isabelle, and Fisher Anderson

Kat and family we are so sorry to hear about your loss. You are all in our prayers. Please know that your little angle is at peace and in the best hand possible now. God Bless.
Carl, Lori Emily and Anna

A friend shared your carepage. I am so sorry about the loss of your precious alexander. We lost our Noah almost 5 years ago. Alexander will never be forgotten. You will keep his memory alive with every breath you take.Valerie

I happened upon your story on Baby Center. I want you to know that Alex was a beautiful baby and I am so very sorry for your loss. I will pray for strength, comfort, and peace for you and your family.
Christi in Kansas

Kat and family,
I know there are no words that can replace your loss of your sweet little baby, but I have witnessed the outpouring of love for you in chat, and I just wanted to offer my condolences. God bless. (sugarpuddin78)

Brandi Baker

Your little one is beautiful. My heart is full of prayers for you and your family. I have not had the chance to read the whole story but the bit I have was beautifully written. Take your time to heal and know that Alex will always be with you. All our love and prayers.

Tiffany Parker

Guestbook entries for 3/17/06

2006-03-17T22:29:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 17 2006

Kat and Craig and kids...
Im sorry to hear Alex passed away today. I was hoping and praying that he would be able to come home. He was a mighty fighter, giving you so many precious days with him. He isn't hurting now and God will take care of him as you would. God Bless.
Love ,
The Gillmore Family

You, and your family, are in my thoughts and prayers Kat. If you ever need to talk, cry, etc let me know and I will either talk with you via pm or call you. I just wish there was more I could do :(

Meghan Marcusse

Kat & Family, I cannot imagine what you are going through, but I do know that Alex is a very special little boy and he is watching over all of you, and although he was only here for a short time, he has touched so many lives. I wish that i could be there to hug you in person, but instead my prayers for you will have to do.
much love

Stephanie C

I can't take away your pain, I can't whisper a magic phrase to take away your sadness, but I can hold some of it for you for a time. My heart aches for you, and a bit of all of us left this world with little Alex today. I feel a bit of peace knowing our children have another guardian angel, and one who was loved so very very much. Time and love will ease your pain...one day at a time...and all the way we're out here all over the world loving you and praying for your family.
Beca, Tony, Greg, Nick and Sofia Amico

Kat, Craig, and Family,
I echo the words others have written here. Superbaby's little spirit and yours has made me a better person. Know that you all are in my heart and my prayers during this sad time.
Love Jessica and Family

I am so sorry for your loss. You and your family are in my thoughts and prayers.
Love,
Maria

I am so sorry for your loss.
My thoughts and prayers are with you all.

Michelle Tierney

Kat and Family~
I am so sorry for you loss. My thoughts and prayers are with you during this difficult time.

Heidi Toyne

Kat and family--my thoughts and prayers are with you. I am so sorry for your loss. May God be with you.
Lora

Alex was a fighter that will be missed by so many people. My thoughts and prayers are with you Kat, Craig and your children. Thanks for giving us the opportunity to get to know little Alexander, he has touched so many lives, he will be greatly missed.

Shannon Schutz

Darling Alexander you strong and faithful fighter,You came of this world in a whirlwind of miracles,It's not clear what the Lord has planned for you,but it is clear that He needed you with Him more.He brought you to your mommy and daddy to share your love with them,You did that and more they love you oh so very much,You all got to share your love if only for a while,You fought so very hard with trials every mile,our thoughts and prayers are with you all,they have been all the while.My deepest sympathies Kat and Craig and Family.Di, Steve, Cindy and Jasmine

kat .....i am so sorry. i wish there was something i could do for you and your family.. my heart goes out to you in your time of solice. please remember im here for you if you need a shoulder to cry on. i know its not much but i want you to know that i am here. my God protect him and keep him safe and warm. Alex.. u have been loved and will continue to be loved in your eternal life with God. remember you are specail and no one can take that away from you. NO ONE!
SHAn from Wisconsin!

Kat and family I was wanting to let you know that my family and I will be praying for you and your family. May God be with you through this time.

Heather Gabaldon

Kat and Craig, you guys are in my thoughts and prayers. Alex was a fighter and was loved by many. He will be truly missed.
Brandy Gatz

Im so sorry for your loss , I know words can not help any right now. but please know that God will not put more on you than you can handle :) I went through this in Novemeber 2004 when i lost my daughter to Hydranencephaly she was 11 weeks old! there is a book called "Mommy please dont cry" its AMAZING it helped me alot and maybe it can help you :) my prayers and thoughts are with you!
May Alexander keep you under his new wings :)

Jessica Randall

Sorry to hear about the loss of Alex. I have no idea how hard it is to lose a child but Kat (and family) please know that he is in great hands, now, also. My grandma passed away a week ago today and be rest assured that she is keeping an eye on your precious angel. Hugs & Kisses!

Mary Gillies

Kat and Craig and childern, my deepest sympathy goes to you and your family at this terrible loss...I pray for your family to have the strenght to carry on and to love eachother more and stronger..Baby Alex will always be in our hearts and we know he's watching over us along with all the angels in heaven..God Bless you and your family now and forever

Sonja Frazier

Kat and family-
I'm so sorry to hear about Alex. I can't even imagine the pain you guys are going through right now. He's with God now so rest assure he's in a better place. Again I'm so sorry, you know we're all hear to talk when you need us.
Diana, Jeff, Haylee, and Ashton

Your story has truly touched me and I am aching right now thinking of how difficult this must be for you. Alexander is a beautiful baby and I bet he looks gorgeous with his wings in Heaven. I pray that you can find comfort and solace in this tough time. Best Wishes and Deepest Sympathies to you and your family!

Lora Denton

I am so sorry to hear about your lose. I know Alex will be in your hearts forever. You are in my thoughts and prayerss. I wish your family the best.

Susan L

kat and family, i was so devestated to hear about alex passing, he was such a special lil miracle and still is. god has a higher purpose for him and i know hes a beautiful angel up there. there are some things i can never find the right words for and this is one of those times. i admire you and have always thought of you as a great mother, someone who i would like to be more like. this is going to be the hardest thing you have ever had to go through, but find strength in god and comfort in knowing hes not in any more pain and free from tubes and monitors. hes going to help do great things as the lord intended for him to do. be strong all of you. hes loved more then anyone will ever know!. if you need ANYTHING that i can do PLEASE let me know! we all love you guys kat, just take 1 day as it comes and cherish every minute that beautiful boy was in your life. were all here for you. take care and be strong.with all my love and thoughts melissa (spice) we love you all!!!

melissa meyers

Kat and Family...
I just wanted to say that my prayers are with you and your family in this sad time.
Christina

God bless you all. I am a July 05 mommy from BBC. I know that the angels are rejoicing in heaven today as they are welcoming your precious son. I promise I'll be praying for you and your family. Tina

Tina Christensen

Words cannot ease your pain, I am saddened for you and for the loss of your son....peace to you all.
elana weisberg

Words cannot properly express my condolences or your grief. I am from the Sept 05 BBC board and all our love and strength is coming out to you today and all the days after. I will be praying for your family and your little angel.
Christie

Kat, my heart goes out to you and your family. I'm so sorry that your sweet angel was taken from you, and I can't even begin to imagine how hard this has been on you and your family. What little Alex went through just doesn't seem fair. Your family is in my prayers.

Amy

I'm praying for your whole family...(((hugs)))))))))scheatham June '06 Babycenter

Sandy Cheatham

Kat, I'm so sorry for your loss. Little Alex was a fighter and you made his life wonderful. You and your family are in my thoughts and prayers.
Lighting a Candle

Jessica

I just want to say I am so sorry for your lose. I started crying the moment I started reading your story. I cant even imagine what you are going thru. You and your family are in my thoughts and prayers.

Lindsay Topping

I want to say I am so sorry for your loss. I am a friend of the Sharkeys (little Luke) and Becky and Todd asked us to watch over your little one online and pray for him. In this hard time know that there are many people thinking of you and you are not alone.
Heather

My heart goes out to you and your family. I'm so sorry that your little boy was taken from you, and I can't even begin to imagine how hard this has been on you and your family. You and your family are in my prayers.
Anthea - Kansas

I am so sorry to hear of Alexander's passing. He was an amazing little boy. Peace be with you all.
BabyCenter Mom (Oct. 04/Aug 06)
Niko's Mommy

Sharon Karamanol

I wish that you could have held your little boy just awhile longer. Thank you for sharing his life, and helping others remember what a precious gift our children our. I'll be hugging mine a little tighter, and playing a little longer. Blessings to your family now and always.

Molly P

I'm so sorry to hear about your little one's passing. Please know that you and your family are in my thoughts and prayers. He was a beautiful little boy.BBC Mom Aug 02/Oct 04/Mar 06

Sara Wiehn

I am so sorry about the loss of your beautiful little boy. (((hugs)))

Lisa Kippes

my heart is breaking for you and your family. I know i don't know you at all but my prayers and love are with you and your family. I am truly so very sorry for your loss.

Lee Mackanin

I am sorry to hear about your son's death. May God continue to watch over your family as during this time. God bless.

Jackie Middleton

I am so sorry for your loss. What a heartbreaking story. Prayers and hugs to you and your family.

Kristen Thompson

I am so very sorry for your loss. Your entire family is in my thoughts and prayers. Alexander must have been a very special baby.

Miranda Traylor

What a sweet & brave little boy.
My thoughts and prayers are with you and your family.
May God be with you now and always.
Hugs,
Kim

Your family is in our thoughts and prayers... May God bless you in this terrible time. Melissa

I am so sorry for your loss. Alexander was such a strong, brave little boy. I will keep your family in my thoughts and my prayers. God Bless you all!
Melanie

My heart breaks for you right now. I am praying for you and your little angel in heaven. God Bless you all.
Amber

Alex,
We only knew you for such a short while, but you and your family have touched our lives in a very special way. We know that you are in a better place and are able to bask in the glory of heaven. Remember to keep watch of your older siblings, and to remind mom and dad to continue to be the strong and courageous people that we have come to know. We will miss you, and we pray for your continued care up in heaven, and for your family.
Love,
Todd, Becky, & Luke Sharkey

I am so sorry for your loss. You and your family are in my thoughts and prayers! God Speed!

Deanna M

I am a member of BBC (April 06 board). I am so sorry to hear about your loss. I will keep you and your family in my prayers.

Cassandra Hernandez

I'm from May 2005 BBC Board. I just wanted to send my sympathy to your family. I'm so sorry for your loss. Your family is in my prayers.

lela whipple

I am so very sorry on the loss of your precious son. I am praying for God to give you comfort, strength and peace. Fly high baby Angel Alexander!
love and prayers,

Debbie Campbell

My heart breaks for your family. May your family find strength in eachother. Alex is dancing on clouds. What a sight that must be. How blessed you are to have had him.
Denise

I am extremely sorry to read about your loss. May the little soul rest in peace and may God give you and your family the strength to live on.

Jaya Dasgupta

I am so sorry to hear about your loss... you and your family are in my heart and prayers. God bless you and your little angel.

Tamrah

May the Lord give you strength, my prayers are with you. The angels above are holding your dear Alexander, who is free from tubes and pain. He will sleep in peace. God bless you!

Julie Jones

Kat and family-
All day long I've been tearful over the loss of your precious little baby boy. What a tremendous roller coaster you and your family has ridden over the past weeks, and how brave and strong you all are. I'm sure that there are no words that could ever soothe your aching souls right now, and there may not be any comfoting thoughts, but Alex is in a place all his own where he can breathe and be a littlle boy. He'll always be watching over you and always remember how much you loved him and cared for him in the short time he was with us on this earth. I don't know you from anywhere else but BBC, but you and your family are truly an amazing inspiration! Thank you for sharing Alex's life with us! I will continue to pray for you and hope that you find comfort soon.
BBC Mom February '05

Katie Stoltz

I'm so sorry about the loss of your beautiful son. Your family is in my prayers.
Karlee

My heart cries with you.Your baby is precious.May the good Lord take care of you and your family in the days ahead. Be strong and never give up hope.

R J

I am so sorry for the loss of your beautiful baby boy. The story of Alex touched me deeply and I will keep him, and your family, in my thoughts and prayers.

Desiree Lainen\

A peice of our hearts left earth today

2006-03-16T11:48:00.000-08:00

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

Guestbook entries for 3/16/06

2006-03-16T10:24:00.000-08:00

The following are entries to Alex's Caringbridge guestbook on March 16. 2006

Alex,
Keep fighting each and every day. We know how much your family loves you and wants nothing more than for you to feel better. You have been in our prayers, and Luke is pulling for you, too! Keep pushing forward little man!
Love from your floormates on 5C,
Todd, Becky & Luke Sharkey

We just got the news.
No words can help, but know that in God there is strength.
Love Always,
Patrick, Katrina and the BE Family

Dear Kathleen, Craig and family,
I'm just so sorry. There seemed so much hope -- so much possibility. My love and prayers are with all of you.
Gail

go rest high on the mountain Alex

Tricia Myers

God Bless you little man.....Our hearts and prayers are with you, Mommy, Daddy, and your siblings.

Angie Poepping

I know words aren't enough at a sad sad time like this. Just know that i'm here for you if you need an ear to cry to and just someone to vent to. Your family is in my thoughts and prayers during this very difficult time. God has a very special little angel by his side.

Heather Prosser

Blessings to and for the family and friends of little Alex. In your time of sorrow be rest assured Alex will remain in your hearts and your love will guide his spirit and your brightest memories of him will guide you.

Heather N

Dear Kat and family,
I just heard the news a little while ago. I am so sorry for your loss. I know you have to be dying inside and nothing I say will ease your pain. Just know that my prayers are with you and your family during this difficult time.
Love,
Dani, Morgan, and Vincent

Dear Kat & family, I'm so sorry. I wish there was more I could say or more I could do. but know a lot of people love yall to death & we all have a special place in our hearts for alex. I will continue to pray for you & your family & I'm sure many others will tooLove always~*Kris*~

Guestbook entries for 3/15/06

2006-03-15T22:22:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 15. 2006

Baby Alex you are in my thoughts and prayers. I started a prayer chain for you little man. Tons of people are praying for you. Don't give up. Kat and family my heart aches for you. If you need anything, ANYTHING please don't hesitate to ask. Thats what we are here for. May God lift you up. Kera

Kera Melton

Guestbook entries for 3/14/06

2006-03-14T22:17:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 14, 2006

Alex,
Hey sweetie! Im praying like crazy for you! I know your a strong boy! Keep fighting!
Kat and Craig I pray for strength for you both of you right now! I cant imagine how trying and hard this has all been for you! You have a strong little man and he will fight!!
Love ya!!
Jackie

We Love you SuperBaby Alex, We pray that the doctors and nurses take care of you little man, KEEP FIGHTING!!!! Kat, Craig and Family, May God give you peace, and strength to help Superbaby through this. Love Jessica and Family

Jessica Erlandson

Keep fighting little guy. You hold a special place in all of our hearts.
Love, Rachel, Mike, and Lilly

Kat n Craig i'm sure you know this by now but you've got TONS of people pullin for you guys n baby alex and we wish you all the best!
Trish, Dave, Emilee, Tyler, Meghan, N Xavier

we are keeping all of you in our prayers-
Love
Frank&Justine Kucera

Alex,You are a fighter wee man, and you have so many people praying for you and your family. We are all pulling for you all. Stay strong lil man. Kat and Craig, our prayers are with you also.Love,Diane, Steve, Cindy and Jasmineaka Di

Kat, our thoughts and prayers are with you, baby Alex, and all of your family right now. Hopefully this is the last setback and once you get through this it's smooth sailing from here on out!
Meghan

aww kat i'm so sorry this is happening to him and your whole family, none of you deserve this. hes made it to far though to give up! hes a fighter all the way, and maybe this is his way of scaring the hell out of you 1 last time befor he comes home. your in my thoughts and prayers all day and night. you all stay strong, were praying for him and that hes home befor easter so he can see the easter bunny and get a cute pair of those fuzzy bunny ears..lol love ya all stay stong!
melissa

Dear little Alex:
I hope you are doing well today, You've been on my mind all day. I really would like for you to take that step and try try try and get better for your mommy and daddy. You're mommy loves you so very much, and you have so many people who care and really wish for you to get better. Hang in little man, we are all praying for you. Take care of yourself.

Victoria Tunney

awww...kat i send you all my prayers. if i could give you more i would in a heart beat. that little man has gone through so much and so have you and your family. i am only wishing for all the best in his outcomes in the next few days.. its a long hard road to travel but i have faith he will make it ok. hes a fighter and will continue to be that way. God Bless you and the family. if you need anything DONT hesitate to ask ok..
your in my thoughts and in my prayers,
SHAN from Wisconsin

Day 45

2006-03-14T11:47:00.000-08:00

Alex has had a rocky weekend. He's been a bit unstable with his blood pressures. We have been told that they are walking a fine line with him, trying to get his heart to do the work it needs but trying to keep the fluid off him at the same time. He's really been struggling and needing extra help.

He seems to not like nighttime, apparently it just gets too quiet for him or something because he will be fairly stable all day and then at night drop his pressures time and time again.

Alex's head ultrasound showed no brain bleeding, they said the bruising is from some broken capillaries in his chest wall and since they had toseparate the layers in there it just seeped into the tissues and that's why he's bruised. It'll go away in time.

They were able to wean down his dopamine on Saturday but he is still needing his epinephrine, in fact last night they had to increase the dose to help his blood pressures. They really want him off the epi because although it makes his heart pump harder and faster, it constricts the blood vessels. He has been unable to tolerate any of the vasodilators they have tried to give him and he can't go back on the one he tolerated because his kidneys aren't working enough to excrete it. They are also trying to wean him off the steroids he needed a few weeks back, they think they are responsible for the broken blood vessels and also they inhibit healing and obviousely he doesn't need that to happen.

The little guy really needs our prayers. We really need him to stop walking that fine line and just take a good step in the right direction. His doctors are very worried about him right now.

Guestbook entries for 3/13/06

2006-03-13T22:13:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 13, 2006

Alex, I am praying for you. Hang in there little guy... I know you have been through so much already, you have proven to be strong beyond anyone's expectations! I am praying for your Mommy and Daddy too. {{Big Hugs}} to everyone...

Beth P.

Keep fighting lil guy.

Celina Maclean

Alex you are a strong little man. Keep fighting sweetie!!!

Brandy Gatz

My hopes and prayers are with you. I pray for strength and courage for that little body and soul. I pray for comfort and support for your family. Surround all of you with God's all abiding love.
Aunt Gail

my thoughts and prayers are with you tonight and always. Heres hoping that tomorrow is a better day ...
keep fighting alex!!! we love you!!
Steph

Stephanie C

Day 43

2006-03-12T11:46:00.000-08:00

Alex needs prayers today. His whole body is bruised. right now they are thinking it's from when his hemoglobin dropped on Friday night and the blood is now finding it's way to his tissues. From a neurological standpoint........we don't know. This mornign and overnight he wasn't responding to things that normally make him mad, now when she turned him he did move some and his pupils look normal. His soft spot on his head is a little firm, but not bulging. I'm sure they will be ordering a head ultrasound today.

His blood work looks good, his blood pressure is stable as are his sats, heartrate etc. He's a little acidotic but better than he was yesterday, they haven't gone up on his vent settings again as of now. The fluid they are getting out of his pd is pinkish tinged now instead of clear/yellow as it was and should be.

Docs are in rounds so I'll know more later

Guestbook entries for 3/11/06

2006-03-11T22:11:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 11, 2006

sending you all my hugs and kisses-come home soon- like always you are in my prays. hugs and kisses from grandma theresa and george

theresa marcoux

Hi Kat, Craig, and kids!! It is soo good to hear little Alex is coming along. I pray for you every day! God speed little man!

Angie Poepping

Day 42

2006-03-11T11:46:00.000-08:00

Alex had a bit of trouble with his blood pressure last night. We think it was because he was losing a bunch out of his chest tubes (he apparently thinks this is the way to get extra fluid out of your body, he needs to realize that's why God gave us kidneys) and because the site around his chest tube they replaced was bleeding. He got some blood and he's been doing good all day, even being quite generous with his pressures which led them to wean his dopamine to a 'keeping the line open' level and tonight they are going to start weaning his epinephrine.

They also decided to give him some more iv nutrition which is obviousely something he needs to heal, as well as it will help to replace some of the fluids he's putting out.

His pressure sore on his head is looking a tiny bit better, hopefully it will heal quickly.

Currently Alex's kidneys aren't working. That is probably partly due to the fact that he's losing so much fluid through his chest tubes and that they are pulling the rest off with the PD so his kidneys have nothing to filter, but we would like to see him peeing at least some and currently he's not which is worrisome.

He stopped oozing from his incision today which is a very good thing, it needs to be dry to heal and with all the oozing it's been doing it has been holding up the healing process so maybe now he will start to heal better so we can hold him. His surgeon saw him today and said it looks ok, he's confident it will heal fine.

They did have to go up on his vent rate twice today because his blood gasses were coming back acidotic, why this is no one is really sure but it may be related to the trouble he was having overnight, he is just needing a little more help from the vent to get over the bump.

Alex has learned a new trick to make mommy panic. When they flush his RA line or suction him he drops his heartrate, I've seen it go as low as 17. He really needs to realize that these tricks aren't funny.

Guestbook entries for 3/10/06

2006-03-10T22:11:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 10. 2006

I continue to pray for your family and yourself Kat. I am glad to hear Alex is staying stable and making some progress. Keep fighting Alex and you'll be home sooner than you think!

Shannon Schutz

Day 41

2006-03-10T11:45:00.000-08:00

Another decent day. We had the skin doc come and look at his head and she says that she thinks it's starting to heal, it's clean, and to just keep putting antibiotics on it and keep him off it.

Dr Foker came and said his incision looks good, but everyone else agreed he's on crack (nurses words, not mine) because it's a mess, but if Dr Foker is happy, were happy. He will definitely have a lot of scarring, from where the stitches have pulled and ripped his skin, but that's ok.

After spending much of the day working on clearing one of his chest tubes that wasn't draining (it was coming out every hole in his chest instead) they decided to place a larger tube in and so far it seems to have done the trick. If it doesn't work out they may have to take all the tubes out and replace them in the sides of his chest through his ribs instead.

They also decided today to start to wean one of his cardiac meds, dopamine. His pressures since have been fairly low, in the mid 60's (they want him above 65 to wean the dopa and above 55 all the time systolic) but they think that part of that may be that with the PD they have really dried him out so they are going to work on fluid replacement.

The nurses also discussed turning his O2 down on his vent cause his sats are in the high 90's and since he's a mixer (his red blood mixes with his blue blood in his heart through the ventricular septal defect) they don't really need to keep his sats that high. We'll see about that

To get out of the ICU we have to be off the vent and off all cardiac meds via IV (he may go home on oral) so that's the plan right now, to wean him off all that and get his kidneys working again. They aren't right now and whether that's because he's so dry from the pd or the fact that his heart is stressed is unclear at the moment.

Hoping to hold him soon!

Guestbook entries for 3/9/06

2006-03-09T22:09:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 9, 2006

kat...im still praying for you girl...keep your head up all will be ok. and Alex keep coming up the hill u will make it i have faith. its a long road to travel but someone as special as you(Alex) deserves only the best......god bless you all
SHAN from Wisconsin

Day 40

2006-03-09T11:45:00.000-08:00

Alex continues to be stable. He has passed the 48 hour mark and is doing well, although obviousely still critically ill.

They went down on his vent settings today because he was fighting the vent a bit, basically breathing over it and his blood was showing he was getting too much oxygen so they turned it down a bit.

I am a bit, ok a lot concerned about a bedsore he has on the back of his head though and am going to request that the skin docs come and take another look at it as it seems to be getting worse instead of better with current treatment which involves a medicated dressing and turning him side to side to avoid pressure on the sore. We'll see what they decide to do.

His incision is beginning to heal although it still looks rather yucky. It's definitely not a 'clean close' but it's closed and they said they will do some plastic surgery on it with his next OHS and make the scar better, but honestly a scar is the least of my worries........that's what t-shirts are for right?

Guestbook entries for 3/8/06

2006-03-08T22:08:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 8, 2006

Way to go Alex!!!!! Keep up the good work little man. I know you're Mommy and Daddy want to hold you very soon so keep at it.

Brandy Gatz

hooray alex and kat and family..... this is terrific news to hear. finally huh?...well you all are still im my prayers and Alex be good and keep fighting your a fighter and for that you are blessed. may God bless you all and keep you safe and warm
SHAN from Wisconsin

Woohoo!! Way to Go ALEX!!! .... prayers are there with you for a fast recovery so Mum and Dad can give you loads of cuddles!!. Get Better soon.

Tegan Nadler

Day 39

2006-03-08T11:44:00.000-08:00

He's closed!!! Dr D worked for 4 hours to get the skin sewn together and it's very very tight, he said it was the toughest close they've ever had but he refused to give up. It was so tight they had to put in smaller chest tubes and take out the pacemaker wires (which are no larger than stereo wires) because there was just no room for anything not directly needed. (He's never USED his pacer, it's just been there just in case).

Last night they started chest irrigation since on the 28th of Feb they grew some bacteria from his chest culture. Unfortunately that's not working very well since the new chest tubes are so tiny, the fluid isn't able to flow back out of them and it's instead leaking out his chest (this child sure loves to leak!) Good news, the dialysis is now working properly.

He's doing good considering. He's been pretty stable. They had to knock him out though because he was really fighting the vent this morning and it was making his heart work harder which they don't want right now. This first 24-48 hours are pretty rocky and they just want to ride it out as easily as they possibly can.

Guestbook entries for 3/7/06

2006-03-07T22:06:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 7, 2006

Glad sweet baby Alex has had a good couple of days. Hope your taking care of YOU, sometime during your days.
Hugs

Jamie Russell

Craig and Kat, it's great that the little man has been getting better, we're praying that there's no more set back's!!!! Now maybe he can gain some real weight. Take Care,DeDe

I'm from the Feb. babies bulliten board. I found out about your son the day before I delived and have been periodically checking up on you guys. I happy to hear that you have such a strong little man. I pray that you and your family are doing well and that your son will continue to get better.

Melissa Trivett

Day 38

2006-03-07T11:44:00.000-08:00

Today has to be the day. There's another washout scheduled for 10:30 (yeah right lol) and all the fluid is off him so he HAS to be closed today. So keep those prayers coming!

They figured out the issue with the dialysis fluid. Apparently when in his second surgery his spleen bled they first tunneled down around his diaphragm to get to it, and now the fluid they are putting into his belly is leaking through it and coming out of his chest. As of yesterday the cardio docs didn't seem too concerned about this, but the renal docs didn't seem too thrilled. Apparently the cardio docs won.

ooh rounds are done, time to go see my bubba! More later!

UPDATE: They decided to go in and fix the hole in his belly, he went into surgery at 11 and they said 4-5 hours....... which means 8 hours. More later!

UPDATE: Just got a call from the nurse. They fixed the hole with no problems, were able to close his sternum with no problems. Now they are meticulousely working on getting the skin closed. It's rather chewed up from so many times of having to sew the "heart bandaid" on. But Dr D is determined!

Guestbook entries for 3/6/06

2006-03-06T22:05:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 6, 2006

Hey little Alex, this is your buddy, Luke's mom. Hang in there kiddo. You have to get better soon because Luke isn't in your room anymore to show you how to be naughty. Just remember that your little life is so important to God, your parents, and to all of us, so you just work really hard to get better so that your mommy and daddy can hold you again.
Kat and Craig, Todd and I know how hard it is to ride the emotional rollercoaster at the hospital. One day at a time, and don't lose hope because first of all, God is very merciful and secondly, these doctors are so caring and don't want to give up until Alex is ready to go home. All of you are in my prayers, and stop by if you need to commiserate. See you around!
Becky Sharkey

Day 36

2006-03-05T11:43:00.000-08:00

Another good day! Alex is showing his defiant side and refuses to stop oozing fluid and making his ioban (a sterile sticky film much like saran wrap that goes over his chest) fall off. Today he earned the nickname "ioban man" from one of his docs because they had to replace it yet again and they had to practically wrap the kid in it like a mummy..and it's STILL coming up lol

He's also doing something they can't quite figure out, somehow instead of putting the fluid out of the dialysis cath, he's actually putting it out his chest tubes. He loves doing things HIS way and not thier way. Whatever the case may be, he was -166 cc's of fluid by 3pm, so it's workin.

Day 35

2006-03-04T11:42:00.000-08:00

Alex had a very good day depsite yet another OR procedure to put his catheter in. He didn't bleed! He's "oozing" from the site but no hemmorages so that's great!

The PD catheter is pretty interesting. Every 30 minutes they put in salt and glucose water and then at the end of 30 minutes they let it drain out, the idea is more out than in. They started it at about 6:30pm and so far he's tolerating it quite well and getting a few extra cc's more out than in at each "pass". His blood pressure comes down a bit when they drain it but not so much that people get scared, they just fuss with him a bit and it pops back up. They said it's from the fluid shifting.

Dr. D talked to us after the cath was put in and they are planning another wash out/closure attempt on Tuesday, hopefully he will have enough fluid off by then that he will tolerate it and finally be closed!

Everybody send Alex some "keep up the good work!" vibes!

And a big congrats to Alex's old roomate Luke, who is officially off the vent!

Guestbook entries for 3/3/06

2006-03-03T22:04:00.000-08:00

The following are entries made to Alex's Caringbridbe guestbook on March 3, 2006

Kat and family,I keep you all in my prayers daily. You are all very strong and God is watching over you all. Little Alex we are all praying for you and hoping you all will be able to go home soon. Take care all of you. Di

Day 34

2006-03-03T11:41:00.000-08:00

Alex wasn't able to be closed today again:(

It's still too tight in there and he dropped his bp when they tried, although not as much as before. So tomorrow he gets his new peice of equipment, a dialysis catheter. It was described to me as they put salt in his belly and then suck it out, bringing the fluid with it. So hopefully they'll get all that fluid off him in a few days and they can get him closed.

Otherwise he had a decent day. He was stable all morning and started peeing a bit more. After the washout he was a wee bit unstable for about an hour but he looked good this evening.

Guestbook entries for 3/2/06

2006-03-02T22:02:00.000-08:00

The following are entries posted to Alex's Caringbridge guestbook on March 2. 2006

Alex,
Everyday your little face fills my mind and say a small prayer for you and thank God that you are getting so much better everyday. All I want is for you to be home with all of your loving family and being healthy for the rest of you life! Keep taking baby steps because they always lead you back home where you should be! *hugs and kisses* from the Majors family!

Day 33

2006-03-02T11:41:00.000-08:00

We got a phone call very early this morning to let us know that Alex was unstable. We got the kids to school and went to the hospital and they said they didn't know exactly what was going on but his blood gasses looked bad and there was evidence that his kidneys and liver were starting to take a turn for the worse. They were suspecting either a bleed or an infection. They ordered a full body ultrasound to look for bleeding.

Through the day he continued to stabalize himself, his blood gasses were looking better, his liver and kidney tests were looking better, his blood pressure was good.

The results of the ultrasound showed bleeding between his brain and skull. To what extent I don't know. He's having a CT scan done tonight to make sure there isn't any active bleeding (they are pretty sure there isn't at this point) and whatever else it is they look for so we will know more about it in the morning.

He did have a chest washout/possible closure scheduled for tomorrow but i'm unsure if they will still do it tomorrow given todays events.

_____________________________________

Update: The CT scan revealed it's not blood! It's just fluid and doesn't appear to be compressing his brain! Very good news!

Guestbook entries for 3/1/06

2006-03-01T22:00:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on March 1, 2006

I am from the babycenter birth club and just wanted to let you know you are in our thoughts and prayers. I was getting worried since we really haven't heard much. Sending lots of love, Sarah

My mother, Vonnie Bennett had sent me an update on little Alex. My prayers are with you in this time. Your baby will continue to receive God's blessings as he moves further in his treatment. He is not alone and you are not alone. God Bless,
Kris

Hi Craig Kat and Family, I hope everything is going okay!!If there is anything I can do back here please let me know! You have enough to worry about. We're all thinking about you.Lex keep trying, we're all rooting for you!!!! You are a tough little man.

DeDe Brogren

Day 32

2006-03-01T11:40:00.000-08:00

Alex is continuing to stabalize from Friday's episode. They did the wash out yesterday and were able to get him partially closed but he just wasn't ready to close completely, which I entirely expected.

Today they restarted his nutrition which is good cause it's hard to heal when you aren't getting any nutrients.

Alex still needs those pee vibes, he's not doing so great in that department again and he's puffing up again which just sets his closing back further. Were frustrated.

Guestbook entries for 2/28/06

2006-02-28T21:58:00.000-08:00

The following are entries to Alex's Caringbridge guestbook on February 28, 2006

Hey guys!
Hopefully little Lex will be healthy soon. I read your journal every day hoping to hear good news. He has so many people praying for him. Get better soon Alex we all want to see new pictures! Come home soon little man, I want to come up this summer to meet your mamma and you!! Even though we haven't met Kat I still feel close to you. Take care and stay strong guys
Diana Darken, Addison Illinois

Alex,
May God Bless and be with you. I pray for you today and every day. Love you, Great Aunt Lynn

lynn coleman

Guestbook entries for 2/27/06

2006-02-27T21:55:00.000-08:00

The following are entries made to Alex's Caringbridge guestbook on February 27, 2006

We are praying for you daily, Alex & family. I am a Rice Lake, WI friend living near Gail Smith in Gaithersburg. The healing hand of our heavenly father be with you this day and also with you family! Vonnie and family

vonnie bennett

Continuing my thoughts and prayers!
Much Love!
Jamie

Kat, I don't know if you'll remember me... I'm "abbygen" or "Abby_&_ Genevieve's_Boss". I just found out about Alex and wanted to let you know you and he are in my prayers! He's such a strong little guy to have been through so much so soon. God Bless. Aimee

Aimee Cacurak

Still praying for you daily little Alex. Keep being strong !
Your in my thoughts Kat and Craig.

Shannon Schutz