Thursday, March 30, 2006

What is normal?

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.

Monday, March 27, 2006

God is in control, like it or not

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.

Saturday, March 25, 2006


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

Friday, March 24, 2006

Everything is blurry

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:

'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

Tuesday, March 21, 2006

Guestbook entries for 3/21/06

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

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

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

Tabetha Hodge

Monday, March 20, 2006

Guestbook entries for 3/20/06

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

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

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 are in my prayers....

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

Sunday, March 19, 2006

Guestbook entries for 3/19/06

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.

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.

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?

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.

Saturday, March 18, 2006

Guestbook entries for 3/18/06

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

I'm sorry to hear of his passing.

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.

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......

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

Friday, March 17, 2006

Guestbook entries for 3/17/06

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 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.

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.

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.

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.

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.


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


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.

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.

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!

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

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.
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.

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.


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.

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.


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\

Thursday, March 16, 2006

A peice of our hearts left earth today

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

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

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

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

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

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

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

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

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

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

or to the Ronald Mcdonald Charities at

Guestbook entries for 3/16/06

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

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.

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.
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*~

Wednesday, March 15, 2006

Guestbook entries for 3/15/06

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

Tuesday, March 14, 2006

Guestbook entries for 3/14/06

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

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!!

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-
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!

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 love ya all stay stong!

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

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.

Monday, March 13, 2006

Guestbook entries for 3/13/06

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!!

Stephanie C

Sunday, March 12, 2006

Day 43

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

Saturday, March 11, 2006

Guestbook entries for 3/11/06

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

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.

Friday, March 10, 2006

Guestbook entries for 3/10/06

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

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!

Thursday, March 9, 2006

Guestbook entries for 3/9/06

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

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?

Wednesday, March 8, 2006

Guestbook entries for 3/8/06

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

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.

Tuesday, March 7, 2006

Guestbook entries for 3/7/06

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.

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

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!

Monday, March 6, 2006

Guestbook entries for 3/6/06

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

Sunday, March 5, 2006

Day 36

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.

Saturday, March 4, 2006

Day 35

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!

Friday, March 3, 2006

Guestbook entries for 3/3/06

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

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.

Thursday, March 2, 2006

Guestbook entries for 3/2/06

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

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

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!

Wednesday, March 1, 2006

Guestbook entries for 3/1/06

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,

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

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.