Saturday, June 12, 2010

Hardest blog I have ever written

My sweet, beautiful, baby boy, Blake has passed. This is by far the hardest thing I have ever encountered in my life. I'm not really sure how I'm going to function without him. I've been in a state of shock for most of the past two days. Sometimes I realize that this is really happening, and other times I try to think that he's still in the hospital, and we'll be able to bring him home soon, just like he was when he was a newborn. I miss him so much. I feel like I have this void in my life now; I miss being his mommy. I have no one to take care of now, and I feel absolutely empty. I guess I'll start at the beginning of when the problems started.

Thursday morning, June 10, 2010, around 7:00 am, I awoke because Blake had started coughing. It sounded like he was a little congested, so I immediately picked him up and tried to help him, patting his back and such, and he seemed to get whatever it was out and rubbed his face on my shirt. Typical Blake. The night before had been normal, he was his normal adorable, happy, alert self. I actually took a picture of him from the night before.


As I was holding him, he smelled like he had a dirty diaper, so I went to change him. Normally when I change him, his hands go immediately to his private area, just because he is so incredibly itchy, and we always have to hold his hands down so he doesn't hurt himself or bleed from his grip. This time was no different, he was grabbing at himself, mom came in to hold his hands for me, and maybe two seconds after he just fell asleep. We thought that was odd, but figured he was probably tired, since we normally don't wake up until 11:00 or so (we're night owls). So I laid him back down, and what I thought was in his sleep, he started whimpering a little, but stopped quickly too. I thought he was having a nightmare, but since he stopped soon, I went back to sleep. A little later, like around 10 or 11, he started to do it again, so I picked him up and snuggled with him for a bit. He was still what I was thinking, asleep. After a while I got up to get ready for the day, and when I was done I decided it was time to wake him up, thinking that he was just being a little sleepy head. He wouldn't wake up. I went and got mom, and we rushed him to the ER. I was able to get him to eat a little bit, and he was still fussing and squirming oddly, and we were both scared to death. There they did a CT scan and confirmed that he had blood on the brain. I was fearing that the whole time, because I remembered being told that some babies with AGS had weakened blood vessels. They tried to stop the bleed and such by giving him blood and saline water (he was severely anemic and his sodium was very low). They eventually had him flown to Shands in Gainesville, but for some reason I couldn't go with him, which broke my heart. We drove up there though, and when we were about in Tallahassee they called me to tell me that the only thing that Blake is doing is taking a breath occasionally, and his heart was beating. They told me that the bleed was catastrophic, and that he's otherwise completely brain dead. The last two and a half hours there was so hard. When we took him initially he was breathing on his own, and responding to some stimuli. And now, since I'd been gone, all of that had gone.

When we made it there, he was still breathing over the machine every once in a while. It was so, so sad watching him hooked up to everything like that. They said that the bleed was so bad that it had to have started the day before, but nothing at all showed. The day before I took him to party city to get a start on planning his first birthday party. Now I'll never get to.

They had a rule there that only three people at a time can be in the room with the patient. Me, my mom, and my sisters all came, and that would leave one person out. Luckily the doctor told the nurse to make an exception. The first nurse wouldn't let me hold him or anything, but then another nurse came in, who wasn't really his, but took over, and let me hold him, and that's how I slept that night, for about the hour that I slept, holding him close and giving him lots of kisses. Once when he was laying down before I picked him up, he reached out his hand and I put my finger in it and he grasped it so tight it hurt. I'm sure it was just reflexes firing off in his brain, but I'd like to think he was squeezing my finger to let me know how much he loved me. When I woke up with him he had gotten all these bruises all on his body, they said because of his liver. It was so sad to look at. Eventually I had to go to the bathroom, which meant I had to put him down, which was so, so hard. I knew they were all waiting on me to make the decision to take him off of all the machines, but how could they expect me to do that? How could they expect me to let him die like that? Hours later, they did some tests on him to see if he was completely brain dead or not. That was extremely hard to watch. Especially the apnea test. I watched my beautiful little boy not breathe for five whole minutes. Twice, since they repeated the test, just to make sure. He was declared officially brain dead, though his heart was still beating, but they told me that his heart could beat for a very long time and still be brain dead, so long as they kept him on the machines. Finally I made the decision to take him off, since there was no hope left at all. My little angel passed finally at 12:40 pm, at exactly 45 weeks old. I conceived on a Friday, found out on a Friday, gave birth on a Friday, and lost my whole world on a Friday. When they did, they handed him to me, wrapped in his favorite blanket, and it reminded me of when he was first born. I took my shirt and bra off and laid his bare body on my bare chest and covered us both with his blanket. I sat there like that for about an hour, and let my mom and sisters hold him too. It was so hard holding his lifeless little body, so hard. I think the nurse (a new one...shift change) thought I had lost it, since she looked at me like I was crazy when I laid him on my chest like that. Later on she came in a couple of times trying to get me to lay him back down, and I told her not yet. I couldn't give him back. She said, "You know he's gone right?" Of course I knew that. But he was still my baby. This was the last time I could ever hold his precious little body again, could she not understand that? His head was pretty cold by the time I gave him back, but everything else was still warm, probably because of the kangaroo care I was giving him. I kissed him a ton, sang to him, talked to him, rubbed his back and nuzzled his hair like I always had done. When I finally had to put him down, I was still bawling and kissed him so many times. He looked a lot like my dad did, laying in the hospital bed, dead. When I left I had to leave quickly. I was so hard giving my little baby back.

Before they took him off the machines, they had a little hat on him, and it reminded me of when he was first born also. He looked like a little baby doll.

Sorry, this is kind of not in great order, but my thoughts are so scattered right now.

Afterward I was standing outside with mom, crying, and a dragonfly, dark blue, just like Blake's eyes, came and landed on a bush near us. I pointed it out, and it just kept coming closer and closer, until it was very, very close to us. It kept looking like it was looking at us. It was alone, no other dragonflies around. I hope so much that it was Blake telling me that he's going to be okay, and that he's with Grandpa now. I hope so so so much that was him letting me know that he'll be okay and wait for me when I go. I keep feeling like this is goodbye for now, not forever, and I don't know when I'll finally really grasp that this is for forever. I can't throw his pacifiers away, I can put his bottles away, I won't ever get rid of his clothes. We share a room, that empty crib....I can't do this.

His liver doctors had come to visit while we were in Shands, before he was declared brain dead, and they said they think a blood vessel in his brain just spontaneously popped. They told me that weak blood vessels occur in about 10% of AGS cases. Death also occurs in 10%. Such low percentages, but not low enough. I didn't think Blake would have either of those, he had such a relatively mild case of it. So many others were much worse off than him, I thought he'd be a fighter for the rest of his life, his long life.

I'm not a religious person at all. I don't believe in heaven or hell or God, but I hope so much that there is something, anything, after this life. I hope his spirit really does carry on, I hope so, so much. I can't live with the thought that his soul is gone forever. I have to know that he will live on, maybe in another form. I have to know that. He was such a little sweetheart, and so loved. I'd sit down next to him and he'd crawl over to my lap, climb on me, when I got home for work he'd get all excited, he would give me his slobbery kisses, try to share food and pacifiers with me, just so sweet and loving. I can't do this.

Thank you so much to all the people who give their condolences. We don't need anything at the moment, but thanks so much. I'm not ready to see anyone either, but thanks anyway. I just need to be alone for a little while. To miss my sweet little angel that lost in the cruel battle of AGS.

Rest in peace, my beautiful little boy, Blake Konnor Postlewate.
July 31, 2009 - June 11, 2010
I love you so very much, always and forever.


Saying goodbye. <3


Noah's mum said...

Dearest Sheila I hope the following poem brings you a little comfort.

The Dragonfly

Once, in a little pond, in the muddy water under the lily pads, there lived a little water beetle in a community of water beetles. They lived a simple and comfortable life in the pond with few disturbances and interruptions. Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They knew when this happened; their friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He would come back and tell his friends what he had found at the top. When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired, and the sun felt so warm, that he decided he must take a nap. As he slept, his body changed and when he woke up, he had turned into a beautiful blue-tailed dragonfly with broad wings and a slender body designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed. Then he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended. But, his new body would not go down into the water. He could not get back to tell his friends the good news. Then he understood that their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!

Words can not describe how saddened we are to hear of the terrible loss of little Blake.

Lots of love from the Price family, Australia.
Noah (3 - AGS)

sheila riannon said...

Thank you. That is a lovely poem, and brought tears to my eyes. AGS is such a cruel, cruel disease.

D K Mitchell said...

Darling girl, it sounds like your little angel had the very best mother in the world, and the light of his memory will shine in you forever. Hold on to the memories not the sadness.

Carm and Brian said...

Your son is very lucky to have such a loving, caring, thoughtful mommy. I can't imagine what you are going through, but I will be thinking of you and yours for a long time. I hope your heart heals and your memories are filled with all of the good times.

Elaine said...

Sweetie, I am so sorry. Lauren told me what happened and I wanted to let you know that my thoughts and prayers are with you and your family. Please let me know if you ever need anything.

Colees said...

My heart is breaking for you. You are such a strong woman. When our daughter passed, I found comfort in this poem...
Little I knew that morning, God was going to call your name. In life we loved you dearly, In death we do the same.
It broke our hearts to lose you, You did not go alone, For part of me went with you, The day God called you home.
You left us beautiful memories. Your love is still our guide, and though we cannot see you, You are always by our side.
Our family chain is broken, and nothing seems the same, But as God calls us one by one, The chain will link again.

SarrahBaby said...

Sheila I am so sorry about your loss. I cannot even imagine the pain you are going through. I know I never met him but just from pictures Blake looked so sweet and happy. He will always be remembered. And you shouldn't have to hurry and get over it. You should take your time. I'm here if you need someone to talk to.

joanneram said...

Amazing photo of you holding your beautiful boy, I am so glad for you that you followed your instinct to hold him for as long as you wanted to and didn't allow the nurse's attitude to interrupt what you needed. I do believe that Blake is with your Dad now and that you'll all be together again one day. He was very lucky to have you for a Mum and I am so so sorry that you didn't get longer together. I hope your photos and memories can help you to remember the fantastic times you had with each other. Much love, Jo Ramsay. (Mum to Conor who has AGS.)

Denise Robinson said...

Dear Sheila
After reading your blog, my heart is hurting badly as the tears are streaming down my face. I can only imagine your pain and am so very sorry you have lost so much. I believe your beautiful little man is in the hands of the Heavens somewhere and shining his precious star on you. He knows you loved him dearly. All of my thoughts and prayers are with you and yours and please stay strong and keep the faith.

Wishing you peace in your heart

Anonymous said...

Hey Sheila, this is Sarah Genrich.

I know I haven't kept in touch, but I've kept tabs on how you're doing.

Blake seemed like such a beautiful little boy. And you two together were always full of light and love. I'm so sorry for what you're going through right now. He will always live in your memories, as well as everyone else's. The pain will always be there but so will the love. I'm so sorry that you two have been separated in such a severely abrupt way. Blake will always love his wonderful mother.

Miriam said...

God Bless Blake and may his little pure soul rest in perfect peace. I will keep you in my prayers. I can not imagine the pain and loss you are going through. Treasure your wonderful memories.

'Say not in grief 'he is no more' but live in thankfulness that he was'
Hebrew proverb

Michelle said...

Hi Sheila,
I know I don't know you, but I came upon your blog post through a friend's Facebook post. My heart is breaking for you! I lost a son right after birth, and I also have a 6-year-old daughter who recently underwent an emergency liver transplant. I want you to know that there IS life after death, and that you WILL be with your boy again. All of your losses will be made up to you in the next life. If you want to talk, I would be glad to listen or help any way that I can. Loves and hugs to you! Michelle Rowan

Pam said...

Hello Shelia, I found your story when I read the latest entry for LArsen Purvis. Although we don't know each other I have sobbed when I read about your precious baby boy. Words can't describle the hurt I feel for you! I have pout you in my prayers foir God to comfort you and give you peace. As someone else said, take all the time you nees to grieve and keep all that gives you comfort. I know in my heart your little Blake is is with Jesus and is now a happy and perfect healthy baby! Please trust in this and know God sent that Dragonfly to tell you Blake is with him and happy. Look for more to show up at different times because I'm sure they will,probably at times you need them most and least expect them. Know how so many people are praying and caring about you at this time including strangers. You are a wonderful Mommy and you were blessed with Blake for too short a time but you will be reunited someday. Just know that. God bless you with a peace and comfirt beyond understanding!
Pam Barker

Beth said...

I saw a link to your post on babycenter and I just wanted to let you know that it brought tears to my eyes. I am so incredibly sorry for your loss. My daughter was born on July 22, so I can only imagine what it would feel like to lose her now.

I had a stillborn baby a year earlier and I have a blog if you're ever in the mood to look at it. I know it's very different than what you've been through, but some of the posts might hit home. I know yours did with me.

My thoughts and prayers are with you and your family.

Melissa said...

I know my miscarriage does not compare to the loss of your precious baby but there was a song that really touched my heart during my grieving period. My sister wrote the words for me and framed them:

You are my sunshine
My only sunshine
You make me happy when skies are gray
You'll never know dear
How much I love you
Please don't take my sunshine away

The other night dear
While I lay sleeping
I dreamt I held you in my arms
When I awoke dear
I was mistaken
So I hung my head and I cried.

I hope these lyrics help you like they did me. My thoughts and prayers are with you.

God Bless

The Sirianni Family said...

I think we stumbled upon your blog shortly after Owen died. And it randomly popped up on my phone on the 13th of June. I ran downstairs to tell my wife. Both our hearts ached for you. To know that someone else has to go through what we are going through is a terrible thought. Thanks for reaching out to us. Feel free to contact us if you'd like to talk.

Les W said...

Dear Sheila
I hope that time has done something to heal you and yours. My son was born with AGS and has struggled this past two years. We are lucky to still have him with us and my heart breaks for you as I read your story. Your Blake is a beautiful boy and I am sure he surrounds you still.
May you go on and be strong.
With love
Lerena (New Zealand)

Ashley27 said...

Thank you for sharing your story Sheila. My heart also aches for you.

My husband has alagilles. He's 33, had a liver transplant at 26, and all this time, I thought his experience was at the worse side of the alagilles spectrum. After reading more stories and blogs, I think he is lucky. We had a daughter and the chances of him passing alagilles on is 50/50 but she was born without it. I didn't know then what I know now. ..... But now that I do know, I don't think we will try for another child.
You are a strong woman.