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

Friday, June 4, 2010

Boo on Gainesville...kinda

So man, this last trip wasn't the greatest. First off, we ended up with the doctor there that I can't STAND at all. He's just rude and won't listen to a thing I say! Like he has in his head what he wants me to say, and goes off of that instead. Oh, and he talks to my mom the entire time. She drives me and Blake, so I can sit in the back with Blake and take care of him, and she drives. It's MY kid, talk to ME. Makes me so mad!!! I'm the one who answers him, she doesn't, so wtf? And he started talking about how Blake's ped needs to make sure that he keeps in touch with them really well, and I told him that he tries to, but no one ever answers, and he went on to say that he can't just say what do I do, he has to ask a question, and I said he did, and no one ever answered him (he's called and faxed them before), and then he just completely changed the subject. Wow, thanks. Also, there was a I think doctor in training, and he was extremely nice and Blake liked him a lot. This other doc proceeded to be rude the the trainee as well, in front of us and everything. Really? How unprofessional can you get? And it wasn't for any good reason at all. This is the same Doctor that changed the surgical procedure on us without any notification and then was annoyed when I said no. Needless to say, I've never really gotten along with this guy. I've tried to request the one I love, but I hardly ever seem to get him anymore. But anyway, he said that it's looking more like Blake will need a liver transplant, but I don't see how he could make such an assumption yet. I've read that a lot of times things won't get better until they're three. So basically two years from now. Anyway, he quickly back tracked from that statement when I brought up that fact and said that he doesn't really know, and we'll just have to wait and see. Well, obviously. I really hope he won't need one. If he decides that Blake does though, I'm going to get a second opinion. I don't really trust him at all. At least this trip was short.

So I've decided that I want to buy a house. I applied for the government job tonight, so I guess I'll see how that goes. It would definitely be nice if I could get it! The house I want is in Crestview, and is for only $89,900. Well, that's at the full market value. Very cute house. :) Even if I could get a full time job at $10/hr, I could afford it. Or if I got married I could. But I don't think that's going to happen for a little bit!

I've been feeling overwhelmed lately. I don't know why I get like this sometimes. Just feels like everything is a difficult task. I think a lot of it is the fact that there isn't enough room for me and Blake here. It's just too cramped. Probably (definitely) a big reason of why I would like to move. Maybe I should just wait to get married though. It would definitely make things easier, money wise. And then I have so much paper work to fill out. I need to do my FAFSA, my application for graduation, I need to call UWF and see if they have anything for ASL interpreter programs, need to call Medicaid and ask to speak to a manager to see WHY they are refusing to pay this huge bill from his birth. That doesn't make any sense, since it's covered and everything. I'm just dreading that whole thing. Thanks, Medicaid, for trying to ruin my credit, I appreciate that.

Anyway, it's late, so I should probably get to bed. Night!