Everythings so hard to do

This is extremely hard for me to do. I want to keep on getting to know you and your families I want to keep blogging. But obviously I had planned on blogging about Blake and his adventures through life. Now I can't! Everything is so hard going through the motions of living without Blake suck!!! I hate getting up without Blake, I hate going to sleep without Blake and everything in between. One of the things I hate the most is being in this God forsaken house. Everything screams Blake and it's so awful quit now without his oxygen going. I hate it and I feel like setting the place on fire sometimes! (I know I won't but I do come up with plans of how I would do it and when) I just feel trapped and that somehow leaving it all would make it a tad bit more bearable. And for what I'm about to say next if you disagree you have everyright but please let us just agree to disagree. Because I have every right to feel how I want. I'm mad at God. I feel that it wasn't Blakes time and that he was to busy to help my baby and why did he have to give me the most sweetest child with an awful sick heart. It's not fair. I know God never said everything would be fair. But why can't my life be a little more just? Why? Why don't I deserve a little fairness. I was a good mom, I was a good good mom. Their are so many moms that aren't and will never change why do these moms get to have their children with them for the rest of their lives, why are their kids healthy?

I know I'm pregnant, but I'm not rubbing my belly and talking to my unborn baby like I did when I was pregnant with Blake. I 'm not preparing any nursery or getting exciting and lookinh at all the baby stuff when I go in a store. In fact I AVOID that section of all stores the baby section!!!

I'm jeaous of every mom who gets to hold their baby/child, smell them, talk to them, hear them, and just watch them grow. I deserved to do that with Blake.

I'm jealous, pissed off, sad, and I want to burn stuff!!!!! But I'm also thankful I got to share Blake and our journey with each of you Thanks for being their.

The Good News, The BAD News, News I have no Idea how to feel about???

Good News first because I'm an optimist (you live longer if your an optimist!)

1. Laura and Kim, Ava's mom and Grandma, are awesome and sweet!

2. Everyone that's in this blogging family cares so much for Blake and me and i'm so grateful, I can feel your love from here thanks everyone for caring for my angel.

3. My family and our friends from home are their for us as well, my mother in-law Janice is so sweet.

.4. Blake hasn't desated all day and he's not paralyzed anymore but. . .

Bad NEWS
Blakes been intubated for 17 going on 18 days, they haven't been able to wean at all! About every four hours he has these episodes where he desats and then has the air also on the outside of his lungs. Evertime the air escapes like that it can cause your lung to colapse and it horribe for you lung weaken the walls everytime. So everytime this was happening they would bag Blake and pretty quickly paralyze him. The past few days they put him back on the continues paralyzing drip. He's been paralyzed since Friday. They've checked his dyaphram with a CAT scan, they checked his lungs with a CAT scan, they checked his throat with a bronchoscope, they checked his head earlier with a CT scan, EEG, and ultra sound now they did all that again today. Tomorrow they're going to do an MRI. They haven't got the results on the brain scans yet hopefully neurology will talk with me tomorrow. They're having this pallative care team talk to us(IT'S THE HOSPICE TEAM!!!!!) Yes they're telling Troy and i they can't keep Blake intubated forever, he might have brain damage and we might have to make some tough choices soon. I don't think this though, Blake was responding to me today once the paralytic wore off. If he was so severly brian damaged that his body has forgotten how to breath it just seems like he wouldn't be their anymore. But He is I KNOW HE IS!!!! I LOVE HIME So much!!!

Knews I just don't know how to feel about right now, I'm pregnant!!!

Okay so pray for my sweet sweet boy he's strong and he's hard headed and does things his way no matter what the docs do. So I just know he'll pull through. I can't wait to hold my sweet sweet boy.

Blake's doing better

He's definitly still not out of the woods. He's still intibated. He keeps fighting the vent though. The RT says he bears down and won't let a breath go in. He keeps asking me if he does that at home like my answers going to change if he keeps asking, "NO!" They also thought he might be developing asthma on top of his chronic lung disease, but now they've ruled that out. One of the docs said that asthma was common in WS. Is it because I really didn't think chronic lung or asthma was really a commom characteristic. I know that his heart problems contribute to the chronis lung disease and the pulminary stenosis wasn't helping things. Or could it be more common in WS individuals that have a more severe heart condition and/or pulminary stenosis to have asthma or chronis lung disease. That's what I'm leaning towards. Quick question for anyone who's reading. Did your child have to have oxygen, why and for how long. So far I haven't heard of any one on the blog or any where else.
Now for the good news even though his vent settings aren't low enough they're going to extibate him tomorrow. Why because he keeps fighting it. He needs high flow but hates the tube. The docs say he's not following the typical path of just slowly letting them wean him off the vent. The cardiologist told me today he's going to try to extibate tomorrow. (i wish they'd do it today, now he's going to be fighting all day and night) He thinks he'll have 60% chance of staying off the vent and on high flow nasal canullas. Yippie, he said he usually wouldn't do this but Blake just seems to have a bit tempermetal. He actually said something along the line of isn't that how WS kids are (meaning BIG TEMPER) and maybe we'll just have to do things his way. I know he'll stay off the vent. I know he's trying to tell them, 'Hey this thing down my throat sucks, I'm gonna need oxygen regardless when you pull it so why not just give me the nasal cannulas now so I can have my pacie!?'
Okay so everyone cross your fingers he gets off the vent tomorrow and STAYS OFF, I might get to hold him. Whoo-hoo!!!!

Oh I finally figured out how to put your links to your blog on my blog. If you don't see you link don't be mad at me :( and think i'm leaving you out I'm in the process. Right now though shift break is over so I'll get the rest of everyone's addresses the next couple times.

Hope everyone's having a great day.

Wishing I was home with Blake

I know we've only been up here since Jan. 29th but I miss Indiana and playing with Blake. I'm home sick. I'm not strong and rugged. I like my nice comfy bed, my soft sofa, and my big screen TV with that thing built in where I can pause and rewind live TV. I never camped as a child. Eww sleeping in a hot R.V. or worse OUTSIDE..........I'm not stong ahhhhh.

Blake's about the same as yesterday. They had to put a chest tube to vent air off the outside of his left lung. Both his lungs weren't venting well yesterday. After the tube was put in things improved. They had to go up on his vent settings yesterday around all that trouble, but he's back down today. He looks a tad bit more swollen he actually gained more fluid Friday to Saturday because they had to decrease his Lasix. His outter tissues are wHere all the fluid is sitting but he was actually dehydrated um like his cells internally. I'm not a nurse I kind of get it the fluid needs to flucuate. If they kept up on the higher doses they would hurt his kidneys more which are already not as great as they should be. I know that's to be expected. Nothing works just fine and dandy right after all he's been through and Blake's kidneys and liver where well never quit up to par on a good day, but functioning okay. Their actually going to try to wean him slowly back up on the lasix again today. 2 days on the lower end and probably about 2 days on the higher end. Back and forth trying to pull as much fluid off with dehydration and hurting the kidneys. The more fluid though the more pressure on his heart and the more fluid in his lungs. It's this great big balancing act. I wish their was a magic get better pill that cured all. You have your surgery you givem' the pill, boom bot-a-bing, everything back the way in was.

A room opened up at the Ronald McDonald house so we had to move. Since the hotel room per night that's in the hospital is much more expensive than the Ronald McDonald house. The Lili Claire foundation is paying for our lodging which I am very appreciative of. Their just wasn't an opening so that's why we had the luxury of the hotel til now. I'm thankful, thankful, thankful for their generousity that's why as soon as we got the call we started packing. I just don't like having a bed time. No one is to be out in the common areas their after 11 p.m. but your not allowed to eat in your room. I haven't been sleeping and will wake up and snack(I know not the best idea) or would go see Blake. Now if I want to see him in the middle of the night I have to walk half a mile in the cold. Like I said before I'm not rugged. Did I mention theirs no TV in our room. Remember I was born in the 80's I grew up while all this high tech stuff was growing up to.

I hope everyone is having I nice weekend. Praying that I can hold my big strong boy soon.

Blake's Doing Better

Blake might possible get his chest closed today. The past two days have been so much better. He still has a lot of extra fluid and his blood pressure still swings every now and then but definitlty not as extreme as earlier this week. Um quick question am I nuts for being all smilely and happy because even though he's still has a long way to go I just feel we're over the worst of it. After he recovers I just feel things are finally going to settle down a little for us. I know we will still have a major moutain to move yet with feeding and that won't just magically go away when we get home. He'll still be on oxygen moderate/severe chronic lung disease may never really go away. I know that the docs have told me some individuals have to have it their entire lives.(I hope not, but I'm not getting my hopes up we'll be able to dicard nasal cannulas and oxygen tanks soon)! I won't complain if it does happen THOUGH!!! Thank you for all your prayers I know he listened. Thinking of you all.

Here in Michigan!

Less than twelve hours now. I hope everything goes as smooth as possible. Blake's going to have his aorta patched as much as possible. His whole aorta is prefussly narrow the co-arch where his interrupted aortic arch was repaired has an hour glass pitch then the rest just doesn't open up much at all. Dr. Bove hopes to do a generous patch and go as far down the aorta as possible. Their also going to patch his pulminary stenosis. I'm just trying to stay as positive as possible. I just have this instictive feeling that everything will eventually work after a few weeks and Blake will almost be back to his old self. I HAVE to think that!

I don't think I mentioned it but Blake was baptized Tuesday Jan 22nd. It was beautiful. The pastor came to our house and brought his daughter, son, and wife. We had a few of our realitives over. Hannah the pastors daughter also has Williams Syndrome she just turned 13. She was sooo pretty and sweet.

I also want to thank the Lili Claire Foundation for their generosity during this time. Their a foundation founded by Keith Resnick whose daughter Lili Claire had Williams Syndrome but unfortunaly passed away at 5 mos old. Please check out their foundation to learn more http://www.liliclairefoundation.com/

So if you get a chance please say a prayer for my sweet sweet boy tomorrow.

Here with Hannah, Abi, and Noel

Sorry I haven't blogged lately. I'm here at the university of Louisville hangingn out with Hannah Abi's sister. Blake's t high speed again still on for his surgery in Michigan Feb. 4th we're going to leave Jan. 31st. Blake's doing better we're just trying to keep him stable til his surgery we've been discharged since the 6th. We'll I'll upload some pics now that I've got high speed here.

We're here at Kosair again

I called an ambulance because I was by myself and it was 5:30 in the morning. I don't like going with Blake by myself to Louisville. I have to be on the interstate 90% of the time. There's no where when you're going over a doube decker bridge at 70 mph to pull over and put nasal cannulas back in your squirmy infants nose. I would have hit rush hour right past the bridge, too. So his bnp was 492 (a normal number is between 5 to 100) last week when Blake was admitted and having cold sweats his bnp was 2052 it when down to 1450 then back up to 1650s then by dischage it was 1090. So that's good that's going down now they think that his cold sweats his solo related to his feeds. They changed his schedule when we when home now where working on a different one, because obviously that one wasn't working well either. They believe he's not getting enough blood to his gut so he's not digesting well. He's still retching like crazy, too.

Thank you all for your supportive committs. My last blog I kinda was a tad emotional, I know I sounded selfish I don't feel selfish really I just feel overwhelmed and confused. But it's nice to unload to everyone here I don't feel judged. Well my dad's here to give me a break. I know that sounds nice and it is. I just always feel so rushed on these "breaks" my parents want me back in three hours yet they urge me to get home and take a nap. By the time I go home get something to eat take a quick shower well I don't feel like lying down for 40 min or so. I know I'm picky and selfish I should be glad for the breaks I'm just so rushed in feels like a job to take a break :) Well if I get a chance after my break I'll attempt to read everyone's else's blog.

The Plan so far

So we'll be heading to CS Mott Children's Hospital in Michigan Thursday, January 31st. The next day we'll go to the Cardiologist for a pre-op then we'll have the weekend off. Then bright and early we'll go in Monday. I'll hand Blake over to the Lion's I mean Surgeon's and hope for the best. I talked to a social worker in Michigan it was late in the day she said she;d help me work out transportation for Blake and she'd call me tomorrow and let me know what she found out.

I wish I could close my eyes and wake up and this was all just a horrible nightmare. I didn't want to watch my babies heart beat inside his chest last time for five days they left his chest open because of swelling. I think about that mental picture alot lately again. It's not fair when they closed his chest he was 9 days old. At that point in his little life he had been sedated more than awake. Before he's seven months old my baby will have gone through 2 open hearts, a gastro feeding tube plus nissen, and 2 caths. . . AND who do I feel sorry for myself. I feel like the big baby latley I walk around listless and numb living inside my head. I know I should enjoy Blake this next month as much as possible. A part of me wants to leap from my depressed body and kick my own depressed butt and tell myself to stop being such a mope. This is so much easier typed then actually done.

I love my baby I know I do. I look at him and think how the hell did I help create something so heavenly. But sometimes when I'm preparing milk that will go in a bag instead of a bottle or when I have to untangle heart monitor cords and oxygen lines just so he's not so tangled he'll reach the changing table I wish I could pull out a remote that would pause the whole scene. I'd take one last look at Blake and run. I'm not saying I feel like escaping all the time but I have moments. Well I'll try to update everyone as I found out more information.
I just hope I'm doing the right thing by going to Michigan instead of staying and letting Kosair do the open heart. The scary thing is absolutely no one can tell me for sure.