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.

I Was Right, So HA ha HA Kosair Children's Hospital!

So Michigan and Cinncinatti (I hope I spelled Cinncinatti right, I've come to terms that I'm the dumbest blogger and I'm okay with that though) So MI and Ohio, Cinn. said that the cath was a waste O'Time and that they would just do the open heart and patch as soon as he's done having his fever. Blake has a viral infection on top of chronic heart failure is that just PEACHY! So I'm sorry I haven't been blogging but X-mas season sucks for me this year it seems that every one keeps having healthy babies and flaunting them in front of me and now another open heart. Okay well I'll update everyone with my decision soon. Oh, and Lisa rocks and so does her little walker Tatum Cootos for both of them. She's been listening to me whine lately.

In the hospital AGAIN!

So we're back. Blake started breathing heavier and requiring more oxygen. He's actually been doing this off and on for the past few weeks. Dr.Kim kept telling me this was normal with Chronic lung disease and he really hadn't jumped to needing to much more. Well he started requiring almost a full liter he was already at about 60 percent then I had to bump him up to 80 Wednesday. So I took him to his pediatrion right away. She had us admitted at Kosair. We waited in an E.R. holding room from 5:30 to 10:30 before we finally got a room. He had really started belly breathing harder than usually. He always belly breaths a little. So Dr.Kim decieded he would go ahead and do Blake's cath . Dr. Kim thinks that it's all a lung problem right now but believes doing the cath will help if the lungs become worse or if he gets a respritory virus. His heart at least will be as stong as possible to help his lings fight it off. I don't know if his theory is completely correct. I don't think he's having heart failure right now. But I think Blakes strolling along casually toward that road. I think his hearts working harder and obviously that's going to kick the lungs into working harder. They have to constantly work hard. I believe this is why his diaphram is doing double duty and making him belly breath constantly.

So the cath was scheduled for 7:30 this morning. I was trying to remain positive. I thought it was nice that he was going to be the first to go so the docs wouldn't be tired or have their minds on the previous patient. But low and behold, as always Blake got kicked to the curb. A little baby just born a few days ago got sick during the night and needed to go to the cath right away. So they came and gave me an update around 10:30 they had to stop and take that baby to surgery right away. My thoughts obviously weren't on that baby because I said in my head 'good now they can take Blake to the cath lab,' but that baby might need to go straight back to the cath once the surgery is over. I'm thinking that the baby most NEED to go staight back as long as he/she makes it through the surgery or they would've been able to take Blake then. So I can't rut for the other baby not to make it, geez I'm not that selfish. But it is hard for me to sit here knowing Blakes exhausted and starving and not be able to do anything about it. I hate having to rely on other people and certain outcomes before my baby can be helped. I just want to be able to get up and do what ever needs to be done myself. I always feel this helpless feeling, which I utterly hate feeling when dealing with all these doctors. I feel like I shouldve when to medical school so I could help my son successfully and wouldn't 2nd guess my self all the time.

So hopefully they will get him in before the days over I think Dr. Kim is really going to try. I really do like Dr. Kim he's either Asian, chinesse, or something but he's not mean like Dr. Yang and I can understand him completey. I pretty sure he was born over here with us highly intelligent Americans :) If they don't get us in I'm guessing they'll let us go home for hte weekend and then come back at a scheduled time next week. This isn't a really recent pic cause my memory card at home but he was cute then like he's cute now!!

I'm so far behind!!!

Oh, My I have an hour before Blake's breathing treatment, which comes right before his attempt at taking a bottle then undoutedly we will both give up. Then I'll g-tube feed him. This whole course of events thats continues is why I haven't been blogging. If I do get a moment when I'm not seeing to Blake I feel guilty if I don't do house work of some kind. If I don't I just make myself more stressed out because it piles up and I myself nag myself. Let me tell you I'm a bitch to live with. If I happen to watch the Price is Right and actually watch it I have to listen to myself for at least two hours later (You should have mopped! Do you realize your shoes get stuck everytime you walk by the bedroom and did you actually look at the T.V. while watching it Bob Barker had a layer of dust an inch thick over his suit and tie!) Oh yeah I drive myself crazy! Enough about my inner nagging voices.

Blake didn't have to have his cath!!! He will probably have it before Christmas but the doctors felt they could wait a while longer letting him grow a bit more. So I'm okay with this the whole cath thing scares me after what happened last time. Obviously I don't want them to allow his arch to narrow to much but I'm not in a huge hurry to send Blake back to the CATH LAB!!

AHH, Blakes fussy so that will have to be all for now. Hope everyone has a great Thanksgiving!!!

I haven't dropped off the face of the earth, I swear

Alright I didn't get to go to Riley's. Here's my excuses, it was raining cats and dogs, my dad was going to go with me to help me navigate the directions but he didn't feel well, and I had Brandon. So since I didn't have anyone going with me I didn't want to drive to Indy(a place that could fit Corydon in one of it's many parking garage's) with my two favorite people in the pooring rain to a place I would be afraid to get lost in. (I'm not the greatest driver, but I'm better than my husband no matter what he thinks :) )

So Blake had to go to his pediatrion Tuesday because he desated and wouldn't recover completely. He kept hanging out around 81 percent to 84. Then he came back up to around 89, but never would stay over that and that was with me more than doubling his Os. He did this on Saturday but it didn't last long I called the cardiologist on call it was around 9 p.m. he told me to watch him. Blake was than already coming back up on his saturation. He didn't have a fever and he seemed fine other than the heavier breathing. Well it didn't happen again til Tuesday and it just seemed worse. Well the ped almost had us go down and be admitted at Kosair. After consulting with the his cardios they said I could just watch him and he'd have an appt with them the next day Wednesday vs Thursday his orginal appt time.

So they deceided to cath Blake on November 14th since last week Blake weighed 10 Ibs ( I was so pround up from 9Ibs 11 ounces from the following week) but this week he weighed 10 Ibs too. The whole desating thing and not gaining weight is motivation . But I also think they want to wrap everything up before Thanksgiving. The time before that Dr. Kim was thinking about doing the cath at the begining of December so Blake would be good and recover before the docs went on their two week Christmas vacation. I know they need down time it will help them be better doctors in the long run. It just weird to think about sceduleing possible life savings events around someones timeshared condo shedule in Miami or wherever. Of course i'm nervous after what happened at Blake's last cath. I keep motivating myself by telling myself that Blake is stonger and about 40% bigger.
I think he's doing better now that he's home. He loves to play in this play pen I rigged up this mat that he kicks it makes the sound of the animal he kicks or there's a key board pic at teh bottom that has a different nursery ryhym song on each key (like Mary had a little lamb) In fact I'm even a bit jealous of his closet that is every time my mom comes over she brings him a couple outfits. I wish I got the same treatment. Blake definetly has more clothes and shoes than me.
Hope everyone had a good Halloween I took Brandon and one of his friends they were both the scream character(of course they planned this) His friends mom actually bought Brandon's costume as his b-day gift. I forgot the camera no pics of that. But I have a pic of Blake in his halloween outfit. But I can't seem to upload any pic from home :(