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 :(

2nd opinion

Sorry I haven't updated lately I tried earlier today but my computer went off line right in the middle of reading Noels posts. (I hate dial-up, but alas I'm a country bumpkin and that's all I can get out here. I hope everyone had a good weekend and a nice Monday. Tomorrow Blake and I are going to Indainapolis to Riley's cardiologist team. I had better luck with Dr. Kim last Thursday he had Blake come back Friday for a CT scan they didn't have to sedate him they just swaddled him while he went through the machine. Dr. Kim said they were able to get a good picture. We have an appt back in Louisville with Dr. Kim Wednesday. This week's better than last Blake had five appts last week two on Tuesday so we where busy all week. I'm taking him to Riley to get a 2nd opinion I hate to have Blake go through anymore tests than he has to, but if anything were to happen I don't want to look back and think I should've done more.

Not to switch subjects but I just wanted to give a shout out to my cutie pie step-son and let everone know he turned nine today. We let him have 3 friends over to spend the night Saturday they all seemed to have a good time. It seems when you get them together like that their appetitie doubles. I swear they about ate everything I had in the fridge and cabinets I need to grocery shop again.

Slow speed internet & Dr. Yang

I have attempted to post about 5 times now since I've been home but my dial-up keeps acting up in numerous ways. Well that was one good thing about the hospital it's wireless Internet. Their where many good things but plenty not so good either.

Having Blake home it's great much better than seeing him at the hospital. I'm just a ball of nervous about 90% of the time and I've had about 5 minutes of sleep in the past week. We've had 4 doctor appointments since he's been home and I also have visiting nurses coming to the house twice a week.

At his last doc appt yesterday they officially told me Blake's going to have another cath. I knew this was coming it will probably be in the next month to six weeks. This isn't what upset the doctor was adamant about sedating Blake at his next appt to get his echo. We had been in 3 different rooms during the 3 hours this appointment was lasting. Blake was tired and it was time for him to eat and so he didn't hold still for this past echo. He's 14 weeks old he's not suppose to especially under those circumstances. Well Dr. Yang is hard to understand (Yang need i saw more on why he;s hard to understand, I don't have anything against any of his doctors for not being American born and breed I just want to understand them when their telling me about my baby.) I don't think Blake needs to be sedated for his echo because of the doctors offices incompetence to schedule appointments correctly and I just don't want Blake sedated. Well I let Dr. Yang know how I felt I tried to be rational with him I really wasn't trying to argue with him. Well he got all flustered, 'You need lisssen ew me I wise Black (yes he refers to Blake as Black) need sedation to get picture good,' I said I'm not trying to argue with you he informed me that I was twice and stated I was being rude no joke. I swear I really was not trying to argue with this man. He just seemed in a flustered mode as soon as he saw Blake. If I had to describe his little tantrum how I perceive him, I swear it's like he's a little teenage girl on her period who just got dumped by the quarter back. This is how he was acting. But for Blakes sack I was trying to get along. Another Doctor ended up coming in Dr. Subcheck he agreed with me that Blake didn't need sedated if we where going to do that we might as well do the cath is what he told me.

Well when I finally got done feeding Blake in the waiting room and the whole ordeal was over I did cry a tad bit. I just feel awful that I might of put Blake (a.k.a Black by Dr. Yang) in a position to not receive the best care by Dr. Yang. But I do feel that I was just in not wanting Blake to be sedated I just wish I had had a less touchy doctor I believe I would have been better able to communicate my concerns. After the appt prior to this one Blake actually fell asleep during the echo. I brought that up to Dr. Yang to. That echo should have had great pictures. Please everyone tell me how you would have handled this situation. I just feel I shouldn't have let it get out of hand. I called when we finally got home and spoke to Dr. Subcheck and an office manager Blake won't be seen by Dr. Yang there are after all 9 their Drs he can be seen by. For some reason I feel Dr. Yang won't feel hurt when he finds this information out!:)

I would post a pic of Blake from his welcome home party, he looked so cute but my slow speed won't allow picture posting it seems.

By the way can someone let me know how do I put 'blogs I read' everyone elses link on my blog, thanks in advance.

Blake is a resident of Indiana, not Kentucky anymore, Yeah!

Blake's home it's been a little bumpy, but so so nice to cozy up to him at home and not in front of his nurse. Oh, and I don't have to drive 45 minutes to see him. All I have to do is get out of bed. Oh, he's right beside in his bassinet so or in his glider or swing AT HOME!!! I have to run sorry if I can't update for a while i'm sure everyone will understand!

Blake's Coming Home!!!!!!!!!!!!!!!!!!!!!!!

They took him off his Os Thursday but they had to put him back on because he started to desat. So they tried again a few more times that evening and early Friday but he started to desat again. He lasts about 3 to 4 hours than just sorta starts dropping around 70. He'll look fine content and everything, but his sat just won't stay up there with out a little help. So they got him on wall Os and I get to take him home hopefully Monday, but it might be Tuesday if they can't get his take home oxygen and heart monitor ready. My insurance was picky about which company they could go through. Well actually my insurance doesn't cover home oxygen for babies just adults! They just had to negotiate the cost. My advocate didn't seem upset that he would need it. I guess she just has to call everyone that provides home oxygen and find the cheapest rate. I'm not sure if they got everything faxed in time. Considering my nurse found a fax # by Blake's bed while I was there it was around 7pm Friday. She asked the other nurse what it was. She told her it was the fax # for Proxair(home oxygen) and that they needed some info faxed over for Blake's oxygen. I was just so happy with both the nurses at that moment really! So they told me today not to get my hopes up for Monday. Knowing Kosair Hospital it will probably be Tuesday. I'm so excited and nervous and just everything! I've cleaned the house like a mad woman a couple times and then I decided to paint the kitchen and living room. I guess I'm like in this nesting stage preparing for Blake. I hope everyone is having a great weekend. I am! Well besides being a big ball of nerves every other minute, I'm good :)

The good news and the bad, bad, bad news

Good news Blakes G-tube went well for the past couple days he's seemed in a brighter spirit. news the surgeon couldn't preform laproscopy and had to make an incision to complete the nissen. So Blake now almost has a continuous scar theirs about an inch in between them, so that's a little worrisome especially if he's going to have to have another open heart surgery in the future. More Bad news Blake might have a blood clot in his left leg(just found out today) caused by the cath more than three weeks ago. We are waiting on an ultra sound. They also found blood in his urine when they changed him a few hours ago. His nurse has already collected some urine and now we're waiting on the results. His Doc feels that it's either going to be a kidney stone from taking his lasiks for his chronic lung diesease for well almost his whole life now or it will be a urinary trac infection. He doesn't have a fever though and really isn't all that cranky so I'm leaning more toward the stones. Sorta good news his resident feels we might be able to get him on wall oxygen soon, that would be the type I would take him home on, but she also feels he might need it for an extended period of time (she's talking many months to possible years!) Okay so I'm holding up okay I'm getting use to this roller coaster ride. Just to let everyone know Blakes little neighbor passed unfurtantly. I so wished I could report good news for her, it was that same evening. Well I'm sorry I haven't been keepin up on blogging.

Saving Babies

I'm at the hospital and as I type they are going to shock a baby externally. I can't remember what the name of the machine is called my brain doesn't function as well after midnight. But I'm sure everyone knows what I'm talking about. It's just so surreal. Since Blake's been admitted I've been here while 3 other children passed. I don't know how much longer I can do this!

Oh, I'm in the waiting room now I just got kicked out a minute ago. I wasn't sure if they where going to kick me out or not I didn't want to try to leave all the doctors where by the door and rushing in and out. I figured I was just as safe back with Blake in his little corner on the other side of the room. But alas the nurse asked me to leave which I gladly did with lab top in tow. Well I pray that everything goes smoothly for Blake's little roommate. I know she arrived just a few days ago.

Well while I'm here I'll give everyone an update on my sweet man Blake. Blakes going to get his G-tube(gastro tube a.k.a feeding tube) Wednesday. Well hopefully Wednesday that hasn't been confirmed. They never confirm the day or time til the day before. Even then its still subject to change. I'm nervous of this surgery after all they are going to be cutting holes into my sweet boy. I just hope it helps more than hurts. He has reflux really bad. He's not vomiting so much as just retching all the time and he constantly sounds congested. Especially after eating he's so raspy! So they'll give him a nissen(tighten the area where his esophagus meets his stomach) at the same time. Theirs an up side and a down side to this it will fix the reflux, but the down side is he won't be able to vomit EVER! Over time it might loosen and allow for some vomiting but this can take many years. The surgeon said possible when he's TEN or older! I hope everything goes smoothly. I'm still shock up after what happened after his cath. Well I'm signing off now. I pray for each of you and yours. And if you have a moment please give a little shout out for Blake's neighbor.

Here's Blake in his swing (He also has a glider) the nurses call the glider Blakes personal roller coaster!

I feel terrible

Well, I worked at our local Wal-Mart about 2 years ago for about 2 years. I worked in lawn and garden (I know nothing about gardening, I managed to bs my way through gardening questions). A young man also worked in lawn and garden. A very sweet, nice, and kind man. He's probably about 26 he also has Williams! Well he was and still is the door greater and also runs the register when cashiers, like I was needed breaks. I'll be honest I wasn't always nice to him :(. I was never rude to him in person but I do remember me and the other cashiers making comments that he could be somewhat annoying at times. I feel just awful.

I figured all this out when I went to the doctors today. She asked me about Blake and then she mentioned a young man at Wal-Mart had Williams Syndrome. I immediately knew who it was. I feel just awful but I also feel a little better though finding this information out. He's a great person!

I actually still talk to Erik every time I go to Wal-Mart. He knew Blake was in the hospital (Troy's anut works in Lawn and Garden, too) So yes I called lawn and garden when I got home and asked to speak to Erik. I didn't know how to ask such a question. We just started talking he really is easy to talk to. He asked about Blake I gave him an update and then told him he was dx about six weeks ago with WS Erik then told me that that ws extremely rare and that he also had WS. We talked for just a little while longer than he gave me his cell number and house number to call him or his mother with any questions I had(I told you he was sweet). I believe building a stronger friendship with this young man will help. This has been an interesting day!

-Here's a pic of my little men (I don't know how to make a slide show?)

Attempting to have a bit of a life, too. . .

Blakes doing better . He's attempting to PO(bottle feed) feed every other feeding the rest goes in his NG tube (nasal gastro). So I've started working out . . . a little, sorta, kinda! I went to the YMCA yesterday. I did weights and ran on this elliptical type machine(it's a mix between a stair stepper and elliptical). Then this morning I got real adventures and went to a spinning class at 6am. I went to see Blake after the Y each time but I didn't feel as guilty doing this. I think I need to do this to help keep my sanity! Don't take me the wrong way I'm not a health freak I joined the Y a few months before becoming pregger's I started out good going about 3 times a week but once I got pregnant I only 1 or 2 times a week and didn't do much else but walk especially toward the end. I know I could've did light weights but I kinda took advantage of the whole preggers thing and decided walking was good enough(I got out of a lot of stuff, poor Troy)! I also still need to lose 25Ibs of the 40Ibs I gained! I'll be alright if I only lose 15. 25 POUNDS that's like the size of a toddler or a medium sized dog I just don't think I can do it! A lot of people say that I don't look like I need to loose I'm usually sitting down so they don't realize I'm sitting on all of it! Hope everyone has a great day! I'm gonna go hold the reason I'm walking around with an extra 25 pounds :\

Much Better

Sorry I'm just now getting back to everyone. Friday was rough. We kept getting reports every 30 to 45 min that everything was going fine. Then Dr. Rectol came out and said everything went great and while he was showing us the video feed of Blake's narrowing someone yelled Dr. Recto come quick! It was the scariest time of my life. They extibated Blake and his throat collapsed so they had to intubate and then it slipped in his esophagus they had to give him chest compressions and intubate again! He also had hemothorax(I believe that's what it was called, this is air stuck between his chest wall and lungs. The Dr. had to stick needles in his sides and let the air out. All this took I believe around an hour we were down the hall in the viewing room. We could somewhat hear what was going on. Troy and I were listening terrified at the door til a nurse came by and ushered us back in. finally someone came and let us know he was stable. He had to be intubated Friday, Saturday, and around 1:30 yesterday he was put back on his nasal cannula. He looks much better and seems more content now then before surgery. The whole thing was just so scary. On a happier note I hope every one is having a great labor day. Troy and I did stop by his family reunion for a couple of hours before heading to the hospital so that was nice. Everyone got to see the pictures I have taken of Blake. Everyone thought he was adorable(of course)!

-Picture of Troy(daddy) and Blake

First Update

They just called, everythings going fine so far. They had to put another I.V. in that's the 4th one in the past week. One for the blood transfusion last Friday, two for antibiotics, now this one for his meds today. My sweet sweet boy gets poked to much!!! Here's a pic of my dad and Blake and also Brandon and Blake.

I Have comments!!!

Little things(like comments) make my day anymore. Blake is having his cath done tomorrow now. Right after I posted my last post his doctors came in and looked at his scar and started him on antibiotics. Luckily the infection was just external. If it had gotten into his blood stream he would've had to be on the antibiotics for 7 to 10 days. I need to start listening to my little nagging mommy voice that I'm just getting use to. I had been telling the residents and his nurses that it looked infected the big kahuna docs kept saying "we'll keep a watch on it, blah, blah. . ." I need to start being more assertive.

"This procedure does carry the possibility of death." I'm sure a lot of you have heard this I've had to only twice now though it will probably always cause that huge lump in my throat. I have such mixed emotions signing the consent forms.

Well I know everything will go great tomorrow(my inner mommy voice says so)!!!

I took this picture today this was the outfit I was going to bring Blake home in. He was due on the 4th of July but came on the 6th. I knew it would be close to the 4th once I made it to July. This was the cutest preemie I could find. I figured he would need a preemie(hey I guess my inner mommy voice started working right before birth!)

The first part of our journey

On your mark, get set, GO. . . read about my exciting, thrilling, action packed, and most of all mudane life. Well up until recently it was mudane. On July 6th I had my first child, Blake Matthew Hill. He was 17 in long and weighed in at a whopping 6 Ibs. I gave birth at 8:55 pm by the next morning he was at kosairs. The doctors found he had an interupted aortic arch(his arch wasn't connected to allow blood to pump to his lower half) and a moderate sized VSD(a hole in between his ventricles, the lower two chambers of the heart). They scheduled surgery for Tuesday, July 10th. They had to open my baby's chest up and he had to be put on the bypass machine. I had never been so scared. I remember thinking I just half to stay calm and think positive. I believe my husband and I did the best we could. Blake made it through the surgery he had to have his chest stay open for five days because he was to swollen for them to close. Those five days where the worst, especailly the first three. His blood pressure wouldn't stay up and his heart rate was to high. The doctors said he was just going along a little slower than they had expected. Finally on the 14th he started to turn around they were able to close his chest on the 15th. He was unintibated on the 20th and he was allowed to return to the NICU Monday the 23rd! Well he was doing pretty well up until last Friday, August 17th. He just wouldn't eat. He had to have his feeding tube put back in and that's when I found out about that his kidney's weren't doing well. Then Sunday my husband learned that he would have to have another surgery to fix stenosis(narrowing) in his arch. He is having his cath done tomorrow, they had to wait for his kidney fuction to improve. Since finding all this out, Blake's had alright days and so-so days some days he's seems so exhausted he had to have a blood transfusion last Friday his hemoglobin wasn't high enough. Here's to hoping everything goes great tomorrow. He's also been diagnosised with Williams syndrome. But I'll have to leave that for another post. Here's to hoping everything goes great tomorrow and if anyone reads this before than maybe you can say a littel prayer for my sweet boy.