My heros. . . Troy, Brandon, & Blake

Everythings so hard to do

2008-04-02T19:20:00.000-07:00

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???

2008-02-21T17:26:00.000-08:00

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

2008-02-12T12:24:00.000-08:00

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

2008-02-10T10:52:00.000-08:00

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

2008-02-08T09:39:00.000-08:00

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!

2008-02-03T16:29:00.000-08:00

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

2008-01-18T08:44:00.000-08:00

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

2008-01-05T09:06:00.000-08:00

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

2008-01-02T18:29:00.000-08:00

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!

2007-12-29T07:32:00.000-08:00

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!

2007-11-30T08:16:00.000-08:00

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!!!

2007-11-18T15:23:00.001-08:00

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

2007-11-01T17:40:00.000-07:00

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

2007-10-22T18:24:00.000-07:00

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

2007-10-13T06:15:00.000-07:00

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!

2007-10-03T11:56:00.000-07:00

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!!!!!!!!!!!!!!!!!!!!!!!

2007-09-30T03:21:00.000-07:00

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

2007-09-24T11:08:00.000-07:00

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

2007-09-17T21:08:00.000-07:00

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

2007-09-10T16:14:00.000-07:00

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. . .

2007-09-06T15:51:00.000-07:00

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

2007-09-03T11:26:00.000-07:00

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

2007-08-31T05:43:00.000-07:00

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!!!

2007-08-30T16:30:00.000-07:00

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

2007-08-27T09:22:00.000-07:00

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.