Wednesday, October 22, 2008

Team Lily's Angel Heart, doing the Heart Walk

Unfortunately, too many of us have a loved one affected by heart disease or stroke. To help stop this, I will be walking in this year's Start! Heart Walk benefiting the American Heart Association. I have set a personal goal to raise funds that are needed for critical heart disease and stroke research and education.You can help me raise funds and protect those you love by making a donation online. Click on the link below to visit my personal donation page where you can make a secure online credit card donation. The Amerian Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer a smaller amount, you can do so by sending a check directly to me.Your donation will make a difference in the fight against our nation's No. 1 and No. 3 killers-heart disease and stroke. Thank you for your support.Follow This Link to visit my personal web page

(This is my reason for walking....along with all of our heart friend to Left, and many others that aren't listed!)

and help me in my efforts to support American Heart Association - Phoenix, AZ - PMASncerely

Pictures below are for anyone who would like them. Just copy then and save them. I have made all of these.

We are walking the Heart Walk Feb 28th 2009, in Tempe. As soon as more inforation becomes avaliable, I will be posting it.

Saturday, October 18, 2008

Heart Cath Results

The update I know a few were wondering about. We got the results from the cath......hold your breath.... MORE TESTS NEED TO BE DONE...Yup...thats right. We are scheduled for a MRI and MRA on Halloween at 2pm. Lily will be sedated again...poor thing, from what I am told we should be out of there by 5pm in time to take the boys trick-or-treating...but that is the least of my concerns, worse case scenario, I have friends or family take them for us.
Any who, back to the subject at hand. She will be having the MRI/MRA done to take a better look at the anatomy of her heart. The know what is going on...and I am going to try to explain this to the best of my it goes
Ok...As I type this refer to the picture below, it will hopefully help. As you can tell by the drawing below (Compliments of Dr.Rhee) Lily does not have a normal heart what so ever. She will be needing a full valve replacement on the left side. I asked if it was a possibility for an artificial valve but that was a NO, because of how little she is. They don't want to have to go back in any time soon after this next surgery.
So.... with that being said, they want to take the valve from the right side of the heart and use it for the left side. They will hallow out the right side and then use an artificial valve on that side...I know I know...I just said they didn't want to use an artificial valve, but there is a catch to that. They don't want to use one on the left side of the heart, but they don't mind using one on the right side. From what Dr.Rhee told me, you can live with low pressures on the right side and a leaky valve on that side but you can't live like that on the left side. So as long as we get that Left Valve up and running correctly, then our main concern is out of the way. to why they want to replace the valve, well, somehow, someway, Lily has a kink of some sort right above the aortic valve that is causing us about 1/3 of the pressure build up.
Down at the bottom of the aortic valve is where lays our other problem, the bigger problem. From what I have been told, there is a membrane that is wrapped around the valve cinching it closed. That is where they focused on the ballooning during the cath and it didn't budge in the least. This is where 2/3 of the pressure build up is. We are still only at a 60% grating(However you spell that) but we wonder how long that pressure will hold before it is to much.
It is a watch wait and see thing most likely and as long as she doesn't go into heart failure I think they will push the surgery as far back as they can, but that is just me assuming. We won't meet with Dr.Cleaveland or Dr.Nigro until after her MRI/MRA results come back. That is when they will officially hand us our sentence...That is how I look at it. I am more then terrified thinking of her going back into another OHS. Although I have began to wonder if she had such a hard time last surgery due to her being in critical heart failure. Who knows, well only one person does and that would be the Lord Almighty himself, and we will never know his plans until the day of....sometimes we are lucky and he sheds some light on it before that.
Oh one more thing before I end this, I am still working on the montage...I haven't had as much time as I thought I would...then again...who am I have time? That is a humours thought.

Wednesday, October 15, 2008

Pregnancy and Infant Loss Remeberance Day!

October 15th is a day that touches many even before having a critically ill child or lossing a child. When I say lossing a child, I mean it as in, losing a child due to a miscarriage, a childhood illness, a tragic accident of any sort.

When this day comes around it is a sad day for myself, and it serves as a reminder of how blessed I truely am to have Lily in my life! I lost a child back in Febuary of 2005, I was only 6 weeks along, but it was a loss none the less. I felt a part of my soul being ripped out of me and every year when November rolls around, it is always a bitter sweet month for me. Lucas's birthday is celebrated that month, but he also shares the month with my child that I never met. Also November was the month our lives changed for good, that was the month we found out Lily's heart was not a normal heart. That was the month that we found out we were to be having a sick child, one that would never truly be whole and well. Then when February comes, I am now reminded not only about the birth of my beautiful baby girl, whom I am beyond thankful for, but I am also reminded about the little one I lost that month. I know when I am called home, I will meet my little one, I know he or she has met my papa who is up there waiting for all of us to join him. Papa, I miss you, please keep singing those lullabys to my sweet little one until I can.

I try not to be to sad on this day because if I would have never of lost that baby, I would never of had my Austin boy. I would have been celebrating a 5th birthday and a 3rd in November, but now I celebrate a 3rd birthday in January. So, I am blessed, and I am reminded of that everyday.

Ever since I have had Lily, and even before it, I have been reminded that everyday is the purest blessing I have. While being pregnant, I was aquainted with a few very special woman. All of us had special heart babies, all little girls also. My first girlfriend, Kristina, lost her little girl Chloe, at 36 weeks, if I remember correctly, she was about 8 weeks ahead of me at the time. Her little girl had fluid around her heart while in her mommies tummy and it was just to much for her. She passed away and almost as soon as she did, Kristina knew something was wrong. She went to the hospital, and they confirmed her worst fears. She went through what no mother should have to go through, she went through labor and delieverd her sweet baby girl, the one that she had felt move and kick her, her entire pregnancy.But when she came out, she no longer graced the world with her liveness, or spirit, seeing it was already back in heaven with the Angels, but she did grace everyone with her beauty. No cries of life admitted from her body, just stillness and peace. Her heart was broken while her mother was pregnant, but it was now again whole as she was called home!

My other friend Kaitlyn, lost her little girl after getting to spend less then 2 days with her. Angel was her name, and an angel is what she was, was born via-c-section and whisked away almost imediatly. She not only had a special heart but she also had a problem called Encephalocele, that is where a bag of fluid will form around the top of the spinal cord at the back of the head, and patrood out of the body. Her mama could not deliever her naturaly in fear of this sac bursting. They were trying to give her every chance at life they could, but when the Lord wants you to be home with him, his will is stronger then any of ours.

I have known a few woman since having Lily that have lost their children. One I was friends with while pregnant with Lily, her little boy had HLHS and had underwent his first two surgeries, he seemed to be doing well, except for an infection that he got. The doctors put him on a couple medications to fight it and sent him home. His grandparents told his mommy and daddy they needed a little vaction, and that they would stay there with their little boy. So daddy and mommy got on a plane and flew to Las Vegas. When the plane touched down she turned on her phone, only to recieve the worst phone call ever. Their beautiful son had been called home to his maker. He became lathargic, so grandma and grandpa loaded him up in the car to take him back to the hospital, he stopped breathing on his way there, when they got there, he was worked for almost 2 hours, but by that time it was already to late. Little Seamus was a happy child that touched everyone that knew him.
I knew a mother while at St.Joes, her little boy was in the room right next door to Lily, he was a couple months older then Lily at the time. He also had HLHS if I remember correctly. His mama, had 2 other little boys so spent as much time as she could there with him. After Lilys emergency o.h.s, when she started to recover, he started to deterorate. Which was a shock to all of us, seeing he was doing so well only a few weeks before. Lily started to fight with everything she had, and he started to slipping away slowly to be back home with Jesus. I still remember the day that he passed. The floor was so quite, in a way defeated. Everychild lost to a CHD, hurts everyone that has ever been affected by it, even if you haven't lost a child or not. I remember walking pass the room and such a feeling came over me, that I looked up and saw Bridgett walking out. I wanted to give her a hug and to this day I regret that I didn't. Her heart was being broken and there was nothing any of us could do about it. He passed in his mothers arms, after they turned off everything because they knew they could no longer fight something that was stronger then them. Even after they were gone, the floor didn't say much, everyone stayed in their rooms with their babies, and thanked the Lord almighty for another day with their precious blessing. And even though no one ever said it aloud, you knew what the other was thinking, which was, Thank You Lord, that wasn't my child. But we all know that, that could be us any day.

The last story I want to share, you can actually visit her blog spot and read the whole story. It is the story of Eden. I never met her or her parents in person but cried the day Eden was called home. I have made mention of her in a few of my other blogs, she shared the same birthday as Lily and Bela, and had the same speical heart condition that Bela has. She lost her brave fight and was called home to the Lord on July 5th. She just celebrated 3 months back in heavan with her heavanly Father, she is whole once again, but here on earth, she has so many that miss her. I will not go into deatial of her story, that is what her Blogspot is for. Look for the link on the left hand side of the page titled Angel Eden, and start from the beginning.

So, as I wrap up this blog, I want to say a prayer for all those who have lost a baby or a child. I may not know entirealy how you feel, but to an extent. As I lay down tonight I will ask that our Heavanly Father wrap his arms around all of us that hurt on this day espically, and hurt every other day of the year that isn't on the calendar to be marked by others to see. May we all find some comfort as we lay our heads down to sleep tonight, and remind ourselves, even though our Angels are no longer here with us on this earth, they wait for us to walk through the gates into heaven and call their name.

I will continue to cry for every loss we have, because every baby that we lose to a CHD, is almost a personal loss to me...because I am reminded everyday, that could be my Lily.

Sending out my Love and Hugs to all that need them on this day!

Friday, October 10, 2008

We're home

So here we are, home again, finally. Ok...that was the shortest stay ever so I am beyond greatful. Although I have to say, she was a handful this time around compaired to the other times, she didnt want to be there in the least bit. Once she stated to feel better she didn't want to be stuck in that awful bed and hooked up to those yucky wires and iv's. She lets us ALL know how she felt about all of it.

We wont get any real news until the 22nd of October, all the doctors will be discussing her case at a conference on Tuesday of this coming week but we wont hear anything until her next apt. So here I am sitting on pins and needles until then. We got a small glimmer of hope when Dr.Rhee told us the gratting doesn't look as bad to him as he originally thought....but unfortunatly i can't hold onto that. Because according to Dr.Pophal, the gratting is at a 60, and they don't usally like it above a 40. So she is consisderd moderate, severe would be 80. Gratting would be the preassue in the valve. I will look it up later to try to explain it a little better. So until our apt, we dont know when surgery will take palce, what they will want to do in the surgery, etc. It is just sit and wait. She was well enough to come home so that is enough for me right now.

I will post a montage here next week, I forgot my camera at my in laws, when we went to pick Austin up yesterday, Lucas is staying because his cousins are going to be there this weekend, Austin didn't want to stay, he wanted to come home with daddy, mommy, and sissy. Bless his heart, he ran up to Lily yesterday when he saw her and goes, "My baby, my sissy, my Lily, I wub you!" he planted a kiss on her cheek. I almost cried....leave it to me! They love their sissy very much! You don't realize how attached they are until you see things like that.

Sending out our love and thanks to all that continously check in on her and pray for her, we can never thank you enough your thoughts and prayers, once again, the Lord truly heard them all.

God Bless you all,

Thursday, October 9, 2008

Rise and Shine........NOT

Good gracious, I can't believe that it is 5:40 in the morning, and the thing I can't believe is, I AM AWAKE....ok...wait...I can believe that, what I can't believe is, little Miss Sunshine is WIDE Eyed and bushy tailed over there. Now I don't know if maybe it was Maria's doing, coming in talking to her "Princess" or if she woke up on her own accord and then just dragged everyone in here to adore her, but needless to say, everyone that knows lily has stopped in to see her and see how she has been doing.

The first thing anyone says is, "I didn't know you were scheduled to come back." and then it is followed with, "Oh my gosh, look how big she is", and then the, "what are you feeding her?"

I have to say, Lily has never been deprived of food. She eats every 3-4 hours and has anywhere from 6oz to 8oz....and at night it is 8oz WITH rice cereal....we actually get a good 6 hour stretch before she even beings to feel those SLIGHT hunger pains in her belly. I figure my poor baby girl has had to go a week without food once in her life time and then after surgeries you have to do it again....ok well, she wasn't really conscience for that one, but still, no food is no food. And well, these days, she LOVES her food. She is acutally eatting while I am typing this, and I am praying that she closes her eyes and heads back off to dreamland, so I can too. May be wishful thinking on my part, but I would like to study the back of my eye lids again, and make sure they pass the inspection of having no cracks.

Chris hasn't stirred all night...must me NICE....I swear he could sleep through another World War, and only wake up if he had to go to the bathroom...i cant sleep like that. But I have learned to tune out the alarms unless I know she is in a fragile state, then I don't tune them out. Weird I know, but you know as they get better, the alarms usually dont mean a thing, and it is just from them being a wiggle worm....which Lily totally is.

Ok now that I just felt my IQ drop a little because I just used the word totally in a sentence....I feel as if I am one step away to being a valley girl going...OMG...No way...and as I just typed that I could literally hear myself in my head and seeing the whole hand on the hip thing and then the other hand out in front of me, all prissy. See it is times like these my sense of humor is at an all time high and that is when I know I am delirious and need some sleep because I am never this entertaining any other time.

Speaking of Alarms, Lily is setting hers off right now, her o2 saturation has been anywhere from 92-99 all night, which we usually hang 96 so...its not far off, she has an oxygen mask her her bed just incase we fell the need to use it. Well we havent but she has felt the need to chew on it, along with her pulse ox, and her IV....before she pulled it out...your getting the drift. She slept all day yesterday but now that she is awake, she is showing everyone how spunky she really is.

Ok...she went to sleep I am going to go do some insepections of my eye lids, I will let you know the results later....


Wednesday, October 8, 2008

End of the nigh to a long day

Well, it is time to call it an evening...I talked with Dr.Underwood,(ICU doc) and she told me that all the doctors will get together on Tuesday of next week and discuss the case and what the best way to approach it would be and what they should do....when they should do it....etc. So...we are all on standby. The echo that was done showed what it showed in the Cath nothing that we didnt already know. So....we are waiting...impatiently I might hear what the doctors decide... I probably wont hear anything until Friday of next oh we go testing me to see how paitent I am....I dont think i will have nails by the end of next week!

I will be making a video montage of today when i get home tomorrow, they usually only take me 30 mins to put together....and chris is off tomorrow so I will have a few minutes to get it and eye out for that. Other then that I am calling the day a wrap...Lily has been calm and good all day...which is not like her...I hope she isnt reserving that for her next visit...then again knowing have to ask yourself...would you really be shocked?

Nighty Night all, thank you from the bottom of our hearts, *Chris, mine and Lily's that is* for all your prayers. I know the Lord heard them today!


She's being stabalized

So we are back on the 7th floor once again...home sweet home for the next 24 could be worse. We were given not great news but it could have been it goes.

1: The Ballooning did NOTHING...didn't change it a did mommy know that was going to happen...i guess we will just call it mothers intuition again.

2: she has moderate it isn't severe yet...YET being the operative word here.

3: They did not blow the valve....THANK THE LORD...they brought Dr. Cleavland in, Dr. Rhee, and Dr. Albalarious...*I don't know if I spelled that right...then is hard enough to even say it* they came in and gave second opinions on her heart.

4: We are looking at an OHS sooner then we expected....*Go figure...mommy was right again* but when it will happen we do not know. that is something we will talk about when we get to the room and talk with all the doctors...and we have to wait for an echo tomorrow to let us know how her heart is fairing.

So...all in all, it could have been a worse day, I have yet to cry, I think that will happen a little later tonight as I lay down and thank the Lord for what seems to be the millionth time in that last 45 mins. I just keep reminding myself though...even though this is ok I have to gear myself for another OHS....and if I thought I was a mess for this....that is going to take a whole lot of preparing....

I will update again soon!


Here we are...back at St.Joes, our old familiar friend, Our home away from home, our other family. The morning started off as well as it could seeing the alarm went off at 4am...Note to everyone...don't go to bed at 1:30 and expect to wake up at 4 in a cheery mood...yeah...lets just say I was not my normal peppy self this morning, I think nerves had a lot to do with it also, on top of lack of sleep but still....yeah....anyways, we got up and Lily was starting to fuss, poor baby girl has never gone more hen 3-4 hours without a bottle,(We starve her, thats for sure, you can tell by her the size of her generously porportioned things) We gave her, her binki, she was ok with it at first( keep in mind I say at first) she continued to be her cute cheerful self. All smiles and giggles,(she is her fathers child in the mornings not mine, you would never catch me smiling before the sun rises. There is a time to be up and a time to sleep....being happy that early just isn't me at least) I finished packing everything, and we loaded her up in her car seat and the smiling continued...we walked down stairs to the car and off we headed....4:40am...(wow I sometimes miss the days of having only one child...there would have been no way we would have all been ready in 40 mins if it would have been all 5 of us.) By the time we took the 15 min drive to the hospital , I opened the car door to pull her out and she looked as if she was alseep...Was I wrong, I started pulling things ou and I start to get this feeling someone is wawtching me, so I look up and low and behold, my beautiful little girl with her innocent eyes are staring at me, just watching what I was doing. I said good morning beautiful girl, and that got me the biggest smile of the monirning...made mama feel good.

We grab everything for the car and head into the hospital. I haven't been to St.Joes that early in a long time, so I forgot how empty it can be in the morning when you are the butt crack of dawn mind you...but still...the hospital never sleeps. We checked into preregistering, filled out all the dandy paper work, and then headed up to pre op. It was empty like it was the first time around,(well I should mention it was for the TEE, what led us up into the 2nd OHS). We were given a bed and were told that the nurse would be right with us. Not more then 5 mins later one of our PTCICU Nurses goes, Oh my gosh, look how big she is getting." It was Brenda, she is a lovely nurse and is wonderful at her job. I was quite shocked to see her in Pre OP...but she told me she transfered down there because it was less chaotic...I can understand that. It was great to see her, I will post pics later,(yes...I know...when dont I post pictures) She had to stick her to draw blood and hopefully start an IV...Lily has never been an easy stick so I didnt hold my breath. Oh my, Lily cried so hard, I choked backed my sobbs and my baby cried in pain and there wasn't a thing I could do about any of it but say,"Its ok Lily, mamas right here honey, mama's right here, I am not going any where love." Chris stood back at the end of the bed...there was no room for him by her. We got the blood for the labs, but the IV didnt take...*I did mention she is a hard stick...she has a lot of scar tissue from all her previous IV's* Daddy took her and comforted her after all of it...she didn't want me, I was an acomplise in the matter of all of it...from that moment forward she kept an eye on Brenda and didn't trust her when she was near....poor Brenda, Lily does love you....

We were finally taken over to the cath lab where we waited for Dr.Pophal to show up and explain the proceedure to us....I already knew how the proceedues worked....but he went into great deatial of what could happen if things went wrong....I know that he has to tell us things like that...but I really didnt want or need to hear it. I already knew all of it....He told me what we were trying to succeed for, and that is hopefully that we could just balloon the valve and relieve the problem...I pray it is as easy as that...I wont know for a little bit longer. He said that there was always a possibility that she could have them membrane layer around the valve that wouldnt allow him to do so, and that it would require surgery to remove it. I am praying that is not the case. He of course mentioned the, "If we blow through the valve, then it will require imidiate OHS...." Lord please let that NOT happen...If you think i came unglued with the second Open Heart surgery, it would be nothing compaired to this.

So right now, it is a wait and see type of matter. I have wanted to cry all morning, but i have not allowed the tears to fall....I will only allow them to fall once this is over, come good or bad news, the tears will fall.

I will update as soon as I have more!!

Judgement day...Posting throught day...start from bottom!

So here I am...instead of sleeping, i am blogging, thinking to myself, Lordy bee woman, go get your hind end in bed, you are going to be hurting tomorrow...but no rest for the weary...I am to nervous to have NO IDEA...ok well a few of you might understand. Seeing it is now 1am, Lily is not allowed to have any more I will introduce you to Miss.Crabby Pants tomorrow,*Through Pictures that is, wihile we are waiting.* We have to be there at 5, and then they will take her back at 7. They did not tell me how long they would be in there, not even an estimant of a time. Should I bring a pillow? Oh wait...I already am....I want all this to be over already and behind us because, I want to know what the future holds, how long until we have to do what we have to do....So....I will put on a brave face....and straighten my back and hold myself tall as I walk in there when the come by and deflate me, I hopefully wont sink so low. I know I shouldnt think that way, but right now it is hard to think otherwise....oh well...we will find everything out in less then 10 hours...keep your fingers and toes crossed, and please say a million prayers for my lily girl, I cant imagine my life without her here with me.....

Saturday, October 4, 2008

Tick-tock goes the clock

4 days and counting now, and with each day that passes I become more and more nervous. My dreams are terrorizing me and sleep is not my friend even though my body craves it something awful. you would think me being so exhausted, my mind would just shut off and not dream at all. Well that would be a negative and the dreams get worse every night. Dreams of death, funerals, life without Lily, etc...and no matter how much I tell myself to knock it off and besechingly ask the Lord to help these dreams to stop, that I can't bare the thought of any of that happening, they keep coming with a vengance.
I have a few friends that ask me if I think it means anything, I do believe dreams have some significant value to our everyday lives, but I pray this one has no meaning behind it and it is just my nerves about all of this. To me, it is sickning to know that no matter what, Lily will have to have her chest opened back up for another surgery, and then after that surgery, we wonder how long it will be until the next one. The thought of my baby girl, on a hospital bed again, with IV's and heavily sedated scares me and saddens me. But in all actuality, I would rather have my baby girl hooked up to all of that knowing that is what is keeping her alive, then not doing anything, and losing her all together. We don't have any other options. Transplant hasn't even been discussed because even though her heart isn't well, it isn't sick enough either.
There are still days I wake up and wonder if all of these last 7 months and 5 days have all just been a dream. and then I roll over and see Lilys crib and I know that this is our life, and this is the chaoticness that is consists of. I just hope things calm down when she gets older...but knowing Lily, that is probably to much to ask.
Below are some pictures that were taken of all of us, but mostly of Lily. They were taken by a very kindhearted and loving woman, by the name of Rachael Earl, we came to know of her by our friends, Avery and Bela, Bela has a special heart to, I think I have mentioned her in a few of my previous blogs. Anyways, Rachael was kind enough to come to our home and take pictures of all of us for free, because of Lily and her special heart.
Words can never express what these pictures mean to me. Like I have told a few pictures, I was afraid we would never get a nice picture of all 5 of us togehter, but the Lord granted me this gift. and I am beyond thankful, I am touched and once again feel even more blessed to have this miracle in my life.
I hope you all enjoy these, if you would like to view them all here is the site you can go to.
this first link is a slide show
this is all of them, you can click on them one by one to look at them

The first picture of all 5 of us. and yes...Austi boy was being stubborn!...not sure who he gets that from!(Sigh...ok he gets it from me)

I do not have favorites in my children, but I have to say, Austin and I seem to have a special bond
Lucas and his favorite pass time

These are my 2 handsome men....I am one blessed mama...I will have my hands full when they all get older
Austin Nicholas 1-18-06 ~~~~~~ Lucas Christopher 11-05-03

Austin boys favorite thing to do
Chris and his Mini-Me

Austin and mommy share a passion