Tuesday, September 30, 2008

Lily's Yeast Infection...One week and counting

Yes...TONS of pictures...I know...I cant help but take pictures of my princess!

Austin Loves his sister!

This is the best pic I got of all of them!

Lily LOVES her Daddy!

Ugh...so go figure, my little Lilybug goes and gets a yeast infection....in her MOUTH...go figure... so she is on meds for it, we have been on them for 5 days now...yay...she is almost done, one more day. I am hoping that doesn't stop her from having her Cath done...I am overly nervous and sick to my stomach and not able to sleep at ALL because of all this waiting and the unknowing. I pray she is well enough for the Cath on Wed next week...and if she isn't I pray for calmness for my nerves....
All in all, everything is about the same over here...Lily is ALMOST crawling...but not quite there yet. I will try to get her on video doing her army crawl, it is too cute.
Side note, I am not doing as well as I would like. I went out with my girl friends this weekend kareoking* and well, that was a horrible night. I left my drink unattended for all of I think 3 mins while I ran out to my car for something, everyone went outside for a smoke break...go figure...while anyways we are assuming during that time someone slipped something into my drink because about a half an hour later I was up singing with my friend and passed out.... not the greatest way possible to go down singing...I was taken to the hospital by ambulance and was there for over 5 hours. All in all not how I thought my weekend was going to go, but it is what it is, and needless to say...I am not going out for a LONG while...ugh..
any who...I will update if any thing changes over here like if her cath gets canceled because of her yeast infection.
I need to run...little Miss just woke up and is demanding my attention.

Monday, September 22, 2008

Lily's Heart Drawn by Dr. Rhee

This is Lilyana's heart drawn by her cardiologist. the mirror image of ours. This is the latest drawing, you can see where all the dark scribbles are, that would be our problem area. the circled valve on the right hand side is the valve we are talking about using for a valve replacement. Oh, and to correct my blog below, she can have an artifical valve replacement, but she would out grow of it to quickly and end up having to go back in to have another OHS to do another replacement valve. So, if we are going to use an artifical valve, we want to wait until she is at least 2 or 3 years old I think, so the valve will last a little bit longer until we have to replace it again. This is the reason she will be having OHS for the rest of her life! If you have any questions, feel free to ask me!

Sunday, September 21, 2008

The Music of my Soul

Yes, I figured I would open this blog, like almost every other one with pictures. I began to realize that there are very few pictures on here of Lily and her daddy. So here are some new ones. She LOVES her daddy, she has him wrapped around her finger!

It's moments like this that I am going to miss most!

Look...its a bird...its a plane...no...its my SUPER LILY!
Here she was propped up on my legs
She has assumed the position....great...crawling, here we come!

So, as many know, Lily and I LOVE music. Music is what got us through her second surgery, when I couldn't touch her, when I couldn't talk her, the music I played talked to her and calmed her in a way I couldn't. Most of the music that I play for her is Christian music so I believe the Lord Almighty is not only present because of all of our prayers, but he reaches through the music also. Lily and I dance around the living room when she can't sleep. She looks into my eyes while I gaze into hers, and I will sing to her as we sway to the music. She will be my child that shares my passion for music. I pray she has the voice of an angel, one that I was never blessed with, but still pretend that I can sing. I hope she has a voice that will make up for the lack of things that she can not do.

Where am I going with this....sorry...a little side tracked...listening to music...the music I wanted to share with you. If you have seen the CHD Awareness Video Montage I created called "Imagine....Life of a CHD Parent" then you will whom I am refering to. The singers name is Plumb, she released a Lullaby cd back in 2007 called Blink. The most popular song off the cd is called, In My Arms" Beautiful song, but I recently was able to listen to the WHOLE cd. It moved me to tears! There are 2 songs on that touched me to my core, the first one was, God will Take care of you. It is a hymn that many know, but a new style to it that is beautiful. Also the second song is called "My Sweet, My Lovely" I have to say, this is now my song to Lily. I am going to included the Lyrics below.

This is a link to a site where you can listen to a clipit of the song.


I tiptoe
Hush hush...
Pitter pat
Goes my heart...
Your beauty
Your innocence

Joy is found
With every kiss

My sweet, my lovely
My sweet, my lovely
So sweet, so lovely
Close your eyes
Close your eyes
Close your eyes
Close your eyes

I stare into
The bluest eyes
Time stands still in
Your smile
You weren't there
And now you're here

I dreamed of you
But I never know how...sweet and lovely

My sweet, my lovely
So sweet, so lovely
Close your eyes
Close your eyes
Close your eyes
Close your eyes

My sweet, my lovely
My sweet, my lovely
So sweet, so lovely
Close your eyes
Close your eyes
Close your eyes
Close your eyes

Lily now has 2 songs, the one above and the one I made up for her,

Lily's song

Sweet Sweet Lily
My Little Little Lilybug
Precious Lily
Princess Lily
Mama's Lily

I very much recomend buying this cd if you have a chance, if you love music as much as I do, you can not go wrong!

Wednesday, September 17, 2008

Tell me this is ALL just a DREAM!

I am going to open this blog with a prayer.... Dear Lord, Please lend me the strength to get through this blog and the days ahead...I am scared, I am sad, I am angry, I am frusterated...Tears of Frustration are making me sick and the anxiety has my stomach in knots. Tomorrow is in your hands, you have taught me to live for today and remind me that I am blessed for each day I have with her. I thank you for the time I have had, but Lord I ask for more. Please help Lily's heart maintain it's strength through these next few proceduers...we all know she will need it.In your name Lord, Amen!"
(I LOVE this picture...even though the flash washed her face out...the eyes stand out...that is how blue her eyes are....beautiful aren't they?)

So....now that you have seen part of my emotions many of you will find that todays apt wasn't all that I expected it to be. It is very hard to explain, so bare with me as I try to explain this all. First, Lily will be going in for a heart Cath on Wed October 8th at 7am, to look at the narrowing in the bottom of her Aortic Valve. It has not gotten larger since she was 4 months old, she is now almost 7 months, needless to say, it isn't growing, which presents a problem, because then the flow isn't what it should be...breaking that down...meaning, that her heart isn't pumping properly and she can get what is called Pulmonary Hypertension. I am just going to include this link for it...I am WAY to tired to explain all this in great detail http://www.americanheart.org/presenter.jhtml?identifier=11076.

This is all she did while we were out...
Lily's original narrowing is not the problem her, but part of it...I will try to explain this to the best of my ability. The narrowing she had was called LVOTO..Left Ventricular Outflow Tract Obstruction....that narrowing is holding the same as it was 2 months ago...nothing needs to be done, but with part of that procedure we took care of her AS..or Aortic Stenosis, which is at the bottom of the Aorta. They had to cut part of her Aorta and clear out part of the scar tissue from her first surgery...needless to say...ITS BACK....so...where do we go from here...what do we do from here? well.....we have a few different things to try or do.
1: Durring the Cath we will try to balloon it to make it bigger and by us some time. Because Ballooning will not make it go away, she will have to have a valve replacement...just how long we can hold out on this...well, I will explain that below.
2: If the ballooning DOES work, then it could buy us a mattre of weeks, months, a year, to IF WE ARE LUCKY...a few years until we have to do a valve replacement. The older she is the more likely we will be able to use an artifical valve instead of a part of her heart to fix it.
3: If the ballooing DOESN'T work, then we will have to talk about how much time we have until we have to go in and do a valve replacement. And seeing she would still be small we wouldn't be able to do an artifical valve replacement, we would have to do the Ross Procedure, which would be using part of the valve from the Right side of her heart to replace the bottom portion of the Aortic valve.
This is her teething face...oh so cute to watch...
(Hope everyone still is following) Needless to say....we are all hoping that the ballooning does work...even though another O.H.S is in our future, the longer we wait until her next one, the better, because it will give her heart that much more time to strengthen its self for its next surgery, or...it could cause it to weaken...just depends on how her heart handles all of this. That is what makes me so frusterated...the not knowing. I don't deal with uncertainties, I want facts, I want numbers...I don't like what if's, or the maybe's. They drive me BEYOND CRAZY. I have said it a few times since we found out about all of Lily's heart defects, somedays I wish she would just have had the HLHS...I was prepared for that...I knew she would have to have 3 O.H.S's, but this I was not prepared for....Because, everytime you go back in for O.H.S the higher the risk you are at for heart failure. Many continue to ask me "when" or "if" Lily will be placed on the Transplant list. Well as all know, that is the LAST option. If you do research, many transplant hearts only last about 10 years, roughly, and with a transplanted heart comes many other problems, such as with the medicens they take, they are finding they can cause cancer and TONS of other problems. And, if you are lucky enough to get another heart transplant when the one you has starts to fail, the most transplants done on one person has been 3 sucessful ones, before their body had, had enough and then they passed away. So if you think about that...that is roughly 30years...I want my daughter to live longer then that. So...as long as we can keep HER heart, the better. I am not against transplant...just my last option.
I told you...this is all she did!
Well, now that I have shared this news with everyone, I am going to go digest this myself and get some sleep. I have a 2am morning ahead of me for work...needless to say, I will have a lot on my mind these next couple of weeks. Please Continue to Pray for my sweet Lilybug...Her heart has stayed as strong as it has because not only is she a fighter, but she has the prayers of so many others behind her. I will blog most likely again tomorrow, with a few more things...but for now I am calling it a night. Thank you All for your continous supportMy Love is never ending for all those who continue pray for us and continue to support and follow us through this journey. God Bless you all.
Waiting for our Echo to begin
This is what happens to my poor baby girl when they put those stickys on her

She wanted the camera REALLY bad!

Does she not look HUGE on this table?

Off We Go

We are going to be heading out the door here in just a few minutes to head down to St.Joe's for Lily's Cardiologist apt. It has been 2 months since we last had an echo and I know we are still have arythmias...so...I hope and pray all has cleared up since her Pediatricians apt a month ago and her heart is healed to the point of not needing any procedures done at this time. I will update with pictures a little later. Please keep us all...especially Lily in your prayers today!

Saturday, September 13, 2008

My nerves, my miralce!

This is me waiting durring Lily's second surgery for news of how she was doing!

Ok...so I know I said I wouldn't post again unless something came up....so just to calm everyone elses nerves...Lily is fine...it is me that I is falling apart. I am on an emotinal roller coaster ride. I don't know if it has to do with the lack of sleep, or the stress from Chris and my divorce process, but I am phyicaly sick about this apt coming on Wed. My grandmother reminded me today not to borrow tomorrows troubles but golly...how can you not when you have been to the depths of heck and back several times with your child...knowing that each day you have is the truest blessing. I can't shake this awful feeling that when we go in on Wed they are going to drop a bomb shell like they did last time and tell me that my baby girl needs to stay at the hospital....or that we are going to have to go back soon because something is wrong with her heart again. I don't think I can take that again. I have almost lost her twice...not something that I want to relive again anytime soon.

When I do find time sleep, all my dreams are about her second surgery, when Dr. Cleavland walked into the play room and up to us and began to tell us how rough of a surgery it was. I remember, Tanner(Bela's father), Matt(Addisons father), Drew(Addisons brother), and Drew's grandmother were all in the room....and it became quite... I got up from my mindless task of coloring and took Chris's hand as we walked out into the hallway. I remember grabing onto the wall railing for support because the look on Dr. Cleavlands face was not one of good news. I remember to this day the words that came past his lips, "The surgery was a lot harder then we anticipated it to be, there was a lot of scar tissue there, in all honesty, this was the worst case of this we have seen so shortly after a previous surgery. She had a VERY hard time coming off Bypass, her heart is very weak. She has a lot of fulid on her and the next 24 to 48 hours are going to be the most critical, IF she makes it through them." The word "IF" still echos in my head...I still get that sickning feeling when it all replays in my mind. Even when I ask the Lord Almighty to take these thoughts from my head, they are still there. I believe he has left them there so I will never forget what a miracle Lily is. But in my dream, I still remember shaking my head and letting go of the railing, reaching for Chris's hand, relieved when I found it.

We walked back into the play room, and I silently put away the crayons, while shaking. I took the cell phone from Chris to call my family, which I have to say was one of the hardest phone calls to this day to make. My daddy picked up the phone on the first ring and said "So, what is the news?" I told him all of what the surgeon told me, it was so silent on the other end I thought he may have dropped the phone, but he said "Have you seen her yet?" i told he we hadn't they were still getting her situated in her room...that I would call back once I saw her, he said that would wait for the call...I knew he was choking back sobs, I found out later from my stepmom that as soon as he hung up he was crying, and broke the news to the rest of the family. As I walked into the room, I couldn't even see my daughter...there was so many around her, her nurse came up to me which was Mary Rose and then Maria, and they told me that this surgery wasn't like the first one, to be prepared as I walked up to the bed. I am glad I was holding onto them when I walked up...I can still so vividly see the blood running down her sides, the sounds of all the alarms, it was awful....

as I sit here and type this I can barely see through my tears because it is all still so fresh....I am so scared of this happening again. I can't even being to invission my life without my Lilybug....So...until we get a clean bill of health from the Cardi on Wed....or until we get any news...I am going to be an emotional wreck....

So seeing I didnt start this blog until after Lily's second surgery, I don't think I ever shared any pictures of it. Please know, these are not for the faint of heart, these are very graphic pictures. But these are our life....these are what our lives consist of now, this is our daughter and the miracle she is!

For those who have never watched them, on the left side of the page are 2 video montages, of her first and second surgery. While watching them you will see other montages that I have created. there is one called Imagine.....The Life of a CHD Parent...it is a 21 min montage but worth every moment of it, if you have the time to watch it is that is!

(This is when they were walking away with my life)
These next 2 pictures were photoshopped for us...they are 2 of my favorites along with the one at the top of this post...Chris's took the picture at the top, and in all honesty I didn't even know it was on the camera until I pulgged it in...needless to say, you know I was an emotianl wreck...but I am gald he took the picture...it showed the emotion I felt that day!

All in all she was being kept alive by 18 pumps that day and she had 4 different blood products running through her!

Thursday, September 11, 2008

Counting down the days

So here we are, less then a week before we step back into the Heart and Lung Institute to get the verdict on Lily's heart and how it has been doing. From appearances, she has been doing well, with the occasional blue lips and dusky complexion...she has been growing, eating, sleeping normally, etc. Nothing to out of the norm except for the things mentioned above. She is now weighing in at a respectable 17lbs 4 oz...and is 27 inches long.
(Such a BIG girl)
She is trying to crawl with all her might, she is so cute, she will get her toes dug into the carpet and get her knees up under her...the only problem with that is, she doesn't realize that she needs to push up on her arms when she does this, so she does an automatic face plant into the carpet...She doesn't seem to mind it...so as long as she is happy, we're happy. So speaking about how she is trying to move everywhere, I like to refer to her these days as my rolling tumble weed. She is everywhere...good gracious, I have had to put pillows where I don't want her, (in our apartment baby gates don't fit everywhere...which is annoying) I have contraptions all over the place to keep her out of things. She giggles to while she rolls, which is adorable to say the least.

People say her and I dont look alike!

Enjoying my Lily time!

But...under all that adorable baby, is a pistol...Lordy bee this little girl knows how to make you bend to her will. I try never to get agitated with her, but I am not perfect and i know I have once or twice...last night for sure...I wanted to cry I was so sleep deprived. The boys went to bed at 8 and so did she, I laid down at 8:30, just curled my legs up with my pillow, pulled the blankets up to my chin and closed my eyes...(Most mom's know where I am going with this) what happens????? Yup...sure thing...Lily woke up...SCREAMING...she was just mad that she was in her crib, because as soon as I picked her up she stopped....ugh...needless to say, I grabbed a blanket and my pillows and trekked out to the living room and made myself as comfy of a bed as I possibly could on the living room floor. I put Lily down, with all the toys she owns, turned the TV onto Deadliest Catch (Still her fave show) and made sure she had a full bottle just incase. I barricaded her into the living room so she couldn't go anywhere...and I tried to get something that resembled sleep...Needless to say...that wasn't much of anything at all, and I didn't get anything solid until Chris got home at 11:30, and I slept a solid 30 mins until I had to get up at Midnight and take a shower to get ready for work...Needless to say, I was not my cheery, peppy self this morning...very sarcastic actually....me....sarcastic...never..(Hope you caught that sarcasm)

Smiley Lily girl!

Such a goofy smile, but we love every second of it!)
Anyways, all in all, everything on the home front is good...just a little nervous...but good. I will be happy when the day has come and gone and nothing more then a "She looks good, we will see you in 2 months" come from all of this...One can hope and pray that is all that is said...Please pray with us. I will update once that apt is over unless something of importance comes up between now and then!