Sunday, August 31, 2008

Trip to St.Joes, visiting little Miss.Bela!

We took a trip to St.Joes today to visit Lily's friend Bela. Bela is a HLHS baby and shares the same special birthday as Lily. I have mentioned her before in my other blogs, her blog link is to the left of the page. She underwent her second surgery,(the Glenn) on Wed morning. It has been an uphill battle since then. Her mommy(Avery) and daddy(Tanner) have been on pins and needles because she has given them a few scares since she has been back from the OR. I took some pictures from visiting today, she is looking good, a little beat up from surgery, but I dont think any of us would look any better

I have included pictures below from out visit today, not many but there are 2 of Bela. It was nice to see you again today Avery.

Oh on a side note, for all those who are reading my on going blog *Jenna~Mommys Blog*, I have added more to Lilys story today. For all those who have not read it, it is the book I am working on for Lily, it is called Once Apon a Heart!

Lily *above* is in the big girl stoller...she loved it!
Lily *Below* is getting Lovin from Nurse of her favorite nurses!

Now here is Princess Bela, the pretty in Pink Princess

Now here is Bela with Daddy and Mommy, how they love her so. Her big brother Benson was with grandma at the time. She is adored by all that know her, she truly is a miracle just like my Lilyana. Please, keep her and her family in your pryares, she is having a hard time with this surgery. But it isn't anything that she can't get through, she is a fighter, just like Lilyana. It takes a special child to get through all of this, and she is one of them. We love you Bela, keep up the courage it takes to fight this couragegous fight, you have so many that Love you and that are standing here rooting you on!

Friday, August 29, 2008

Happy 6months Lily, Bela, and Precious Angel Eden(Fly High baby girl)

Well the day finally came, and it is a bitter sweet day. My baby girl is half a year old...the BIG 6 I look at the date on the wall, I truly feel blessed, relieved, happy, sad, and angry. Where do all those emotions come from...well I will break it down for everyone.

Blessed: I truly feel blessed each day I awake and hear my little girl babbling in her crib...even crying at me in her way of ....MOOOOMMMMMM Get UP...Get me out of this thing...lets start this new day already." She is an inspiring child, and I love that I get to call her mine.

Relieved: I am relieved to have made it this far from her birth. That even though with her complications, that she is, breathing, and smiling. That she is home, and doing well for the time being...

Happy: I am happy that she is such a content baby. I felt that after her going through so much she would be cranky and hate the world...Lord knows I would after 2 open hear surgerys, and 4 seperate hospital stays...becoming the human pincushion....But here she is, her smile raidates to all that she meets. Her smile can melt the meanest of hearts and warm it. Even people that dont like children are drawn to her. I have had many people stop me to adore her...once I had a woman tell me, she decided not to have children due to the fact that they are to much work and she was just to her time has run out and here she is, no children, no husband and usually is so bitter about all of it, she cant stand the sight of kids. But something about Lily stopped her...and made her come over to see her....She asked me how old she was...and i filled her in and told her she was truly our miracle...we talked for a good 20 mins, right there in the mall, a random stranger and I. She had tears by the time she walked away from me...and said she wished she wouldnt have been so selfish...because she said she saw at that moment in time from me, that being a mother is better then anything life can offer...I cried with her...Lily inspiers many, she doesn't mean to...but being such a beautiful baby, and such a special little girl...she does it without even meaning to. I am love holding her, cuddling her, and kissing her. She is my ray of sunshine.

Sad: Now I are in the world can she be sad after all she has mentioned above...well you see...even though my little girl is 6 months old, to me she only feels about 4 months old, i feel like i lost time due to her hospital stays and surgeries. I didnt get to be a mommy right away with her like I did with my boys....I was always afraid that I wasnt going to bond with her like I did with my boys... I was so excited when I found out she was going to be a girl....I had wanted a little girl since I was pregnant with Lucas....I love my doubt about that....but there is just something special about a girl...I think all mothers invission them self having a little girl when they are children....well I finally got my little girl but at such a heavy saddens me that she wont be able to do everything that I have done, such as run track, played sports, etc.... To see her face get sad when I have to tell her no, that she cant do things like that because she runs risk of hurting her heart...I can hear her tantrums now(I already KNOW there are going to be tantrums....she is my daughter after all). What I wouldnt give to make her heart all better, but that will never happen...her heart will never truly be fixed...just temporaily repaired.

Angery: so...anger....oh boy....hold on to your seats. I am not angry at Lilys condition...what will be will be, and what is, is...but I am angery at how many it effects with no warning. I am angry that there are parents out there crying into their pillows at night because the crib in the next room is empty. I am angery because parents that try so hard to concieve end up with heartache and pain, and uncertianty. I am angery because at this moment in time, as I celabrate Lily being 6 months, happy, and as healthy as she can be for a baby with CHD, a friend of ours is Celabrating her daughters 6 months in the hospital, while she is hooked up to monitors and IV's, fighting for her life, and then another friend of ours, is moruning the loss of her child, who would have been 6 months today just like Lily. Some days I feel guilty for being so happy while others are in so much pain and anguish, and that angers me. None of this is fair... But then again, life is never fair...we lost that shot when we(Eve that is) took that apple off the tree and took a big large bite out of it...I hope that was the best dang apple ever....Thanks Eve!....Thanks...

Now....lets move past the above and talk about Little Miss Ray of Sunshine. She is doing well, we haven't had to make a phone call to the Heart & Lung Institute in over a month...I cant believe it...I am loving life right now without having so many apts. They get wearing...nerve racking...and just plain aggrivating. I took Lily to the Peds office and she got 5 shots...poor baby girl...but she took it like a trooper, smiled until the second one, and only did she being to scream when the shot was injected...and as soon as the last was done she stopped crying and looked at me like" Gee thanks mom...such a big bad protector you were" I got her dressed and looked at her bandaids in I was not happy that she had them...but I was happy because they heard me right...I was over the moon and back that my little girl got PINK bandaids...can you tell how much I have longed to have a little girl? When we got home, i pulled her clothes off and called Daddy out from the boys room and said"Daddy Look, PINK bandaids!" He rolled his eyes but took her from me and said" My princess has pink bandaids, what a big girl you are" She smiled like always at him, she adores her daddy, and when he is around only has eyes for him. They sit here at the computer together and she likes to help push buttons for him, he never tells her no, just readjusts her out of reach of the keyboard. Even when she is screaming all he says is, Lilyana, what is all that nosie about.... She has daddy wrapped around her finger...even though he will deny it.

Soooo.....all in all, Lilyana is well, and getting big, and I am starting to miss things seeing I just started work. Seeing I haven't updated on here in a while no one really knows what is going on, but Chris and I are divorcing, that is why I now have a job and working oppiosite schedules of him so that the kids never go into daycare...they never haver strangers taking care of them, just mommy and daddy. Things are going to be rough over the next little while, but nothing that I cant weather a storm against. We are making things as civil as possible for the childrens sake, we dont want them to think it is their fault, which it keep things peacful...and right now they know nothing is going on. It is a long story, one that I dont have time to go into due to the fact that I need to go to bed now...because I have to be up at 1 am which is 3 1/2 hours from will wrap this up for now...and I will try to update at a later time.

Smile my Lily

Don't think to hard....

Such Happiness

One of the 3 loves of my life!

I took this picture like the one above...and I love the face I captured!

Such a Big smile, for such a big girl!

Sporting the cuteness

How I wish she could sit up on her own

Brotherly Love

How can you resist the cuteness...Those cheeks are my favorite snack....My little sugar booger!

View this montage created at One True Media

Thursday, August 14, 2008

Roli Poli Lily

My little girl is almost 6 months old. She is getting so big and I cant believe it. We have been blessed that we have had no more hospital stays and we count our blessings everyday because tomorrow everything could change. Lily goes back to the Heart and Lung Institute next month and I am nervous about it. She has been sleeping a lot again. I try to tell myself it could be just because she is growing, but I have been noticing that she gets short of breath I am praying as hard as I can and keeping fingers and toes crossed that all is well with her precious little heart. Thats all we can do, is pray and hope for the best. It is out of our hands. I hope you enjoy the video clips I have included. The one above is Lily being Lily late at night, cranky, and adorable...once you hit around the 6 min mark, she starts blowing spit bubbles...the most adroable spit bubbles to a mommy at least. Now the video below is another video diary...not about me going crazy this time, just updates about Lilybug...Thank you all for your continous support and prayers. God Bless


Sunday, August 3, 2008

5 Months old.....and.....!!FOOD!!

*My Blue Eyed Beauty*

She just woke up from her nap!

Sitting in her Bumbo chair....she has the deer and the headlight Look

I LOVE this picture...Look at those eyes!

I Like to call this her worry face

Ok, so not much new to update. Lily went to the Cardi on the 23rd of July and she has been cleared for 2 months. YAY...such a big deal for us....but all at the same time you think to yourself...Now all the weight is on your shoulders because a lot can change in 2 now I watch closesly all of her signs and others what might be nothing much to think about, can be a heart parents worse nighmare.

All in all, Lily is doing well, she rolled over on her 5 month birthday. That day was a bitter sweet day because as I looked at the calender and squealed with delight over my Lily girl being 5 months old, I was also shook with sadness realizing a speacial little girl was spending hers in Heavan. One of our heart friends, Eden or now seen on the right side of the page as Angel Eden, was a leap day baby just like Lily. She also had a special heart just like Lily, but Eden lost her fight, it will be a month ago in just 3 days...a month to me has flown by but I can only imgine how slow it has creeped by for Edens parents. Please say a prayer for them, and her sisters, it has been a hard time for them, something none of us ever want to go through, it will never be better, but the pain will lessen over time. May the Lord almighty bring them comfort anytime they need it. We are praying for you guys!

So.....BIG NEWS......LILY......TRIED.......SWEET POTATOES.......AND......didnt like it...LOL. I have a video clip and some pictures...seeing we dont have a highchair for her, she sat on daddys lap....please do not mind the mess in the background, we just had company over and I have yet to find the energy to clean up....

(Sorry I cant remember how to put the actual video on here, so you are going to have to navigate away from this page, I will try to fix it!)

View this montage created at One True Media
Lilys First food! 8/3/08

 now that we have the food covered, I just wanted to let everyone know, I am going to be doing some video diaries for updates. Seeing there isnt going to be much to update for about 2 months, I know everyone wants to know how Lily is doing. So I came up with this idea while I was holding the camera talking to the boys while they played with Lily. I have included the first diary below. The next one will be a bit longer and more about Lily....bare with me as I figure out how I like these.
Well that is the all of it for right now. I just want to take a moment to say thank you to all that continue to keep Lilyana in your prayers. I believe deeply that it is because of all of our prayers and Lily's deep will to live, that she is still fighting. I have a new quote I live by and I love it.
"Learn from yesterday, Live for today, and Hope for tomorrow!"
God bless you all!