What a month! :)

May has been an incredible month so far!   We have had so many wonderful things happen.    I'm sure everyone we talk to has been told Lilly's surgery has been moved to next spring as long as all continues to go well.   We are trying to fatten our little girl  up to make the surg easier on her tiny body.   It is so nice to take a small breath and know that she will not be in the hospital for a while!    On top of that we have received the great news that our CHD awareness quilt square is completed and soon will be added to a Quilt with other warriors/angels to promote awareness.   It is so cute we requested ladybugs and butterflies since she is our little Lillybug/ladybug.... and that is exactly what we got!   So happy and excited to see the finished product!   And here's even more good news.... a foundation called Icing Smiles has found a local baker to donate a cake for Lilly on her Birthday!   I will have to add their links because these people are great!   The local bakery is called Faithfully cakes and I can't say enough about how excited we are to see Lilly's Monkey cake and to taste it!!!   Hurry up June 26th!     We are having her party at a local park so the kiddo's can play and enjoy the day so fingers crossed by then the rain will stop!!!    We have been super busy with Nana's Birthday, Mother's Day, Daddy's Birthday, Noah's Birthday, and coming up we have Brant's Pre-school Graduation and Last day of school, a fashion show (career related) for Drew, a town carnival, and upcoming summer break.    Lilly has been enjoying the warmer weather and wants to be outside everyday.    She doesn't mind the rain but absolutely hates the thunder and lightning.    She has also discovered MONSTERS thanks to Calliou....yep Calliou has her terrified of the dark...thanks Calliou.     She wants to go on a nightly walk up the street and has fallen madly in love with her boyfriend (um ya she's not yet 2).   LOL her boyfriends name???? JUSTIN BEIBER.   My girl has her first crush.   She makes us play "Baby" all day long and dances to the video.   She even has attempted to follow his dance moves.   It's a Youtube video waiting to happen.    It's super cute, super sweet, and super LILLY.    She is growing up.    Most days are awesome and we try not to think about how she is different...or special.... other times I find my self blubbering like an idiot.... like the other day when we were playing dress up and she was wearing around my veil from my wedding (it's attached to a tiara) and she was just so sweet and beautiful looking dancing around in it that I began wondering silly things such as will she get married, will she live that long, will she have a good life, will she be able to have kids.... it just fills your mind sometimes....it's like a tidal wave of worry, of fear.... all you can do is try to keep your head up.... and we do... as soon as she smiles it melts away the worry and brings us back to the hear and now.... the happiness and joy of the moment... oh how I love those little moments.... and my little Lilly.    I am so grateful for all those who have given their time, talents, and support along our journey.    Please hug your loved ones tightly and say a prayer for all these little warriors and their families....
God Bless,
Lydia


Lilly's CHD awareness quilt block....

Here are all the great links:    http://www.chdquilt.org/
        http://www.icingsmiles.org/        http://www.faithfullycakes.com/   please show them some support and love.... add them on facebook and send them some thanks!    They really do make a differnce to our children.... and to us parents.... they give so much... they are really angels here on earth!    

Heart Cath Underway>>>> Please Please Pray for Lilly

We woke up early this morning and got started on our trek to the hosp.   Lilly was tired but up and happy.   We picked up Nana and Ma Maw and were soon on our way.   We got to the hosp and checked in about 6am.  Lilly was happy to play in the waiting room.... minus a small accident with a chair....bad chair.    They took us back and got her vitals and made her change her clothes :(   Hospital wear is not Lilly or Mommy's favorite.   She played with her markers and was very good and extra cooperative.   What a good girl we have!    She only cried when we had to get an xray.... she only cried for a few moments until she got stickers with SHOES on them!   Shoes always make my girly happy.    Then she got to go play in the play room....she ran around like a mad woman playing with everything!  We played ball, read books, pushed a tractor over, and just had a grand ol time.    That is until the anesthesia people came to see us and we had to go to our room.    All she wanted to do at 6:30 in the morning is play, play, play.     Then they gave her a drink of Versed, the happy juice... she still was up...but getting a little drowsy....so mommy and daddy had to go into the cath lab with her.... this made mommy and daddy cry.     They gave her some gases and she was none to happy.   I had to hold her hands as she yelled, mommy.... no, no, no.... I felt horribly mean helping to hold her down while she was yelling for me to help her.    One day she will understand it was all for her own good.    Here are some pictures of our morning.... please pray for our little one!  They expect the cath to last from 2 to 3 hours... could be more if they have to do any interventions.    Recovery time is another 6 hours lying flat and calm....then maybe if no interventions have been done we will be on our way home.     Fingers crossed (in prayer of course)    If any interventions need done Mommy will be staying over night and we will be on our way tomorrow am around 11 or so.          We are all sitting worrying, waiting, and praying.   Please join us at home.   HUGE HEART HUGS !!!   Lydia

And the roller coaster ride starts again

          The roller coaster ride of emotions and ups and downs is beginning full force again.   Tomorrow is Lilly's pre-op Heart cath.     They will determine if the Fontan is ok for her or if things do not look good determine if a heart transplant may be in her future.    We have only had to go to 6 month check ups and it has been a long time now (over a year and 5 months) since any surg.   We WERE happily less stressed.    It is time though for the next step!   Ugh did time fly!   Since her last Surgeries she is walking, running, talking, singing, and just a little ball of love and energy!   We are so grateful for the gift of life she has been given already.   This past weekend my husband's younger brother got married to a wonderful and beautiful lady who we adore.   We got to travel out of town overnight with Lilly and the other 4 of our children.  This was our first mini vacation in over 2 years!   We were thrilled to watch Lilly take over the dance floor.   She ran around and danced and was smiling from ear to ear.   She was telling everyone HI and trying to drag people onto the dance floor.    I was so proud of her, of us, of our family in that moment.   Most of the guest did not know about who she was and what she has been through, all they saw was a loving little girl having a great time.   Her brothers and sister watched her and danced with her and chased her :)   They all were loving life.    To go from a place of worry and fear to a peaceful acceptance and to overcome so much.... it just is so very moving to me.   
This past easter season I have done alot of thinking about God giving his only son.... to save us....the sinners... the ungrateful.    I have to say I am thankful for his sacrifice... but I could never do it (yes, I am only human)   even with all the problems LIlly has had I could not let go of her for anyone else.   My instinct is to fight and never stop fighting with her.    I will never give up on her.  I will not give her up.   I am selfish.  I would not do it for the greater good.   I love her too much.   I would trade her places any day.  I would gladly give up my life in place of hers.   I would do anything to take away the pain her little body endures. It is a wonder and gift that God has given us, that Jesus died for our sins.   I know He knows the pain of losing a Son.   I know He is with me.   I know He understands our fight because He gave everything to save us.   I believe He has plans for my daughter.   I know He does.   I know He is with her and loves her.   I know He is on our side.   I believe that I must relinquish control and all worry over to Him.   I will do my best.... and I know He will do the rest.    Please send some prayers our way:   pray that Lilly's heart cath goes well and they find only good things... pray that mommy and daddy are able to stay strong and keep faith in the Lord... pray that the doctors are guided to do what is best for Lilly, pray that she feels  little or no pain and continues to be the little fighter we know she is.   Pray for all the little children and their families who are going through similar things.    Pray that they find a cure or develop ways to help them.   Thanks for joining us on our journey. <3