Monday, August 27, 2012

Ella's second birthday pics! ... Finally!

We had such a wonderful day celebrating Ella's life! It was a small intimate party where Ella was surrounded by people who love and care about her, people who have prayed hard for her, and we loved sharing the day with them!

We had one very special guest, Ella's dear heart friend, Emma! We love Emma and her family, Emma and Ella had a very similar diagnosis in the womb, and with the conditions that they share being so rare it was an instant connection. We have been honored to follow Emma's journey as it started just 2 months after Ella's. Ella and Emma have the same surgeon, and we have been in the hospital in adjacent ICU rooms, we shared the Ronald McDonald house too, life just brought us together! Emma has had more complications then anyone should have to face, but she has continued to fight and she is one very tough little girl! We just love that Ella and Emma got to meet face to face for the first time! Though they have had very different paths since they were born, they are both without doubt miracles!

One of my best friends made Ella's beautiful cake! She is so talented and I was so blessed that she was willing to do this for us! It was super yummy too! (Thanks Lyd!)

We are so thankful for all of you who have prayed with us throughout her life and we are asking that you continue your prayers as we enter an new phase with Ella, now that she is 2 it is very important that her immune system builds so that she will be able to have as healthy of a future as possible! Including fighting infection and sickness during her next surgery and hospital stay. This is hard on us as you can imagine to change our mind set. It has been "she can't get sick" for so long that now trying to treat her more normal (not even close to healthy heart normal, but more normal then before) is a huge change for us! Really though, the whole purpose of keeping her sheltered so far was to save her life, literally, and now she needs her immune system to be strong to save her life so even though the approach will be different, the goal is the same... do what's best for Ella and keep her alive and healthy!

That being said we have hit a big milestone, Ella is currently fighting off her first virus. She has been struggling since Thursday night. She has had fever, runny nose, coughing, sneezing, some vomiting due to drainage, and it has been hard on us all. She has done remarkable considering never having been sick before. Her sats are holding steady for the most part (although about 5-10 points less then her usual). Overall she is ROCKING it and we are so proud of her! I was so dreading this first sickness, and even though it isn't over, and it is making for some sleepless nights full of coughing, it has been reassuring that she CAN do this! That she is STRONG despite having half of a mended heart and severely sick lungs. Right now she needs prayers for this nasty cough to subside and her oxygen to stay up (it's borderline for okay). We need prayers to continue to let her fight and not to be too afraid of the future!

Thank you all for your continued support and prayers as we walk this journey and as our sunshine pioneers the way for those to come!

As you enjoy the pics from her 2nd birthday remember how BIG our God is! Remember that Ella had only a 20% chance to live, remember that her first open heart surgery failed and they did an experimental surgery on her they had never done before, remember that we had to go through the transplant application process but God healed her enough to handle the surgery again. Remember that we almost lost her the night after her second open heart surgery, Remember that she has faced 3 open heart surgeries and 2 cath surgeries, remember that she is continuing to beat the odds and fight! Remember that everyday is a GIFT!

Thursday, August 9, 2012

Happy 2nd Birthday Ella Dawn!

Sweet Sunshine,
Where has the time gone? You are such a beautiful blessing to me! Life with you is so full of Joy! You make everyday better with the love you share and the sweetness that pours out of your heart! Since the very beginning of your life, it was evident that you were especially strong. You survived being in my womb with little to no nourishment for several days. Though you only have half of a heart, it was strong enough to show up at only 5 weeks! You have fought and persevered through life and I know you will continue to face life with that same drive! You always inspire me to be a better person, to fight for my own life the way you fight for yours! I never knew someone could love someone this much, but you bring out the very best in me! Your life has brought joy to so many, if only you knew how very special you are! Lately you have been so grown up. You pray so many times a day I couldn't begin to count them, you say "thank you" and "please" for everything even when we give you candy for going pee pee in the potty you pray first before you will even take it, then you say "thank you mommy!" and put it in your mouth. You pray and thank Jesus for your heart meds that you take twice a day, you thank Him for every meal. You thank Him for your "scar". You thank Him for all your snacks. You pray that you don't get "sick". You pray for your heart friends. You sing twinkle twinkle little star, you are my sunshine, itsy bitsy spider, Jesus loves me, beautiful, and sooo many more. I love it when you sing beautiful and you are my sunshine to me, it makes my day, I used to sing You are my sunshine to you all the time when I was pregnant!! You love to "hold you" and "nuggle nuggle" You love reading books, and you have lots of them, but out of ALL your books you always chose one of your books about Jesus. You have 3 or 4 books about Jesus and you chose them over the others every single time. We tease all the time about you being an angle here on earth, sometimes I really wonder how we are so blessed with you!! You potty trained in 2 1/2 days and have only had a few accidents since then (still working on when we go out in public!) You love swimming and you are so brave! I love that you are so adventuress and independent! You are the PERFECT baby for me! I needed you to be independent to help me let go, and I needed you to be happy to  brighten my days, I needed you to be adventuress to stretch me. It has been hard having to keep you home through all the holidays the last two years, but you don't seem to mind being home bound and I'm okay with it too. God made me to enjoy home and to be germ conscious (I always got made fun of both of these things growing up) So I guess you and I are a great pair! You look so much like your daddy to me, sometimes I see hints of me in you and I see my cousins and your cousins in you often! Your hair is finally starting to get a little length to play with, and it is getting a little lighter. You had dark brown hair when you were born, then it all fell out and came back dark... it just keeps getting lighter. Your eyes are just stunning, they sparkle with life! I love that they are different colors, you are so gorgeous!! You still like to play with my necklace that I got when you were in the hospital and I have worn it almost every day since. When we were told that you only had a 20% chance to live, I was so scared, today was FULL of "love mommmmmy"s and "mooore kisses!" Snuggles, smiles, and hugs! Life is so sweet! Everyday with you is a gift that I treasure, you mean more to me then any words could ever say. I love everything about you! I am so proud of you, and I hope that as you grow this next year that you will keep that same sweetness and joy with you! You are learning faster then I have ever seen anyone learn, and this next year you will grow and change so much, I am SO honored to be your mommy and I am so blessed by your life! I love you forever and like you for always! Happy 2nd Birthday my beautiful daughter, my sunshine!

We would love if you would leave a birthday wish for Ella! I saw another heart mom had people that read the blog leave a comment for her daughter so that she can share it with her when she grows up, I would LOVE to have them to share with Ella when she grows up!! Thank you all for sharing this special day with us in spirit and thank you for your prayers!

Thursday, August 2, 2012

brag post :)

Just wanted to stop by to brag on my little person a bit!! I'm just bursting at the seems with love for her!!! Yesterday while preparing her birthday banner she walked up and proclaimed "i" just as I placed the letter "i" on the sign. I said "Jon did you see that??? Does she know how to recognize letters??" "I don't know, I mean I have showed her some." "So have I, but I had know idea that she knew them!!!" Jon decided to test her keep in mind she was even reading the sign upside down!!! Jon said "Ella can you find the "B"? " Ella pointed at the "B" and proclaimed "B!" We were shocked!! This went on from letter to letter where she was extremely accurate on most of them!!!! Ummmmm wow, apparently she is a genius.

The way she soaks up things is amazing! Today she has just been so cute! She loves to cheer on the USA in any event, but her favorites are the swimming and volleyball. She will randomly start to say "go go go, yes!" including clinched fists! She says "go USA go USA!". She was sitting beside me this morning and she was holding my hand and she wiggled my pinky around and said "pinky!" then she wiggled my thumb and said "thumb!" then she wiggled my fingers and said "fingers!" She can count, she knows her colors, she knows several scriptures, she knows animals and the sounds they make, she knows shapes, she knows how to match two pictures that look the same, she asks nicely when she wants something (most of the time) , she knows how to use my iPhone almost as well as I do, She is finally eating lots of solids and is dong very well, she still has never tried to get out of her crib or her big girl bed once we tell her to stay, She loves fruits and vegetables, everything we teach her she learns at record pace! Jon and I often refer to her as an angel on earth as she just seems too perfect to be a toddler, not that she doesn't have "moments", but they are usually very short lived!

She is potty trained and it only took about 2 1/2 days... AMAZING, she still has the occasional accident (maybe once a week) but I can't complain! She even keeps her pull up dry during nap! :) She is full of kisses and I LOVE it! Her random acts of love toward me and the constant encouraging words from her lets me know that that is what she is feeling and hearing from us, and I am so humbled that God is giving me this incredible opportunity to be apart of such a wonderful little girl's life!

She is so into singing right now! She will sing and sing and sing, using anything for a microphone and being the music/singing person that I am, I love it! This is a youtube video of her singing "You are my Sunshine"

Currently she is in full control of my heart strings as she randomly exclaims "I love Mommy!" as she looks right in my eyes followed by her gorgeous smile! I make a huge deal over it every.single.time. Pretty sure that's why she keeps doing it ;) Butttt it is fabulous non the less, and for those of you that don't know me, my being overly excited over something isn't hard. :) When she does that I just melt into a puddle, so many times I have felt like maybe she wouldn't love me because of all she has to go through, The shots, the medications, the hospital stays, the recoveries, the restrictions, the cautions, the lack of bonding time when I couldn't be with her in the hospital... But she does love me, and that my friends is the BEST feeling in the WHOLE WORLD!!!! The whole pregnancy (that 2 years later I still haven't recovered from) The stress and concern that has filled our hearts and minds everyday since our first scare and 5 weeks pregnant, every sacrifice of family and friends, holidays, parties, outings of any kind really. ALL of it is Worth it. Life is so good and God is so faithful.

Today is 1 week from our miracles 2nd Birthday! I can't believe how far she has come from her "20% chance to live" diagnosis! What an amazing life we get to live!!! "This is the day that the Lord has made I will rejoice and be glad in it!" Psalm 118:24