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!


  1. Absolutely precious. Every picture is just so sweet. Love the painted fingernails. Yes, we remember. We remember all those posts about what Ella was going through. I am sure when she was sick and vomiting, coughing, etc. that she might have been frightened. But she is a fighter. Our prayers are with all of you. Thank you so much for the pictures. We love them.

  2. Ella--I heard you had a GREAT 2nd birthday and it looks like you did:) I love your colorful cake. It was very unique. I love you VERY much so get some nanny hugs from Mom and Dad. We'll continue to pray thru your 3rd birthday and I know it will be just as GREAT:)

  3. She is absolutely BEAUTIFUL!!! LOVE the picture her Ella and Emma together!!!! Annabelle is fighting a cold right now too, but it's unfortunately not her first one!

    Seriously, these were such sweet pictures! LOVE THEM!

  4. What a cutie! She truly is a miracle....God bless her and her wonderful parents!

  5. Emma's Nana Jana writes:

    The gift of God's Son is the greatest gift any of us will ever be offered, but next to that, the second greatest gift is the miracle of a baby entering into this world!

    Our two heart babies, Ella and Emma, have been miracles beyond expectation, as Jon and Amy (Ella's parents)and Scott and Sarah (Emma's parents) have professed over and over again in their blogs!

    For first-time parents to welcome with open arms and hearts of love these two little girls - knowing that each of them had a 20% or less chance of survival - is truly overwhelming ... and yet I believe it is God's tender mercy and these four young parents' limitless love that have kept Ella and Emma alive.

    If "to love and be loved" results in a joy-filled life, then Ella and Emma must be among the most joyful children on earth, for they have been loved by their family, friends, and thousands of "never-met" Prayer Warriors who pray without ceasing for these two Lil Heart Warriors and their parents.

    Thank you, Jon and Amy and Scott and Sarah, for sharing these two little girls and their amazing journeys from your blogs. I hope you four realize by now that your sharing has gifted the world by demonstrating to all of us the power of prayer and its ability to unite anonymous strangers in a fight based on love...on love and on two tiny half-formed hearts.

    I am Emma's Nana Jana, and not long ago, someone asked me, "Just when will Emma ever be completely well?" I'm sure that Ella's and Emma's families agree that the answer to this question has been a difficult concept to grasp. I turned to the questioner and replied, "She won't ever be completely well. Her life came with no guarantees of time, but you know what? So did yours and mine!"

    Then I said to my startled companion, "Our heart baby has taught us the value of TODAY." Or, as AMY wrote about Ella, "She has taught us that EVERY DAY is a gift!"

    Through the awful surgeries, hospitalizations, medications, oxygen monitoring, near-death experiences, isolation, loneliness, and amazing sacrifice - through all these and more than most parents could ever imagine, Jon and Amy and Scott and Sarah have loved Ella and Emma every single second. The result of all that love is two amazing little heart sisters, Ella and Emma! And though each little girl was born with only half a heart, they continue to grow and learn ... and to teach us all that TODAY is a gift!

    I am so glad that Ella and Emma got to meet, and I send Hugs to these four parents and their precious Heart Daughters. May God bless them and lead them on this uncharted path they all travel.

    <3 from Emma's Nana Jana

  6. Great pictures. I'm sure Ella will be just fine, but I'll continue to keep her in my prayers.

  7. Precious picture of Ella and Emma. Hope they will be friends forever. Having someone you know with similar issues, will help them along. They both look so happy.


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