Friday, October 28, 2011

Please pray for Ella's FRIEND Emma!!

Emma had a cath surgery a few days ago and has since then been having complications. This is the update from Emma's mommy Sarah...

"Emma took a turn for the worst yesterday afternoon/evening. She had to be intubated because of her acidotic blood gases. The problem that we then had was that none of the traditional ventilators were working so we had to put her on an oscillating vent. The challenge then was to correct her acidotic blood gases. It took all through the night and into this morning to see some improvement. During all of this, her heart took a hit and is not functioning like it should. Things are very critical right now but Emma is still fighting so we are too! (they have her sedated and paralyzed). Please pray for our princess as she fights this uphill battle."... Since then this is what Sarah has said..."Emma is stable but not really making much progress. Her heart is not improving and that has us in a bad spot. She is still fighting but her body is really taking a toll. Please keep praying!"  

This family is VERY SPECIAL to us. Emma is the ONLY little girl that we know with Ella's same two conditions. Sarah was an answer to my prayers when she wrote to me when Ella was in the hospital. She told me that she was about 2 months behind me in her pregnancy with a little girl named Emma that had been diagnosed with HLHS/RAS. I sat there in shock because the doctors had told us just how rare this combination was. I felt like someone finally would know how I was feeling! I was sad that they had that diagnosis, but I was grateful we would be able to walk the journey together. After Ella had been born and had done so well, we had GREAT hopes that Emma would sail through the surgeries as well. Emma has had a much more challenging path then Ella, for some reason. It certainly doesn't seem fair. We pray for Emma daily, we feel connected to her, we love her. Please Please pray for Emma right now, she is fighting hard for her life and we are grateful that she is stable, but we know she has a lot of healing that needs to take place. Thank you for praying!!

Saturday, October 15, 2011

Life for Ella

Life is GREAT! In fact I had to sit for a few seconds trying to think what word to use to describe it and well it is very GREAT! I think that the only thing that would make me happier would be hearing the doctors say "I don't know how this happened, but Ella has a WHOLE heart!?!?!) Oh how I long to hear those words. Wouldn't that be incredible?  I prayed often before Ella was born that God would completely heal her heart and make it whole so that she wouldn't have to go through any surgeries. I still find myself from time to time praying for God to do what would only take a thought for Him. I don't know why He doesn't heal these sweet babies that I see struggle everyday, but we know that God is good and that He is just. We know that He has a plan far greater than we could ever dream or hope! Ella's daily life is as close to normal as I think we could possibly be at this point in her life! We have to be EXTREMELY cautious with her when we take her out to keep her healthy, but our life at home is very normal! She takes 2 meds in the morning and 3 at night, she sleeps 11 hours a night (unless she is teething, which she has just cut 3 molars, and 2 or 3 more...ouch!) she also takes 2 naps a day, usually 1 in the morning for 2-3 hours and 1 in the late after noon around 1-2 hours! So I can't really complain! Ella says too many words to list them, she knows lot's of animal sounds, she is always giving mommy and daddy kisses, and she loves to be "pretty"! She has had a lot of mile stones lately, she has given up the bottle for good, she is eating lot's of table foods, she has her new big girl car seat, and she is all but walking! She took her first unassisted steps 2 months ago, but now she just isn't too interested... and well that's just fine with me :) Too much too fast anyway. So as we are entering fall, everyone is so excited about thanksgiving, Christmas, and the cold weather... For a heart family it is the scariest time of the year. It is RSV, flu, cold...etc season. It is the season where you miss all your family and friends. I'm not trying to sound doom and gloom here, because we have a swell time just the three of us, but it is just something that people don't think about. You could get sick and feel yucky, my child could get sick and die. With Ella doing as well as she has so far, we began to wonder if Ella would handle sickness well, but so far she hasn't gotten really sick yet and just with a VERY minor ear infection her oxygen dropped into the mid 70's... she is usually around 83%  If she gets below 75% and stays there, she has to be placed on oxygen, and that is NO FUN! So if her numbers drop that much without so much as a runny nose I don't even want to think about the numbers if she gets all stopped up. Also because of her heart, she can't take any kind of decongestants, so we would have a rough go at it if she got sick. Also when she has meds that her life depends on, if she has vomiting or diarrhea that is NOT GOOD. Also getting dehydrated is one of the worst things for a heart baby and usually if you get sick you get dehydrated. She would have to be admitted to the hospital for IV meds and fluids. So obviously it is crucial that she remain healthy. With that in mind, I will take this as an opportunity to plead with you to get your FLU SHOT! It could save Ella's life!!! We hope this is the last holiday season that is going to be so secluded, but we will just have to see. They say that after the age of two kids are not near as at risk if they get sick, however until Ella has her Fontan (4th open heart surgery), whenever that may be, she will have to remain in our protective bubble. So for now we will be aware of the risks that this season will bring, pray HARD for God's protection, and do our VERY best to keep our sunshine happy and healthy! Some more exciting news is that our little family of 3 will be taking our FIRST FAMILY VACATION!!! I am so excited and scared like crazy! We got the all clear from the cardiologist, and we are going to have the information to the nearest hospital that could care for Ella. We are going to Florida! It will be our first time to Florida so we are excited!! We also celebrated Jon's 27th birthday on the 14th!! He is just the best husband/daddy in the whole world! So that's about it, that catches you up! Thank you for the continued prayers, Ella is doing so well but she is so much sicker then people seem to realize because she looks so healthy. Please remember to pray for her and all of her special heart friends!! As we realize that the next and hopefully last open heart surgery is rapidly approaching, reality is starting to sink in, it is scary. We are just cherishing the moments and never taking even one breath for granted.

Playing with some pumpkins!

 Such a little dainty thing, playing with daddy's hat! Her color is certainly more blue then it used to be... just signs that her surgery is coming near. :(

 Ella's first ride in her big girl car seat!

 Ella loved the ducks and the fountains!