Tuesday, July 8, 2014

A little catching up and a prayer request.

I'm so sorry I have not been as consistent in my updates lately. Our computer has not been working well and that makes it difficult to post updates and pictures.

Ella is doing well, we are in awe of her strength and the quality of life she is having despite her heart. Jon and I are enjoying this phase of life with her as we know it will most likely be "the best years of her life". We know things can go down hill quickly when her heart or other organs start to wear out. Ella will be 4 in a month and I can't believe just how fast it's going by! Just this last month I got news of a 20 year old girl with HLHS who had passed away suddenly. It hit me hard. Ella was napping when I saw the news and so I was able to cry about all that we are facing, to pray for this girl's family, to have a talk with God about my fears, about the pain of the reality of the death of my little girl in my face all the time. Those break downs aren't as often as they used to be, but when they come, they hurt so bad. I had to go into her room and snuggle her while she slept just to feel her breathing. It's so scary.

This summer has been pretty mild temperature wise for us and for that I'm thankful. Ella doesn't do great in the heat, so with the milder temps she has been able to get out a little more. She got to go to her first ball game! Some of her little friends from our small group are on a tee ball team and she got to go watch one of their games! She also got to swim in a big in ground pool for the first time at a Sunday school cookout! She is getting more and more opportunities to play with other kids if they are healthy and even had a play date here with one of her little heart friends and her friend's little sister! She got to go to her first wedding and now keeps asking if she can get married to daddy, kiss him on the lips and get pink flowers! She also got to ride in a basket at target for the first time (oh the germs, ewww! But we did wipe it down with antibacterial wipe first)! I never tire of seeing her do these new things! Each time we get to see her do something new I just feel an overwhelming thankfulness that she is here with us, still fighting, still thriving, still smiling! This last Sunday, we had a great time as a family playing on her fun blow up slide/pool and as Jon was throwing her up the bouncy slide and she was laughing with a huge smile saying "Again! Again!" My eyes welled up with tears of pure thankfulness. Humbled by the Lord's protection over her and the blessing of her life. Just seeing her SO happy, there are no words. Thinking back to the beginning, those early days of wandering if I'd even ever get to see her open her eyes so I could tell her that I loved her. Now she tells me that she "loves me MOST" and that "You'll be in my heart mom" a million times a day and I get to tell her two million times a day how much she means to me... but I still can't seem to even scratch the surface about how I really feel about her. Words aren't enough.

Over the 4th we went out to eat and then to my parent's house for a little fun. It always causes some anxiety on my part to bring her out in public, but she loves it and that gives me the strength to keep going. She has fought every bit as hard as we have and then some and she has a light to bring to this world full of pain and hurting people. She smiles and talks to anyone that will listen and watching her see new things for the first time is indescribable! Her eyes light up and she points to everything exclaiming "wow, cool, fun, beautiful, oh my gosh, I love it!" She has a zeal for life that is intoxicating. Just being around her is enough to make anything seem just a little bit brighter.
While we were out at my parents Ella got to do her first sparkler she touched the end after the flame went out and it was still hot so she got a tiny blister on her thumb :( she also got stung by something (we think) on the back of her leg but no tears or even an "ouch" came from her, just a pause and an "it itches" as she rubbed it a little. She is so tough! After that we headed back to our little town to watch the firework show! We actually watched two big shows this year, one a few days before the 4th and one on the 4th! 

Last night Jon took Ella on a little date, they do that from time to time and Ella LOVES it! I mean she gets SO excited!! It's always hard for me to see them go, the house is far too quiet when she's not here, but knowing what a treasure that time is to both of them is enough to get me through the silence. Jon may love it even more then Ella if that's possible, it is so adorable how much they love each other! They came back with a toy of course ;) When she came home I noticed that she was a little more out of breath then I like and was a little dusky in her color. She has been dusky off and on here lately, but I finally decided to check her oxygen level and heart rate. The oxygen was a little low and heart rate was pretty high. This morning I saw the same symptoms so I checked her again and again her heart rate was too high and her oxygen was even lower then last night. I called her cardiologist's office and let them know about the situation. We have also seen a few small things that can be a concern that her liver may be having some problems (that has not even been discussed with her doctor yet, just something we are keeping an eye on, hopefully it is nothing.) So we are a little nervous about those things. We would appreciate your prayers for her doctors and for us as we try to discern what is going on and also for her to be back to a safe a steady baseline soon! Thank you all for continuing to pray for our family!