Saturday, March 5, 2016


I'll begin with saying that Avelyn is still maintaining. Her kidney function hasn't improved but her lungs have a little bit. She is struggling with being weaned off opiates and benzos. For now they have halted the weans because she has been so uncomfortable and her temperature has been too elevated. She needed a cooling blanket to bring her core temperature down today. We don't want withdrawal symptoms to keep her out of the OR next week. They might be able to wean a bit more tomorrow but only if she seems comfortable, and honestly we'll probably request that they leave her be.
Sean has been staying with her all the time since I have been sick, not that he wasn't there most of the time before. He just rarely leaves now since I can't be there. I call a lot to check on her during the night and he gets up to go visit her from the sleep rooms. He's such a good dad and I am so thankful for him. Still though, I can't wait to be back with her. 
On another note, this blog reached 30k readers yesterday. That's mind boggling to me. I initially started it to update close friends and family- I never thought of reaching more than that. Why would I? I never conceived so much support and concern for our baby. We have been so blessed and humbled. People we love and complete strangers alike have done and said wonderful things. I can't begin to thank you all enough. Without your love and support I don't know where we would be. I don't know if I would have been able to keep up with this blog either. Sometimes it's a welcomed distraction, while in the thick of things it can be laborious. However after a recent conversation with Sean I am so glad I have a real time record of our experience.
He very causally asked me the other day how I was going to save the posts to ensure Avelyn would one day have access to them. I was dumbfounded. I have seriously never considered that our baby girl would one day read these posts. It seems so logical that she would. I mean this blog would be more informative than anything but her actual medical records. The thought of her reading all that I have written hit me like a ton of bricks though. What will she think? Will she comprehend how much she has always been loved and how sorry we are for all she's been put through. I hope so.
I hope she reads these posts with an open yet reflective mindset. Maybe she'll understand us a bit better after reading  it. I hope she finds strength within herself. I hope she reads how she triumphed through these circumstances and feels motivated to live fully and freely.
I was talking to another heart mom tonight about how we owe it to our kids to not limit them and to live completely in the moment. If our babies deserve anything after trekking through hell its to be allowed to live fully. I look forward to the Avelyn's robust rowdy days when I will worry about her little heart but never let on. She will be allowed to live and grow as she will. She deserves to. She will play, she will climb, and we will live fully. We will not sit at home in fear. Avelyn may have CHD but CHD will not have Avelyn. She will not be defined by this disease and we will not allow her to live in fear. She will see and experience the world. 
I hope she feels we have kept this promise . I hope she realizes how strong and magnificent she is. 
Until then I guess I'll just keep reminding her everyday. Not that I mind to at all ;) 
I love and adore you more than anything my WONDEROUS Avelyn Marie. I always will.


  1. What a beautiful story she will have to read. Take these pages and put them in book form along with pics. It's a great testament to your love for her.

  2. She will read through these and say "I get my strength, faith and how much I love others from my parents". You will already know by then that she loves you as much as you love her! I keep up with all of you though your pictures and post. Sometimes it brings tears of both kinds, tears for better days and tears for the days that are not so good. You come from some special parents and I can only imagine how proud they are of you and your strength through all of this. I bet I can same the same about Sean. Thoughts and prayers are all I can do and you will have those.

  3. I would say that if she is anything like we suspect, she will read these posts and tuck them away in her scarred little heart and know that she is the most important person in your life. She will be determined to make a difference in this world, and that is all I will ever ask if her. Just make your mark Avie. Just as your parents have done. Do your best to educate others on this horrific disease but never let it deter you from being who God created you to be. She will be the strongest willed little female ever (next to you Somer) and that my girl is really saying something ❤️ I watched her little eyes as she struggled through her respiratory tests yesterday and saw her strength. She looked at me exhausted as if to say 'there I did it now leave me alone, I'm tired' and drifted right to sleep. I just rubbed that sweet little head as the tears came and wondered how you do it-day in & day're a marvel Somer, but I always knew that. And now she is as well and we are all so wonderfully blessed ❤️

  4. She is so lucky to be your daughter