Monday, December 21, 2015

Preparing for the Unpreparable

I can't believe my baby is four days old. These four days have flown by in the blink of an eye and yet I feel I have known Avelyn for a lifetime. She is doing her best to grow and be strong but her little heart seems to be holding her back. Her surgery was switched back and forth between the 21st and 22nd four times, due to scheduling conflicts and a more urgent case. It's been hard dealing with the back and forth but I am glad for the extra day of growth and relaxation for Avelyn before her surgery.
She has been doing her best to rest, which is not as easy as one would think due to life in the NICU. There's a lot of poking and prodding of these babies- all necessary to provide safe care and treatment but that doesn't make it much easier to handle.
One thing I may not have mentioned yet is how she over heats quite easily due to medicine she is taking (prostaglandins) to keep her ductus arterious open. Holding/snuggling her-which she loves (especially her daddy's snuggles)- often causes her to run too hot which causes her breathing to accelerate. She has been having trouble with tacynpea (breathing too fast) the last few days already. 
Yesterday they discontinued her feedings for a while for fear she had an infection starting in her intestines due to shunting of blood away from the area. She wasn't happy about it, in fact she was quite upset. She wore herself out telling us just how upset. It was heart wrenching. Not long after all of her labs and tests came back negative and her feedings were restarted at half the volume. While this helped she still wasn't to happy. It wasn't until late this morning that she was able to eat her regular 25 ml every 3 hours (which is still not much but all little CHD kids can handle safely). She is going to struggle with being NPO past midnight tonight in preparation for surgery.
Sean and I are still trying to wrap our heads around how wonderful and beautiful she is let alone what will happen tomorrow. Leaving her here at the hospital when I discharged yesterday was the hardest thing I have ever done in my life. I know it's necessary and what's best for her but no mother should have to leave the maternity unit without her baby. It's torture and yet I have it so much better than many moms- including my own mother who experienced the loss of my oldest sister (Avelyn Marie's namesake) at birth. My love goes out to every mother and father who has ever felt such a feeling. 
If any experience could top leaving her here, it's handing her over to be cut in the morning. Again I know it's beat and she won't remember it- but I can't help being terrified. She's so small. Her heart is the size of a walnut and her vessels are mere millimeters. I completely trust her surgeon and am confident all will be well but I am terrified for and angry any baby should have to endure such. Infants are pure innocence and magic. The are so resilient and strong but yet so fragile and weak. The thought of any baby experiencing pain, strife, and struggle has always been hard for me to bear. The thought of my child, my one and only baby girl-who I wish to protect from any harm or pain, going through such a complex and risky surgery is nearly unbearable. And yet we must put her through this pain and struggle to keep her. It's a situation that brings about feelings too complex for words. 
In this Sean and I are helpless. All we can do is hope and pray for the best and that we've made the right decision for her future.
We appreciate the grace and blessing already bestowed upon us. Tomorrow may be too hectic and I may be too emotional to update the blog but to promise to post as soon as I can. Until then please keep our sweet girl in your thoughts and prayers as always. 


  1. My heart goes out to you somer! Aiden had part of his intestines removed at 27 hrs old, and for the life of me I cannot remember the 8 hours he was in surgery! But he made it and is strong and healthy! Avie may seem fragile now, but when she's a strong child she will thank you for your heart ache and sacrifice! Positive thoughts for you and yours all day tomorrow!!

  2. I requested prayer for your sweet girl and you all at church on Sunday. I continue to fervidly lift you and your family up in prayers tonight and will continue to do so. I'll keep watching for updates.