Tuesday, February 23, 2016

What a Week..

Avelyn has had a relatively quiet last couple days, compared to the last week anyway. Yesterday marked a week out from surgery. At this exact time last week, Sean and I thought we were losing her. We were waiting anxiously in the surgery waiting room for any news or update. We knew she was dying and that her surgeon was doing all he could. We were so numb, so broken. It was sickening-bad enough that I've lived it over in my dreams since. It wasn't until after 01:00 am that he came out and told us she needed to be placed on ecmo. She was bleeding too much and her little heart just couldn't keep up. At that point we were just thankful to hear she was alive. 
Since then she has had some rough times. She has continued to have bleeding issues, mainly due to extent of the operation (remember it was actually three procedures at once) but also due to still needing heparin to keep her newly reworked vessels patent. She has also had pain and discomfort, her pain medication has had to adjusted frequently. Her chest remains open under a thin transparent antimicrobial film. She is still too swollen with fluid to close it. If her surgeon closes it too soon it will place pressure on her heart, which could lead to permanent damage. 
She has been diureasing fairly well though. Hopefully her chest can be closed in a day or two. That'll be a good day. Her lungs are still pretty sick but are making progress. Her peak pressures are not as high, this means the vent doesn't have to use as much force to ventilate. She is requiring a lesser percentage of oxygen than she was a few days ago. Currently she is at 40%, Saturday it was 60%. Room air is 21%. After her chest is closed and she recovers a bit she'll have to get down to room air percentages before extubation. 
She is still having some issues with lower lung lobe expansion/collapse. The providers this is due to a combo of atelectasis and fluid pushing in on the lungs from the thoracic cavity. It's getting better though. The respiratory therapists are also still suctioning bloody secretions from her lungs. It's likely from the time she was in surgery and on ecmo. For a couple days her bleeding was just out of control.
She had her last scheduled head ultrasound this morning. It came back unchanged. She still has a small subdural blood collection in her occipital lobe area but it hasn't grown and should reabsorb as time goes on. 
That's about all the news I have for now. It's late and sleep doesn't come easy these days. Thank you all for the well wishes, prayers, support and concern. I don't know if we would have survived these last eleven weeks without it. 
Avelyn has touched so many people; it's so humbling. I am extremely honored to be her mom. I cannot wait to learn what parenthood outside of these walls entails. I am sure it won't come easy, knowing us it'll be an adventure. 
Sean and I are so very blessed. We still have our girl and she is recovering. After the week we've been through-that's really all we care about.
Thanks again for everything. 
Much love to each of you. 


  1. She is a little fighter for sure, and adorable. Bless you all. Thank you for the post and photos.

  2. She is a little fighter for sure, and adorable. Bless you all. Thank you for the post and photos.

  3. So good to hear She is doing better I know She still has a long recovery. We will continue to pray for Y'all. Love Y'all very much!

  4. The posts & pictures are just Beautiful Somer. I can't stop smiling and that feels so much better than can't stop crying...she's such a Beautiful Blessing and I too, can't wait to see your family outside the hospital walls. It's an adventure that I anxiously await ❤️😊🙏