Wednesday, February 17, 2016

The Dementor's Kiss

I have started so many blog posts over the last day and a half that I ended up deleting. I just don't have any idea what to say. I have been encouraged to share Avelyn's journey-the good and the bad. I want to share what she is going through, what we're going through, and what CHD does to sweet babies.
But how do you explain the unexplainable? How do you describe the darkest hours of your life? I kept trying but couldn't seem to get the right words onto the page. I rambled on and on without ever conveying the darkness. Yesterday I gave up trying. I figured it would come to me later if I was meant to write it. 
Avelyn is sedated, so I guess it doesn't matter but I've been reading to her just in case she can hear me. I want her to know someone is here. Someone she recognizes is here. 
I've been reading the Harry Potter books to her throughout her hospitalization. Currently we're well into in the third: The Prisoner of Azkaban. If you've read it then you know all about the Dementors, the guards of the wizarding prison called Azkaban. While reading to her I found the words I was looking for. Granted they aren't mine, but they perfectly describe the emotions that have clung so tightly to me over the last day. 
According to J.K. Rowling, "Dementors are among the foulest creatures that walk this earth. They infest the darkest, filthiest places, they glory in decay and despair, they drain peace, hope, and happiness out of the air around them... Get too near a Dementor and every good feeling, every happy memory will be sucked out of you. If it can, the Dementor will feed on you long enough to reduce you to something like itself... soulless and evil. You will be left with nothing but the worst experiences of your life."

Avelyn update: Avelyn was in the OR from 0830 am until past midnight. Her actual surgery went as planned. Dr. Bichell was able to find her collateral vessels or MAPCAs and bring them into her pulmonary artery. He repaired the tricuspid valve, inserted the pulmonary outflow tract conduit, and repaired the VSD- although he left a small hole there as planned. Before they finished the surgery, they did an ultrasound of the work which showed microbleeds. That prompted them to go back on the heart lung machine so Dr.Bichell could add more stitches to try and curb the bleeding. The second time she came off the heart lung machine she seemed to do better. However she started bleeding acutely not long after. At that point (which we only just learned today) she arrested and needed chest compressions until they could get the heart lung machine reconnected for the third time. She was then monitored closely for hours, and ultimately needed to be placed on ecmo to allow her heart time to rest. Through the night and morning they couldn't control the bleeding and so she had to get blood, platelets and plasma multiple times. At one point opening her back up "for exploration" was discussed. Instead her heprin, which keeps clots from forming in the machine, was stopped for 5 hours. In this time she started to clot off the bleeds in her body. But now she is at risk for clots being thrown from the machine. She is now being checked for brain bleeds and appropriate neurological activity due to the all the risks she was exposed to over the last day. So far nothing new has been found. Currently the team is still chasing her bleeding, although it's "under-control". Her blood pressures also still seem labile. Her chest is open to allow her body room to swell without putting pressure on her heart. This puts her at higher risk for infection. Best case scenario she'll be on ecmo into the weekend and have her chest wound closed early next week. We haven't a clue when she may be extubated. I can't wait to hear her little voice again or see her pretty blue eyes. 
The last 36 hours has been too much to take. We've faced the high likelihood of our daughter's death. We've felt that as a true possibility-again. It's been awful, more awful than I could've ever imagined. 
Below is a picture of Avelyn right now. I don't necessarily want to share it because to us, this isn't her. However this photo shows the ugliness of congenital heart disease. It shows what my baby has to go through if she is to have a life. It shows her pain and struggle. It shows her strength. She will never be a normal kid. She's destined for more than that. She's an inspiration and the wonder of my life. As I have said before, she truly couldn't be loved more.


  1. You, Sean & Avie are my every thought. I wish I could not say this -but you are. Every moment I'm not there with you, I feel guilt and anger. Guilt because I left you there to fend for yourselves. Anger because life goes on. It doesn't stop so that I can try to do something little as it may be to be of help to you. Why can't time just stand still for a day or two, so that you can catch a breath, a break from this hell your enduring? I'm so very sorry that I had to leave you this evening. I'll be a wreck until I'm with you again. I know that you are now accustomed to being alone with Sean, but I never feel whole unless Our Family is together. Please forgive me for not preparing this life for emergencies and tragedies such as this. I feel so inept and helpless, and all I want to do is hold my girl just like you do. We will one day soon. I have to believe that God loves Avie so much that He will bring her out of this for something awe inspiring. But until that moment, please know that when I read your beautiful words I cry uncontrollably. For you were never meant to feel pain as awful as this...not in my Mothers Handbook. It's unconscionable to witness what the 3 of you are enduring. If I could take it from you, I surely would. You are what every mother dreams of being-yet I know you would've been so without this torturous trial. Hang on baby girl. God promises to deliver His Children, and the light is just around the bend. Saying I love you is an understatement...but I do my precious Somer. With every cell of my being I love you. Kisses to the jelly beans ...😭❤️🙏

  2. I can't even begin to imagine what Avie, you, Sean, and your family are going through. I continue to pray for all of you.

  3. A million words could not express the love, concerns and awe I have for Avelyn. For you. For Sean. Her very existence in all our lives has shown me that I only thought I knew the definition of strength. She is magnificent.