Hope on the Horizon

The last week has been hard. The world lost yet another precious baby to CHD. Olivia Grace was Avelyn's neighbor who fought and overcame so many challenges during her 4.5 months on this earth. She could light up a room with a smile and did so frequently. She had the longest eyelashes and wavy ginger hair. She loved to kick and dance for her family and even did a few peepee dances for Avie.  

Her mother advocated for her with a tenacity like I've never seen before. Olivia was born into such unfair circumstances but she made the most of them. In her short life she touched thousands of hearts. After being next door to them for months Sean and I grew to love Olivia and her family. Her fight became our fight, and I know her momma and grand momma would do anything for Avelyn, just as I would've for Olivia. The loss of Olivia was and is felt acutely across the unit, just and those before her. In the five months we've been here, the unit has lost seven children. That's seven lives cut short and seven families torn apart. Each child lost is a tragedy keenly felt. It's awful. So awful.

Three weeks ago we were trying to prepare for our sweet Avelyn to be among that number. I use the word "prepare" so loosely. There's no way to prepare one's self for the loss of a child. How could you? While God has seen fit to continue to bless us with our little Avelyn, we have seen dark days. Days where Sean has literally had to pick me up out of the floor when my legs could no longer hold the weight of sorrow. Days when we discussed how we would memorialize our daughter when the time came. Days when hope was but a glimmer in the darkness. When we thought that glimmer was all but lost, it started to grow and she started to improve. I know Olivia has had something to do with it. As I told her momma, instead of resting behind the pearly gates, she went straight to work for her friends.

However, despite Avelyn's improvement over the last few weeks, we have no guarantee of ever seeing her grow into a strong young woman, go to kindergarten, see her first birthday or even ever hearing her voice again. Each night I pray for such things, but I am sure Olivia's momma did too. CHD is so very cruel.

I am not going into all of this for the heck of it. I just want to convey that our children are more than statistics. They are children first and foremost. Children- who've been stricken with the misfortune of being 1in 100. 

I can't remind the world enough that 1 in 100 babies are born with Congenital Heart Disease. And while most forms aren't as severe as Avelyn's or Olivia's, 1 in 4 born with CHD need some sort of surgical intervention to survive. 

If Avelyn was born 15 years ago, odds are she wouldn't still be here. The surgery to unify her MAPCAs was only first pioneered in the last 20 years. I owe my daughter's life to recent medical research, all of us heart parents do. I can't stress enough how valuable congenital heart research is. My daughter's survival, growth and development are all dependent upon ongoing scientific research. Please spread the awareness about the frequency and horrors of CHD. Please tell people of Avelyn's odyssey. Tell them of Olivia or Emma, or the countless other babies who have been lost to this disease. Spread awareness that with more research, more can be done to save these babies. Please look into the  http://www.childrensheartfoundation.org/ to learn more about CHD and donate if you can. Also look into joining "Team Avelyn" for the Nashville Congenital Heart Walk on Saturday June 4th. Every little bit donated helps and goes towards saving the lives of children who fighting legendary battles. http://events.congenitalheartwalk.org/site/TR?fr_id=1503&pg=entry

Avelyn Update:

Avelyn is making progress! It's slow progress, intermingled with setbacks but progress none the less. Her ventilator setting have been weaned over the last week and she seems to be tolerating it well. While her lungs are still not as efficient in gas exchange as a normal kiddo's lungs, she has made some great strides.

She is currently being weaned off a couple sedative drips so she will better tolerate extubation. Getting her tube out with the drips in place may be dangerous as she could get too sleepy. The withdrawals have been bad and difficult to watch. But at the same time, narcotic weans mean she is in a much better place than she was just a few weeks ago. That's what I have to keep telling myself anyway. Thinking of how far she has come, makes it easier to see her struggle with the weans. 

Her kidneys are still in rough shape. She doesn't pee much but she is still peeing some. The biggest disappointment recently has been the return of the chylothorax when she resumed full fat breastmilk. As of now it's still low volume output but it seems to be trending up slowly. I don't know. I guess it's a wait and see kind of thing as to when the chest tube can come out, and what the plan for full fat verses skimmed. The body cannot reabsorb the chylous output like it can blood or serous fluid. So if she continues to have the fatty leakage and her chest tube is pulled it will build up and collapse her lungs. That would be bad and she'd need another chest tube put in. That's not something I want to chance. As for now I am advocating leaving the chest tube in place, it's already been in for months anyway. I don't see the point in rushing into pulling it out.

So that's where she is and where we are. We upon the cusp of uncertainty and gaze upon a future that terrifies and excites us. Big days are ahead. Avelyn could regress or not tolerate the coming interventions at anytime. Or she could do well. We pray for the latter, and hope you will too. 

Best wishes and love to each of you. Thank you for all the love, support , thoughts and prayers sent to us and our dear Avelyn. 

She may be small and her heart may be frail, but she has the spirit of a warrior.

    This last photo is of my precious friend Laura and her beautiful Olivia Grace, just days before Olivia gained her wings. I will always love and miss you sweet Little Livie.