When the World Stands Still

Avelyn has not been improving as we hoped. This morning she started to bleed a considerable amount again. So much so that the surgeon had to open her back up for "exploration" in her room. He found some of the areas that were bleeding and added more stitches. As far as we've been told that's improved things for now. However due to all the bleeding she had to receive a lot more blood products today. The additional fluid and blood products have made her lungs sicker. She had a lot of fluid and blood in the lung fields which prevents adequate expansion and causes pulmonary hypertension. The docs are hoping this will start to clear in a day or two. 

She handled the exploratory surgery well considering all she's been through. It lasted a couple hours and we were told her blood pressure and heart rate remained stable throughout. Her heart function is improving as far as we know, but the more fluid she pees off the better. That will make less volume her little heart has to pump once she comes off ecmo. 

The ecmo machine is currently doing almost all of the work for her heart and lungs. It drains blood out of her right atrium via gravity, oxygenates and removes CO2, and then pumps freshly oxygenated blood back into her aorta. It's an amazing machine-yet I can't help but hate it. More specifically I hate that my daughter needs it and therefore I hate to look at it. 

It's all hard to see. Right now our baby's chest is open under a transparent dressing. We can literally see the thud of her little heart. It's unnerving for her to be so exposed. I worry about the potential for trauma and infection, especially given the damage endocarditis has already caused her. As a parent you aren't meant to see your child's organs, or to see them lie lifeless while you remain helpless. 

I wouldn't wish what our baby is going through on anyone. Yesterday she woke in pain. Her silent cries with that open chest tore through us. We demanded her to be further sedated with pain medicine, not that the nurses weren't already working on it. I hate everything about our situation except that we still have our baby and more importantly that she can still recover. She is still fighting and will pull through. We just have to give her time to heal. 

In the mean time Sean and I are doing our best to be there for her and remain steadfast. It's not been easy. There's been a huge out pouring of support, most of which is helpful. Sometimes though people say cruel things with kind sentiments out of ignorance. It's annoying. We know people don't know what to say to us and that's alright. Before being in this situation I wouldn't have known what to say either. 

However if one more person tells me "everything happens for a reason" or insinuates our baby is in this tortorous situation because Sean and I can handle it, I won't be able to say "thanks" and move on. I don't mean this to be a rant; I am truly not angry about it. I know people mean well and that these things are often said out of ignorance. Yet if I don't speak out and the same things are said to someone else in pain, it'll be my fault. 

Again, I truly appreciate the thoughts, prayers and positive sentiments sent our way. I am very grateful for so much support. Please don't assume I am lashing out. We just don't need the old southern sayings thrown way out of context. Thanks for understanding. Much love to each of you.