Daddy Daughter Days

First off I'll say Avelyn is still hanging in there, although she is starting to show new symptoms from her increased venous pressures. Her liver is now enlarging. Her liver function is still alright but the actual size of her liver is growing due to her increased veinous return pressures and congestion. Her chest tubes and PD drain outputs are about the same, maybe a little higher. Yesterday she put out just over a liter. Her kidney function isn't improving but it doesn't seem to be getting worse either. Right now her CoA surgery is scheduled for early Thursday morning. It may be bumped up a day or so though due to the PCICU being full and having to cancel scheduled surgeries for those not already on the unit. 

As bad as it sounds, I don't think this surgery can come soon enough. Her surgeon doesn't think it'll help her current situation a whole lot but the cardiologist (who does her cardiac caths) seems to think it will. I don't know. It has to help at least a little with high pressure in her left ventricle and back flow through her VSD- which is likely contributing some to right sided high pressures. The cardiologist doesn't want to do her cardiac cath until she is six weeks out from her unifocalization surgery. Right now she is only 3 weeks out. He believes she is too small for stents unless it's an emergency. If he puts them in now they'll just have to be surgically removed when she grows, so he'd rather ballon her vessels up. We'd prefer this too but she needs to be 6 weeks out before there isn't a high risk of rupturing her suture lines in those delicate Pulmonary vessels.

So we sit tight and we wait. It's so frustrating.

On another note I am still sick and haven't been able to stay with Avelyn since Thursday. In that time Sean has barely left her side. She and I are so lucky to have him. He's amazing.

Throughout my pregnancy he questioned whether he would be able to be the father he wanted Avelyn to have. I always knew he would be great, but he had serious fears. Seeing him with her is so wonderful. His love for her could never be questioned from the minute she was born. He escorted her to the NICU while I was still in the OR. He stayed with her until she was stabilized. He sent me photos and described her to me as best he could. Those hours are a blur to me because of the sedation and pain meds from my c-section but I remember being so relieved and so much less worried because her daddy was with her.

I know I get more credit than he does. It makes sense, I publish my thoughts and perspective and am generally more outspoken. After the last few days of having to stay away I just wanted to highlight our unsung hero a bit because he deserves it.

Sean is my constant and now little Avelyn's as well. He has been there for me for nearly a decade. He has cared for me through years of Lyme disease, which mostly affected me neurologically. He would often sit with me to ensure I ate before succumbing to fatigue. He would wake me during my 20+ hour slumbers  to make me drink water, eat, or take my antibiotics. Even when I was awake, he would bring me my antibiotics-I didn't know the day of the week, let alone the time of day. He would patiently answer the same questions over and over, because he knew it would upset me to know I didn't remember already asking. He has to live with the memories of me at my worst. Memories I don't have. He lives with the worries of my relasping and yet he is still here and still fighting for both of us. 

He is an amazing man. His patience is inspiring and his love for Avelyn and I unquestionable. I don't know what we ever did to deserve him, and I don't know where we would be without him. He is the best partner and husband I could ever imagine. While I have seen some pretty amazing fathers, I can't say I've seen any more wonderful or kind. His love for Avelyn is so fierce yet so gentle. Despite his likely doubts, I know he will never let her down. 

We love you Sean Aldin :)