Sorry about the lack of updates again, hopefully the mobile app means I can post a little more often. Anyways, Lillian is still waiting for her transplant but doing relatively well considering. We are remind daily at Children's that no matter how dire your situation there is always someone worse off. It's not an encouraging thought but it teaches us to be grateful for the health Lillian does have. We're always thankful that Lillian is relatively normal in terms of her development so that once we get a heart we can hopefully move on with our lives. She has been sitting up on her own, something the nurses tell us kids generally don't do in the hospital. I'm a little worried about the next stage of crawling/walking with the PICC line in her leg, but she's done well so far.
Lillian has been going up and down a bit recently in her health, but relatively minorly. She lost six ounces about a week and a half ago, almost enough to send her back to the CICU to get her Milrinone increased, but we've avoided that scenario for now. I'm grateful for that too as an increase in Milrinone does mean that we're starting the decline as she outgrows her heart. The weight loss was mainly related to Lillian's frequent emisis and lack of digestion but we've been able to counter that so far by increasing her calories in certain feeds and checking her residuals to try and reduce overloading her and making her spit up. I am worried about the lack of digestion, but it's not unexpected either. As she gets bigger she will begin to start outgrowing her heart and a consequence of that is less blood to the stomach and thus poor digestion. We still have many options to manage her heart failure and keep her running while waiting for a heart including putting her back on continuous feeds or TPN, increasing Milrinone or even putting her on a Berlin heart if need be. We would just like to avoid doing them as long as possible as they either set us back in terms of development (learning to eat again) or substantially reduces her quality of life (the Berlin heart requires you to be in the CICU and likely paralyzed).
But again, she's doing ok at the moment, and even though we're a couple more lost ounces from the CICU, we've avoided it for now and she would be back fairly quickly if she went.