We are now a week and 2 days post-op and Jillian is still doing good :) In just a few hours she will be done with ALL of her medications and feeds. Slowly but surely all the tubes and wires and bandages are making their way off our little girl and into the trash!
Since the last post I wrote she has been taken off the medication to help her heart pump (Milrinone) and also the "blood thinner" type medication (Heparin). She has had both lines in her groin taken out and is on very little oxygen. She still has a PICC line in her left arm, but as far as her accessories go, that's pretty much it, other than monitors to measure blood flow to the upper and lower parts of her body, a blood pressure cuff and EKG wires. Really, though, she's doing fantastic! She looks more and more like our baby girl everyday :)
So, now that she is off of just about everything she was on, our biggest hurdle is feeding... Right now she is getting a continuous feed of breast milk via a feeding tube, but starting tomorrow they will only feed her through it once every 3 hours. Her doctors and nurses are hoping this will help her to feel hungry and will make her want to eat. We are offering her very small amounts of breast milk that I have pumped from a bottle- only 5 or so CC's every few hours, but these feedings seem to upset her tummy some so it is a slow process. Patience is not a very big strength of JR's or mine so we have to constantly remind ourselves that she is in charge! (Kind of a scary power to give a two week old!)
I'd be lying if I said I wasn't tired of being at the hospital already... I'm tired of the crappy "beds" and the food. I'm tired of sharing a bathroom with what feels like a million strangers and using a "shower" room that never really feels quite clean enough. I'm tired of not being able to pick up MY baby without someone else handing her to me... indeed we never have picked her up on our own. I'm tired of only being able to talk to Oli and Athan on the phone or see them on Skype. I'm tired of being away from my husband. And mostly (especially on days like today when it's snowy out and I just want to cuddle up on the couch with JR and all THREE of my kids), I'm tired of not being home together as a whole family.
BUT, Jillian is making progress every day. It's amazing to watch her- to see her stubbornness and attitude coming out already (that will be fun later on...) and to watch her continue to surprise everyone around her. It's amazing to see her progress everyday and sometimes even hour to hour. And when she's awake and just stares at me, she melts my heart, and I know that in the end, this will all be worth it.