Olivia is doing great and getting bigger everyday. Our schedule so far is pretty busy. I thought there would be this huge amount of free time where I could accomplish a lot of things, yet I haven't found the elusive free time yet. It seems like when I am not taking care of Olivia I'm washing bottles, defrosting breast milk, preparing medicines, cleaning up dirty diapers that do not make it in the basket on the first shot (pee diapers). I will admit I am a social dragonfly and might lose some useful time throughout the day because of it. The problem is that the Harley Davidson room can get very boring so Olivia and I spend a few hours a day hanging out with our Ronald McDonald House friends. All of these factors make for an overwhelming day and no blogging. I apologize for not keeping everyone up to date.
Olivia is still seeing a doctor once a week, pediatrician yesterday, cardiologist next week, with a lab work-up here and there. Last weeks cardiologist appointment with the amazing Dr. Natarajan went very well. She was a very good girl for her echocardiogram. In fact, she loves to having both of her hands holding onto the hand of the radiologist as she moves the probe around her chest. It is very cute, and luckily all the echo's up here have been like this so far. The results of the echo showed everything is flowing well in her heart, no problems at all.
Her pediatrician appointment went well too. She cried for most of it, but Dr. Huang gave her a good once over and thinks she's doing great as well. She also helped prepare us for our big Neuro-cardiac program appointment next week. Basically, CHOP has a research program where they assess the neurological development of their cardiac patients, and then try to get those that are behind the right therapies they need. The program then follows them throughout the childhood. Our appointment is Feb. 20th starting at 8:30am. I was told to be prepared for a long day, 3 hours or so of assessment. It is possible they are figuring in a lot of time for her to be fussy and non-cooperative. Once all that is over then she'll have her EKG and echo at 1pm. It's going to be a fun day. As for the advice Olivia's pediatrician was basically - they are going to find a lot of little nit picky things wrong with her, but just go along with it and get her the therapies they suggest.
The question I find myself answering a lot from various people I meet, and who inquire about Olivia, is "why are we still here?" (It is asked in nice way). The truth is we probably don't need to be here, the cardiologist seemed surprised we were staying in town so long. The problem is to go home it'll cost us $600 for the flight and $400 for the portable oxygen concentrator, to fly home and back for surgery and then home again is pretty expensive. Problem number 2 was the New Orleans hospital said her shunt was narrowing more and she would need surgery much sooner, or a catheter intervention, when we came up to CHOP they couldn't duplicate the findings. As we would wait in New Orleans with them thinking we need the surgery sooner but with CHOP saying to wait until March is a situation that could have gotten pretty dicey. Problem number 3 is we have to bring our own continuous pulse ox machine to the New Orleans hospital to monitor Olivia's saturations when she is in the hospital on oxygen. Problem number 4 our good friend Mia Marrone lost her battle with HLHS around 78 days, and then a baby at the New Orleans hospital, born 6 days before Olivia lost his life at around the same 78 days of life. Several other HLHS babies we knew kept having a lot of complications and were just stuck in limbo trying to get answers on what was wrong at the local hospital. When we flew Olivia up to CHOP she was about 78 days old.
Our answer to all of these problems is that the lost wages, and the sadness of our family being apart is worth every time Olivia gets a day older and is still alive. Sure it would be easy to stay at home, work and be a happy family, but the what if's and the gravity of this entire situation will keep us up here through March and possibly 2 weeks after her surgery. So whenever someone asks, "why?" they get a very loaded answer.
She's already trying to hold her bottle. Everything is going great just waiting for our appointment on Monday. She's had a few reactions to formula which makes up one third of 6of her daily bottles. Lots of spitting up now but I still just give her breast milk at night just in case. She's doing a lot more giggling, she actually thought I did something so funny she was giggling without me even touching her. I'll post a essay update tomorrow 
This morning I waited at 6: 30 in a ridiculous line for a randazzo king cake. All because my husband requested it. So now the king cake is sitting with me at the gate after being scanned by security. We cant wait to get to philly. I have gotten quite a few envious looks and comments. I am anxious to see my baby again. 
Olivia went to the eye doctor hi yesterday. They put dye in her eyes to see the dry spots. The dye turned the puss orange. Hopefully, she will have this antibiotic work. If not at a year old, interventions will be the next step.
