Jillian's Turn, October 6th - 12 days old

Here we are, two days after I was originally scheduled to deliver Aurelia. In fact, she is now twelve days old and it is two days after her second surgery. My post this evening is kind of a mish-mash of various feelings surrounding the surgery, post-surgery, how Madison is doing, the CHD community, and my sadness over the distance that Charley and I must endure for a few days each week.

To start, open heart surgery is a scary thing, no matter what age. But an infant, less than 8 pounds, with additional things that are wrong with her tiny body - now that is damn frightening. Monday, as Charley wrote, was a tough day for us. The early morning was calm and somewhat serene as we enjoyed a bit of quiet time with our little girl. The anticipation of what was to come almost got in the way of our peaceful time together. And when the hustle and bustle of surgery prep started, the day turned into a very long wait.

Finally, after many hours with many updates, we were allowed to see our daughter. Those first few moments with her were a mixture of emotions and questions. Our nurse walked us through each tube and stitch on her body, explaining what each one was doing and how long it would remain in place. I was surprised with how puffy our girl looked, but with all of the extra fluid that was pumped into her body, this should not have been a surprise. The breathing tube that was inserted into her nose made her face look a bit distorted. This, on top of the puffiness, made us decide that we wouldn't bring Madison in to see her sister until that tube was removed. So far Madison has been interested in her baby sister and we didn't want to frighten her.

When that reunion took place, just a day later, Madison was thrilled to see her sister again and didn't bat an eyelash at the large guaze dressing that hid her incision. Instead, Maddie wanted to "boop" Aurelia's nose and to play "This Little Piggy" on her toes. It was very dear and made me so proud of my older daughter. I know that kids are relsilient and that they are very good at adapting to new situations, but Maddie really has been through quite a bit over the last month or so. She hasn't been home since the middle of September. She has been sleeping in a Pack 'N Play. Most of her toys and books are still at home. She hasn't seen her kitty cats. She spends part of each day at a hospital and the other part of her day at a Ronald McDonald House in a city that she has never visited. She has a new sister and she seems to be tickled by her. Yes, I am very proud of how well our Madison has handled all of these changes.

I recently posted something on Facebook and I wanted to clarify for anyone who reads my posts and was confused. I posted that the CHD community has lost 9 precious babies in the last week or so. I am "friends" on Facebook with a bunch of folks who have or have lost children to Congenital Heart Defects. I also follow a few blogs of other parents who have children with CHDs, particularly HLHS. The "community" that I wrote about in my Facebook status referred to the families (and by extension, those that they know) that I have friended on Facebook. I don't actually know any of them, but their children and their struggles are dear to me and hearing about each loss has been difficult this week in particular. There are many victories that I hear about too and right now our little Aurelia seems to be one of those victories among all of the losses. One of those golden stories that will, hopefully, allow us all to see the light in all of the darkness that these other losses has caused.

Speaking of community, I will say that staying at the Ronald McDonald House has been an amazing community for us. We started out at the house in Camden and when we moved here to Philly, there were several families that had also relocated here. And there have been quite a few since. We have a community here too. In fact, many of the families here have children with HLHS or other CHDs. I frequently see several of the other families in the CICU when I am with Aurelia. It is nice to simply say "hi" and to know that those folks know what you are going through. I pray for our little girl each night (and many times throughout the day) and I always include the little ones that share her pod in the CICU and the little ones of the other families that we've gotten to know. We are all here because we need to be and it is nice to have this community as well. We share dinners together and have simple conversations - how's your baby doing today? - that are anything but simple. It is nice to have others who are in the same place as you, just hoping that their child will be okay.

Charley headed back to G'burg today, which was sad for all of us. I have hospital visits and Madison to keep me busy, but I would much rather be doing those things with Charley. I am sure that he's having a tough time being at home without any of us there with him. I can imagine that the house feels empty and quiet without Madison's footsteps or dancing toes twirling throughout the living room. I am happy that we will all be together again on Saturday, but until then, the being "alone" sucks.

Finally for tonight, I want to say thank you to all of you who are reading this blog. Charley has said it before, but we both truly appreciate the love and support that you are all giving to us. We enjoy reading one another comments from friends or acquaintances or to try to figure out how we know some of you readers. It helps to know that there are so many of your out there, sharing in Aurelia's journey. Our little girl is loved by so many people and that gives us the strength to continue to help her overcome the odds. Thank you for checking in!

The pictures above are from today. Many of you have been asking for new pictures and I believe that Charley is working on getting some others inserted into previous posts. We have lots of pictures, but we've been lax about getting them on here! Here are a few for now. More will certainly be added soon!

Lots of Love,
Jillian