Monday, October 11th

It has been many days since we have posted a real update and I apologize ahead of time because this won't be a long post, but I wanted to get something up for those of you that are still following Aurelia's story. The biggest news is that Aurelia was moved on Saturday out of the Cardiac Intensive Care Unit to the Cardiac Care Unit. She isn't in need of as much "intensive" care, so she was able to go to the step-down unit. This, as all of our doctors and nurses have reminded us, is a good thing. This means that she is one step closer to going home. Good, but scary. Since we've been in the CCU, which is just across the way from the CICU, we've felt overwhelmed and a little scared about Aurelia's care.

Charley and I both know that Aurelia is in the best place possible and that this move to the CCU is a good thing, but because she was moved on the weekend, we feel like it is taking her new team a long time to get to know her and her case. We miss our nurses and doctors from the CICU! We also felt like our move to the CCU put us in a marathon sprint for the finishing line (getting her out the door!), and we don't feel at all ready for that.

Soon after her move to the CCU, we were told that she would be going home with a feeding tube and that Charley and I had to take an NG class (to learn how to insert the tube, if necessary, and to give her feeds and medications through the tube). We were both under the impression that we'd be working with the Speech Department to get her to take a bottle and to hopefully breastfeed one day. It was a big surprise to learn that the feeding tube wouldn't be coming out prior to our departure. Again, we felt like they were moving really fast and it is pretty overwhelming.

The other thing that has been frustrating is the concern about her oxygen levels. When we left the CICU, she was on room air. They were trying to wean her down to 21%, but she wasn't handling it well. They played around with the percentages and found that she was happiest with it between 25-30%. Since we've been in the CCU, they have continued to play around with her oxygen and to me, it feels like they are rushing to get her off of the oxygen. It is just another one of those hurdles that we are barrelling toward (and not necessarily ready to jump over!). Everytime we check in, the plan has changed and it is frustrating.

I certainly don't intend for this entry to be a big complaint, so I will share some of the benefits to being in the CCU. We were also given more opportunities to participate in her care - giving her a bath, changing the sheets on her bed, continuing to change diapers and that sort of thing. We can also hold her whenever we'd like. Charley and I have learned some of her cues and know that when she's cranky, she prefers to be patted gently while in her crib. It has been fun getting to know her a bit more. This morning Charley and I gave her a bath and then worked together to calm her down after she had an x-ray taken. It was nice because we felt like we were parenting our daughter and even though she is still surrounded by machines, it felt like we were providing the love and care that she needed. And, the bonus - we actually settled her down very quickly, which made us both feel really good.

In order to ease some of our concerns about the lightning pace that we felt we were on, Charley and I really wanted to sit down with one of the CCU attendings and ask a ton of questions concerning all of the various anomolies that Aurelia has. What types of things should we look for/be concerned about in the future for her heart, kidney, intestines, cleft palate, genetics, everything? We wanted to know about future care, follow-up care, and that sort of thing. I had the opportunity to talk with Dr, O'Connor, one of the attendings, but since he is just getting to know Aurelia, I decided not to bombard him with all of the questions (of which I didn't think he'd be able to answer at this time). I did, however, give him a heads up and basically said - get to know her case and then we can talk, because I have a bunch of questions that we need answered. Hopefully, in a day or two, we can start getting answers to some of those questions.

As much of our time here has been, this weekend was full of highs and lows. We learned that another family (who we knew from the RMH in Camden and moved to the Philly house shortly after us) lost their baby girl (also with HLHS) over the weekend. We were all reminded of how fragile these babies and their situations are. It was a heart-wrenching loss for a really nice family. On the up side of things, we had a nice (quick) visit with my dad and Uncle Mark, who drove down from CT for the day on Saturday. For me, another high was that I got to sleep in Aurelia's room last night. Since Charley was here with Madison (and my mom), I felt like I could stay the night at the hospital. In the CICU, sleeping cribside just isn't possible, so it was nice to be close to my baby all night long.

The other thing that was tough about Aurelia's first night in the CCU was that she was all alone. A tiny little baby in a big old crib, all by herself. I cried when we left because I was worried that no one would know if she was upset or sad or needed anything. After spending the night there with her, I feel much better about that situation! She is watched over and well-attended. Also, Aurelia does have a roommate now, a little boy named Hayden. He has 3 sisters, a mom and dad, and 2 grandparents. All of whom were visiting this evening when I went to spend some quiet time with Aurelia. The majority of my quiet visit was disturbed with many sounds of "Shhhhhhhhhhhhh..." from the mom, trying to quiet her girls down (even though the shushing was probably worse than the noise that the girls were making!). I had a nice visit with Aurelia, in spite of the shushing!

Our poor little Madison has a bit of cold right now, so we've decided to keep her away from the hospital for now. It is tough because I want Maddie to see her sister, but I don't want to chance Aurelia picking up any kind of respiratory illness. That is the last thing that she needs! For now, I'm trying to figure out how to juggle my time so that I'm spending enough time with both girls. Today went pretty well, so hopefully that trend will continue tomorrow!

I am exhausted so I am going to try to get to bed at a reasonable time. Thanks for reading and have a great night!

Love,
Jillian