Friday, October 8th

It was a relatively uneventful sort of day, which was actually quite nice! Madison had a bit of a runny nose yesterday and this morning, so I thought that it would be best to be safe and leave her at the Ronald McDonald House with my mom. I had breakfast with them and then left them to play in the playroom while I headed off to CHOP to spend some time with Aurelia. When I arrived it was time to pump, so I did that before I went to see our girl.

I got to her cribside around 9:15 and met with her nurse who informed me that I had just missed rounds. She caught me up though. They decided to start bolus feeds (every 3 hours) today. They had been giving her continuous feeds of about 18 mls an hour, which is technically full feeds). They wanted to put her on more of a schedule, so she would be getting the full 54 mls every 3 hours, at 12, 3, 6, and 9. Her first bolus feed was due to start at noon, so I planned to meet with Speech around 11:30. At that point, she was off of her continuous feeds for an hour and a half and the hope was that she would be hungry and we could try to feed her with a bottle (as opposed to her feeding tube, which is where she is getting all of her feeds currently). The first bottle feed went okay. She has the ability to suck, but because of her cleft palate, she can't press her tongue to the roof of her mouth and have it create the suction/pressure that one needs to draw the milk out of a regular bottle. I have some special bottles that we are going to use and there are other options, if these don't work. She took in a total of 1 ml via bottle and enjoyed the rest of her feed through her feeding tube! Because the Speech folks are only there Monday-Friday, we're going to wait until Monday to try again. In the mean time, I'm going to try some non-nutrative breast time while she's getting her feeds and hope that it will give her a sense of what a "normal" feed can be like. Having that skin-to-skin time will be really special and I'm looking forward to it!

I also met with someone from Occupational Therapy today who gave me some information about how we should handle Aurelia for the first 2-6 weeks post-op. For the first 2 weeks, she shouldn't have any tummy time (not something I was even considering!!) and for the first 6 weeks, we shouldn't be picking her up under her arms or sitting her up in a sitting position (again, I don't think that either of us were planning on doing that!). When we pick her up, we have to slide one arm under her shoulders and the other gets scooped under her buns. This will ease any discomfort that she has in her chest. The OT folks also gave me some information on scar massage, which we can start at six weeks post-op, as long as the incision has healed completly. There's not much to it - just small circular motions with our thumbs, going from top to bottom - but it will feel nice to Aurelia and it will help her scar become smaller. We can add some lotion or some Vitamin E, so it will be a nice experience for her, I hope. I wouldn't be surprised if that becomes a task that Madison wants to do for the baby!

The other big news that I got today is that it is likely that Aurelia will move out of the CICU and into the CCU tomorrow. That's right - moving on "up" to the step-down unit! She doesn't have too many of those Intensive Care hook-ups anymore, so she may be ready to move to the regular Cardiac Care Unit. Like yesterday, I was really surprised with how quickly things are happening. I asked her nurse about anticipated length of stay in the CCU (because home is the next step!) and she said anywhere from a couple of days to a couple of weeks. Because of her cleft palate and the expected feeding issues, it is likely that her stay will be closer to a couple of weeks because we want to make sure that she is capable of eating on her own.

After my nice morning with Aurelia, I picked up my mom and Maddie and we headed for the Please Touch Museum. I thought that it would be nice for Maddie to have some special time doing something fun. Long story short, we didn't make it there. The directions that we had were incorrect and we got pretty lost. Luckily, I pulled out my GPS (thank you, Charley!!) and we got ourselves to the hospital instead. We'll try to get to the museum over the weekend instead! Maddie had a quick visit with her sister and got so excited to see that Aurelia had a "pretty" in her hair (her nurses had put her in a purple onesie and had placed a tiny pink bow in her hair). She looked pretty darn adorable and Maddie was just tickled! We visited for a while and then headed back to the Ronald McDonald House for dinner. I got Madison her bath and then headed back to the hospital to spend a bit more time with Aurelia. I brought my computer and we Skyped with Charley for a while! It was great that he got to spend some time with Aurelia. Our nurse for the evening, Mercedes, even participated in the Skype session and answered some of Charley's questions about how Aurelia was doing. It was really nice to spend that time together, even if it was over the computer!

And now I am back at the Ronald McDonald House. It is very late and I am quite tired. I know that I haven't been getting enough sleep, but I don't usually feel tired during the day. It often hits me right after dinner, when it is time to settle Madison down for bed. Sometimes that makes settling her down even harder. I just want to cuddle up and go to sleep - shouldn't she want to do that too? No, she likes to have stories and then she likes to lay on my bed while I pat her back for a while. Eventually she falls asleep, but sometimes it takes a really long time! Tonight, I skipped out and let my mom put her to bed. I felt really guilty about leaving her, but sometimes I need a break from it. I never thought that I would say that and I'm not sure that I like it, but I guess that is part of being a mom to 2 children. You do everything to can to be there for both of them, but sometimes one child needs you a bit more.

Even though I was so tired tonight, I'm really glad that I went back to the hospital. It was fun being there when there weren't too many other parents around. The pod was quiet and I could quietly enjoy time with my daughter and listen to the hub-bub of the nurses. They had the Phillies website up and there were constant updates about how the game was progressing. They were also working on putting together a take-out order for most of my visit. I think that the final order was placed around 9:30 and there were probably 20 different things that were ordered! It reminded me of the show Scrubs, which I adored. I tried to pick out nurses and doctors and orderlies who reminded me of various characters from the show and I told Aurelia all about it. She seems to like it when I talk to her because she coos and sometimes grins. Maybe it is gas, but I like to think that she enjoys hearing my stories!

Tomorrow Charley will be back and I'm sure that one of us will have another update to post. Can't wait to see him! And I think that both girls will be thrilled to have their daddy back too! For now, good night!