Mighty Beautiful Heart

It has been a very busy week or so. We took Alexandra on her first trip to Snowshoe, WV since her surgery. I was a little concerned having her at that elevation (her nailbeds used to turn a little blue there at times) as well as being so far away from quality healthcare. However, my concerns were unfounded, as she had a great time and had no issues whatsoever. In fact, Friday night there was a live band in the village, and she danced continuously for over an hour. I sat there and marveled at how far she has come in the last 1 1/2 months. Snowshoe is such a relaxing place for us, so it was great for all of us to be able to unwind a bit.

Alexandra has been enjoying spending more time with both of her grandmothers the past two weeks, and it’s been nice getting her out of the house more besides going to doctor appointments!

One thing that we decided while at Ronald McDonald House (RMH) in Philadelphia was that we wanted to give back. Therefore, we arranged a visit with our local RMH to see how we could contribute through volunteerism and/or by donating needed items. This house had such a different feel from the one in Phildelphia as it is new and much smaller. However, it felt warm and very homey, and I know how much those who stay there must appreciate it. After the tour, I decided to become a committee member on a fundraiser for next year, and we plan to donate items from their “wish list” when we can. We were so grateful for how much we were helped by RMH, friends and family that we feel it is very important to give back in some way. Between helping RMH and using part of the proceeds from any sale through Mighty Beautiful Hearts for CHD related causes, I plan to help as many other people as I can.

I can’t believe we have been home over two weeks now! The time has flown by trying to get settled back in and getting back into a routine. While we’re going through the motions, we don’t quite feel like things have returned to normal yet for us. In speaking with our Priest, he told us a story about how the Native American Indians would only walk so far on a given day, as they believed their spirits had to catch up with their bodies. It was a great analogy, as we feel like our own bodies are here but our spirits haven’t caught up yet either! We need to remind ourselves that it’s okay to take some time getting back into the swing of things.

Alexandra loved being in the 4th of July parade last weekend and has been doing very well. However, I had a bit of a scare this morning. She wanted to take a shower with me, so I let her for the first time since we have been home from Philadelphia. After I got her out and dressed, she started acting a little out of sorts and asked to go to bed, which is highly unusual! I put her in bed, but she immediately wanted to get out. I took her back in our bedroom, where she proceeded to vomit repeatedly for the next several minutes. I got her cleaned up and left a message for her cardiologist to call me. She ended up vomiting again, so I had to clean her up and change her a second time. As some of you may know, vomiting can be a sign of fluid build-up. I kept looking closely at her face for signs of puffiness, which only made her more upset.

The cardiologist finally called, and I explained how everything happened. Apparently, getting nauseous in a hot shower is a very common occurrence in his cardiac patients. According to him, a number of his patients can also pass out in the shower. He felt that this was the problem since she seemed fine and was running around by the time he called. So, I guess Alexandra will just not be taking showers with Mommy for a while!

I had a wonderful opportunity to go out today and have lunch with a friend. It was such a nice treat and made me realize that I really need to do more things for myself now that Alexandra is doing so well!

Alexandra had a great cardiology appointment yesterday.  The fluid around her heart seems to have finally disappeared, and her cardiologist has cut her diuretics even further.  She has been on one of them twice a day since she was diagnosed at 11 days old, and now she only has to take it once a day.  We are thrilled that she is needing less and less medicine!

We also received approval for her to ride in the 4th of July parade.  She remembers balloons and waving at everyone from last year and is excited about doing it again this year!  However, we will not participate in any of the other activities throughout the day as we usually do.

We have never been people to ask for or accept help, but after the last month or so, we have been grateful for the many offers of assistance from family and friends.  Friends and neighbors have run errands for us, and TenderHearts support group and church members have provided meals.  I’m now a firm believer that you need to accept offers of help, as you simply cannot do everything yourself!