Wednesday, October 27, 2010

The Little Things

Since Aurelia's arrival, there have been lots of Big Things that we have recorded in this blog: her two surgeries, the placement of the NJ tube, the cardiac cath to name just a few. Tonight I'd like to take a few minutes to comment on some of The Small Things have meant so very much to me over the last several weeks. In no particular order:
  • Vet Dogs - the weekly program at the Ronald McDonald House that brings a number of dogs to the house, which is great for all of the children (and adults) who miss their pets while they are here! Tonight brought about 8 dogs, all in Halloween costumes!
  • The nurse who gave the simple advice of turning on the lights in Aurelia's room during the daytime. Up until then, I had been leaving them off, thinking that the darkness would be soothing to her. Now I take time to turn the lights on each day and let my little girl enjoy looking around a bit! No need to be in darkness all the time!
  • The Connolly Center at CHOP. This is a section of the hospital that has a variety of things - classes (such as the CPR class that we took a couple of weeks ago), a library for kids, sleep rooms for parents that need to stay over but don't have space in their child's room, laundry facilities, and lots of freebies. We have picked up a number of lovely handmade blankets and an adorable teddy bear for Aurelia and a fun froggy pillow for Madison. Lots of people donate things for kids and families at CHOP and this is where they put a lot of those things, which is a nice treat! They also have water, fruit, and other yummy treats out during the day.
  • Similar to the Connolly Center are the Ronald McDonald Family Rooms at CHOP. These are spaces for family to gather and visit without taking up a ton of room in the child's room, or to wait while your child is in surgery, or to just chill out in for a while. Sometimes they put food out for the families. There are also two computers for families to use, which is great to do a quick email check or facebook or blog update!
  • Cookie Decorating - another evening activity at the Ronald McDonald House (Maddie has had fun with this a few times already!).
  • Chocolate Milk - an endless supply of it, which is always delicious!
  • My Mom's help (which is actually a Big Thing, but I don't think I've mentioned how much I appreciate it). It has been really special having Madison with me during our stay here, but we couldn't have done it without help. I need to spend time at the hospital each day and it is great that she can be with Madison when I can't be with her.
  • The Nourishment Room - this is where I store my breast milk in the CCU. There is a freezer just for milk (and if you are curious, I am quite "prolific" and have actually filled 5 tubs with pumped milk so far. I'm actually going to donate some of my milk because we don't have the space to store it at home and I am currently taking up 1/2 of the freezer space!).
  • The phone calls, emails, cards, hugs, and prayers from everyone cheering for us ~ these things are what keeps us going. Many people have said how strong they think that we are and how well we are handling it. To those people, my response is that I don't know any other way to handle it. I have to be strong for both of my girls and I will do whatever I can for them. It is a lot, but the strength and support of so many others is what gives me that extra boost on the days that I have trouble finding my own strength. So thank you to all of you.
  • The prayer shawls - I was sent 3 different gorgeous prayer shawls made from various church groups (one from my own church, another from a high school classmate of Charley's and the last one from the mother of one of Charley's co-workers). All three are snugly and warm and filled with love. I have been keeping them at the hospital and use them each day.
  • Tickets - Charley's dad bowls with a guy who read our blog and felt that we might enjoy some baseball. He sent us tickets to one of the Phillies playoff games (the last game, to be exact), which was so very kind. We didn't make it to the game because Aurelia had a procedure done that day and we needed to be with her. But, we donated the tickets to another family at the Ronald McDonald House and seeing their looks of happiness was wonderful. It was so great of him to send us those tickets and we were really happy to "pay it forward" and make someone else happy too!
  • The dinners (and weekend breakfasts) at the Ronald McDonald House are amazing. Different groups come in each night and usually prepare a smorgasbord of different things. I don't think that we've had a bad meal yet. And to think - all that (plus the activities and the room) for just $15 a night. Amazing. The Ronald McDonald House is just an amazing place. I will certainly be putting my extra change into the little bin whenever I eat at McDonald's!
  • Halloween Costumes - last night at dinner, they rolled in 2 giant clothing racks full of brand new costumes and allowed each child to pick one out. I had already ordered costumes for the girls, but by a stroke of luck, my order got messed up and the original costumes that I ordered weren't going to make it here on time. So, I picked out a costume for Madison and ordered something new for Aurelia. I'll post pictures after Halloween!
  • The smiles from strangers.
  • The Fellow who always asks me during Rounds how I think that Aurelia is doing. It is great to be included and Dr. Janson really makes an effort to make sure that parents feel that they are a part of their child's care team.
  • Sleep chairs at the hospital - I don't get to nap too often at the hospital, but when I do, these chairs are the best! I can get comfy and still be two feet from Aurelia's crib. Very nice!
  • The big squeezes and Eskimo Kisses that Madison gives me each day when I head to the hospital. Sometimes these are accompanied by tears because she doesn't want me to leave her, but I still really appreciate the hugs and kisses!
  • The bow that was placed in Aurelia's hair while she was in the CICU and the Mohawk that she was recently given while in the CCU (okay, daddy gave her the Mohawk, but I'm still thankful for it!).

There are probably tons and tons more of these Little Things. The last one, which is probably the Biggest Big Thing of all is the hope that I feel for my little girl. I was so scared when I first found out that she had a congenital heart defect. We have come a long way in the last five months. And we still have a great distance to travel. But I feel hope for the future and that is a very good Thing, Big and Little!

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