Tips for other TCS parents

1. If your child uses a pacifier, BRING IT! Bring several! Kennedy was in a lot of pain, especially the first 48 hours and the pacifier soothed her.

2. Bring your child things from home: toys they love to play with and cuddle with, blankets that smell like home, and any security item they may be attached to. For Kennedy, her softest blanket has been helpful. We forgot her glowing, musical seahorse which I KNOW would have helped but my parents went home and are bringing it back today.

3. Bring music and movies. Kennedy has fallen asleep so many times to our lullabye music on my Ipod and I found bringing the Ipod docking station was helpful.

4. Bring snacks and a cooler for drinks. The cafeteria is expensive. For example, a 16oz bottle of soda here is $1.69 a bottle! Here at Duke, our room has a mini fridge and the floor has ice and water (along with cups). Also, check and see if your hospital has a Ronald McDonald room on one of the pediatric floors. Ours does so we use the microwave to warm meals friends have brought. Additionally, they have drinks and snacks you can enjoy in their room. Ronald McDonald House Charities You can search for a place to stay as well as check to see if there are rooms in your hospital such as the room at Duke we use. One other note, ours has laundry facilities which is nice because most hospital rooms don't have a ton of room for lots of luggage.

5. If friends offer to help, ACCEPT. It's hard for me, but I realize we enjoy the break of worrying by spending time with our visitors and also, their generosity may help you with your checkbook and your belly. Our dear friends have brought gifts for Kennedy, snacks for us, and meals for us. It's really been so nice. On a side note, after going through this, I have decided that if I ever have a loved one going through a tough time, I will be specific in what I offer. I will not tell another family "Let me know if I can help" ever again. Even though the generosity behind that statement is wonderful, heartfelt, and so very meaningful, most families don't like to ask for help. Additionally, it's hard to know what help we might need. In the future, my goal will be to offer two choices such as: "Can I bring you a meal or would picking up some of your laundry and returning it be more helpful?" for example. That way, the family can easily make a choice without having to ask or think too hard about how I can help. I now have lots of ideas how to help others and I intend to reach out further in the future as others have recently done for us. I definitely do not post this comment to sound ugly to anyone who has reached out to me. Everyone has meant well, more than well. They've extended their love to us. And you do want families to know you are there for them for anything but personally, I've found specifics to be more helpful. Perhaps it's just because I'm the type of person who hates to ask for help.  
But, I bet I'm not alone...

6. Bring things to make YOU comfortable - sleeping bags, pillows, blankets, camping chairs, slippers, laptops, games, books, movies, music, snacks, pajamas... the list can be whatever YOU want it to be. Trust me, the nurses have seen it all. This hospital room is your home for about a week so get rest so you can be your best for your child when they need you.

7. One thing I'm doing through this blog, taking pictures and videos, and journaling, is documenting this experience. Kennedy is 11 months old so she will not remember this - thank goodness! However, when she asks about the 4 inch scar on her spine one day or why she has to go to these appointments all the time, I can show her why. I want her to be proud of how strong she is before she ever knew what the word even meant. In my personal dictionary, Kennedy's picture and being are the definition of strong. I want to be just like her one day!

8. Don't forget chargers and batteries! Phones, laptops, Ipods, GPS', cameras, video cameras, toys, etc

9. Bring pictures from home. Tape them in places your child can see them. Kennedy has loved the pictures of her cousin and I wish I'd brought one of her cat because she asks for him every time she wakes up. "Buh?" (aka Buzzy)

Helpful Things People Have Done For Us Or Things That You Can Ask Friends & Family For:
1. snacks/drinks/meals while you are in the hospital if they are close by - healthy things are not abundant so families may really appreciate a fruit salad or another healthy snack
2. frozen meals for when you return home - you will be tired, have lots of appts, etc
3. singles for vending machines
4. VISA gift cards that can be used anywhere for anything (delivery, gift shop, cafeteria, drug store, etc)
5. time visiting, phone calls, emails, Skype chat sessions
6. Mylar balloons - Kennedy loves the ribbon and the balloon itself - has probably been her favorite gift
7. A Netflix movie from your account is easy to drop off and easy for the family to return because you just drop it in the mailbox when you are done with it!

*To MY family and friends, please understand this specific post is for OTHER TCS FAMILIES or OTHER FAMILIES WHO WILL HAVE A CHILD IN THE HOSPITAL FOR AN EXTENDED TIME. These are ideas I have come up with which may help them as they face what we have already been through. Advice from other families in the same situation, is not something I had a lot of so I'm simply trying to provide that to them. Please do not think I have not appreciated every facebook comment, blog comment, email, phone call, text message, etc because I HAVE... WE HAVE! The outpouring of love and support is in fact, overwhelming. I had no idea how many people loved my daughter. So thank you, from the bottom of our hearts for every single gesture.