Help us give back!

As we start preparing for Molly's hospital stay next week we are reminded about how physically ill we feel walking back into the hospital, walking her back to the OR, laying her on the table, walking away from her while trusting the people that are about to take care of her for the next hour and a half or so while we head to the surgical waiting room, one more time, choking back tears because I refuse to cry. We will then speak to the nurse liason who will then ask for our cell phone numbers, tell us there is coffee in the back. Explain to us that if they haven't heard from the OR in an hour they will call back. Once the surgeon is done he will come out to talk to us, all the while I want to cut her off and tell her we know the drill and we've done this before...too many times before. Jay will probably try to get internet connection on is ipad as I just sit and people watch, trying to listen to the conversation of the people next to us and hear from Jay that he's hungry even though I'm sure we'll stop at Dunkin Donuts on our way in. Most people can't eat when they're nervous but not Jay. No wonder why people have a hard time figuring Molly out. Look what I'm dealing with :) The surgeon will then come out and talk to us with his "god like" attitude and tell us so matter-of-factly how it went. We'll make our way up to the 8th floor where we will wait in the CICU waiting room for Molly while they try to calm her down...my guess is with some kind of sedation that probably won't do much. She needs her blankie and her parents. Even though we get nervous, sick to our stomach and anxious we know that she is in the best possible care. We have to keep reminding ourselves that she's been through so much more...so much worse. Here is the proof. Molly's stats:

* Heart surgery at 8 days old
* Bypass twice with her 2 open heart surgeries
* 3 trips to the cath lab
* had a breathing tube down her nose/mouth for 5 months
* Battled a blood infection
* Chylous Effusions
* IVs literally from head to toe
* Trach
* G tube
* Pacemaker
* Fractured Femur
* Sulfa allergy (we found this out the hard way)
* Hypothyroidism
* Narcotics tolerance & withdrawals
* Countless blood transfusions, chest tubes, echocardiograms, EKGs, fevers, doctors appointments
* Been on as many as 22 or more different medications at one time (she was on 22 when she came home)
* Few EEGs
* We are approaching our 5th bronchoscopy and our 8th trip to the OR.

But through it all she has fought like no one else I know. She is a happy happy little girl. To look at her you would never know there was anything wrong until you take off her shirt and see that perfect like down the middle of her chest and all of the marks from the chest tubes, pacing wires, etc. How many people do you know that have been through all of this and still wakes up every day with a smile on their face? If it wasn't for Children's Hospital Boston and all of the wonderful doctors and nurses that have cared for Molly she wouldn't be that baby either. I can't explain or make anyone understand how wonderful they are and how lucky we are to have them 40 minutes from our house. I wish every state had a hospital as wonderful at CHB because no child deserves to go through all of this and not have the same outcome. I said to Jay tonight that nothing bothers me more than when people don't realize how lucky they are and how great they have it. I know we weren't dealt an ideal hand and there are times I feel sorry for myself but I also know that there are people worse off than we are. My point is that we want to give back to Children's and with the only way we know how right now is doing the NStar Walk in June. We're not asking for a large donation because trust me we know that money is tight. Even if you give $1. A little goes a long way and dollar after dollar starts to add up. Even if you can't donate know that we still love you for loving Molly and you will always mean the world to us!

If you are interested, here is the link:
http://howtohelp.childrenshospital.org/walk/team/LK0110.htm

As always, thank you for the support!

Kerry