Gratitude, big news, and #GivingTuesday

She was six weeks old on Friday!

We had a lot to be thankful for this Thanksgiving and it was so fitting that Hope got to come home two days before such a significant holiday. We have been home a week now and are slowly settling into a routine.  We have been having fun showing Hope the world around her.  She has had a lot of firsts in this first week home:

- her first car ride

- her first time leaving the city of Boston

- her first walk in a stroller

- her first time sleeping in the peace and quiet of her own nursery, with no middle of the night interruptions for vital checks
- her first time leaving the state
- her first time meeting Chris' family

- her first time out at a restaurant

- her first SRR board meeting
- her first trip to a bar (the Burren)

There will be so many more firsts to come.  She has been enjoying interacting with us.  We let her do some modified tummy time (she can't do normal tummy time because of her surgery) - the jury is still out on whether she likes it or not.  We also had her playing on her activity mat.  Her favorite toys are still her wubbanub and more recently her monkey, a gift from one of Chris' fraternity brothers.  Its almost as big as she is, but when she sees it she smiles at it and stares at it.  These are the beginnings of real social smiles.

Thanksgiving itself was fun, once we got where we were going.  I started the morning by volunteering at my running club's Thanksgiving day race.  I came home and showered and as we were changing Hope, getting ready to go, Chris noticed that her incision looked a little red and irritated.  We had to decide what to do.  Chris wanted to call the pediatrician, I thought we should go straight to her cardiologist.  When we left he hospital last week, he told me to email him for anything we needed, especially on Thanksgiving, as he was working.  So that is what we decided to do.  Fortunately, he got back to us immediately and prescribed some antibiotics with the instructions to use them if it started to look worse.  By the time we had our email exchange with him and waited for the prescription to be filled, we were two hours late, but being that we both thought we were going to end up at the emergency room at Children's, two hours late wasn't that big of a deal.  We had a nice time with Chris' family and had fun showing Hope off.  By the time we got home, it was clear the incision looked worse, so we started the antibiotic.  I'm happy to say it started looking better a couple of days later.

Thanksgiving is a time of gratitude, and I had every intention of writing a post on gratitude last week, but the mountains of laundry caught up with me.  Like I said at the beginning, we have so much to be grateful for this year.  Here's a list of the things / people I am most grateful for:
1) bringing home a healthy baby in time for the holidays.  Things could have been a lot worse
2) my husband and the father of my child.  Chris is my rock and I can't imagine having had to go through this without him or with anyone else.  When I was on the verge of breakdown, he comforted me. He makes me laugh when I feel like I should cry.  I am so happy we chose to live this life together and I feel so complete now that we have this beautiful little family.
3) the nurses in the CICU and in the transition unit, in particular - Stephanie, the CICU nurse who cared for her for much of her time in the CICU, in particular when she was at her sickest.  Steve - her night nurse over the weekend, who had also been our nurse before surgery.  He let me sleep and took care of the night feedings when I was staying at the hospital, giving me some much needed rest.  Karan, the nurse who pulled the feeding tube, Lauren, who suggested we take Hope off of the supplemented, high calorie milk and go back to regular breastmilk, Katie, our nurse early on, who showed such great love for Hope, and the list goes on.  These nurses were the front lines, especially in the ICU.
4) Hope's doctors:
Dr Ralston - the OB who noticed the defect and referred us to Children's.  He also took over my care when I transferred to Beth Israel and it was him and his team who noticed the Preeclampsia and decided to induce me early.
Dr Friedman - Hope's cardiologist.  He made the diagnosis.  While she was in the hospital, he made it a point to check in with us daily.  He will be her cardiologist for as long as he is at Children's and I feel really fortunate to know that this will be a lifelong relationship.
Dr Pigula - the surgeon that ultimately saved Hope's life.
Dr McKeen - Hope's pediatrician.  She is amazing.  She kept up with Hope's progress in the hospital before she was even officially her patient.  We've already been in to see her twice and she has spent close to an hour with us each time.  She has called me just to check in.  These little gestures go a long way.
5) The fact that we live in Boston and didn't have to travel to receive top notch care.  We're so lucky to have Children's in our back yard.  It made a difficult situation so much easier.
6) Our family.  We feel so loved from your messages, packages, visits, caring for Sanders, etc 
6) The support we have received from all of you.  We have heard from so many people we have been out of touch with.  Friends have delivered food, balloons, smiles, hugs, wine.   We are so touched by all of the support from everyone.   We can't begin to thank everyone

So what is the big news?  On April 20, 2015, I will run for Children's hospital on the Miles for Miracles team.  I do not need to be on a charity team - I have my own number that I earned at Philly a year ago, but I see it as the perfect way to honor the doctors and nurses that saved Hope's life.  It is the perfect way to show my gratitude.  I couldn't imagine running Boston this year wearing anything other than a Children's singlet. And today, #GivingTuesday, seems to be the perfect time to announce this news.   So for those of you who want to know what you can do, give to Children's in Hope's honor.  In doing so, you will help ensure that other sick children get to go home to their families like Hope did.  You would be supporting research to help kids with rare disorders and to improve the procedures and treatments already in place.  You may even help fund research that could help Hope in the future - we hope that someday when it is time to replace her conduit, we will be able to replace it with one made of living tissue, that will grow with her.  Come out and cheer for me on Marathon Monday and support me in my effort to help other families.  

To donate, please visit my page:

Http://fundraise.childrenshospital.org/goto/MollyCrellin