Sunday, December 19, 2010

Counting Down

Hi again, friends! Today is the day Mom comes to be with me and Dad. I'll tell ya, Dad is great and I'm super happy to have him, but there's just something about a Mommy that no one can replace (I mean seriously, just look at her here, will ya!). It will be so much fun for all three of us to be together again.

It's been a busy few days here at Boston Children's. They had told me they were going to try again to stick that needle in my belly button. Ouch the first time! But Dad said having it would make it so they don't have to keep sticking me other places. But then all the doctors and nurses got together to talk about my heart. They decided they would have surgery on me the very first day of my first winter, Tuesday (12/21).
Aunt Jen says early that morning there will be a total eclipse of the moon for the first time in 3 years, and that lots of good energy will be headed my way! She talks kind of crazy but I think it sounds nice.

Since they scheduled the surgery for a few days later they agreed they would put that needle back in my belly button when I'm asleep. Whew. Dad finally got to take all his clothes and stuff to a real room where he could take a shower and get a little rest. Thank goodness too. I didn't want to say anything but... well, I'm glad he found a better place to sleep than on the floor by me. It didn't look very comfortable.

Oh, I almost forgot to tell you! When we were flying up Dad showed me the Statue of Liberty. He said it has a lot to do with why we have special doctors and nurses who know what to do with my heart, and why we are able to get up to where they are so they can help me. I sure am glad that green lady is there!

I have lots more stories but these hiccups just won't go away and I need to get some beauty rest before Mom gets here. Ohhhh... I might be too excited to sleep!

I really loved hearing all the sweet messages from friends after my last story. It was also really nice to hear from people who have been where I am and are doing well now, like CHD Fighter, Chase, Jack (thanks for the great report on Children's Boston) and Sam (with his clever comment that together we'd have one fully functioning heart - so true). Thank you all for thinking of us.


  1. Much love and safe travel for Nikki and her dad as they fly to Boston today.

    Thank you, Matthew, (and Aunt Jen) for keeping us up-to-date on what's going on in Boston.

    We can't wait to bring you home!

    Mimi and Papa

  2. So glad Mommy is coming today!! My name is Erin by the way and thanks for the honorable mention but you deserve all the credit right now little buddy ... hey you got on a plane and to see the Statue of Liberty and your daddy is right she's one great reason why people like you and me got a great chance in this country! She's opened her doors and hearts to many great people who have changed our life!! I am praying for you and I like your Auntie's theory about the Eclipse ... I think she's totally right and all the prayers are helping you too! You rest us little guy so your mommy can come visit you today and your daddy and you can get those much needed hugs ... so glad you are doing better and hey ... I will tell you the belly button thing isn't so bad (they put mine in my head talk about an OUCHY!) it will help you a lot and anything that helps you get less needles and pokes I'm all for :) Just keep being your adorable little self and keep staying strong ... the 21st is a big day for you three and you need all the rest and relaxation you can get!! Best of Luck little guy, I've been thinking about you and glad you have time to let us all know how you are ... it's amazing you've learned to type and blog so early in life ;)

  3. This is the first time I read your blog. I am Facebook friends with Heart Parents. My son also has HLHS. There is an online support group This is a wonderful place where you can talk with other people who are starting their journey with HLHS and people who have been there done that! lol My son is 6 and has had all 3 of his Open Heart Surgeries. You can reach me on Facebook by my name Jen Beckham Good luck along your journey!!! <3

  4. Jen, thanks for your comment and for the support group info. I'm going to make sure William and Nikki get this.

    Erin, love your updates as well. Thank you!