Please say a quick prayer…

A dear friend of mine is sitting in the PC-ICU at MUSC at this very moment going through exactly what we went through only 8 weeks ago. We became friends as she discovered her daughter has HLHS and a mutual friend connected us. She is from Augusta and traveled to MUSC to have her daughter and have the same doctor operate on little Emerson.

We were so blessed to have each other to lean on throughout our pregnancies and I can only hope that I have somewhat helped her as she is going through this trying time in the hospital. It is something that no one can prepare you for, but knowing someone has also been in your place helps.

Little Emerson is out of surgery and seems to be doing well at this time. The next 48 hours are very crucial.

At times it is difficult for me to talk to her and read her blog because I know exactly what she is talking about and exactly what she is going through. It takes me right back there and only reminds me that Mary Clare will be there again in December. Please continue to pray for us and little Emerson. This is such a difficult diagnosis and we aren’t the only parents going through it.

We know one day our little Mary Clare and Emerson will be great friends. We can’t wait for them to meet!

Baby Mary Clare 8 weeks old…

Mary Clare in the christening gown…and if you look very closely, you can see Mel’s baby cross necklace shining.

…and McCanless, too!

Steve Roos in Hartsville took these AMAZING photos! Thanks, Steve! Great work, as usual!!

Gamecock Club Football Season Kick-off!!!

McCanless and Daddy went to the USC Gamecock Club of Darlington County season kick-off celebration again this year. We can’t wait until the first game!!
Go Cocks!

Nice looking Stadium Pants, Dad!

Yes, Hartsville has a Rodeo!!

Mel and McCanless went to the Antioch Rodeo last night! (I decided it probably wasn’t best for Mary Clare to go just yet, maybe next year.) It isn’t quite as fancy as the Texas rodeo my friend Lauren just posted on her website with a mechanical bull for the kiddies and all, but it will do for Hartsville. They make our kids chase a sheep with a pink ribbon tied to it’s rear end. The first kid to grab the ribbon, gets a free beer…just kidding, I think Mel said the kid got $10.00.

Wonderful news…

Today McCanless and I took Mary Clare to have her portrait made with Steve Roos. In the midst of washing our christening gown, finding Mel’s baby cross that McCanless wore on her baptism day and preparing for the photo shoot, I realized that we haven’t spread the wonderful news on-line of Mary Clare’s baptism.

She was baptized by our rector and pastor at St. Bartholomew’s, Father Michael Ridgill at MUSC on July 1st, the day before her first surgery. Mel and I both felt strongly about baptizing her before her surgery and Father Michael was kind enough to travel down to Charleston for us for that special day. (We are also extremely grateful for his weekly visits to be with us, pray with us, and offer communion during our entire stay in Charleston.)

While standing in the huge open PCICU, with monitoring beeps sounding, other “heart babies” all around and nurses passing by, our sweet Mary Clare lay paralyzed with IV lines and tubes encompassing her tiny body. Father Michael said very few precious words and quietly baptized her with water simply given to us by the PCICU desk staff in a styrofoam cup. It wasn’t glamorous, she wasn’t draped in a long white christening gown, we didn’t have family and friends surrounding us, only the two of us with Mary Clare. It was, however, a calm peaceful moment that left us feeling uplifted and extremely hopeful.

I’m hoping we will soon have some sort of celebration for her baptism, as we did for McCanless, to officially mark this monumental occasion. We certainly have such reason to celebrate!

Not alone!!

Mel and I both discovered early on in our HLHS journey that you can research the internet too much…way too much. When we first learned of Mary Clare’s CHD (Congenital Heart Disease) we did just that, way too much web-surfing on the matter. It was overwhelming, upsetting, and very frightening. Most information on HLHS, in specific, is very discouraging and we now know that much of what is out there is inaccurate.

For the most part, I don’t research HLHS anymore…Mel and I both had a crash course while we were in Charleston and I think we both learned way more about HLHS, the heart and heart surgery than we even wanted to know, but it can be a source of comfort/support to learn about other children facing the same struggles as our sweet Mary Clare.

I found the greatest website that supports CHD and is raising awareness. A friend (I met at MUSC who also has a baby with a CHD) sent me a link and told me that she knew the little boy whose photo is on the home page. He has HLHS. It displays a photo of him at 12 months and then 10 years later!

It’s pretty amazing to read the stories of these children and see that they are leading “normal” lives and doing great! (Go to “Stories” section from top menu bar) Maybe one day when we are in the clear and after her third surgery, I’ll post Mary Clare’s story!

Go to www.little hearts.net

Just the two of us…

Mary Clare and I packed up and hit the road again yesterday for a check-up at MUSC. I think I’ve finally mastered the road trip with a newborn. PLANNING makes all the difference, and a quality 30 minutes of feeding, changing, entertaining and baby stretches in the car PARKED in the garage prior to departure helps too!

Good news! Mary Clare is now a healthy 9 lbs 2 oz and doing great! We return for an echo and ekg in 2 weeks. (As usual) She also has to have another hearing test.?? For some reason, babies on heart/lung bypass machines are required by DHEC to have a specific round of hearing tests over the course of the first year??!! Her hearing was tested in the hospital before she was discharged and everything was fine. However, I question the results when she peacefully sleeps for hours while McCanless sings at the top of her lungs, screams, barrels through the house, etc., etc everyday.

Mary Clare is eating a tiny bit more, but what I’ve noticed lately is how much more aggressively she is eating. Those typical baby grunts and gulps are great to finally hear!

The Ballerina Movie

Here is McCanless, my little drama queen acting in a “movie.” Not sure what kind of movie stars a dancing ballerina passing out and being thrown into a trash can??! (I swear I monitor and limit her television viewing)

No Swimmies!!

I was finally able to see McCanless swim without her swimmies this weekend. We were in Charleston when she learned how to swim this summer, and I haven’t had a chance to see it yet. Here she is, my little fish! It amazes me how confident she is in the water. She even loves swimming in the deep end! Which happens to be the entire pool, but she insists on going beyond the red rope to the, “real deep end.”

Mary Clare…7 weeks old

Mary Clare loves staring at the fan and will even smile at it. It is so funny to watch her. She will stretch, and arch and tilt her head to see it.

Apparently, McCanless loved the fan too! This is her at 2 months.

This is a funny photo. It was just before she sneezed…I wanted to show how well she is holding up her head. She is growing so quickly and getting so strong!