14 Months!

This Fourth of July has been spent very differently from last years and we are thankful for that! Last year at this time, we were just beginning to have to administer oxygen to Rylynn at night. That was no fun!
This year we have spent the weekend with family and friends and are thankful for the rain that we received this past week. What a great holiday!
Here's a little update on our crazy little girl. She is very close to walking and has begun a quick step or two, but it's not official just yet. What she has lacked in mobility, she has made up for vocally!! She is such a talker!! The little video below was taken a couple of weeks ago, but you can see what I mean. I apoligize because it's rather long and I don't have the energy to edit it down.

Here are some of the real words she's saying:
Momee
DaDa
Pup Pup
More
PooPek (Czech for belly button) :)
Ish (Fish)
"Ttt" for Tobi the cat
"this" and "that" and says "I want this" alot!

And lots of "b" words, each we can tell apart
Bye-Bye
Ball
Bug
Bird
Bow

And of course she calls the horses and cows with her clicking sound, says ahhhh after each and every drink (and makes sure you do the same), and likes to say ohh! She still dances like crazy and likes to fake cough and laugh. She is a non-stop one man show and we just can't get enough.
I hope you all had a wonderful Fourth!

With love. . .

Watch ABC tonight

ABC has a new Thursday night spot, “Boston Med,” a television documentary series with “cutting edge medical cases encountered in America’s top hospitals.” It is an eight-part series, which premiered last week, and is on at 9 PM CST. Tonight’s documentary features a family that gives birth to a HLHS baby! It may be interesting to see how our experiences compare.
Hope you all are doing well and I promise to update again soon! We've had a great summer so far!

With love . . .

Good report!

Last week Rylynn had a check up with the cardiologist. Her last thorough check with Dr. Rowe had been in January, so Gilly and I were really nervous and anxious to see how her heart was doing. Once again Rylynn amazed us with an excellent check-up. Her heart function was great, her Oxygen saturation level was at 87 and everything seems right on course. We did tweek one of her meds slightly, but Gilly and I could not have been more relieved with the good report.
Dr. Rowe was so happy with the appointment that we do not have to go back for another 6 months. This news is just great.
Please keep us in your prayers, they have not gone unnoticed by Him.

With love. . .

Ry "hearts" NY

A few weeks back Rylynn had a big experience! Gilly, Rylynn and I went to the big apple with Gilly's family. Caitlin (one of his sisters) graduated with her Master's from Columbia. (Congratulations Caity, we are so proud of you.)

Rylynn was excellent on the trip, and I was looking forward to posting so many pictures and stories when we returned, but it seems that I lost my camera somewhere between Baltimore and Lampasas. Luckily, my mother-in-law had a few good ones that I'm able to share with ya'll. Rylynn slept on both legs of our flight up there. . . thank goodness. The flying was my real concern, but she did excellent. After settling in on the first day, we took a trip to BK to see Caity's apartment and some of Brooklyn. We sat on her stoop, went to a park nearby and ate some great burgers. I was thrilled to be able to meet up with my old friend, Tara who I had met in Corpus when we both lived there. It was so nice to see her and meet Chad, they live just a couple stops away from Caity and Tyler!

Monday we went on a big adventure to The Bronx Zoo. It was great. The weather was perfect and Rylynn actually seem to enjoy some of the animals. I think her favorite was the brown bear because he was taking a swim and splashing about. Tuesday we ventured out into the rain to attend Caity's graduation. I just wish the weather had been nicer so that we could have walked around the Columbia campus a little.

Hanging out in Brooklyn!

Snoozing as we get to the zoo

Snacktime at the zoo

Happy Graduation!

We packed up and headed back on Wednesday. As I said, Rylynn was great traveling and I couldn't have been prouder of her. Once back in Texas it took a little time to get back on our nap schedule and eating routine. But we're already looking forward to another big trip soon!

With love. . .

Lots and lots of Birthday pictures!

It's been three weeks and I'm finally getting around to posting a bit about Rylynn's birthday bash. We had a wonderful time with so many of our friends and family. Although we didn't take an official head count, we had around 80 folks over for BBQ, calf fries and cake! There was silly string, a moon walk, bubbles and a pinata, all the components for a great party, right?

Fun with friends!

Gilly didn't make it easy for the kiddos!

The boys... hard at work

Time for cake!!

7 o'clock power nap! Then up for more partying! :)

The night ended with a "dance party" courtesy of the girls. I think all the kids slept well that night. Thanks again to everyone who came to share this perfect day with us! We love you all!!

What a Difference a Year Makes

At this hour last year, Gilly and I held our sweet baby girl entangled with lines, tubes and wires in our arms tightly. At around 8:00 the nurses finally told us it was time to send her back for surgery. We gave her kisses and had to put her in the hands of the medical staff and in God's hands. She was facing her first open heart surgery with odds that no parent wants to hear. Gilly and I waited near the phone in the CVICU waiting room for updates each hour. First she was sedated, then her body cooled, then her chest opened. Although each call meant she made it through a critical step, my nerves could not be calmed. I just prayed for God to keep her safe.
Our family sat close by waiting with us and praying with us. At 1:30 we saw the surgeon walking toward us with his report. Dr. Forbess told us that the repair went well and that there were no complications. I was so proud of our little girl!!
It was still an hour before we were able to see her wheeled through the hallway and still another hour before we made it back to her room. She was peaceful, but her little body was overpowered with the numerous "hardware" that she would slowly shed day by day. Even though these next 72 hours were still so critical and Gilly and I stayed by her side, I honestly can't really remember the details of them. The room was constantly filled with doctors, nurses, respiratory therapist, lab folks and so on. They monitored so many things at once, it was all so incredible. I don't remember if we slept or if we ate or how we really spent that time, but we were there with her.
It was still about 48 hours before she was extubated and could try to eat. But when she took that first bottle, the nurses and doctors were so thrilled as were Gilly and I. It wasn't long before we could hold her again and even change our first diaper! (Which was a total disaster.. I had a mess all over the wires for those poor nurses!)
Rylynn's recovery was super swift (in HLHS terms) and she seemed to accomplish each milestone just before she should have. God truly had a hand in her recovery and growth. So today I can once again thank Him for our blessings, we have a perfect angel because of Him.
Cinco de Mayo will always be a special day in our family, we have something so special to celebrate!!
With love. . .

Happy Birthday Rylynn!

Today is our sweet baby girl's birthday. We are so blessed to have her in our lives. We will be celebrating all day and I will give a full post soon.
With love. . .