January 22nd Cardiology Appointment

It's always good to hear the words "beautiful repair!"  That is exactly what the sonographer and Adriana's cardiologist said today! Everything still looks great almost 3 years later. Though Dr. Macias wants to keep an eye on her resulting sinus node dysfunction (which sometimes occurs due to scarring from surgery), he feels confident enough in Adriana to change her check-up occurrences from semi-annually to annually. He will also watch out for any recurring obstruction in her pulmonary artery--though nothing has changed since her open heart surgery in January 2013. It is possible that down the road, scarring could get worse, and it could lead to obstructions. However, as of right now there is nothing to be concerned about, according to the echocardiogram she had this afternoon.

This was a huge day for us. Going to annual appointments is something we never thought she'd be able to do, when I was pregnant with her. We are so blessed. So thankful. 

Woot!

Dr. Baker-Smith says there is still no change in Addy's heart function since the repair--hallelujah!  She's growing like she should be, and her oxygen sats were at 98% .

We scheduled Addy another appointment for February for turnover, since we will be moving sometime in the spring, and will most likely have to switch to a different cardiologist :-/

Another trip to Baltimore

Adriana was not happy when she was first brought back to the cardiac surgical unit at UMMC--she's terrified of anyone in scrubs or a white coat. She fought getting an I.V. and even ripped the first one out of her hand, forcing them to place one in her foot.  She then proceeded to fight sedation. Addy has always been a little scrapper though ;)

She finally gave in, and the echo plus the EKG took a couple hours. Dr. Chaves was able to get very good views of Addy's "problem area" (her pulmonary artery and branches), and told us some good news. Her branches are completely clear, and the mild narrowing of her PA has not worsened. Dr. Chaves said she has mild leakage in her valve, but no more than any normal person would have.

So, to recap, we're thanking our lucky stars that the repair has held up :-) No surgical procedures or meds are needed at this time. Adriana probably won't have to go see her main cardiologist for another 6 months, unless she wants an in-person follow-up.

<3

Look how comfy she was ;)

Long time, no post.

We haven't had anything to update everyone about until today.

Before I get into the technicalities, let me just assure everyone that Adriana's heart function is looks great. Her oxygen saturation is at 98%, and she is having zero trouble keeping up with her older sisters. By looking at her, no one would ever guess she was born with multiple heart defects.

And now, for a more in-depth look at what's ahead for Addy:

Addy was not very cooperative during the echocardiogram today. This is not a new thing, but she is now older, stronger, and able to wiggle away from the doctor or a sonographer performing it. Though today the sonographer and her cardiologist got some good footage of her heart function, her cardiologist would prefer to have a better look into her pulmonary branches, since that is really the only area she foresees any future issues with. During her open heart surgery, Addy's surgeon did some patch work in her pulmonary artery, opening it up a little more than it had previously been, to ensure adequate blood flow to her lungs. It is possible some of that tissue obstruction (stenosis) could come back. However, since there is no leaking in her tricuspid valve (and the fact that her oxygen saturation % looks great), that indicates that she does not have a lot of built up pressure in her pulmonary branches. Of course, Dr. Baker-Smith always likes to cross her T's and dot her I's, so she is scheduling another echocardiogram for Adriana. This time, she will be sedated--that way, they can take their time and take a good hard look. We do not have the appointment date yet, but it will probably be in a month or so.



If Addy's pulmonary stenosis becomes an issue again, in most cases, they can open those areas back up with a cardiac catheterization (heart cath). That means a doctor will insert a long, thin, flexible tube with a balloon on the end, called a catheter into a blood vessel in her groin (upper thigh), and thread to her heart. They will then balloon the area to open it up more. Or, they may have to insert stints. There is a very small chance that they would have to do another open heart surgery.


Hoping and praying for the best. Adriana has surprised us all so far, and I am optimistic she will keep doing so.


We did a photo shoot with her Heart Hero cape last night. Enjoy ;)

Cardio Check-Up

Dr. Baker-Smith says Addy's repair still looks phenomenal! She does not see any problems that may arise any time soon. She said they would continue to monitor the slight stenosis in her pulmonary artery, but she is hopeful that even if it requires intervention in later years, it will most likely be done through her groin (Cath).

It's so hard to believe how great things are going :-) We are so blessed.

Addy's Almost Invisible Scars

It's amazing--Addy is only 8 months post-op and her chest scar, as well as her drain tube scars, are almost invisible. :-)

Happy Birthday, Adriana!

What a year. I'm feeling a bit emotional today, thinking about what Adriana has gone through. I feel that she and the rest of our family are so blessed. Though we had a very difficult time from the time she was 20 weeks gestation until she was around 7 months old, every second was worth it, in order to get to this point. Addy is thriving and we couldn't be more ecstatic!

Happy Birthday, baby girl. We love you  <3 p="">

Addy at her first birthday party

Cecilia & Addy at her birthday party ;)

We're Home

Matt, the girls, and I took a 12 day trip to Sacramento, CA, courtesy of Matt's Uncle Don and Aunt Marsha! Though it was over 100° for most of the trip, we had a nice visit. There was a lot of swimming, grilling out, as well as a whitewater rafting trip (thank you again, Aunt Kim & Uncle Merrill) and skeet shooting. Adriana was baptized in Grandma Great's church among many friends and relatives, too.

I hope everyone had a good 4th of July--we did! As much fun as we had, we are thankful to be back home, working on getting back to our routine.

Routine Cardio Check-Up

Addy's heart is continuing to function properly! The VSD at the apex of her heart is still not closing, but it has virtually no bearing on her well-being. The cardiologists are not worried about it posing problems later, either. However, there is still a gradient in her pulmonary artery (the artery Doctor Kaushal had to clean up, due to tissue obstruction). Luckily, it does not pose a threat right now. Cardiologists will monitor it for the rest of her life, and make sure that the gradient does not get worse. If it does, it will most likely be a slow process, and eventually she'll have to have some type of procedure (hopefully through her groin).

As for the bump on her sternum, it seems to be a bone callous. It's totally normal to develop a bone callous after a break, and though Addy will have it for the rest of her life, it will look smaller as she grows. More subcutaneous tissue will cover it as time goes by. No matter what though--she's beautiful and always will be :-)

We are counting our blessings!

A Formal Thank You

I just wanted to formally thank everyone who contributed to the Congenital Heart Walk for the DC metro area! Team Adriana surpassed our fundraising goal, which was $1,000. There are still two more donation days left and we have raised $1,455! Friends, family, and even individuals whom we do not know donated anywhere from $25 to $200. Thank you.

People have donated a whopping total amount of over $56,000 for CHD warriors, their families, and research efforts! This is a  reminder that there are charitable, and caring people in our lives, as well as all over the country. Though our family seems to be winning the battle over our little girl's congenital heart defects, we feel compelled to spread awareness, and lift up those who will fight the same battle in the future. Thank you so much for helping us do so. Words cannot describe what it means to us and families like ours.