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.

Congenital Heart Walk 2013

There will be a Congenital Heart Walk on April 20 this year, and we are excited! Matt and I have put together a team--Team Adriana--and we are looking to raise $1000. The money raised will go toward services for CHD warriors and their families, as well as research. Also, if you would like to walk with us, we would be absolutely delighted to have you!

Please share/donate/join the fight against congenital heart defects!

Here is the link to the main page for donations/registrations. You will have to search "Team Adriana" to five money to our team's donation pot:
http://congenitalheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1056145&lis=0&kntae1056145=9DD6CD57A492411E934334C87A5E3206

Life is Good

Things are going very well for us! Addy's cardiologist called the other day to let us know she went through the data from Addy's 24 hour heart monitor from a couple weeks ago. Dr. Baker-Smith says that the extra beats are originating from the middle of Adriana's heart, but occur less than 1% of the time. This confirms that there is nothing to worry about, because these rare extra beats do not make any difference when it comes to her heart health. Keep the good news coming!~

The girls and I got all dolled up and went to church this past Sunday, while Daddy was at work. As you all know, it was St. Patrick's Day too, so I made sure our little ladies wouldn't get pinched ;)

Doing Well

Everything is going very well here. Addy is healing and has even had some belly time! At the last appointment, an extra beat was found, originating from the middle of her heart. This is not a big deal, but Adriana's cardiologist requested a 24 hour monitor anyway. She wants to know how frequently these beats occur. Addy does not seem to mind.

4 Week Post-Op Appointment

Everything went very well at Addy's appointment today. In fact, Dr. Baker-Smith gave the go ahead to stop her meds! Her oxygen saturations are still 96-100%, and she continues to put on weight.

Again, there is always the chance that a decade down the road, she will have to have a cath to open some areas for more blood flow--but unlikely.

Addy is now cleared to travel for the first time ever, and she does not have another cardiology appointment scheduled until May!

Videos!

I was lucky enough to capture not one but TWO entertaining videos of the kids today! Enjoy!

Tateum makes Addy laughh:



Riley plays with the girls:

Goodbye, Baltimore!

Adriana's follow-up appointment at UMMC went very well! The stitches on her chest drain holes were removed, as were the steri-strips over her incision. Everything is healing quickly! Addy will still have to take diuretics for another two weeks, due to some residual fluid under her lungs, though. I wish she enjoyed the taste because it has been a battle every time I have try to give the medicine to her! It looks like the rest of her appointments will be fewer and fewer as time goes on (provided her saturations are still 100% like today). BONUS: We may never have to see Baltimore again, since Addy's cardiologist has an office in Westminster!

Remember: Congenital Heart Defect Awareness week started today and lasts until Valentine's Day! Share Adriana's story, if you'd like!

Tateum and Cameron also made Daddy Valentines yesterday, and I helped Adriana smile for hers ;)

Miraculous

The last few weeks have been stressful, hectic, emotional,ridiculously exhausting,and then finally comforting. For the first time in almost a year, when it comes to Adriana, Matt and I can finally breathe.

Today I took Addy to her pediatrician for a follow-up. The nurses adored her, as usual, since she is finally back to her old smiley self. She's also gaining weight like she should be (she is now 14 pounds, 5 ounces). When I told the nurses she was only 11 days post-op, they stared at me in disbelief. One even asked me, "Eleven days?" Yes, *DAYS*. Addy is sore in the mornings, and is still on a diuretic (which she hates the taste of), until Thursday, but for the most part she is happy. How did we become so lucky? I remember those appointments during my pregnancy--especially the first one at UMMC. The doctors had thrown phrases around like "heterotaxy syndrome" and "not compatible with life". They warned us that things could be "unfixable" and "debilitating"... and perhaps fatal. As time went on, opinions changed and never have I ever been so relieved to find out that the first doctors had given an incorrect diagnosis (I do not fault them--ultrasounds are difficult tools to use for diagnosis, even in this day in age).

Again, how did we become so lucky? Adriana's heart has adapted so well. She successfully built defenses to carry on. And, not just carry on--but *thrive*. Due to umbilical cord issues she could have died at any point during the pregnancy. Her heart could have starting failing shortly after birth. She could have been unable to sufficiently band her pulmonary artery--or perhaps worse--built up too much obstruction in the artery to her lungs. She could have had to have the Rastelli procedure. But none of those terrible things happened. Instead, for the most part, things got better. Positive news seemed to become a trend.

I cannot express how thankful I am. I am grateful for the support system we have (family, friends, doctors, nurses). I am grateful that Addy is not only with us, but she will be able to run and play with her sisters. She will be able to go to school, learn to ride a bike, get her driver's license, go to prom, and move off to college. She can be whomever she wants to be (well, maybe not a marathon runner--though we can never say for sure with her!). I am grateful that she will never remember her surgery or her recovery.

Later, we'll get out the pictures, diagrams, and doctors' notes, just to show her how truly incredible she is. Perhaps it will make her realize that she has no real limits and she is strong. She is one of the strongest people I know and nothing can keep her down. Adriana can reach for the stars and she will never come back down empty-handed.

There is always a chance that Addy will have to have another surgery. I know that. She still has 1 small hole in her ventricular septum. It could get bigger and introduce more problems. It is possible that later she might have to have her pulmonary valve repaired. However, both of those possibilities would more than likely be later in her life. They would not be a factor in the next few years. Regardless of what happens down the line, now we know she is capable of overcoming any obstacles. And God is with her.

HOME!

Addy was discharged from UMMC at 0930 this morning! She was sent home with 3 temporary prescriptions and a smile on her face. It's obvious that Addy is excited to be home and as you can imagine, Mommy & Daddy are very relieved. Thank you to all who have helped us, prayed for us, and wished us well! It means a lot!

Tateum, Cameron, Gramma, and Grandpa decorated the house for Adriana's homecoming :-)

No More Chest Drains or Wires

This morning Adriana had all her chest drains and her pacer wires removed! She also no longer has any IVs through her hands. Though she still has her central line (in her neck) she is not receiving any meds through it anymore. Tomorrow it will probably be taken out. Most importantly: she has taken a bottle TWICE already today. That's a big step because during the past couple of days, she had refused formula.

Addy is doing very well, and we hope to continue down this path.

P.S. I typed this post with one hand... I am holding our baby with the other :-)

The First Smiles

Mommy and especially Daddy were able to get a few smiles out of Addy tonight! After a tumultuous week, it felt nice to see her beautiful grin again.