Your Story: Ava’s Perfect Heart ❤

What is perfection?  Culture would often define it as the absence of trial and defect, however in the dictionary you will find perfection defined as “the state of being complete”.  Miss Ava’s story shows us how the Lord often makes way for the presence, not the absence of trials in order that our lives might be complete.  God grace sustained Ava’s fragile infant body as it’s endured more in her first 22 months than most do in an entire lifetime!  From it all, Ava emerged with an infectious smile and an ever-grateful mama (Kaila) who testifies “it broke us in the best way, I truly feel blessed daily that she is mine”!  Join us as Kaila shares more about how Ava’s perfectly-imperfect heart made their family complete!

Gracious May: Welcome, Kaila!  Thank you so much for joining us today!  For readers who don’t know your little family, please take a quick moment to introduce yourself.

Kaila: Hey Guys! I’m Kaila, most-commonly known as “Ava’s Mom”.  I’m going on 5 years of marriage to Chandler, our family’s keeper.  In December 2013, shortly after being told we would need the help of fertility to conceive (due to PCOS), Chandler & I were shocked and elated to find that we were expecting!  Today our miracle girl, Ava Monroe, is almost two…  And we have a baby boy on the way (due August 2016)!

I’m currently finishing up with my degree in Echocardiography (ultrasound of the heart) and have an unhealthy obsession with Interior Design.  I keep Chandler busy with projects of my own whenever he has a spare moment.   Both Chandler and I are children of interior designers so design is in our blood.  

Gracious May: What were the heart defects that were discovered while Ava was in the womb?  What did that final trimester look like for your family?

Kaila: During my pregnancy with Ava, as I was approaching my final trimester, our doctors discovered that she had a compilation of heart defects known as Shone’s Complex.  Shone’s Complex affects the size and function of the left side of the heart.  In Ava’s case Shone’s Complex manifested itself in the form of valve abnormalities, VSD’s, and a coarctation of the aorta.  We only told immediate family about Ava’s heart defects at that time.  It was a lot to digest and I just wanted to maintain as much “normalcy” I could.   To be honest, those last few weeks of Ava’s pregnancy were such a blur, but we were also full of hope. 

Gracious May: Once Ava was born how long did she remain in the Cardiac ICU?  What were some of the biggest challenges you faced there?

Kaila: Ava had a very long journey in the Cardiac ICU.  She had open-heart surgery at 6 days old which went beautifully!  However, the complications that came along with CICU recovery threatened her life countless times.

What was meant to be a 10-day-recovery-stay in the CICU turned into 100+ days.  Ava faced many complications: a blood clot which threatened the loss of her leg, GI issues, and, most severely, airway damage (due to constant extubations).  The airway damage resulted in the need/last resort of a Tracheostomy.   That was a very dark place in my faith, but family support and the outpouring of love from our community constantly lifted us up and stood in the gap for us.

Gracious May: Since bringing Ava home from the CICU, what are some of the biggest victories you’ve celebrated?

Kaila:  Wow, what haven’t we celebrated?!  On top of the many exaggerated celebrations of the obvious firsts, Ava came off of the ventilator the same month we came home.  She then amazed us (and her doctors) by becoming 100% medication free!!  

We celebrated Ava overcoming muscle atrophy, and graduating physical and speech therapy.  We celebrated her first oral meal (at 13 months old).  Ava also had her Gtube removed this year.

She learned to plug her trach with her finger so that we could hear that precious voice… music to my ears!!

And Ava was deemed “heart-healthy” last month.

Ava is now 22 months old and thriving!  She is so imaginative, it’s hard to catch her in between her imaginary/yet very serious phone conversations.  She loves to dress up and one of her very first words was “boot”.  Her favorites are her Gracious May Bunny Boots.  She would wear them everywhere if I’d let her!

Gracious May: Since Ava was born, you have doubtless had the opportunity to connect with many moms who are walking in the same shoes.   There might be a mom reading this who is fighting alongside her baby in the CICU/NICU.  How would you encourage her right now?

Kaila: To all the new trach mamas: I know it feels like you traded your perfect squishy baby in for an awkward robot/transformer version, but I promise, your wee one will surprise you.  You will find wells full of patience, energy, love and understanding; wells you didn’t know existed.  Never stop fighting for your child and what you know they are capable of.  Connect with other advocating parents who have been in your shoes, you will need them. ❤ Congenital Heart Disease has changed us as a family.  It broke us in the best way.  I truly feel blessed daily that I get to be this precious girl’s mama.

While the miracle I prayed for didn’t come exactly the way I expected it, by just looking at Ava I know that God answered the cry of my heart.  I’m grateful for the beauty, the pain, all of it.  Now, through her life, I am able to offer hope and encouragement to other heart moms and trach moms going through similar situations.

Gracious May: We have definitely loved watching Ava grow up in her Gracious May!  Can you tell us what Gracious May means to you and why you (and Ava!) enjoy our shoes so much?

Kaila: I discovered Gracious May while in the hospital (which is where I purchased her first pair of Gracious May booties).  Shopping for baby clothes helped me imagine doing the un-imaginable, which was bringing Ava home and dressing her up (what every girl-mom dreams of)!  Gracious May was one of the first shops we ordered from and the positive/uplifting message you promote is truly an encouragement.

Gracious May: Thank you so much for sharing your story with us, Kaila!  Will you tell readers how they can follow you from here on?

Kaila: Thanks for letting us, we love spreading CHD Awareness and offering hope to those in similar situations!  You are welcome to follow along our crazy life via Instagram: @kailabiagini.  We love and appreciate those who celebrate Ava’s victories and cheer her on along with us!

As of July 12th, Miss Ava’s trach was successfully removed!! This miracle girl is not only heart healthy, but now breathing on her own with absolutely no assistance!!!

Would you like to have your story featured on the Gracious May Blog (birth, adopotion, NICU, etc.)?  Email us with a few sentences that describe the experience you want to share about and we might feature you!

“And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.  Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.” 2 Corinthians 12:9-10