Nicolle and Baby Q's Story "Thankful Today, Now, This Second"

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Introduction

Living present in the moment, can be one of the most essential keys to a free life of joy. We have so many beautiful things to be thankful for when we really look for them, instead of looking at what we don't have. I try and remind myself the majority of what we worry about actually never happens, and when we do worry, it steals the present. Think of all we have or could miss out on by not living in the now!

Relating to this, I have thought to myself, "How could I go on living happily if one of my children had a life threatening illness? Would I live in the present even more?" That's why when I meet people like Nicolle who are truly living present even though her child has been dealt with many major health issues - it gives us hope.

So how could Nicolle live present and happy when her baby was born with a variety of serious health defects, including her first open heart surgery at the age of 7--days-old?

Baby Q and Nicolle

"Before Baby Q was born, she had severe brain and heart defects. After she was born, we also found out she had a cleft palate. At 4-days-old, she had her first cardiac catheterization. During this they accidentally punctured her heart and she actually died on the table and had to be revived. At 7-days-old, she underwent her first open heart surgery,  and by the time she was 5-months-old, she had survived three cardiac arrests, four heart surgeries, and eight cardiac caths," says Nicolle.
 

Unfortunately, Baby Q now battles a heart and lung disease called pulmonary hypertension as a result of her heart surgeries. The pressure in her lungs and heart is extremely high, and because of this she is oxygen and medication dependent. "She does not eat food and is feeding tube dependent. Her stomach is also partially paralyzed and she vomits almost daily as a result," says Nicolle.

"The thing I love the most about her is her bravery and her amazing attitude. She is always content, no matter if she is comfortable at home, or battling from a hospital bed. We never expected her to do as well as she is doing developmentally. We had therapists tell us she would never walk or catch up to her peers. Although she hasn't quite caught up, she is well on her way - she is very determined and so happy," says Nicolle.
    

"I want to tell Baby Q's story because approximately one out of every 100 babies are born with a congenital heart defect. If we can survive and be happy through our situation, which is one of the worst case scenarios, I want to give that hope to other families, no matter what they are going through, there is hope. I usually would freak out about stressful things, but with this situation, I credit the Holy Spirit in giving me grace and joy through it all. God has given me a peace about it."

"The advice I would give to others going through something like this or just a tough struggle of any kind? At times I used to look for a prognosis, but now I try and focus on the present instead. Find out what's going on that is good today, now, this second.  Live in the now. There may never be any kind of prognosis, no matter what you are going through. This may not have been the life we would have ideally chosen, but waking up each day and seeing the gift she is and that she is so happy all of the time carries us through. She has been God's gift to us in countless ways, and we know He is taking care of it. If we are always trying to figure out our struggles and "fix" things that may or may not happen, life's precious moments will pass us by."

--By Shannon Bacon

Nicolle and Baby Q "Where are They Now"

7 billion ones randy bacon photography nicolle fernandez and baby q

Baby Q's mother Nicolle shared their heart wrenching yet positively beautiful story with us on November 26, 2015. Where are they now? Nicolle says, "Drum roll please.....Q was accepted into the special needs school I really wanted her to go to! She barely overqualified for motor skills, but her speech is severely affected by her cleft palate and that got her a spot in school! She was much above average in the social skills department at the 98 percentile, and I'm sure anyone who has met her can agree she's quite social!
We are so excited for this opportunity for her. A special bus equipped with a nurse will pick her up and drop her off and she will carry a baby sized oxygen tank on her back while she plays and learns. (She picked out her own outfit for this special occasion!) 

As far as a health update, her echo hasn't gotten any better or any worse, her pulmonary pressures are still high (57 for my other pulmonary hypertension mamas who are curious, better than 110 two years ago). Her cardiologist says it's good considering how bad off she was doing. Her chest still sounds like a "washing machine" when he listens to her. We will probably send her for cardiac cath number nine over the summer to dilate her right pulmonary arteries again and to dilate her stent. We can now take her off the oxygen four hours a day, which is great because now that she knows the feeling of freedom, she refuses to wear it!"