To most families, the month of February means Valentine’s Day. A day where we buy silly cards and gifts for our partners and help our babies decorate mailboxes and valentines. This has been my February for as long as I can remember. That is until I met Jack Henry Hayes and he gave me yet another reason to love this month. February is National Heart Awareness Month or American Heart Month. To heart families, February is a time to reflect, to fight, to raise awareness and funds and in hopes of doing just that, I’d like to introduce you to my dear friend Michelle.

I met Michelle while I was in college and was introduced to Donn’s Depot, the bar she has worked for the last 17 years. We were fast friends but looking back I think everyone could say they have that same connection. We would catch up quickly when I would visit from NYC and when I moved back to Austin and started dating my now-husband Michael or “Boca” as everyone calls him, I would learn that Michael and Michelle had been great friends for even longer than I had known her. This bar and these relationships would eventually lead to a small piece I wrote for Tribeza back in 2012 and our wedding afterparty. It’s that’s special and she has a lot do with it. The only way I can describe Michelle is as a big, inviting, hug. She’s warm, kind, and nurturing, even from behind a bar when dealing with drunk idiots. That’s hard to do.

When she was pregnant with her second baby, son Jack, she was open and honest from the beginning about her son’s heart condition. The diagnosis, the next steps, the sacrifices. It was eye opening, devastating, and yet she was so hopeful and positive, we all knew the outcome was going to be ok. Pregnant with Bowie at the same time, I often thought, why Michelle? Why not me? Which makes this post and your awareness so important. There was nothing that Michelle did or didn’t do that could have avoided this outcome but she chooses to see the positive despite all the hardships Jack and her family have gone through. As she says, she refuses to stop accepting great things for her son. That’s love. That’s what February is all about. This is her story.

At the end of this post, you’ll find resources for families going through the same thing, ways you can get involved, and ways you can support your friends who might be going through something similar. We hope you’ll join my family along with Michelle’s on Saturday, May 5th for the Congenital Heart Walk. Sign up here.

1. Tell us a little bit about you and your family. 

I met my husband, Justin, in 1998 while we were both working at Hula Hut. He was the kind, funny, handsome bartender who spent most of his time taking motorcycle trips or traveling the world. We started dating in 2000 and tied the knot in Mexico 8 years later.   We welcomed our first baby, a daughter named Rêve Violet Venét in 2013, and our second, Jack Henry Hayes in 2015.  Jack is our heart baby.
Nowadays, Justin works in commercial landscaping as a branch manager for Cleanscapes and I’ve been bartending at Donn’s Depot, longtime Austin music venue & neighborhood bar for 17+ years. We live in Manchaca with our little darlins.

2. How far along were you in your pregnancy when you found out about Jack’s heart condition? 

I found out something wasn’t right at the 20 week ultrasound/anatomy scan.  Everything looked and seemed fine during the scan- I  received a thumbs up from the tech, and I followed up immediately with my normal Ob/Gyn.  I spent my time waiting for the doctor sending text messages to friends and family with the newest ultrasound pictures of my little man. His little face was so cute!
After a long wait, my doctor came in and told me they detected some abnormalities in the baby’s heart, and I would need to follow up with a Maternal Fetal Medicine Doctor and Pediatric Cardiologist for confirmation. It felt like a gut punch. He got me an appointment with the MFM thirty minutes later. After another ultrasound my unborn son was diagnosed with Hypoplastic Left Heart Syndrome (HLHS), a Congenital Heart Defect where the left side of his heart didn’t form correctly, it was abnormally small and would be unable to sustain normal heart function- he would be a single ventricle baby.

3. Do they have any insight into what causes this?

When we were diagnosed, I had the same question. I was so concerned I didn’t do something right: did I take prenatals long enough? Did I have a drink before I knew I was pregnant? Was my age a factor? Why MY baby? At the time, the doctor said it was like a “lottery”- there was nothing I did or didn’t do- it’s just something that happens. While exact causes are unknown, some research suggests genetic mutations (recessive and/or dominant) were passed down.

4. Were you left with time to process or did you have to go into immediate action with a plan?

Almost immediately the doctors directed us and we developed a plan of action. The next 20 weeks were crammed with Fetal echo appointments, phone calls, research, decision-making, trips to Dallas, preparing for birth, packing, moving, etc. All the “normal” pregnancy luxuries that I looked forward to like Pinteresting newborn photo ideas or decorating a nursery were not priority, or even in the picture- there was lots of work to do.
As far as processing- I think it is a work in progress, I’m still processing. I don’t know if that will ever go away. I know the diagnosis, I know the potential prognoses and I am ready to fight for my son. Having zero control and no guarantees on how this will progress-I’m still processing that. I’m trying to accept that.
There are moments in your life where there is a definite before and after- there’s almost a tangible line where you can measure and compare the differences. Those moments are etched in your mind: when a parent dies, when a child is born, 9/11 are just some examples that come to mind. This was one of those moments. Life before diagnosis, and After. Everything changed.

5. What was the plan?

After discussing the options with our Austin Pediatric Cardiologist, we decided we would head to Dallas for birth and treatment.  The Children’s Medical Heart Team developed the plan: We would move to the Medical District a month before my due date.  Jack would be born at the new Clements hospital and be immediately transported to Children’s Medical Center after being dosed with Prostaglandin to keep his Fetal heart valves open. Dr. Joseph Forbess and the cardiology team would take over from there and decide how to address his CHD- there would be 3 open-heart surgeries altering his cardiac anatomy over the next several years.

6. You relocated to Dallas for his birth and post birth. How long were you there? What was life like during this time for you and your family?

From start to finish we were there for just over 6 months. Despite the circumstances,  it was oddly normal living in Dallas. Our families were in the area, I had lived and spent lots of time in the Dallas area so it wasn’t so foreign. Before Jack was born, Justin would live/work in Austin during the week and head up on the weekends. I tried to get lots of fun time with Rêve since her birth world was about to be rocked: trips to the zoo, Klyde Warren Park, the Perot Museum. Afternoons with family and friends at the Farmer’s Market, Dallas Aquarium, Reverchon Park or swimming- anything to keep her happy and engaged.  I wanted this experience to be as calm & easy as possible under the circumstances and I wanted to soak up every moment with my first baby. I wasn’t sure what the next several months looked like.

7. Who was your support system?

The Short Answer: Our families, friends, friends of friends, churches, neighbors, co-workers, Heart families, strangers, nurses, medical professionals and non-profits organizations all had a part in lifting us up throughout the process.
The long answer: Our parents cared for Rêve day and night those first 6 weeks after Jack was born. We would come home for dinner, but the brunt of it was on them.  They sacrificed their time, sleep, health, social lives and normalcy to take care of their babies and grand babies. I can’t imagine doing this without them.
We had family and friends come and check in on us, host fundraisers, send letters, cafeteria gift cards and thoughtful trinkets for Rêve. We had a church send us prayer shawls and a received quilt handmade by a stranger.  We had neighbors water our plants and care for our cats. Our jobs were extremely supportive and stood by us without question. A non-profit provided us with a furnished apartment two blocks from the hospital. And this is just a few examples of the awesome support we received!! I could fill a book!

8. Tell us about Jack’s condition and what it has involved since he was born.

Jack would have two open-heart surgeries in Dallas: the Norwood- the first and most difficult surgery- at 1 week and his Glenn, the second procedure at almost 5 months of age. The final surgery in the series, the Fontan, is expected to happen when Jack is between 3-5 years of age. Of course this is if everything goes according to plan. 
The first 40 days of Jack’s life was a crash course in CVICU/NICU life: chest tubes, blood transfusions, surgical rounds, a never-ending parade of miracle workers tending to his needs.  Every little victory was celebrated with caution- things can change quickly with little warning in the CVICU.
Before we could bring Jack home, we needed to learn how to take care of him. We were quizzed on medicines and warning signs, we learned how to drop an NG tube and how to administer meds. After we passed a series of tests, we brought Jack back to the apartment. Those first days at home were rough. Justin was back in Austin and it was now my job to take over where the nurses left off. We were sent home with a scale, charting material, a pulse oximeter and a stack of prescriptions and instructions. 
Every three hours was a 1hr feeding via NG tube followed by an hour of holding him upright. (You had to be careful about how you held him since he was on sternal precautions which upped the stress factor.) The remaining hour between feedings was spent charting, cleaning up supplies, pumping milk and prepping meds. 
And sleeping. 
I spent the first several months wondering if I was a good enough mother to my child- If I could give him what he needed. I prayed and begged and followed all the rules and did everything they told me. And it was hard. But as time went on and I learned the ropes, it wasn’t so bad. My son was stable, he was gaining weight, he was happy and he was mine. Eventually, our new normal became a little bit easier, almost routine. (And he made strides- my tiny baby who was never supposed to breastfeed became his cardiologist’s first ever fully-breastfed baby going into the second surgery! YES!!!!)
Seventeen days after his second open-heart surgery, we headed home to Austin.

9. I have had the pleasure of meeting Jack and seeing his big personality in real life. If you met him today, you would have no idea the life he has already lived. What does this condition mean for the rest of Jack’s life? 

(Thank you!!!!  He’s a dream come true!)
Jack will have his third surgery (& final in the series) sometime in the next few years if everything goes as planned.  From there we will take it day by day.  There is no cure for HLHS. The research/discoveries over the last few decades have made it possible for kids like Jack to have a chance. Were watching the first generation of surviving HLHS Kids grow into their thirties while some kids require heart transplants- we just don’t know. So we will see. We know kids with HLHS will tire easily, self-limit, and shouldn’t play contact sports.  Jack will also have regular trips to the cardiologist for the rest of his life.  We’re hoping with biomedical technology, stem cell research and the many research projects focused on HLHS, there will be a cure for him someday.

10. How did you explain all of this to your young daughter? Do you think she understood? Is she changed from this experience?

Rêve was just a little bit older than 2 when we moved to Dallas. She knew she had a little brother at the hospital and we needed to take care of him. She met him once through a hospital transport incubator and again after his surgery when he was 5 weeks old and transferred to the General Heart floor. (She couldn’t see him in the CVICU)
She knew brother’s heart needed to be fixed and he would be in the hospital so the doctors and nurses could take care of him. We bought her a stack of books about heart surgery & “zippers” (scars), a medical kit and nurses scrubs to start a dialogue & encourage conversation. She says things like “stethoscope” or “meds” like that’s something any four year-old should know.  She knows Jack’s heart is special and that he’s had surgery but I think that’s the extent of it, which is age appropriate.  The doctors told us most children with special needs siblings grow up empathetic, thoughtful of those with health issues. We see that in her!

11. How has this experience changed your life?

We’re different people than we were three years ago: Our priorities are different, our perspectives have changed. We became fighters. We’re more political, we’ve turned into advocates, we are more open and vulnerable. I think we realize what a privilege it is to grow old. We have an awareness of how precious and fleeting life is- walking through a hospital full of very sick children everyday makes you realize the petty, little stuff doesn’t matter. This experience has shown me what is really important in life.
I want to be brutally honest here. Some kids don’t make it. Complications with surgery, sickness, or they need a heart transplant that comes with its own set of issues and obstacles. I know it sounds like I’m a “Pollyanna” in most of my writing but I refuse to stop expecting great things for my son. I have to believe that he will be okay, and I do! While there are moments of fear I have to remember-there are adults LIVING with HLHS! I have to believe my son will be a survivor,  that research and medical breakthroughs will make this so.

12. What is the best way for friends to support you during this time?

 What to do:
1. Provide Moral Support: checking in on us with phone calls, visits (when permitted), text messages, Facebook messages- feeling that support truly held us up when we felt the most helpless. Even if we didn’t have time to talk or respond,  just feeling the love made everything a little better.
2. Offer Financial Support: I am not comfortable asking for help. Never have been. I’m especially not comfortable asking for money. My family and friends supported us through a GoFundMe, T-shirt and Christmas ornament fundraisers, gift cards-it was so humbling and generous- and needed.
3. Getting involved in the Heart Community: learning about Jack’s condition, asking about our son and what they could do to help the cause and participating in Heart Walks/Events were some examples of how our incredible tribe responded.
4. Be understanding and supportive of our new normal.
 We had lots of new rules and most of our tribe wanted to help us settle in and make our transition home as easy as possible.
5. Treating my son like every other kid! He’s a normal kid with an abnormal heart! I’m grateful he has been invited to birthday parties and play dates with other kids.
What not to do:
1. Don’t Be an internet doctor. Googling a condition does not make an expert. There are also no amount of oils that will fix this condition. There is also nothing we’ve thought of in terms of helping our son. While you might mean well, it’s best to keep your opinions on treatments to yourself.
2. Don’t Compare one heart condition to another (or any other ailment)- each CHD/child and condition is unique and I can assure you whether it is a hole in the heart or HLHS, it is difficult and nerve racking for the parent to go through. That being said I also had someone compare and equate my 7 day old’s heart surgery with their out-patient bunion surgery. Don’t do that.
3. Don’t Share information without clearing it ahead of time.  Parents are processing and have lots of decisions to make and people to contact before letting some information go public.  I sent a photo to a friend and it was posted online almost immediately. While I know she didn’t mean any harm,  this wasn’t her information to share.
3. Don’t Visit without checking first- Especially if you’ve been sick. We were surprised when family members showed up to the hospital unexpectedly. Mama Bear kicks in big time! While they had good intentions, it would have been better to check with us ahead of time.  There were only two people allowed in his room at one time and There was very limited time to spend with him before surgery.  Also- Your “allergies” may actually be a virus and you are walking into a unit full of immunocompromised kids. Please be thoughtful of that.

13. Ten Random Tips for a New Heart Mom

1. Ask for & Accept Help, you will need it. 
2. Let go of the people in your life who make your life harder. You don’t have time for it and you’re going to need all your energy for this battle. 
3. No matter what- YOU CAN DO THIS.  You were made to be this child’s mother.
4.  This will be the hardest thing you’ve ever done, but also the best thing you’ve ever done. You will earn your stripes- you are a warrior!
5. Make friends with your nurses and listen to everything they say- I got some of my best advice from them.
6. Record your thoughts via journal, Facebook, caringbridge, etc.-with whatever medium you are most comfortable. This will be a blurry time and being able to look back at the progress and the heartache makes me grateful every single day for miracles.
7. Bring socks, hats and blankets from home to make the hospital bed and especially your baby feel like he/she is YOURS! When your little is able to wear them, dress your baby in button front onesies to allow wires/cords in and out.
8. Keep all your syringes if you will be administering meds at home. You’ve already paid for them and they’re expensive on the outside! 
9. Find heart Moms and support groups via Facebook or through the hospital. Heart Heroes, Mended Little Hearts and Sisters by Heart are a few examples.  They know what you’re going through and their knowledge will bring some peace your way.
10. Take care of yourself. As a caregiver it’s easy to make yourself last- But your family-especially your heart baby, needs you healthy. (I’m working on that myself.)

14. Tell us about Heart Month and how we can get involved. 

Heart Month is important in raising awareness and fundraising for CHD’s and all kinds of heart disease.  1/110 babies are born with CHD’s yet receive some of the scarcest research funding in comparison to other diseases. Here are some things you can do to help:
There are so many organizations that need your help funding promising research to find a cure for heart defects. The Adult Congenital Heart Association or Children’s Heart Foundation are a few examples. Support a heart family through charitable organizations like Open Arms, Mended Little Hearts or GoFundMe.
Participate in an Event-
In Austin, This May 5th is the Pediatric Heart Walk! Throw on some walking shoes and join a team to make a difference! (We will be team “Jack of Hearts” if you want to join!) There’s also the annual Heart Ball Gala or the Honky-Tonk pub crawl benefitting Children’s Heart Foundation! Wherever you are, you can usually find an event! (Wear Red for Heart Month and post about it-  spread the word and make it personal!)
Follow & share information via social media-
There are some phenomenal things going on in Heart news. Following social media/blogs/webpages of large charitable organizations, pediatric/heart hospitals, lobby groups, health news (or even private heart warrior pages) are great ways to learn about statistics, medical breakthroughs and the latest biomedical technology & research for CHD families.  Did you know they can take an image of my son’s heart, make an exact 3D cardiac model, and roundtable with a team of experts to decide the best plan for surgery? Science is amazing!
Lobby & Advocate-
Make sure these stories are told. If your a heart Mom, use the media to tell your story when there are injustices. Make sure your government is doing their part! Let your representatives know you want more CHD research funding for the National institute for Health. Texas has a mandate that requires newborn screening for critical congenital heart disease, but some states still don’t require- Fight for mandatory pulse ox screening. Make sure these babies are getting the care they need!
Volunteer & Make it personal-
Spend time with Heart families and learn their stories. Volunteer to feed families at the Ronald McDonald House or at the hospital. Make cards, blankets, crocheted hats or trinkets for the kids. If you own or work for a philanthropic company, get them involved by sponsoring an event! You will make a huge difference in the life of a heart family!

15. What’s next for the Nabours family?  

We are preparing for Jack’s 3rd surgery. We toured Lurie’s Childrens hospital  in Chicago this past summer and will check out Texas Children’s in Houston as another potential location for Jack’s Fontan surgery. Until then we will do our best to keep our tribe happy & healthy. For almost three years I’ve been following a timeline, a “what to expect” list, ticking off each box as we get to them. It’s strange because after the third surgery there’s no protocol on what happens next.  I predict we will still be involved in lobbying and fundraising for the CHD community, I pray my son emerges strong and healthy, and I hope we’re out traveling, camping, adventuring-showing our kids this big, beautiful world.  We will appreciate every moment we have with our babies. That I can guarantee.