Here you can expect to learn about CHD and why CHD awareness is so important. Prepare to be moved by stories of grief and hope.

Heart parents can find guides and tips to help them navigate caring for a baby with CHD. Like what to expect at their pediatric cardiologist appointment and what questions to ask their heart surgeon. You’ll also find how-tos and information on tube feeding – understanding NG feeding tube supplies, how to tape an NG tube, tubie troubleshooting, and more.

Through this blog, I aim to raise awareness for Congenital Heart Disease. You are helping me in this mission so I want to thank you, genuinely, for checking out Our Modern Familee. It means more to me than you know.

Find Jessica at

Instagram: @ourmodernfamilee | Facebook: @ourmodernfamilee | Pinterest: @ourmodernfamilee

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How it all began and why

I started this blog in late 2021 but didn’t publish it until late 2023. What? Why? Well, in Fall 2021, my life changed and I was at my lowest point ever. The idea for Our Modern Familee was birthed from need, desperation, and hope.

Then, I was pregnant with my third child. I had recently found out she was critically ill and would only get a chance at survival through open heart surgery.

She was prenatally diagnosed with a critical Congenital Heart Defect (CHD), a balanced and complete AV canal defect. This huge hole in her heart could only be repaired through open heart surgery which had to occur before she turned 1.

In disbelief of this new reality, I struggled to process it all. So I started writing. I poured my shock, anger, denial, sadness, frustration, worry, tears…everything, onto a page. And I found it helped. Writing helped me process and understand. It even aided in my acceptance of this new reality.

Despite the pain, I want to remember. I want my daughter to understand her full story. All that she overcame, understand the full spectrum of her strength. I want others on the CHD journey to feel validated and seen in their pain and struggles, to understand and feel confident in caring for their baby, and to be inspired by hope.

I wrote to process my emotions. I wrote to try to make sense of things. I wrote to help with difficult decisions. I wrote to remember the story.

Our stories are powerful.

“One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”

Brené Brown

After two arduous years managing a high-risk pregnancy, preparing for a medically complex baby, and managing my daughter’s critical CHD needs, I finally got some space and got a chance to breathe a little. And I turned back to this project.

I decided to make it something more. It served its purpose behind the scenes helping me get through the roughest times as a medical mom. But now I have an updated vision. It’s intertwined with the original idea, but the next phase.

Our Modern Familee is no longer for me. It’s for the new heart mom, the new heart parents of a baby diagnosed with a hole in their heart or another type of Congenital Heart Defect.

For those parents embarking on this extra difficult journey, no parent or child should have to walk, but you don’t have a choice. When you have to be braver and stronger than you should have to be.

I’m striving to offer support to help make the first year with a CHD warrior baby a little bit easier for parents. A resource, a guide. A laugh, a cry, and a little light from someone who understands the experience. From someone who stumbled, crawled, and hurdled over similar obstacles. I’ve been where you are. I know it’s so hard. I want you to know you are stronger than you think, and you can do this.

On Our Modern Familee you’ll find guides, tips, how-tos, stories, and more to aid parents of heart warriors. There is so much overwhelm in the first year as a medical mom, I hope to help heart moms get up to speed on everything CHD a bit quicker.

Additionally, you can find guides and resources for non-heart families to learn more about CHD, and how to support CHD families and parents managing a CHD journey with a baby.

Congenital Heart Defect awareness is unfortunately low considering how prevalent it is. Through here, I’m working to raise awareness. We raise CHD awareness so more people learn about Congenital Heart Disease and when more people are aware, this leads to more funding, more research and ultimately progress and better outcomes for those impacted by CHD.

Are you with me?

Family + Lee = Familee

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My Heart Mom Story

On September 10, I became a heart mom. My daughter was not even born, and I was already joining the heart mom club. She was prenatally diagnosed which was a blessing and a curse.

While we had one plan in place for open-heart surgery between 4-6 months old. That got thrown out of the window and my world turned upside down again at her birth. She was post-natally diagnosed with additional critical CHDs in her aortic arch that necessitated immediate attention.

Right away we had to work on her emergency transfer to the children’s hospital. They made us sign horrid consent papers.

Instead of going home to our two big kids for Christmas, we went to Los Angeles with an uncertain future. It was a nightmare.

They didn’t know her exact heart complexity or the plan to address it. Sitting in the unknown was agony.

Machines were rolled in and out of her ICU room while a parade of physicians and nurses cycled through checking, reviewing, poking, and prodding. They conferenced on her case, what to do, what to do. Her anatomy was complex and an atypical combination of heart defects. Her heart was unbalanced, but not quite HLHS. Does she need to have the Norwood and go the single ventricle route? Or is there a chance her anatomy could support a biventricular repair?

Waiting on heart surgery was no longer an option. To survive, she needed open-heart surgery within her first week. Even before this, she needed an intravenous medicine to keep her alive until surgery.

With tears streaming down my face, I walked my daughter down to the OR at 66 hours old. Her surgical team took her through the double doors and as they swung back I flailed to grasp what transpired over the last 3 days.

How did we get here? This is not how it was supposed to go.

While the surgery was successful, her recovery was bumpy and didn’t go according to the plan. She stayed intubated longer than they anticipated and I couldn’t hold her. If you were ever unable to hold your newborn, you know.

Everyone at the hospital started wearing more intense protection gear as covid numbers in our state ticked up to their highest rates ever. We remained in the ICU.

She had to fight infections. Her vocal cord was paralyzed and she had feeding trouble. Rather than gaining weight, she was losing it.

A frustrating dance of two steps forward and one step backward.

Eventually, she progressed in the right direction and we moved to the cardiac acute care step-down unit. We had to start learning how to care for her complex medical needs. How to properly draw up medications. What to watch out for. When to bring her in. How to check her incision. What specialists she needed to see.

She had another procedure to try to improve her vocal cord paresis, temporarily, to feed more safely. After a couple of swallow studies and multiple sessions with the feeding team, it was determined she was NPO or nothing by mouth.

I was allowed to nurse her for a few minutes only immediately after I pumped – non-nutritive sucking it’s called. After exclusively nursing my first two children, I was crushed.

We could also try bottles, but only with an extra preemie nipple with a special attachment to make it an extra extra slow flow. And we could only hold her in a specific position on one side, to further protect her airway. We were allowed to try for 10 minutes max, and only 1-2 times a day, of course, only if she was alert enough.

Tube feeding was the only way we were getting home. We had to learn all the parts of an NG tube, how to manage her feeds and medication through it, how to replace it, secure it and check it, and all the supplies.

Overwhelming to say the least.

Hospital life somehow moves so slowly and in other ways, it’s such a crazy rush. An avalanche of information was dumped on us in a relatively short period and it was difficult to process and remember it all.

We were eager to get home, yet it was frightening to think about caring for her at home without immediate access to an entire floor of nurses and doctors.

A month later we made it home, and she finally got to meet her older brothers and grandparents. Having a child in the hospital and others at home hurts your heart. There’s no way to split yourself or your time in a way that feels good.

While my daughter was stable enough to be home, she was fragile. Her heart was largely unrepaired. She still had a huge hole in the center of her heart which means her heart was working extra hard, overtime like she was running a marathon.

Now we were in a period called interstage. This is where she was in between planned surgeries.

The primary goal and focus was getting her to gain weight. Her heart needed to be bigger for her next surgery. We had to try to keep her healthy and away from other children – which is pretty easy when you have two other kids, right?

Keeping her lungs healthy was of critical importance. They were already under stress and further problems could have negative and longer lasting consequences. It could impact the success of her heart repair.

All my time and energy went into feeding her. Exclusively pumping is no joke, and yes, this still counts as breastfeeding. I was sad to not be nursing her. I hoped we could get back to it post-op, but I accepted tube feeding was our temporary need.

Despite no medical education or training, overnight I had to become her full-time, round-the-clock nurse. She required all the constant care that a newborn does plus special medical care.

I was drawing, tracking, and pushing several medications at different times throughout the day. Cleaning and sterilizing all the things and trying to get her brothers to constantly wash their hands and not touch her face! Her NG feeding tube necessitated hours and hours of care with taping, tube changes, flushing, hooking up feeds, starting, stopping the pump, troubleshooting clogs, running feeds, and more.

She had to go to the pediatrician, cardiologist, feeding therapist, gastroenterologist, ENT, nutrition/cardio clinic, High-Risk Infant Follow-up clinic, GI/cardio clinic, and more that I’ve lost track of. Then there were also various hospital visits – planned and unplanned. Trips to radiology with the most ridiculous wait times. Visits for tests and pre-op, MRIs, scopes, and more.

We were in ultra-survival mode for months. I monitored her daily, trying to distract her on the scale with silly faces to make sure she was gaining weight. Most of the time she was, but at other times she plateued and even lost weight.

I paid close attention to her breathing and whether she was working too hard, looking for signs of heart failure. Her cardiologist warned us, that she would get a bit better and then she would get worse.

Running on adrenalin in a constant state of fight, stressed to the max. It was an impossible state to continue living in and it took a toll. But I pushed through knowing there was a timeline and this period was temporary.

And somehow, some way, we managed to pause now and then and try to enjoy tiny more normal moments as a family. These were far and few between in the beginning.

With some minor hiccups, thankfully nothing major, we arrived at the time for her big repair.

We flew to Boston. At first, I distanced myself from the fear and distracted myself by reuniting with Boston and our family. But then the worry came back like a flood after all the trauma of her first surgery. What was going to happen this time? So many things can go wrong with open heart surgery and during recovery.

Luckily her full repair, a complex biventricular repair, went smoothly. Everything went as planned and her surgeon worked a miracle on her mitral valve.

She recovered like a textbook, it’s still shocking how smoothly. We had the best time with her when she started feeling better and her personality started blossoming.

When we went home, she continued to heal and grow. It quickly became obvious how poorly she must have been feeling before her surgery. Afterwards, she was a different baby with a big beautiful personality.

She continues to grow and wow us with all that she does every single day. And we are so endlessly grateful.

While her heart defects are repaired, there is no cure for CHD. We will always need to monitor and manage her Congenital Heart Disease. She has additional procedures and surgeries in her future, and will always go to the cardiologist regularly. For now, though, I am ecstatic to report she is stable and thriving!

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My Background & Education

In 5th grade, I won my first graphic design contest. I designed an ad for a small business that sold rugs and it ran in the local newspaper – true story! And apparently, my fate was sealed from then on.

I enjoyed scrapbooking – laying out the pages, photos, and text. In middle school, I was often carrying around a camera.

I was always tinkering on the computer, trying to design and create various things. Sometimes I would take my physical homework worksheets, and recreate them on the computer – type it out, format it and all, and then type in my answers. I claimed I enjoyed typing better than writing, and this way everything was cleaner and clearer. While this was true, I really just enjoyed creating graphics on a computer.

Signs, cards, flyers, homework, and things for fun, I was always trying to create things on the computer. Remember Xanga and MySpace? In high school, I partook in designing the yearbook which I loved.

Are you noticing a trend yet? Photos + graphic design + documenting + computers…

College came and I didn’t think of graphic design as a focus of my career…it already felt like something I knew and was just a part of me. I continued to design throughout college, creating event ads and flyers mostly for some of my clubs. For one semester, I took a proper graphic design course and was in my element.

As much as design feels fun and natural to me, learning about people and places feeds my soul. In undergrad, I studied Global Studies, Asian Studies, and Spanish and primarily focused on Mandarin Chinese language and Chinese culture. I graduated from Lehigh University with a Bachelor of Arts.

When people asked me what I wanted to do with my life, deer in headlights.

I knew what I enjoyed doing and learning, but hadn’t an inkling how to translate this into a career. Clueless about how to proceed, I looked to grad school.

Continuing my education felt easier and safer. I loved learning, but more so I didn’t have clarity on what was next or how to go about getting there.

I returned home to Connecticut for the summer and got my tonsils removed. 10/10 I don’t recommend doing this as an adult. And during this little break, I launched my first business – a graphic design business. I guess I’ve been an entrepreneur from the start, but somehow I didn’t run with this track earlier.

Next up, I moved to Boston for grad school. It was a fast-paced and intensive program that offered an alternative more creative MBA. We covered traditional MBA program subjects, however, there was a heavier focus on communication and marketing and it was globally focused.

This was a bit of an ah-ha moment for me as I was starting to see some of my different interests intersect. Only 1 year later, I graduated from Emerson College with a Master of Arts.

I went on to start my career at a company that did creative marketing and research. It was interesting, I learned a lot and gained varied experiences working with many different large companies and brands.

Moved to New York City and got married!

Pregnant with my first child, we moved to Texas. I left the corporate world and focused on my new little world right in front of me. Becoming a mom is a wild experience, you can never be fully prepared or understand how much it changes you.

There were many challenges in being a stay-at-home mom, but I also had a ton of fun and am thankful I got to spend so much quality time with my first son in his earliest years.

We made another move, to Seattle. After my second son was born, I was fulfilled and depleted in the grind of life with a baby and a toddler. I was missing something. I needed my creative outlet.

In 2018, I launched my first blog – a family travel blog. At that time, I had no idea what I was doing, but I was hooked. Blogging seemed to combine so many of my interests, passions, and skills all together.

Next up, we settled in southern California.

The travel blog was fun and I enjoyed it, but puttered out during the pandemic. Then came my daughter’s diagnosis.

Thanks for stopping by and reading my story. I hope you learn something new at Our Modern Familee!

Can I ask you a favor? If you know someone or learn of someone with a baby diagnosed with a heart defect, please share this site with them. It is insanely difficult when you first find out, and I hope this can help guide other heart parents.

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