The One with Baby Heath - Our Heart Hero

Heath

I would like to share with you a story about my cousin's sweet baby, Heath.  He was born with Hypoplastic Left Heart Syndrome (HLHS).  I mentioned him in this post and I know that the people we go to church with are familiar with his story.

 The Naumann's
Lacy, Heath, Marshall, Bert & Ace

These words are straight from his Mama's heart.  She is here to tell the first part of their story ~ Before Birth...

More than anything, I would like to ask you to remember this baby in your prayers.  

Currently, he is on the heart transplant list and with each day that he waits...his health declines a little bit.  

Please remember him if you have a moment.

Thank you from the bottom of my heart.

 "Have I not commanded you? Be strong and 

courageous. Do not be afraid; do not be discouraged,for 

the Lord your God will be with you wherever you go."

Joshua 1:9

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About late winter, early spring, of 2012, Bert and I found out that we were soon going to be a family of 5! For the most part, the pregnancy went along like most tend to. I remember having the most gosh-awful craving! Every day, after work, I would leave the school and head over to pick up Ace and Marshall from their daycare. Conveniently for me, there was a Taco Bell literally across the street from the daycare. And for about two weeks, my absolute, must-have food of choice was Taco Bell’s Double Decker Taco! Just thinking about it makes me cringe. It was like my car was on auto pilot. To this day, I claim I had no control over my navigational skills those two weeks!

I remember the conversations I had with all my sweet co-workers in the hall between classes. I was lucky because I got the joy of seeing nearly every class every day. As the Physical Education teacher at the elementary school I worked in, I could always count on visiting with each and every one at some point during the day. The topic of choice: gender. Well, of course, the gender-pool at work weighed heavy on the female side. With two lively boys already in tow, most people were secretly hoping we would welcome a sweet girl to the mix. I had conflicting feelings on the matter. I mean, I know ‘boy’. I could do that again with my eyes closed…and figured I probably would at some point from sheer exhaustion! But, there was that pull on my emotions to see Bert dote on a daughter. Either way, I knew three things to be true: my body wasn’t helping to steer me in any one direction-some days it felt the same as it did with Ace and Marshall and some days it was a complete 180*, I knew this precious gift would be loved so deeply- blue or pink- it mattered not, and I knew the only thing that mattered to both my husband and I was that this baby was healthy. Isn’t that the ultimate wish for parents-to-be? At the end of the day, when all the hype of a newborn fads or the gifts are unwrapped or when you tuck your kiddos in at night, the only constant thing on every parent’s mind is if their baby is healthy.

I am pretty sure I didn’t sleep the night before our 20 doctor visit. And not because I had major heartburn or my legs were cramping or I got up every 45 minutes to use the restroom! I was giddy with anticipation on whether or not I would be wearing blue or pink to work that next day following the appointment. That was the deal. I was given the go ahead to leave work early if I would reveal the gender that next day when I walked in. I was all for it! We made some last minute phone calls to the family as we pushed through the door of the doctor’s office and eagerly waited for our lengthy sonogram.

It’s probably not news to most folks, but the 20 week sonogram covers a whole lot more that measuring the length of the baby and counting the heart rate. Every major organ is screened, every valve is checked. Doctors are able to get such a close picture into the future health and wellbeing of a baby during that time. And of course, the gender is documented. Neither of us wanted to know the gender…well, that was our rash decision in the parking lot of the doctor’s office before going in. Not surprisingly, when the tech asked us if we wanted to know what we were having, Bert and I both burst out “yes”! I knew neither of us could hold back.

It’s a BOY!….

I think my first reaction was joy. ‘I got this’! I am sure, initially, I felt relieved because I figured maybe 3 boys would be easier on me than entering into the world of ruffles, lace, bows, and Barbies! God was giving me a break… hahaha! I could see the gleam in Bert’s eyes when he heard the news. It must be so amazing for a father to know that he is raising his next generation, his name-sake! Having boys always puts a pep in the step of a new dad. I remember how very sweet and sensitive Bert was the moment I must have looked like the wind was knocked out of my sails. I can’t deny the disappointment I briefly felt when I realized I wouldn’t get my girl. Every mom wants a mini-her. It wasn’t a huge deal, a little sad, but not major. It’s like Bert knew I needed a nudge of encouragement. He leaned over and told me I would always be the Queen of our castle! I felt very loved.

Having gone through this part of our little journey a time or two, I remember feeling like the tech was paying special attention to one area during the sonogram. The elation of the gender reveal dwindled, and she became absent from our conversations. Before, it felt like we had been friends for years the way we talked and carried on. But, she just sort of stopped. The athlete in me likened it to a player putting their game face on. The mood just shifted. Not long after, Bert and I waited for the doctor to come in and go over the slides and discuss the date for our next appointment. From this point on, details get fuzzy. There are obviously moments that occurred after all this that are so deeply engrained in my soul that I couldn’t forget them if I tried, but a lot of them are how I remember them, and it may be different than how Bert remembers them- or anyone else that traveled this road with us so closely.

The moment life came at us like a kick to the stomach, knocking the breath straight out of us, is a moment that I often reflect on, nowadays. It was just so surreal. “Your baby boy looks like he is growing just fine.”, “His heart rate hasn’t changed much since your last ultrasound.”, “He is certainly moving around nicely.” Those are some of the phrases uttered to us during our meeting. Honestly, it felt like the doctor was just going down a bulleted list of facts while he searched for the words to tell us what they saw during the sonogram.

“We did find a little spot on his heart.” I’m sorry, what? It came out so abruptly, that I was sure I heard him wrong. No, my hearing was working just fine. He told us it was probably nothing. He said every other piece of data taken from the sonogram was normal and didn’t show an area for concern. He said its most likely just a calcium deposit that will do away on it’s own time. He said he was 99% sure it was nothing to be worried about. However, he also followed all that information with a date and time scheduled for us to see a high risk fetal doctor. I knew something wasn’t right. And, looking back throughout the early stages of the pregnancy, I recall moments when I just felt ‘off’ about the whole process. 

I have absolutely no idea what occurred during the days between that doctor visit and the one with the high risk doctor. I did, however, have to muster up the energy and excitement to enter the school that next day to reveal what we were having. I sort of cheated. I just felt so confused and scared and deflated. I knew I would be putting on a good face and putting on a show for everyone- I wanted to be curled up under my covers, bawling my eyes out with anxiety, but I didn’t want to bring anyone else down. I wore black…well, a black Nike shirt and running shorts. After all, I did coach P.E. But I brought all my typical work day items in a cute blue tote. I got some laughs over the whole ‘sneakiness’ of my reveal and I got a million hugs. Apparently, people think the world of mothers of three + boys! I grinned and bared the majority of that day. Those closest to me knew something wasn’t right, but they must have also sensed that I wasn’t in the sharing mood.

What happened over the next few months was chaotic. I had an appointment in San Antonio with the high risk doctor, and I believe it was the second visit. The first one, as I remember it, was sort of a confirmation that there was something not quite right with our baby’s heart, but they were unable to give us any real answers. They wanted to contact another doctor with more year’s experience to go over the images before they shared any information with us. Unfortunately for me, that meant that my husband would not be able to go with me to that next appointment. Thankfully, his mother was very willing to go with me and be there for me.

Looking back, I feel so bad for my mother-in-law during that visit. She sat in the chair next to me, while I laid on that not-so-comfy exam table, and we watched to monitor so intently, as if we knew exactly what we were looking at. I can recall how very kind that doctor was. She had the toughest job up to that point. She had to find the words to tell me that our baby was in fact not at all healthy. She was sensitive yet factual. It’s painful to tell a mother that her baby has so many odds stacked against him, but at the same time, she knows she can't sugar coat anything.

Your baby is missing the left ventricle of his heart…Missing??? And, that was the first time in my life I had ever heard the term: Hypoplastic Left Heart Syndrome. I lost it. I clung to my mother-in-law and just sobbed. My husband and I would just hold each other and wouldn’t speak. What do you say? We don’t even fully understand what it is our baby has! I remember taking showers at the oddest times during the day because I needed to cry. And, not just cry like you've just watched a sad movie. I would turn on the water, sit on the floor of the shower and just explode with sadness. Letting the water hit my face somehow made the crying easier. I was so weak from the emotional ache. Bert would find himself having to pull over while out on a job. He would break down in the car and just weep. Oh my goodness, I simply cannot describe how much we were hurting. We still had jobs we had to maintain. We are both pretty strong-willed people, and we would go to work, do our job the best we knew how to, and try very hard not to negatively effect those around us. I made reference to being an athlete earlier. I honestly think so much of my training and experiences with athletics made the ability to get through some of the toughest days possible. I played softball in college. I took away some very profound lessons during those times- life lessons. One phrase has always had a big impact on me and on how I attempt to get through days that feel on the verge of being ruined.

…Just like hanging your bat-bag along the outside of the fence before stepping on to the ball field, you must leave the stresses of situations where they lay, and not carry them with you on to the field of life…Bert and I were hit, full force, with major life altering stress! But bringing it on to one of his jobs would have caused him to perform poorly. Bringing the drama of all I am going through into that school where it would potentially effect the hundreds of students I encounter every day and all the staff I work with would have been completely chaotic. So, Bert and I tried to leave it at home, knowing we would pick it back up once we were done. Easier said than done. Especially when we still have two fantastic boys that rightfully need and want their parents to be there for them. It was a juggling act. Eventually, we shared our story thus far with those around us. They cried with us, they fed us, they visited us, they went out of their way to distract us, and some even stepped back because they found themselves speechless and unsure how to approach us.

We saw surgeons, we researched hospitals, we read up on the latest medical statistics that dealt with congenital heart defects (CHD), focusing on HLHS. We even googled his diagnosis. Let it be perfectly clear when I say this: Never Google a severe medical diagnosis!!! I assure you, you will not be encouraged. Stick to personally talking with the people who will soon be involved in your baby’s care! Bert was approached with a new job offer, one that specifically dealt in the area of his degree, and I was faced with having to write my letter of resignation for the following 2012-2013 school year. June 1st, 2012, Bert moved 5 hours away from the boys and I and started his new career as a GIS analyst for an oil company, and my very pregnant self was left to stage a house while the boys and I still lived in it. After reaching a point of not wanting to continue dealing with that stress, we staged it for the last time and the boys and I moved in with my parents in Waco.

We made the most important decision during this time and chose to seek care through Children’s Medical Center in Dallas. We have praised the Lord daily for bringing CMC into our lives! September 4th, my mother-in-law, my two boys and myself moved in to the Ronald McDonald House of Dallas and began, my, at least, 7 month stent away from home and family.

…You may be asking yourself, ‘didn’t she say she wasn’t going to write a novel’? And, yes, I am desperately trying to share only the valid points and highlights of this little adventure. However, as I continue to get asked about our journey through all this, I am reminded how crucial those times leading up to Heath’s birth were for our family. When tragedy hits, it comes in waves. Some of those waves are dangerously close to taking you under so deep that you honestly think you will drown. To be a part of this ride we are on, I think it’s important to know what it was like to cope. You need to imagine living for your children when you would bet the ranch that you couldn’t take another step. You need to picture yourself going through such turmoil, only to have miles upon miles and hours upon hours separating you from your family, your support system, your strength. It was survival for us. I had to be the healthiest I could be: body, mind, emotions…I was fighting for Heath.

Reflect over this portion of our life’s turn of events. Because what lay ahead turns out to be the most painful, terrifying, yet perfect thing I have ever experienced. And I wouldn’t change a thing!!!…

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Lacy has graciously shared her heart with us today and she will return to share the next parts of her journey very soon.  

If you would like to follow their story on Facebook -- you can see Heath's page HERE.