The One with Our Heart Hero - Part 2

Hello all of you faithful readers!

I am here today to share with you Lacy's second part about their precious baby... Heath!

Heath has HLHS and is currently on the waiting list for a heart transplant.  He will turn 2 on September 14th...

In 16 days... on September 5th...  if Heath has not received a heart he will undergo his 4th heart surgery....

I read this part 2 and sat in awe of my sweet cousin as I wiped tears from my eyes. 
She is truly amazing.  

You will notice at the top of my blog page I have added a Prayer List and Heath has been added to it...

I humbly ask for prayers for this miracle of a boy that has been placed in Lacy and Bert's life.  

Thank you so very much.

If you want to read the first part of their journey click HERE...

To follow Heath's story on Facebook click HERE...

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"If prayer is all I have, I have everything I need!"

The events following our initial arrival to the Ronald McDonald House of Dallas can absolutely be described as a marathon of survival. Medically, emotionally, mentally, physically, financially; you name it, we experienced it, and all at a very intense pace.

It has taken me so much longer to feel confident at putting this part of our lives down for others to read and understand. Of course, I have written versions of our journey for fundraisers, blogs, family letters etc. But, today I write it purely as a reflection of those moments. I think it’s important, no imperative, to reflect on past events and respect them for the lessons those events have taught us. It’s one thing to wake up and discuss or to look back on the night or days just after a major life altering moment. It’s another thing to sit down and truly reflect on everything that occurred 16 plus months ago. By all accounts, details and certainties should be foggy and one should be left with saying, “If I remember correctly…”

But what I think is so incredible about being able to stop and relive every avenue of our journey-painful and triumphant- is that the reflection can show you how you have grown over time. You can’t fully appreciate who you have become or what you fought through if you only take an immediate glimpse at what just occurred. That being said, I feel a responsibility to do these last nearly two years some serious justice and hope I am able to ‘transplant’ you, as the reader, into our journey as if you were literally walking those terrifying lines with us… (no pun intended!)

There was absolutely no sleep to be had by my very pregnant self the night before we were scheduled to deliver Heath via C-section. I was a complete mess inside. I did a fairly decent job at standing tall amidst my nerves and anxieties. Rightfully so, I should have been a blubbering idiot, emotionally beside myself, riddled with an oncoming nervous breakdown and coping with my fears by stuffing my face with Oreo’s and milk…I think sweets are my way of calming my fears! But, thankfully I only suffered from typical pre-delivery anxiety and kept my self distracted with crosswords instead of the delicious temptation of milk and cookies. We arrived at the hospital early and began the process of getting admitted. My wonderful husband and my sweet parents were right beside me during the inevitable wait time before heading back into surgery. I honestly think they deserve an award for their impressive knack at keeping me calm and maintaining a wittiness about the whole situation. I can’t imagine having to hold it together for the sake of a loved one, even making them feel at ease and silly at times, when in reality, they are aching inside knowing there is nothing they can do to physically take the pain away.

I remember sitting on the operating table, taking a deep breath, and remaining absolutely still as I slowly exhaled and received the much appreciated spinal epidural. I can recall the sensation of the warm tingling medication branching out and down my body as if it had just happened. It was a feeling of immediate relief knowing all I would endure in terms of pain would be the pushes and pulls as they brought our newest addition to the family, my soon-to-be hero, Heath Aaron into the world.

So much of what to expect about your newborn doesn't come to existence until he is born. What will he weigh? Will he have hair? Will he have his daddy’s nose, or my eyes? Those are a few of the normal questions parents catch themselves anxiously awaiting answers for as they peek at their baby for the very first time. For my husband and I, we would have welcomed the chance at only focusing on those trivial questions. People take the normal outcome and everyday -run of the mill- concerns and curiosities for granted. No, September 14, 2012, Bert and I seemed to hold our breath while we braced ourselves for the storm that was about to come. Would our baby survive the scary time between birth and getting the life saving medication that is required if he is going to even see the chance at medical intervention? Will our baby be so blue, too cyanotic, that the thought of successful recovery is too far fetched? What other critical defects with our baby have that aren’t present until birth? Are the stories true- will I miss out on the chance to hold my baby against my chest and kiss his sweet newborn head like every other new mother gets to do, because my baby has such a narrow window of opportunity for survival, that my selfish need to capture this moment could put his health at serious risk or even cause the doctors to run out of time?

Those are the questions that plagued our minds as we left the comfort of pregnancy- where Heath was safe inside- to the dangers of having to watch our baby fight for his life, all the while being completely helpless in our efforts to protect him. In what felt like an eternity, but was only minutes, maybe seconds even, Heath was out for all of us in that operating room to see. He was huge! Well, by CHD standards anyway. Heath weighed 7 pounds, 12 ounces and was beyond beautiful. (I am tearing up sitting here writing this. The memory of that God given act of peace was exactly what I needed at that very moment). I know my Savior was present in that room that day. He knew my heart needed to know Heath was a fighter, just like we had prayed for him to be. Hearing the medical team’s excitement that our baby was as big as he was, affirmed that we were not alone on this road. Never should I doubt where my strength comes from. Just like praising my Savior for joyous times, He comforts me and my fears each time I have left those fears at His feet.

I graciously accepted the very, very brief moment of touch I had with Heath before he was whisked away. Once the nursing staff was out of my peripheral, and I could no longer see or hear signs of my baby being in the room with me, I had no other choice but to praise God for providing us with a team and a facility that would do it’s absolute best to save my baby’s life. It was out of my hands. I had no idea if I would see my baby again. Or, best case, I had no idea what state my baby would be in once I was able to leave that hospital. I am beyond grateful that I have prayer. I never felt like saying, “all we can do now is pray”. ALL? If prayer is all I have, I have everything I need! As a mom, I was so emotional, so sad, so burdened with the feeling of helplessness. As a Christian, and daughter of The Lord Jesus, I was prepared for the storm that awaited us. Put it this way, if you have Jesus and the faith of your Savior, it’s like having the number one draft choice on your team, like having the most elite team of soldiers on your front line. I knew I had everything in my corner to help see me and my family through this trial-good or bad. I knew at the end of the day, I would be shown glimpses of how great His plan is, even if the mom in me felt scared or disappointed. I just had to trust. So, that is what we did. I reminded myself daily, with the help of family and friends, that trusting in God’s plan would far outweigh any plan I might have. I couldn’t call the nurse back in, or tell her I wanted just a few more minutes with my baby. I couldn’t barter with God and expect the current moments to simply freeze while I gained a comfort zone. Instead, I accepted the fact that Heath was in the place with the best possible care for him. I kissed my husband goodbye, and he left to join the transport team as they took Heath to Children’s Medical Center for what would start a 7 month stint of life-saving medical care.

Lacy and Heath right after he was born

To be honest, as much as I want to provide a detailed review of every waking moment that occurred after September 14, 2012, there are those lapses of time that are a bit hazy. Time can be the culprit to those foggy details, but so can uneventful moments. Some times, the saying is true: No News, Is Good News. I regained my health and was discharged from the neighboring hospital a few days later, and took as many trips to Heath’s CICU room as I could. At only a tiny 5 days old, Heath underwent his first of several open heart surgeries in hopes to increase his quality of life. It needs to be known that there is NO cure for his CHD of Hypoplastic Left Heart Syndrome. The series of intense surgeries and on going medications and cardiac appointments only provide him with the chance to live a more normal life- on the outside. It’s ultimately a Band-Aid to a broken problem that cannot be fully mended- just maintained.

His first surgery, known as The Norwood, was 8 hours long. One of the most amazing pediatric cardiac surgeons, Dr. Forbess, had to rebuild Heath’s aorta that was severely narrowed and construct an artificial shunt or conduit that would allow the right ventricle to be the main source for pumping blood, both oxygenated an de-oxygenated, throughout his body and maintain blood flow to his lungs. This is no small task, and can be the most difficult surgery of the three for babies like Heath. I can remember showing up, very early in the morning, to hold Heath before they took him back. This, in itself, was a big deal. We had not had the chance to really hold our little one prior to that moment, so my husband and I took in every aspect of our short visit. I remember the sounds of the monitors beeping, and the smell of dry erase markers that had just been used to write updated information on Heath and his care. I remember looking at Heath and seeing wire after wire connecting him to several machines that seemed to be attached to his bed. The weight of all those wires must have weighed more than Heath alone! And just like our family, in Naumann fashion, there was no lack of a dull moment. As I mentioned earlier, it was a big deal for us to hold our baby. Not long after the nurse handed me our baby, the oh-so comfy rocking chair that adorned his room, chose to take off instead of rock! I remember looking down, mostly in awkward shock, and noticed a wire that was clearly no longer attached to the monitor. After a slight panic on my part, the nurse assured me it was no big deal. In fact, he said I might as well have unplugged the coffee maker, it wasn’t a major wire, but more of an additional monitoring choice. You can imagine my embarrassment at my overreaction, but I can promise you I was so thrilled I didn’t just put a kink in the whole process! It took some time, but we had a good laugh.

 Lacy and Heath

Bert and Heath

One last smooch to his sweet little face, and after they rolled him down the hall for surgery, I cried myself to the waiting room. No matter how you cut it, 8 hours is a long time to wait for anything, let alone for news on your precious baby. We received hourly updates from the team, each one given with confidence and reassurance that Heath was rocking and rolling through each step. Music to our ears! After sneaking a peek at him as they rolled him back to his CICU room for recovery, we continued waiting until Heath was cleared to have visitors. There are no words to prepare you for seeing your baby laying there, fresh from surgery, coming off of anesthesia, with twice as many wires attached to him than before, with several drainage tubes now coming out of his abdomen, a breathing tube in the place where you’d rather see a cute pacifier, and with his tiny chest still wide open with only a sheer gauze covering the gaping wound. How can this be my baby? How can what I see, result in my baby getting better? It is something I can see so vividly, even after nearly 2 years have passed.

Heath - Our Heart Hero

Heath spent a total of 36 straight days in the hospital before he was discharged to go home. Unfortunately, by “home” I am referring to the Ronald McDonald House just 2 blocks away from the hospital. By no means am I complaining! That facility was beyond anything I ever expected. The compassion the staff and volunteers that work there show to the families staying in that house is amazing. Because of that house and the people involved to keep it running, moms like me are able to care for our babies and continue seeking top-notch medical care instead of going to a hospital that may be close to home, but seriously lacks the capability to handle the severity of our child’s case. The meals were always prepared with love, our needs were always met to the best of their ability, and they catered to the siblings of our patients through activities and special events that helped keep smiles on the faces of the ones that didn’t quite understand all the sacrifices and changes mom and dad had to make. That place was like the silver lining at the end of a very hard and difficult day. A warm meal, a comfortable bed, and the chance at a shower were some of the things we could look forward to. I am not sure if those involved in making all that possible will ever truly know how greatly they are appreciated.

The celebration of getting to see my baby sleep in a crib outside of the hospital is indescribable. All-be-it in a standard and simple crib provided by RMHD (Ronald McDonald House of Dallas) and not in a nursery designed in a specific theme back at home, it was still outside of the hospital walls and without him looking as if he was plugged into the wall like some alarm clock! No wires, no electronic leads, no beeping, no 4 hour interruptions. It was the first feeling of normalcy I had felt in well over a month. What felt normal to a point, quickly gave in to high stress demands on my part with portable monitoring equipment, hour by hour recorded data on everything from the times he started then stopped a feeding and how many ounces he took in during the allotted time, to detailed weigh-ins twice a day, as well as in put/ out put ratios. I was required to maintain an updated medical diary of every medication I gave him along with the times I gave them. If that wasn’t enough, I was also required to monitor his oxygen levels routinely and pay very close attention to any slight changes I observed in those 24 hr. spans. Those responsibilities were not without the normal new mom duties one has with a newborn. It’s fair to say, my days were very long, and my nights were even longer. But, as demanding as those responsibilities were and as important as those responsibilities were, they were absolutely appreciated. Each one represented a part of a program called The Safe At Home Program. It is because of this program that the survival rate among the babies cared for at Children’s has grown in percentage. Every point of data recorded is reviewed weekly by cardiologists and nurses involved in every appointment Heath had. At any time, between appointments, if I had a concern or question, I could simply text or call the team of doctors and within minutes, I would have answers and guidance. I am so grateful for the knowledge I gained because of that program. I strongly believe I am as confident today in my ability to properly care for Heath, as well as communicate his diagnosis and story, because of everything that program taught me. It was a grueling three months after Heath’s initial discharge. It was like the medical world’s version of boot-camp. But, like successfully completing training during boot-camp, Heath and I graduated from the Safe At Home Program knowing we were better equipped for the next stages of this heart journey.

If I stop and review what life was like those first three months or so into this life as a heart mom and a heart family, it’s safe to say it was challenging. You only need to read the above story to feel the stress we were faced with. But, like nearly every avenue of life, there are two ways to look at a situation. I can close my eyes and remember those three months as a time of pain, a time in our life when I was mad at God for allowing me- a Christian and a good person- to go through something so awful. I can think back on those days and still argue with Him over why someone like me should have to endure such pain and heartache when there are so many people out in the world doing terrible things and lacking serious respect for themselves and anyone else, having healthy babies. I could ask Him what I did wrong to deserve this. I could refuse to comply with any help offered and feel entitled to be angry. I could give up. I could pass on the opportunity to show my other children how to overcome adversity because I am too depressed… Honestly, that would have been the easiest route to take. And after all, don’t I deserve a break?

Or…

I can remember seeking guidance and counsel from those so much wiser in scripture than myself. I can remember the moments I cried out to God, revealing my insecurities over this new path our life was taking and being completely broken, allowing Him to mold me in to the person He meant for me to be during this trial. I can look back and recall times that I chose to trust that I was not alone, no matter how silent and still it felt around me. I can clearly remember smiling through the toughest of days, days when I had to watch my baby’s monitor go off like the Fourth of July because his saturations were dropping or feeling so overwhelmed and lost watching Heath struggle to get his pain managed with 4-5 different intense narcotics and still feel the unbearable pain. Perhaps my smile was internal and my drive to fight for my son’s life was painted across my face, but I can remember still praising Jesus that He had led us this far and He had provided the multitude of skilled professionals, that loved Heath almost as much as I did, to care for our baby.

I am thankful that I have my faith. For without it, I would have spent some of the most important moments in my son’s life handling it in a dark depression, feeling like there was no hope. By no means, am I perfect. Far, far from that! Even more of a reason to be grateful for the hope Christ places in my life. I am glad I chose to seek His face each day, through each challenge we encountered. Having faith and the willingness to be thankful during times of anguish doesn’t mean that we were without pain and heartache. I can’t count how many times I cried myself to sleep from utter sadness or from complete exhaustion. Far too many times, I went days without eating or sleeping because I ached for my son. My pain was real. But, my Savior is bigger than that pain.

That first surgery was just that, the first one of many. Some celebrations were short lived because I knew it was only an amount of time before we hit another snag in our timeline of cardiac stamina. But, we still allowed ourselves those happy moments. Heath was a rock star! He earned that nickname after his Norwood, and rightfully so. Those closest to his direct care made mention of his ability and willingness to fight and how it raised the bar for statistic expectations. Hearing the kind of positive impact Heath was having on those around him made me one very proud momma. My hope was that Heath would continue to show his rock star abilities throughout the next phases of his care. Our journey had only just begun, but I already felt like I had aged in years. I had to stay positive and I had to remain optimistic. If I didn’t, then the next 4-5 months were going to be incredibly long.

Included are a few photos of intimate moments captured during the first month or so of our life with Heath. Some are just simply sweet. We were actually able to capture the brief moment I was able to kiss my son before they took him away.There are times when Heath could possibly pass for normal on the outside. But, some of the photos are not happy. They are difficult to look at and break my heart every time I see them, even to this day. I included them because the severity of what my son has is very real and shouldn’t be taken lightly. Like I mentioned before, the steps taken to help Heath get through life are not cures. I think it speaks volumes to see such detailed and critical medical attention being given to Heath. I think it proves his courage and willingness to fight.

Heath's Aunt Rachel and Uncle Lance

Thank you, again, for taking time out of your day to read more about Heath and his adventures in this life as a heart warrior. Like last time, this entry is not the end or even close to the end of our travels. But, I hope it sparks enough interest in his diagnosis and concern for him, that you will go one step further after reading it for yourself, and be willing to share it with someone else.

Like this chapter said, the first challenge was the Norwood. The next hurdle had obstacles all it’s own…

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"Never should I doubt where my strength comes from. Just like praising my Savior for joyous times, He comforts me and my fears each time I have left those fears at His feet."