A few days ago I saw a message in a heart parents group I am a part of. A lovely woman is who is expecting her first heart baby within a few weeks reached out to ask for advice on the road ahead. It was a really thought provoking question. I've thought about this very thing many times, but its never something I have really sat down and genuinely collected my thoughts on. I thought back to when I first found out about Lukas' heart defect; the advice, guidance, and support I received from others. From my family, friends, doctors, and even complete strangers. I thought back on the moments that struck me the deepest and the actions that defined our path. I looked back on our stay in the hospital and things that I knew I should have done differently. I searched for words and phrases that really struck a cord with me.
What I came up with was this. The CHD journey is not something you can really sugar coat. Its raw, its deep, and it affects the very core of you. Its impossible to look a heart parent in the eye and tell them that this journey is going to be easy because truthfully, its not. Its not easy at all, but it is worth it. There are tough moments. There are times you become so numb you wonder if you can keep going. You wonder if you have the strength and perseverance to make it through this. Rest assured that you do. When tough moments surface, you somehow find that strength. You find that will deep in your bones that makes you want to fight until the very end. You draw strength from wanting your little one to get better, to come home, and to live a vibrant life that there is nothing you won't do to see that goal accomplished.
Its hard watching your little one struggle. Its devastating to stand by and know you are helpless to do anything to stop it other than being there to comfort and soothe them in their time of need. As a parent, you never want your children to suffer. You never want them to be scared and you never want them to endure hard times. This was probably the most striking lesson for me as a new heart parent myself. As Lukas declined before his operation, I had to stand by knowing everything was out of my hands. I could cry and I could plead with his doctors and surgeons to help him get better. I could plead with God and I could be there to hold him, touch him, kiss him, and whisper in his ear, but beyond that I was powerless. Its one of the hardest, deepest cutting feelings in this world. In these situations you have to recognize your own limits. I tried to stay awake 24/7 to be by Lukas' bedside. I somehow thought that with me being there and wearing my own body down that I was making a difference. I wasn't. I cried hysterically the first time the NICU staff convinced me to leave and get some rest. I had nurses and doctors constantly telling me that I needed to take care of myself too if I wanted to be there and be strong for him. They were 100% right. At the time I felt like I was being picked on because I wanted to be there with my baby. Looking back now, I should have absorbed that advice sooner. It wasn't until I was near the breaking point of my body that I finally heeded their words of wisdom. While you always want to be there and you always want to remain vigil of your little one, you need to take care of yourself too. Lukas' condition wasn't going to be any better or worse whether I was there or not. I spent every moment I could with him, but I had to sleep too. If I wanted my mind to be sharp and clear, I needed to sleep. I needed to eat. And occasionally I needed to leave the confines of his hospital room, even if only for a few moments. It clears your head and opens your perspective. Sometimes that very element is needed on this journey.
If surgery is required, especially open heart surgery, rest assured that first time you see them its going to take your breath away. No matter how many pictures you see of other children or how prepared you think you are, nothing prepares you for that being your child. Our beloved pediatric cardiologist, Dr. Farrell, echoed that same sentiment before Lukas' arrival. It is good to feel prepared. Its good to know what to expect because it does lessen that blow to some extent. If you know they are going to be hooked up to lots of machines and have lots of IV lines, tubes, and monitors, that knife cuts just a little less deep. Nonetheless, it is still your child. Its heart wrenching to see your own flesh and blood laying there receiving a level of care most people will probably never know in a lifetime. And you hope they never do. As hard as those initial moments are, remember its a benchmark. Its a milestone and everyday things come off. IV bags, lines, monitors, and tubes disappear as a signal of improvement. Jonathan said something on the day of Lukas' operation that has always stuck with me. He looked me in the eye as we said "see you later" to Lukas in the OR and said "today we get to start watching him get better, not worse." I cannot tell you how true this statement is. Knowing they are on the road to recovery and knowing their lives have taken a positive turn makes it just a little easier to see them in those initial hours after an operation. I remember comparing Lukas' heart monitor before and after his operation. As he got better I remember his respirations being within a normal range. I remember his heart beat not being so erratic. I took comfort in these things. I took them as a sign of his improvement. As far as I was concerned, the day of his operation was the first day of his new life. He did things after his operation he had never done before. He smiled. He cooed. He stayed awake through a feeding. I cannot tell you how remarkable those very simple things felt. They meant he was getting better. Thinking of open heart surgery is a scary prospect. Like any medical procedure, things can go wrong. Your mind typically drifts that direction when you get news like this and almost immediately. You always think of the bad before you think of good. Its a pretty natural human reaction. My advice on that subject is this. Be cognizant of the bad. Be aware that things can go wrong, but don't dwell on it. Don't focus all of your energy on the bad. Instead, devote it to the good. Look at success rates, talk to other parents whose children have been through that operation. Find a surgeon who feels right. Ask questions. Ask anything that helps to ease your fears no matter how minute it feels. Whenever the bad creeps in, replace it with the good. Never let that negativity or fear linger. You just have to remember in this situation, it is what it is. Good, bad, or indifferent, you're here. Certain bridges have to be crossed in order for improvement to occur. Embrace these bridges. Embrace these steps and welcome them, for its the pathway to improvement. Its the starting line of a better life. An incredible life. Have faith and hold onto it. Never stop believing and never lose that faith.
Some of the most powerful memories I have of Lukas' journey are the photographs I took while in the hospital. Both before, during, and after Lukas' operation. Not a day went by that I didn't photograph some aspect of his life and I'm so glad I did. I treasure those photographs. So much so I couldn't even delete them from my compact flash card even after I had uploaded them to my computer and archived them. I actually "retired" that CF card. Its kept in a safe place and it will never be used again. It might sound strange to say that I hold so close to my heart photos when my son lay in a hospital, but I do. Its a part of our history. His history. I look back on those photos and they evoke such strong emotions. They are a reminder of where our boy was and how far he has come. Those photos are so powerful that they can tell Lukas' entire story without me having to say a single word. There will be days you don't think you will want to remember, but I promise you will. Photograph every second. Let those photos tell a story. A beautiful story. There are moments forever forged in those photos that I never thought I would want to remember, but I'm so glad I paused long enough to capture them. You will be too, I promise. You will look back on those photos with a fondness and appreciation I don't even have the words to explain.
I've said it a million times since Lukas' journey began and I will say it again. The road is hard. There are lots of bumps and lots of rough patches, but what lies on the other side is pretty miraculous. Those who don't know what Lukas has been through look at me with this profound disbelief when I tell his story. Unless you see his scar or witnessed some aspect of his struggle, you'd never guess his first months of life were not "typical." Bad things happen and you never really know what to fully expect because everyone's CHD journey is a little different. I don't think any two people ever really walk the exact same road with this stuff. But you live for those good days. You bask in knowing that right now, nothing needs to be changed. You learn to appreciate those days. You learn to live one day at a time and appreciate that day for everything it contains. You'll gain a new found sense of the world around you. You'll be forever changed, but in a good way. You will be stronger and you will leave with a little more than you came with.
That's my advice for any parent finding out about a heart defect, illness or hardship you know your little ones will endure. They are words from the heart.
Happy Hump Day friends =) 'Til next time...