There we were, home at last with our new baby! He was going to be ok! We were going to be ok. We were tired and we definitely had some challenges ahead of us, but we felt empowered by our team of Doctors and relieved to be back in our own space again.
We were going to do this thing and it would be awesome.
We arrived home from hospital with a whole set of equipment; there was oxygen, scales - he had to be weighed with a dry diaper every day, an oxygen saturation monitor that showed his heart rate and oxygen levels, (which we had to have Hartman sit with for at least 20 minutes twice a day.) And then the medication regiment of six different things that had to be administered twice a day. All of this had to be written down in Hartman’s Heart Log.
I’d like to think that I’m a relatively organized person.
There’s plenty of mess in my home and last minute rushes to get everyone in the car for school or church, because we forgot what day it is or what time we were meant to leave. But my children are always fed and the laundry is always done. I take the responsibility of caring for my children and my home seriously.
But detailed…I am not!
Planning and documenting dates and times and weights and numbers…this is not me! So tracking all these things accurately, at the same time every day, was overwhelming.
I also had a new, part-time job. I had to manage all the appointments for this special little fellow. Nurse home care twice a week, the cardiologist weekly to start with, and then every other week. We had to set up a new PCP. (Whats a PCP?!) There was so much new information, so many details, times and addresses, people and names and roles that I was meant to know and keep track of. It was beyond me. I did my best. But every single time I felt like I had just gotten my head above water I was knocked back down again by something.
It was only 3 weeks till we were back in hospital again. Sigh.
He had a virus. Something pretty harmless to the rest of us, but his numbers were dropping and nobody was going to take any risks with the fragility of his current condition. He essentially had half a heart. Half the capacity to pump blood to all the major organs that were filtering his blood, causing his lungs to expand, to digest and process the nutrients he needed, and enable his brain to operate.
I honestly can’t fully comprehend how that works. He is a little miracle.
As I shared before, from day one the plan for Hartman was a series of three surgeries. The first surgery was to install a BT Shunt, which was essentially an artificial artery that would shift the pressure and bring some blood flow from his lungs to his heart. The second was called ‘The Glenn,’ which was taking the Superior Vena Cava, the major artery that runs from his brain and upper body into the right side of his heart, and plumbing it into his pulmonary (lungs) artery. The third surgery, which he is about to undergo, will be to put the Inferior Vena Cava, that runs from the lower part of the body, into the pulmonary artery, so there will be virtually no flow of blood into the right side of the heart.
I don’t know if that all makes sense. It is terribly complicated.
But it was at this initial early point in the process that he was the most fragile. Our only goal was to keep him healthy so that he could grow to be big enough for his second surgery.
James made a beautiful photo book of our family that year and titled it “The Year of the Hospital," which about sums it up. We lived in the hospital that year! I’ve decided I’m not going to bore you with all the ins and outs and back and forths and ups and downs of that next year. Except to say that we were admitted 11 times in nine months. Our care coordinator said that we literally won the prize for the most communication, appointments and admissions for the time between the first and second surgeries.
That is a prize I would gladly forgo.
I learned a lot about myself in that season. I know that I’m good under pressure and, for the most part, I rose to the challenge daily. I think the love of a mother for her child will cause her to do all sorts of things she never thought she could do. But I also discovered that perfectionism takes many different forms. I would announce to the world, and laugh at myself, when I would mess up details. I had all the grace in the world for myself, with my messy house or the box mac’n cheese my children were eating, (although it bothered me). I knew that that wasn't important right now.
But my emotional stability was a non negotiable! Sure, I would receive prayer and talk about how difficult it had been in nice christian circles where that was expected of me. But if I REALLY struggled, if i wanted to cry and couldn’t stop, the guilt and condemnation came down hard. I remember being in a skype call with my small group and describing this feeling of getting home from the hospital (again) and getting into a routine and feeling some sense of normality, and then something else would come up and we’d be back in hospital and I was starting all over again.
The emotion overwhelmed me as I described my current life and I started crying, like really crying, big, messy, ugly crying! I was in the basement and I couldn't find any tissues so I got a roll of toilet paper, like a total pleb, and sat there blowing my nose. I was so embarrassed. As I was talking, I was apologizing for my pathetic behavior and then, in the days and weeks to come, when one of those sweet women, who were dear friends, would ask me how I was doing, I would point back to that night and apologize and laugh at how silly I must have looked.
Why did I feel the need to do that!?
Because it was my identity to be strong.
I know I’m not perfect. I’ll never be the smartest or richest or most capable, but I'm resilient and innovative and resourceful. I’m a get-it-done person. But this was not a get-it-done situation.
All of my bravery and perseverance were not going to fix my Hartman.
So, like in every season of life, the Lord lead me to a place of surrender. I wasn’t very good at it. I just had to keep coming back to the truth; Truth that I believed and had filled my heart with since I was a child, that the Lord is good and He is faithful.
This was like a winter season for the garden of my heart.
There was very little activity on the surface. No color or growth, but my roots were being established. There was water, living water, deep below the ground and I had the choice, when faced with the harsh reality of my daily life, to become hard and withdraw from that water (which was the choice I made some days), or to allow my heart to go deeper. To draw on the Lord on a new level, in a different way than I ever had before.
Jesus is so kind. He drew near to me. I really believe there is a special mommy grace. Psalms talks about how, ‘He gently leads those with young'; He was so gentle with my fragile heart. Any small turn I would make towards Him, He would pour Himself into me. Any time in the dead of night, when I was feeding my little man and my heart would surface, while my mind was still asleep, with sincere but unformed gratitude to Him, I would feel the full warmth of the pleasure of the Father.
Our Hartman made it to his second surgery. He was strong and brave, just as the Lord had predicted. And from that time until now, almost two years later, we have not been admitted once!
As I write this we are only 5 days out from his third surgery.
There are many different emotions running through me and most days I’m not very strong (and that still bothers me), but Jesus has always been faithful and I hold tight to that truth that I know not just in my mind, but in my muscles and the muscles of my emotions.
Thank you Lord that You are near!
End of Part Three...to be continued.