Hartman's Story - Part Two — The MooLily Village

by Christina

There we were, minutes after Hartman’s birth, staring into the eyes of our beloved baby with joy and pride….

The sense of euphoria that comes to every mother after the birth of her baby was cut short. You see, Hartman was safe and protected in the womb, able to grow and develop. But now he was here! My body was no longer sustaining him. His heart condition came into play the moment he came into the world and breathed oxygen for himself. The danger of his medical complexities became an immediate reality.

Hartman’s initial diagnosis was Pulmonary Atresia, which means the primary artery that brings oxygenated blood from his lungs to his heart was blocked. As a result of this he developed Hyper Plastic Right Ventrical, which means that the right side of the heart didn’t develop either and was very, very small.

So after holding him for about 20 minutes we kissed him, prayed, and handed him over to the Nieonatolgoist.

He and his team examined Hartman, ran their tests, and gave him some medication. I didn’t resent the Doctors. I was grateful for their knowledge and skill and the care they had taken of me and now my precious baby. But it was unyieldingly difficult. I don’t actually know how to describe how I felt. It was so counter intuitive.

Mostly, I felt such sadness for Hartman.

New little babies should be held closely and softly by their mammas and daddies but, instead, he was taken into a room with bright lights, had his little hands tied down so that they were able to put monitors on him, IV lines into him, and check him over thoroughly.

It’s in these moments that I have to trust that the Holy Spirit was close, holding his heart and soothing his mind.

Hartman was moved immediately into the NICU. He was far and away the biggest baby in that ward. He looked so beautiful and perfect; it seemed that he didn’t belong there. But we did our best to jump in, along with many other parents (who didn’t want to spend their holiday season in any sort of ICU, let alone with their new baby in one).

This new routine was very challenging for me. I live on the anemic end of the spectrum and often have very slow and difficult post-partum recovery. After my previous baby, August, was born, I spent the week in bed while my wonderful mother-in-law cared for me and my family. When I needed to go to the bathroom I would crawl on my hands and knees because I was so lightheaded I was in danger of fainting. (It was a little pathetic.)

That wonderful care was not a luxury even slightly available to me this time around. I was discharged the day after I gave birth and then had to walk almost half a mile back to my car… drive home for a short nights sleep and then back in the morning…park the car, go up the elevator, go through security, walk, walk, walk, up another elevator, check into the NICU, sit down for an hour…no wait it’s time to pump.

I really wanted to be able to nurse Hartman when he was able to eat, whenever that would be.

(They kept his stomach empty for the nine days before surgery because digestion requires a significant amount of blood flow and circulation that he could not spare. So they kept him going with IV fluids and some basic proteins.) This was another sad reality of his situation.

His little vanilla flavored binky was all he had to suck on.

Long story short, my body wasn’t up to the daily arduous commute. The cold December weather, the loss of blood, all that my body was doing to recover from delivering Hartman, the emotional stress of caring for my other children as well as being with Hartman in hospital, was far more than I was up to and I became very sick. I was hit hard with some kind of virus that came with a raging temperature and miserable body aches that took hold of me.

Up until this point I had been very brave.

I had my Aussie digger boots on and my English stiff upper lip. I was determined to be at my best and make the best of this situation. All the staff were amazing, we had people watching our other kids and bringing us meals and people all over the world praying…I owed it to them, not to mention Hartman, to be strong. But I had the strong knocked out of me and now I was just weak. I remember laying in my bed alone with hot tears running down my cheeks, feeling the despair of my situation set in. I should be with my baby. But I couldn’t be.

It took me several days to recover.

Rest was all that I needed and my body forced the issue. I then had another couple of days of being completely symptom-free before I could go back into the hospital. But as soon as I could, I was there, holding my sweet boy again. We had just a few days until Christmas and then surgery on December 26 for a procedure to install a BT Shunt, which was essentially a little artificial artery made out of gore-tex, which would allow some blood to flow from his lungs so that they could close the hole in his heart.

Any surgery on a baby is a ‘Major Surgery,’ but this was a MAJOR SURGERY! And it was to be the first of three surgeries that would take place over 3-4 years. They talked us through it all and what we could expect over the course of his recovery but nothing could prepare us for what we were about to see. When they wheeled his little body back in, and I saw him laying with his arms and legs spread wide and limp, I was overwhelmed by the sight of him.

Babies never lay on their backs all spread out. They are always curled up. It looked so unnatural. He had lines coming in out of his neck and groin, and leg and hand. He had a breathing tube and a blood pressure cuff. The thing I noticed first was that he had a piece of gauze taped over his wound that was blood stained.

I felt the tears hit the back of my eyes. I put my hand over my mouth and tried to cover my shock.

I wanted to be happy to see him (and show they staff that I was cool…for some stupid reason), but I wasn’t ok. I so upset. I didn’t know how to respond. Oh my precious, precious boy…I’m so sorry!

We sat with him for several hours, gently holding the top of it head and stroking his little fingers and toes. It was all that we could touch. I wanted so much to pick him up and hold him in my arms. That’s where he belonged.

We were tired from a long day and the doctors recommended we go home and get some rest. He was heavily sedated and would not be aware of our presence or anything for several hours. So we decided to do that. We went and picked our other 3 kiddos from a friends house and headed home.

As soon as we pulled up on the driveway we got a call from the hospital saying that Hartman's little body had gone into shock and they thought he’d had some kind of a heart attack.

They said they might have to take him back into surgery and that we needed to come back right away. We dropped the kids back off and flew back to the hospital as fast as we could. My head was in a swirl; I honestly have very little memory of that evening. Shock and sheer exhaustion overwhelmed me but adrenaline carried me and I just kept moving forward.

Hartman rallied through that episode. They didn’t have to take him back into surgery. Now we were on a different floor in the PICU and we were able to stay with him. Although we had some pretty rough sleep, it was so good to be with him all the time.

We had people all over the world praying for him and we knew that he would live and not die. We knew this because we had sought the Lord before he was born and asked the Lord for aspecific word to carry us through this season and three things emerged as clear as the sound of my babies cry.

The first was so simple: "He will live and not die,” which was exactly what we needed to hear. Jesus, in His infinite wisdom, cut straight to the heart of the issue. So in that moment, where we faced a traumatic emergency, I was not afraid that he would die. My emotions raged. Fear was present; don’t get me wrong, I was a mess. But I had a deep seated assurance that he was going to make it through this.

The second was this phrase “His life will defy the odds.” There were many predictions about his development and his capacity and we wanted to plan for these things and be wise but we also wanted a miracle. We asked God to heal him. We asked that on one of those hundreds of ultrasounds we sat through that they would discover that he was completely whole. But the sense we had from the Lord was that there wouldn’t be one big miracle but many small miracles over the course of his life. And almost that, walking through those different struggles, he would become stronger and broader in his character. In the three and a half years we’ve known him this word from he Lord has defined him.

And lastly, there was the promise that the his life would bear witness to the goodness of God. Before Hartman was born, as James and I prayed together andlistened, I had this amazing picture of James standing on a stage in front of a crowd of thousands of people holding Hartman, as a 4 or 5 year old little boy. James was holding the microphone and was telling about the kindness and the goodness of God. The sense I had was that because of his journey, through pain and difficulty, (which will on, some level, be life long), he will have a unique authority to speak into the kindness and goodness of Jesus and that the Lord would use his innocence to melt the hardened hearts of adults.

We’ve talk about this a lot on the MooLily podcast, but being blessed, having the ‘good life’, being a good parent or having a good marriage, living life with joy and inner strength is not the absence of weakness, pain or conflict but rather finding our way back to the Lord in those times and being able to return to our true selves to walk through the storms (and cool grassy meadows) WITH Him. Allowing our hearts and our hands to surrender to the Lord is the most powerful act you can make in this life. And you won’t do it just once. There are the big things, like my precious son, that you hope you only have to do once in a life time, and then there are the little things, like someones good opinion of me, that you choose daily.

In the season to come I would learn, (or wrestle and fight and cry my way through), this lesson again and again. The garden on my heart was in survival mode. There were not many flowers blooming. While the greatest lifestyle change I had ever experienced took place, it would seem that the soil of my heart was a little dry, inflexible and hard.