It’s been several weeks since Hartman’s big surgery.
Even as my precious little man is still recovering, I can’t say that I’ve quite fully recovered, either. Unexpected re-admittances have made life quite trying for our family. But we are so grateful to be supported by our wonderful community.
Today, I want to share the story of that last surgery, and what the Lord has spoken to my heart as I've reflected upon the process.
I rolled out of bed around 4:30am on Monday August 21st… the big day. Surgery day. I had a shower and got ready to leave. I hadn’t slept well. I’m a light sleeper and was so aware of the day that loomed before me, and the need for me to wake up, that I had been on constant high alert all night long.
We got to the hospital at 6am and began the process of preparation: checking his vitals, running through his last consumed food and fluids, meeting the anesthesiologist…wait what time were his last fluids?
Milk is considered a solid?!
I had given Hartman a small drink of milk at 2am. I had been on autopilot, wanting him to go back to sleep easily. I thought milk was ok. Rookie mistake! I should have known better! This was a bad start. They had to delay surgery until we were at least 6 hours without anything in his stomach.
I swallowed back my embarrassment and frustration until the nurse left the room. Then the tears began. My husband looked at me and said, “What?! It’s fine!”
IT IS NOT FINE! The one thing I had to do in this whole huge orchestra of skilled professionals and I messed it up!
All we could do was sit and wait. Hartman, blissfully ignorant, played happily on the floor or on our laps. The time passed easily and it was in fact, fine. A storm, it would seem, in a tea cup. They gave him some medicine to make him feel like a very happy little drunk person who won’t remember his antics from the night before. It was seriously the cutest thing! He lost all inhibition, which a three year old has very little of in the first place, and said and did the funniest things while stumbling about.
This changed the mood considerably.
There’s something so beautifully disarming about the innocent joy of a child. It’s so important to just breathe it in every so often, like a ventilator when we’re feeling restricted by fear, and allow it to open the airways and allow peace to flow through our hearts and minds.
Glassy-eyed, we said good bye with a kiss and a squeeze in the hallway outside the OR and swallowed hard as we began to walk away. I stopped and leaned into James’ chest. He put his big arms around me and, without saying anything, took a deep breath.
From this point, until we saw Hartman again, the day went smoothly. We got breakfast and waited in a sweet little room in the Ronald McDonald House, which was calm and quiet. The surgeon assistant nurse reporter person (her actual title) came by about 3 different times and gave reports that everything was going well. At one point she actually said, “It couldn’t be going better!” which was quite a statement to make in a situation like that.
Some dear friends brought us Thai for lunch, which was delightful. I always find that good Thai food fixes most things. We borrowed some eclipse glasses and stuck our heads out the window (figuratively) to look at the sun, which was a nice distraction from what we were really there for.
Finally, the time came. Hartman was in the PICU and they were ready for us to see him.
As we walked into the room and I saw his little moon face and his sweet crop of strawberry blond hair, I felt subtle relief set in. He was cluttered by all the wires and cords, the breathing tube and thermometer strip across his forehead, but he was beautiful. He was sleeping soundly with a hand-drawn Superman emblem over the dressing on his chest. He looked brave as he slept.
He did it! We made it. The worst part was over and he was going to be ok.
It’s so important and necessary for these involuntary opportunities to land, when you forget everything and just breathe in the moment. Because sometimes, looking back, it feels like a bit of a lie. We hadn’t made it all the way through and the worst part was far from over. True, the most crucial part was done; they had made the repair to his heart and it had been successful. I was grateful, but I knew it wasn’t over….
The next 12 hours were harder than I possibly could have imagined.
Unbeknownst to us, the cardiac team had implemented a new post-op recovery process that sped up recovery…thus getting us home sooner. Yay!!! But, this new process also required a great deal more of us as parents. Boo!!! My role in his previous surgeries had never felt so vital...I didn’t feel qualified or emotionally prepared to play an integral part in the care of a 4-year-old recovering from heart surgery!
My very basic understanding of the post-Phontan recovery process is this: in the same way that swelling occurs if you break a bone or sprain your ankle, bringing fluid all around the injury to protect it and help it recover, this also happens with your heart. The major problem with this normal process happening near the heart is that fluid on the lungs is a BIG no no!
To combat this they increased his oxygen intake and kept him on a low fat diet. They also significantly limited his fluids…particularly water. This was the kicker. After having the breathing tube removed from his wind pipe his mouth was dry and his throat was hoarse.
He was desperately thirsty and he couldn’t drink.
They gave him a couple of ounces to quench his thirst and then he was allowed one ounce every hour. Just think about that measurement for a moment. A can of soda is 12 ounces. A cup is eight ounces. Two tablespoons is the equivalent of one ounce. And when you’re desperately thirsty, it’s as good as nothing.
This may have been the longest night of my life.
Hartman would get his dose through a straw; we’d tip it up, while tapping it, to get every last drop. As soon as we moved it away from his mouth he’d say, “Can I have some more? Please, please mommy can I have some drink?” I’d respond as kindly as I could, “I’m sorry buddy we’ll have another drink in a little while,” knowing full well we had another 58 minutes to wait. In his sweet nature he would comply, saying, “Okay,” then minutes later he’d try a different strategy. “Can I have a Tea?”
“No buddy not right now.”
The negotiation continued with the best manners he could muster.
“Please mommy, can I have some B’croix?”
“Oh buddy, you’re such a good boy,”…(don’t cry mamma)… “we need to wait a little bit longer. I’m so sorry! Why don’t you try to go to sleep?”
This begun at 5pm and continued until 10ish when he finally fell asleep. Every five minutes, turning my sweet boy down, who had been through so much and was so clearly unhappy, denying him a simple cup of water…it was just not fair. I was exhausted and emotionally spent. (Not to mention reaching dehydration myself because I couldn’t have a drink in front of him!)
But this torment wasn’t the only thing he had to deal with.
He had to have a Cath put in because he wasn’t peeing, and peeing is the primary way that you expel excess fluid…which he needed to do! For boys, catheterizing is a particularly traumatic experience, (I’ll spare you the details). They couldn’t get it in so after three attempts he was beyond miserable.
Hartman slept for 2-3 hours and then he began again. “Please mommy, can I have some drink?” and continued until 4am when there was a hard stop. He couldn’t have any more liquids until he went in to get a central line put in, around 10am, and they would put him back under a general anesthetic. More than a few expletives ran through my mind…You can not be @#%&*$# serious!!!!
It broke my heart.
I requested ice or a wet sponge but anything they gave him they would have to deduct from his hourly drink. I was pretty upset at 3am and by 5am I was losing my mind! The nurse saw I wasn’t messing around any more; she got the team and figured out something to help him sleep.
I slept for a couple of hours and then bizarrely found myself in the same situation I was in the day before, sitting with the nurse while she explained what was going to happen. Signing the paper work. Meeting the anesthesiologist. Giving my baby a kiss and saying good-bye. In a haze I went back to the room.
All I could think was, “How the heck are we going to get through this week?”
Slowly but surely things did get better. We went up to the floor, which was much more comfortable for everyone, and I was put in charge of administering the fluids. As long as it stayed with the restriction for a 24 hour period he could drink as much as he wanted in one sitting. This made all the difference in the world; he was content for longer and would rest better.
He also had his own TV! Let the movie marathon begin!
I was encouraged by these little positives, but it was still a hard place for my mother's heart. Emotionally, Hartman was very flat. He had some random spikes of pain that were hard to watch and he wasn’t being as active as they had hoped but, in general, his recovery was going well. It was so hard for me to gauge. I didn’t trust my instincts. I knew his numbers were good but he was just not himself. There was a decisive ‘No’ given to any question or request or even greeting offered to him. He didn’t respond to me except to be upset if he thought I was leaving him.
Everyone said, “This is just a 3 year old”… but this was not my 3 year old.
These are the times that we carry our children’s hearts gently. Wanting to call out greatness and protect and comfort them, there is often no right way of responding so we just have to do our best.
I did my best.
And…don’t underestimate the power of daddy! James is definitely the more fun parent and when he stayed with Hartman new and wonderful things would take place. He was eating, taking his meds better, and being more active.
Within just a few days they pulled his drains, the last big thing we were waiting for, and the team felt we were ready to go home. I had mixed emotions about this.
I always want to go home…but Hartman still seemed so fragile.
The morning we were scheduled to leave he threw up twice. (Some of his meds are hard to choke down and are also very hard on your stomach.) We had no fresh clothes, so we went downstairs with him in a diaper and his slippers.
Being discharged is a victory and is meant to feel happy and hope-filled, but on this Thursday morning, as I sat in the bustling lobby of this big children’s hospital waiting for the carseat technician, with my little guy on my lap, his incision covered only by steri-strips, on display for the world of people (not to mention the world of germs) to see…it was such an anticlimax.
We got home and Grandma Sue came out to meet us and gave me a big hug. She said, “I feel like I could cry.” I completely understood. We had made it. We were home but something told me it wasn’t the victory that it was meant to be and I wasn’t ready to engage in that relief.
The first night was awful. Hartman threw up again and then slept for 4 hours. I couldn’t wake him to eat or drink. The time for his next meds rolled around and I didn’t know what to do. I stood at the kitchen counter silently, tears rolling down my face, measuring out each dose of the 5 new things he had to take.
Then an angel knocked on my back door.
It was my neighbor, Laurisa, who just happens to be a pediatric nurse. She was dropping something off but found me in my sad state and stepped in to help. She said, “Let me do his meds. I don’t mind making him mad. It’s my job.”
I never cease to be amazed at the miraculous timing when Help shows up. There are times when we feel like we’re forgotten…but we are never forgotten by Him. The Lord knows what we need.
As I sat down to share this story, I wanted to write a powerful testimony about God’s faithfulness and healing power. About how He spoke to me and revealed to me what was going to happen or how I needed to be prepared, how I walked up out of these trials in great victory…but that story didn’t roll out.
I think the theme of my story is how the Lord sustains us in our fragility.
It often doesn't feel either glorious or profound, but He has a way of carrying us when we need Him. Romans 8:26 comes to mind. “In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.”
This verse gives me so much comfort because recently I would give my prayer life a C-.
Obviously, the very concept of grading your prayer life is ridiculous. There aren’t many measurable instructions in the New Testament of the rights and wrongs and dos and don’t of prayer, simply a constant invitation and example set by Jesus to come away with Him.
Please understand that God is faithful, and was incredibly faithful to us and kind and generous and prepared us in ways we couldn’t have known. This can’t be overstated, but I want to write the way the Psalmist did, with honesty that glorifies the Lord as we look at the darkness and the light of the landscape of our lives. For me, this is how the true character of God emerges.
I think this is also how Jesus lived: Simply but honestly, full of love and without fear; through this the Father and His ways were made known. It was not a choreographed performance with any measure of flounce.
My heart cries out with the Psalmists in prayers like this, “Be merciful to me, Lord, for I am in distress; my eyes grow weak with sorrow, my soul and body with grief.” Psalm 31:3
Weak and weary is how I would describe myself. My heart is also filled with gratitude that this is the God we serve: a merciful one who draws near to us in our weakness and sorrow.
As I look at my life and all the dreams and ambition there in and then at all the tension of the precious things around me that divide my time and attention, I’ve come to this (quite possibly Holy Spirit led) conclusion…I want to do what the Lord has called me to do with faithfulness and integrity.
So if that’s on a stage or with a podcast, Hooray! Or if it’s cleaning my house or sitting with my daughter and being present while she wrestles through her undefined emotions, or in starting up that conversation with my unsaved neighbor….then so be it! I will do just that with contentment.
The Lord never said that He would rain praise for the talented or successful but that His affirmation was offered, His resounding ‘well done,’ will be pronounced only to the faithful! (Matt 25:21)
Faithfulness and humility. That’s it!
I believe God works to build great men and great things and absolutely celebrates our triumphs and achievements… but He doesn’t need them from us.
When I let myself dream, my heart dreams big. I would love for MooLily to have far reach and deep influence…like Oprah Winfrey or, better still, Joanna Gaines and Magnolia, (my husband has many Chip Gaines like qualities), and a real-estate business, a retail store, a magazine, several published books…I can keep going!
If the Lord chooses to do that with my life then Hoorah! But, if He chooses for my life to not be known but for me to be like that woman in your life, who has impacted you by being present, by praying for you and bringing a timely word of wisdom (and probably a lasagna too), by standing up for you and keeping you accountable…Hoorah as well!
It’s these women that change the world!
Mother Teresa was a woman who, despite her vows (google them, so fascinating!) of stability, obedience, poverty and celibacy, was one of the most powerful forces for good the world has ever seen. She became world famous and spoke to Kings and Presidents, appeared on television, was quoted and was admired across cultural and religious boundaries. In one of her most famous quotes she says:
I am a little pencil in God’s hand…
He does the writing.
The pencil has nothing to do with it.
No self- promotion there, only utter surrender. Now that is inspiring to me. That is where my heart longs to live.