When Johanna was four months old, her oxygen saturation levels dipped to the low 60s. Her surgeon took one look at those numbers and declared that she would have to undergo her first surgery soon. I thought with the whole snail's pace of the public hospital appointment system, it would mean perhaps another month. Dr Shankar looked at me strangely: "With these saturation numbers, I think tomorrow we can do the surgery."
Tomorrow?! But I was still supposed to be at work! But her father was in Hong Kong!
Needless to say, Ivan's business trip ended a day early and on a Monday morning, we found ourselves back at the hospital, overnight bags and a swaddled up baby in tow. The surgery was scheduled for the next morning and Nana was subjected to a whole bunch of tests and scans. She cried and screamed for most of the day and by the time evening rolled around, she was hoarse and utterly exhausted. That night, I sat/slept upright in a hard chair by her bed. I didn't want to leave her because I knew it was probably the last time I was going to be able to nurse her for a long time. At 4am, she woke up crying and I pulled her close to feed her, trying to get into a comfortable position amidst a tangle of sensors and wires attached to her. She lay awake for a while after that, blinking quietly at me, and I told her how sorry mummy was to have to put her through all this.
When the sun came up, the nurses came in to prep her for surgery, giving her an antiseptic bath that did not go down well. By this time, she had already cried herself hoarse and would not let up unless I was carrying her. When the orderlies came to wheel her down to the OR, she wouldn't lie still on the bed, and they wouldn't let me carry her down to the OR. So I had to sit on the bed, cradling her back to me as they wheeled us both down many long hallways and elevators.
She'd stopped crying and was looking around curiously at all the people we were passing by, but I felt like my heart was breaking. The lump in my throat was getting bigger and sharper as my vision blurred and narrowed till it was just me and the warm baby I was holding on to. Her soft little baby head was up against my chin and as the tears rolled off my face, they rained onto her head. Through the haze of tears I saw my mother-in-law falling back and wiping at her eyes as she tried to hide her own tears from me.
Only Ivan and I went into the waiting area of the OR as the theatre was being prepped. I wanted to be brave for Johanna and be with her all the way till we got inside and they put her to sleep, but at the last moment, I chickened out. I was afraid I wouldn't be able to control my emotions to hand her over to the surgeons without bursting into tears. Ivan was the one who scrubbed in and carried her into the operating theatre.
A few hours later, she was wheeled out from recovery and we followed her back to the NICU. She had so many tubes and wires connected to her, and she was so still, and swollen looking, but so blessedly pink.
The road to recovery was harder than I thought it would be. The second night after the surgery, we took the nurses' advice and decided to go home to rest since she was still sedated and not conscious. We stood by her bed to say goodnight. She was so small she seemed swallowed up by the big bed and all the beeping and whirring machines. They'd taken her off the respirator earlier that day to see if she could breathe on her own, and she was, but so laboriously I could see her chest struggle to rise with every wheezing, hacking breath she took.
She looked so uncomfortable and so bloated and sick that my heart was in shards. Ivan had to take me by the shoulders and steer me out of the ward and to the car. I later confessed through tears that for a brief moment, I entertained the thought that I rather she be dead and safe in God's arms than suffer here.
It was so hard to see her so unhappy. She would fight against the restraints tying her arms to the bed rails, and cry soundlessly at the discomfort of the CPAP mask. We couldn't carry her and rock her like we did at home, we barely touched her for fear of passing on bacteria or germs from the outside. She'd cry so hard when she was not sedated, the machines beeping in warning that her oxygen levels were falling. You couldn't let her cry, but you couldn't comfort her either. For the brief times when she was conscious and not crying, her eyes would be unfocused, glazing over you. Where had my lively, feisty baby gone?
Slowly but surely though, the little warrior fought through complications after complications, adjusting to the new shunt they put into her heart, allowing more blood to pass through her lungs. Two weeks later, she had enough tubes removed so I could carry her. More than twenty days later, she was finally allowed to come home with us. Every morning now she takes a dose of aspirin, which works as a blood thinner to help her blood circulate better. While she hated it at first, she's getting so much better at just sucking it down these days without much fuss.
If you want to know a bit more about this surgery, Johanna had a Blalock-Thomas-Taussig Shunt put into her heart that directs more blood flow to the lungs to relieve her cyanosis (blueness) while she is waiting for her main corrective surgery.
I came across this great 2004 movie starring Alan Rickman about this surgery. I didn't know till I saw this movie, how historic this surgery was! It was the very first heart surgery back in an era where operating on the heart was considered in the medical community to be taboo. What's more, it was a black man Vivien Thomas who, despite not having a medical degree, flew in the face of racial prejudice and came up with this surgical solution for blue babies--infants who'd otherwise have no other hope of living.
I was very moved watching this film. Scenes of the Saxon family, whose blue baby Eileen was the first to undergo this operation, hit particularly close to home--their anxiety, their pain, their hope hanging on a thread and also, their unspeakable joy. And I felt this inexplicable sense of connection to Dr. Alfred Blalock and Vivien Thomas, I wish I could go back in time and hug them both and thank them for the work that would one day save my own daughter's life. I did the next best thing though, I thanked God for giving these doctors their intellect and their talents, for engineering the circumstances that led these two men from such disparate backgrounds together, for giving them the faith to do what everybody said could not be done so that so many children can live because of what they accomplished in their lifetime.
You can watch Something the Lord Made in its entirety here.
Or if you're a reader like me, the film is based on the award-winning Washingtonian article "Like Something The Lord Made" by Katie McCabe.
I'll leave you with an excerpt: