I had two doctors come in to talk to me about our different options, the first was having us consider switching to comfort care and letting her die slowly. “We didn’t come this far and put her through this much just to let her die,” I thought to myself.
It had been 6 days since Maggie had been peeing blood and no one could tell me why. It was suspected trauma from the VCUG when they released the dye in her bladder to be seen on an x-ray and the liquid can sometimes distend the bladder and cause bleeding. But for it to go on for 6 days? It was very concerning.
Her hemoglobin was dropping steadily with it down to a critical rate. And over the course of three days, NOBODY could get IV access. Maggie’s veins are so thin and fragile that every IV would fail almost instantly. The doctor even asked me to tell him how much I was wanting to fight for her because he was already giving up on her. And it was all because of her diagnosis.
“Trisomy 18 this. Trisomy 18 that. She won’t even live long as it is so if you want to do comfort care now, that is an option you just have to let us know.”
How can you assume this beautiful baby with big blue eyes doesn’t want to live? I had never felt so lost.
By the grace of God and His mighty miracles, a NICU nurse managed to get an IV in her hand in the middle of the night and they did an immediate blood transfusion. Within 3 hours the IV stopped working. But the blood was what she needed the most and got it she did.
The decision to insert a Broviac line was not an easy one. I had only just given my final decision an hour before the surgery. A Broviac line is a semi-permanent IV accessed through a port that’ll make it so she never has to be stuck again and we never have to have another crisis of needing blood but not being able to get an IV.
In fact, when my options for Maggie were presented, the Broviac line was not one of them. It wasn’t until I called Dr. Gates for guidance on what to do. She was the one who suggested it. But I hadn’t realized it would be a surgical procedure.
The risky thing about the Broviac, along with any other “invasive IV” is that they’re at high risk for blood clots. And we already had this fear because Maggie got a blood clot from the central IV in her leg. Were we willing to take that risk? The Broviac is so close to her heart. Having a blood clot that close could be incredibly dangerous, if not, life threatening. Another risk of the Broviac is damage to the lungs because it is right there next to it.
It was difficult letting go of my heart as I watched her wheeled to the OR, but I knew was in good hands with Dr. Pearson. And within forty-five quick minutes, she was back. It had gone perfectly.
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