Four years ago today, we almost lost Josie.
At six weeks old, Josie was still a bit of a mystery to me. From birth, she could not latch on and nurse like my other children were able to. We spent the first three weeks of her life finger feeding her breastmilk. Josie wasn't able to suck efficiently and she would tire herself out and fall asleep before she was full. I had to switch to formula, supplemented by nursing.
Josie's nose always sounded congested. I called her my little Snuffleuppagus or Snuffie. We were constantly spraying saline into her little nostrils. The aspirator was our best friend.
It was the week before Easter, and Josie was showing signs that she was coming down with her first full fledged cold. As soon as I noticed it was more than her normal congestion, I made an appointment with the pediatrician. I felt like a first time mom as the doctor patted my arm and said, "just a cold."
By day three of her illness, she was getting worse so it was off to the pediatrician we went. Unfortunately, our regular doctor was out, so we saw the doctor on call. While in the office, Josie vomited all over me. As I stood there with my shirt completely drenched and sticking to me, the doctor proclaimed, "just a cold" and he sent us on our way. After countless calls to our pediatrician over the next few days and a visit to the emergency clinic after office hours, I was tired of hearing "just a cold."
The day before Easter, Josie was feeling a little better, so I bundled her up, drove to the mall, and had her picture taken with the Easter Bunny. When we arrived home she seemed a little off, so I called the pediatrician again. He instructed me to strip off Josie's onesie and watch the rise and fall of her chest. No retractions. I was told to keep doing what I was doing – saline, aspirator, and humidifier. It was just a cold.
Looking back at our Easter pictures, Josie's coloring wasn't right. She was a bit more tired than usual, which would be expected being that she was sick all week. Then, late Easter Sunday night, she spit up and her lips took on a blush tinge for a few seconds after she vomited. I consulted Dr. Google and she had all the symptoms of reflux. She didn't spit up again, but Pierre sat up holding her and watching her all night long.
The next morning, the receptionist at the doctor's office told us to come in at noon. We took the appointment, but we drove directly to the office. We didn't intend to wait another minute. We arrived and they took us back almost immediately. I unbuckled Josie from the carseat, and I was surprised by how limp she was. The nurse ran to the door and called for help. Soon, the exam room was filled with doctors and nurses hovering over my limp, grey baby. My other children were shuttled out of the room and one of the nurses kept them occupied. The pulse oximeter showed Josie's O2 saturation was 40%. My pediatrician shouted, "call 911." What would have happened if we waited until noon? Why didn't I take her straight to the hospital? Wasn't this just a cold? I have never been so scared in all my life.
The EMTs arrived and I was told they were going to stick a needle called an IO into Josie's shin bone to be used in the place of an IV. She was too weak to scream as they jabbed the needle into the bone. Before I knew it, I was in the ambulance with Josie helping give her her first albuterol treatment. A few hours later, I kissed my baby goodbye right before they loaded her on the helicopter en route to the children's hospital. I spent over an hour not knowing what was going on, drinking in the smell of Dreft as I sat in the car holding a bag filled with Josie's prized possessions and feetie pajamas.
I ran into the Emergency Room, not knowing what to expect. All the worst case scenarios ran through my head. The nurse brought me back to a darkened room. There was a large metal crib in the middle of the room surrounded by machines buzzing and beeping. Inside the crib was a little nest, lovingly made out of receiving blankets. There, in the center of the nest, was my little Josie.
Over the course of four days, I met so many pediatricians, pulmonologists, cardiologists, immunologists, and gastrointerologists. Josie had suffered an Apparent Life Threatening Event or ALTE. Now, they needed to figure out what caused it. The tests came back negative for the Flu and RSV. I sat by Josie's side as she underwent an EEG, EKG, Echocardiogram, and an Upper GI. She had countless blood tests and cultures done. The nurses would suction her perpetually stuffy nose with a tube attached to the wall. Picture sticking the nasal aspirator on the end of the vacuum hose.
Josie was diagnosed with a bad case of Bronchiolitis and High Grade Reflux. She was started on thickened feeds and I gave up on any hope of ever exclusively nursing her again. Finally, on April 16, after she received her last infusion of antibiotics and we were sent on our way with a stack of prescriptions, appointment cards, and a nebulizer; and so began our countless visits to specialists who would help us unravel the mystery that is our daughter, Josephine Eloise.