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After moving to ad lib feeding, Audrey continued to gain weight. She was taking bottles at night and doing quite well with those as well. Talk moved, as it had in the past, to a date of discharge.

After her big spell, I was more then a bit jumpy. Whenever her monitors went off (and they did quite often as the pads attaching them to her skin would get worn), I would freak out. The nurses would tell me, “Don’t look at the monitor. Look at your baby. If something is wrong you will know.”  A few times, they removed all of her leads and let us walk around the nursery with her.

There was lots to settle before we got her home. She would need to go to Sick Kids for eye appointments every week until her ROP resolved. She needed a pediatrician before she was discharged because she would need to visit within 3 days. There would be other specialists too.

Preemie parents go home with a laundry list of problems that may affect their child because of prematurity. Babies born at ELBW (extremely low birthweight: under 1000 grams), have a higher risk of cerebral palsy, hearing loss, vision loss, SIDS, autism, developmental delays, mental deficits, decreased IQ, learning disabilities, severe respiratory infections, ADHD. You name a potential problem that parents of young children worry about and the smallest preemies are probably at higher risk.

We rushed out to buy a carseat. Luckily, we were able to find, in a store near our apartment, the only model that seemed to be available at the time that was approved (in the US) down to 4lbs. She would need to pass a car seat test to be released: sitting in the seat for several hours without having a spell. She did indeed pass.

Finally, a date was set to try the Care by Parent room: February 4th. It was a room within the nursery with a bathroom and a little bedroom with a pullout couch. Geoff and I would sleep over, and Audrey would be removed from her monitors and moved in with us. It was very exciting. But possibly more than that, terrifying. What if she stopped breathing?

The night passed without incident. Geoff rushed off to work to quickly settle a few things before her discharge, hopefully later that morning. Then a nurse came to the door with news. Audrey was due for her ROP test and the opthamologist would be coming by, either later that evening, or the next day. It was looking like she would have to stay. I asked with trepidation who would be doing the test. She saw my face when she told me that it would be the same Fellow who had done her earlier test.

When I emerged from the room, upset and a bit angry, she was on the phone. She told me hurriedly that she was trying to set something up. I watched from across the room as she frantically worked away on the phone, writing on forms. Finally, she told me that she had managed to get Audrey into the opthamology clinic at Sick Kids. It was today, so we would have to go on our way home. I was immensely grateful to this nurse, who I didn’t even really know for working to tirelessly to get my daughter home as fast as possible and for helping us to avoid another potentially traumatic eye test. I quickly called Geoff as we would need to leave soon to get there in time.

In the end, there were no tear-filled hugs, or cookies to hand out. No one asked us to stop for a photo to put on the graduates wall. A nurse or two said “goodbye” from behind the nurses desk. And we slipped quietly out the door.

While the spell was happening, I looked at my baby’s eyes. For the first time, I saw fear and struggle reflected back. A massive knot was forming in my stomach. But she slowly started to come around, her oxygen monitor registering 100%, and her colour returning. The nurses left.

A while later, the nurse practitioner asked me to come over to her desk. She handed me an incident report and asked me to read and sign it. The words flew right in and out of my head. I can’t remember much of what was written there. Only that something (her oxygen saturation?) had dropped to 30. If I had been thinking clearly, I would have had a lot of questions. I never did see that form, or any written reference to her big spell again.

Instead, all I could think of was the nurse’s implied accusation. Had I caused this by hurrying off to pump and not burping my baby? I was terrified of the answer but I asked the nurse practitioner anyway. The answer, to my relief, was no. This was backed up by the doctor, who I asked when he came to check on Audrey a few hours later. I had not done this.

As the following hours passed and she seemed okay, I began to think about my belief that she wasn’t eating because she was full. This was a baby who had struggled for a long time with feeding intolerance. Perhaps her stomach was not equipped to handle so much food at once. I came to a realization. If she had been put on ad lib feeding, like I had been requesting, this may not have happened. I knew then, finally, what certain nurses and others had been telling me. No one knew my baby the way I, her mother, did.

For the second time at the Level II, I felt the need to take action to protect my child. I decided to ask again that she be moved to ad lib. This time, I did not intend to take no for an answer. I was ready for the expected concern that she was so small and would lose weight: she had already more than doubled her size and we could always go back if it was a problem. So I called in early the next day to speak to the LC. She wasn’t available. But, the nurse told me, a decision had been made to move her to ad lib.