“We want to take this girl home. We want to relax on our couch, just the three of us – no beeps, no nurses, no strangers, no pumping… we just want privacy, quiet, home. Being in the hospital is hard – as a patient or as the parent of a patient… We’re ready for this phase to be over with.”
Area 11 consisted of 8 isolettes and, generally, 3-4 nurses to look after the babies who filled those isolettes. Each isolette had its own nurse’s area stocked with supplies and an ample amount of space for exactly four visitors to crowd a baby’s bedside. Each baby was tied to a monitor with wavy lines tracking his/her pulse, oxygen saturation and respiratory rate, sounding alarms when one or the other was too high or too low.
It was not uncommon for the room to hold 8 babies, 3 families, 4 nurses, 2 specialists of some kind or the other and a doctor making his/her rounds all at the same time. We’d pull cloth partitions tightly around the isolette that housed our baby and the machinery she was requiring to survive in order to give ourselves even just a tiny bit of privacy, but the cloth did not block out the noise.
Beeps. Alarms. Conversations. Someone mindlessly tapping. Alarms. Conversations. Someone scooting a chair across the room to their baby’s isolette. Someone pumping. Beeps. Conversations. Babies crying. Alarms.
I hated the noise. I hated that when I was with my baby, I wanted to be anywhere but the one place I could be with my baby. I hated that I would find reasons to leave the room she had to stay in, just to escape the noise. I hated being there. I hated that I hated being there.
I had a friend suggest I go for a walk in the hall with my baby to escape the noise. I choked on the laugh I unsuccessfully held back before reminding myself that most people just have no idea what the NICU is like. Can you go for a walk with a patient in the hall of the adult ICU? I would assume not. The NICU isn’t a cute place for cute babies who need a cute amount of care before going home. It is Intensive Care. Those wires and beeps and alarms mean something, and not something good.
So as much as I hated the noise, my world was in that room. Some days I was a soldier, bunkering down by my baby and out to win a war. Some days I was weak, leaving the room to fill up my water bottle, or go eat a snack or even to just cry in the “quiet room” at the end of the hall, just to escape the noise.
It didn’t help that we’d hardly made any progress since July 3. With each trial off CPAP failing, it felt as though Oaklee might be on a CPAP for months yet.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP
In the stats:
Birth weight: 2lb, 12oz
Last known weight: 4lb 2oz (8/3/17)
Gestational Age: 33 weeks, 1 day
Days in the hospital: 39
Sets of visitors to see Oaklee: 36
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 32
P.S. I should also note feedings: By this date, Oaklee was receiving 38 ml of breastmilk plus Prolacta. She was in the process of being weaned from Prolacta to Human Milk Fortifier, a lesser degree of the same type of substance – one that would give her additional calories and nutrients.