“It’s nice to hear the language change amongst the conversations with her nurses. There’s been talks of ‘final steps’ and ‘when she goes home’. We so long to be done with this phase.”
On her 35th day with a CPAP, Oaklee trialled off for her 4th or 5th time and was largely successful. In an ideal world, she would have went from CPAP to breathing completely on her own. Actually, in an ideal world, she would have been born in September. But as we knew all too well, nothing was ideal about this journey.
Each trial off CPAP was incredibly nerve-racking on Kevin and me. Oaklee had trialled off and was successful in early July, but found herself back on just a few days later. We learned from this experience not to get overly excited when the word “trial” came up. On August 2, for example, the nurse removed her CPAP in the morning and when I made my way up to the hospital in the afternoon, I was afraid to hold her as her oxygen saturations tended to change when she was being held. Realistically, we could not call her successful off the CPAP if we could not hold her, so I knew I had to hold her in order to know if she was truly capable of breathing on her own or not. She was not that time.
But this time, we ventured down a different route. Oaklee seemed so capable, yet she wasn’t allowing herself to succeed without assistance. Therefore, our nurse suggested to the doctor we try a simple nasal cannula, giving her just a small amount of additional oxygen to rely on if need be.
While Oaklee’s respiratory support in each stage was necessary, it was also a necessary evil. She had received enough respiratory assistance and experienced enough respiratory distress to be diagnosed with Chronic Lung Disease (or bronchopulmonary dysplasia). Causes of Chronic Lung Disease include prematurity, low amounts of surfactant, oxygen use and mechanical ventilation, all of which Oaklee experienced.
In short, Oaklee’s lungs were damaged long term from the assistance they required to work at all short term.
At all times she required assistance, the nurses only gave Oaklee the minimum amount of respiratory support she needed to keep her oxygen saturations in an acceptable range. They knew the dangers of giving more support than necessary. The knew the diagnoses she had already accumulated.
A nasal cannula was a step in the right direction – the pressure put on her lungs and the invasion of her airways from the CPAP, oscillator and ventilator were a thing of the past – but still, we were not out of the woods.
In addition to the respiratory progress this transition made, it also allowed for progress in two other areas.
First, now that a CPAP was not in the way, Oaklee could begin learning to feed if she showed proper cues. Showing proper cues meant waking up around her care times, sucking her pacifier, getting fussy and any other way she could tell us she was hungry. (She also needed to keep her respiratory rate in a safe range to feed, so if her breathing was tachypnic, as it so often was, and she was showing cues, we would still not be able to offer her a bottle.)
Second, without the heavy machinery, mommy and daddy could finally, FINALLY pick up our girl without asking permission from a nurse. She’d been extrauterine for 42 days and every time I’d held my baby I had to ask someone if I could do it and if they’d help me do it. I cannot express to you the bridge we crossed relationally going from needing permission to pick up my child to just snatching her up when I wanted to.
That’s right, people, this is my child, my baby, and I can hold her when I want.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula
In the stats:
Birth weight: 2lb, 12oz
Last known weight: 4lb 2oz (8/3/17)
Gestational Age: 33 weeks, 4 days
Days in the hospital: 42
Sets of visitors to see Oaklee: 37
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 1