To be completely transparent, I think 2017 Mandi explained these days best…
“55 days old and I finally hit a wall today. I’m exhausted – mentally, physically, emotionally – exhausted. It was the first day I had the thought that maybe it would be better if I weren’t [in the NICU with Oaklee] right now. I just need time to re-energize. I can’t handle the noise, the busyness, the stress or the reliance on the opinions of others anymore.
For 55 days, someone else has made every decision revolving around my baby and I’ve yet to have a quiet moment, just me and her. It’s a much crueler form of punishment than I ever anticipated.
Today, the opinion was that Oaklee’s respiratory rate was too high for her to feed. Yet yesterday it was just as high, she fed and did great. The personal opinions of nurses, at this point, are keeping Oaklee from making progress.
We were told this last step can feel excruciatingly drawn out. That is accurate… especially with nurses like today’s.
It’s one thing to take your baby home and get little helpful (or unhelpful) bits of advice from a friend or family member – that would grind my gears too – but we’re in a situation where the other opinion rules. What the nurses say goes.
I don’t get to be a mom. I don’t even get to feed my own baby… or dress her or rock her to sleep or take her outside…
This is a miserable stage. It will never ‘be a blur’ like everyone says it will be someday…”
“So much of our lives are just consumed by fogs right now. I don’t like just trying to get through. We should be happily celebrating our baby, not wishing for tomorrow again and again. We should want the days to last longer, not end faster.
This is a painful stage, and this particular portion is so hard. It’s like running a marathon and deciding to crawl the last mile on pavement, finish line in sight.
I think I’m going to lose it.
I’m afraid I already have.”
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower
In the stats:
Birth weight: 2lb, 12oz
Last known weight: Almost 5 lb (8/13/17)
Gestational Age: 35 weeks, 4 days
Days in the hospital: 56
Sets of visitors to see Oaklee: 45
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13