“All year long, we’d planned and hoped this September would be special, and yes, now we know it will be. It’s our hope that this next week will be our final week at the hospital and that we’ll turn the page on a chapter of our story we never wanted to write. We’re so blessed this chapter has a happy ending, and so ready for the joys and struggles of the next chapter. Praise be to God for the blessing that is Oaklee Ann Grasmeyer.”
We were five days into our two week homecoming goal. Oaklee still had her ups and downs with feedings, but her oxygen sats and respiratory rate were starting to maintain a healthy range. This indicated substantial progress in Rollercoaster Two, simply because she was given more opportunities to feed than before when she was most often tachypnic.
So here’s what we needed to happen…
Oaklee needed to prove she could consistently take, on average, 80% of her feeds by bottle or breast before her next step.
Our common obstacles included:
1 – Oakles’s respiratory rate still occasionally being too high (tachypnea) and, therefore, it being unsafe to offer bottle or breast.
2 – Nurses improperly handling the conflicting Care Times of Oaklee and the baby(ies) she was paired with and, therefore, choosing to give her feeds via gavage so they didn’t have to take the time to give two babies their bottles.
3 – Breastfeeding.
As I previously mentioned, Kevin and I had begun to strategically plan, prepare and build Team Oaklee to get her home. That meant we had to find our way around these obstacles.
Our solutions included:
1 – Though there was not much we could do if Oaklee were truly tachypnic, we quickly learned the range considered tachypnic was subject to opinion. Therefore, we began monitoring what each nurse considered tachypnic and pushing back when their opinions didn’t align, asking them to re-check Oaklee or letting them know several other nurses had let her feed at that particular respiratory rate. We no longer silently accepted what we were told when it was holding Oaklee back.
2 – You can bet your life we raised a colossal stink when we learned nurses were gavaging Oaklee for entire shifts because her Care Time aligned with the baby’s she was paired with. We considered this highly unprofessional and distinct evidence she was being held back by being in the hospital and not at home. If Oaklee were home, we would be doing whatever we could to help her succeed, not doing whatever made our shift easier. Immediately after our complaint, there was a short list of nurses Oaklee would never have again and she was instead paired with a set of twins whose Care Times differed and whose mother we would later befriend.
3 – Despite Oaklee’s start, I still had every intention of breastfeeding and not exclusively pumping. However, breastfeeding is incredibly challenging for a tiny baby who’s had to do little to no work in order to feed for the first several weeks of life. Therefore, Oaklee’s chances of taking 80% of a feed at breast were slim. The few times we tried breastfeeding in the hospital, she would take maybe 25% of a feed, and the nurse would gavage 75% of a feed once Oaklee got too tired. Unfortunately, our way around this obstacle was to not breastfeed once Oaklee was getting close to the 80% mark. Though this decision was not easy, my intention to breastfeed was also something we could not afford to hold us back. I knew that many, if not most, mothers who bring preemies home never get them to switch from bottle to breast. Because exclusively pumping is no simple task, this often means many preemies do not have the opportunity to be on breastmilk for very long. Our Plan B, here, was the overabundance of breastmilk I was already storing up, but Plan A was still very much to make that switch from bottle to breast at home, sans hospital resources that were currently at our fingertips.
Last, a workaround all of our obstacles included our agreement to learn how to place a NG tube ourselves at 38 weeks. In the NICU Oaklee was in, true Feeder Growers can go home at 38 weeks with a NG tube for incomplete feeds so long as two people learn how to successfully place and care for a NG tube. Until the past week, where we began our two week goal, we’d been hesitant to consider this solution. Oaklee, like every baby, screamed when a tube was being shoved up her nose and down her throat. However, we were ready to swallow our own fear and do what we needed to do to be done with this phase.
Once Oaklee made her way around these obstacles and took 80% of her feeds, she would be switched to a more natural style of feeding the NICU called “ad lib, on demand” where she could eat as much or as little as she wanted whenever she showed signs of being hungry. At that point, Oaklee would need to prove she could take 100% of her feeds in any given 6 hour window for 48 hours.
In the mean time, we did what we needed to do to get any bit closer to that 80%.
We spoke up.
We raised our rally flags.
We will gavage.
Oscillator –> Ventilator –> CPAP –> Feeder Grower –> CPAP –> Nasal Cannula –> Feeder Grower
In the stats:
Birth weight: 2lb, 12oz
Last known weight: Just over 6 lb (8/27/17)
Gestational Age: 36 weeks, 6 days
Days in the hospital: 64
Sets of visitors to see Oaklee: 49
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 35
Days on Nasal Cannula: 13