“Aside from the feeding tube and the sensors, Oaklee just looks like the cutest little baby. We’re beyond smitten with her. She makes it really hard to leave each night.”
On the 8th, at just 9 days old, we got the news that Oaklee no longer required the assistance of the CPAP. She was continuing her onward and upward journey. While this was, of course, significant in her overall health progress, it was also significant because it meant we could finally see her adorable face. The only thing obstructing our view, at this point, was her feeding tube and the occasional phototherapy eye protection.
In addition to being off the CPAP,
- Oaklee’s PDA (Patent Ductus Arteriosis) had closed on its own by the 3rd.
- Her second brain scan came back clear, so there was no longer the threat of intraventricular hemorrhage (brain bleeds).
- Her pneumothorax, the pocket of air in her chest outside of her lungs, was shown to have resolved on its own in her chest x-ray on the 10th.
She was essentially what’s called a “feeder grower” at this point, a baby that is only in the NICU to learn to feed and get her weight up and has no other medical concerns. Less than two weeks ago, we thought we were losing her. Now all she needed to do was learn how to eat and gain some weight.*
Oaklee, having been off TPN and lipids since the 4th, was receiving about 25 milliliters (less than one ounce) of breastmilk at each feeding. This was combined with Prolacta, a specialty nutritional formulation made exclusively from human milk for critically ill premature infants in the NICU to provide a higher caloric/vitamin/mineral/protein intake. She received this every three hours, but each feeding was compressed through a syringe of sorts over the course of two hours in order to give her newly digesting body the opportunity to digest slowly.
It was somewhere around this date, in the hype of the medical jargon and the chaos of me going back to work, that I realized I needed to tell Oaklee I loved her. While, in so many ways, the doctors and nurses owned Oaklee, being able to provide better care for her than I could, I provided one very important thing they could never provide. Love.
I remember feeling foolish the first time I whispered those three words to the baby who didn’t even feel like mine. I said, “I love you,” and then I turned around, left the room, and left my most fragile, most prized possession in the care of people I didn’t even know.
And then I remember feeling foolish for feeling foolish. That is my child. I will never allow her to question my love for her.
So every night, from that point on, my husband and I would wait until any guests left to have a moment, just the three of us. He and I would stand on each side of Oaklee’s isolette, our sanitized hands reaching through the holes to hold her hand or contain her, and we’d tell her to be good and that we loved her. And then we’d turn around, say goodbye to the nurses, walk the long halls of the hospital to the parking garage, get in our car(s) and drive home.
Our lives were a mess, but that didn’t change how much we loved her.
Oscillator –> Ventilator –> CPAP –> Feeder Grower
Onward and upward once more.
In the stats:
Birth weight: 2lb, 12 oz
Last known weight: 2lb 7 oz (7/3/17)
Gestational Age: 29 weeks, 2 days
Days in the hospital: 12
Sets of visitors to see Oaklee: 13
Days on High Frequency Oscillator: 2
Days on Ventilator: 1
Days on CPAP: 6
P.S. I mentioned all Oaklee needed to do was learn how to eat and gain some weight. There were, however, other issues still at hand, though they may not have been issues that would have kept us at the NICU had she weighed a tad more than under 3lbs.
- Oaklee was still, on and off, receiving phototherapy under a bililight for jaundice – an indication that her liver was not working properly – which, again, is extremely common in preemies.
- Her PFO (patent foram ovale – a hole in her heart) had still not closed, but 1 in 4 people live with this condition their entire lives, many without even knowing it.
- Regardless of being CPAP-less, she was still receiving caffeine citrate for treatment of apnea of prematurity. Preemies will sometimes literally forget to breathe regardless of knowing how to breathe. In order to come home, she was going to need to prove she could go an extensive amount of time without caffeine. They would not pull the caffeine until her oxygen saturations and respiratory rates were satisfactory enough for them to believe she was not going to forget to breathe.