NICU Round 2

The nurses and doctors in the NICU had high hopes that Paloma would be home for Christmas. Nothing was rushed, we were prepared to bring the kids and my parents to the hospital to celebrate. It’s easy to form a bond with the folks taking care of your baby. You start to wonder who they are outside of the NICU and what brought them there. They’re put on the fast track to becoming family. It felt important to let that happen. It brought a sense of peace whenever we left Paloma for the night. Paloma was discharged on December 22. We were very anxious to get into a new routine and celebrate Christmas as a family of five.

A few days before New Years, Paloma became noticeably congested. She worsened over the weekend. On New Year’s eve around 9:00 in the evening, I noticed that her breathing was very labored, it had become hard for her to nurse. Her lips turned purple. I decided to bring her to the Emergency Room. 

During our extremely short wait. Alan FaceTimed me to ring in the new year.  

Paloma receiving oxygen in the ER. 

Things went from zero to sixty to two-hundred fast.  Because of Paloma’s age and condition, we were immediately brought to an exam room. Oxygen was given, and a heater was brought in because her temperature had dropped. I was later told that she had hypothermia.  

We were then moved to a larger room for an entire team to assist Paloma. Blood was drawn, meds were given, and she was intubated, at a fast pace, one after the other or what felt like simultaneously. It was scary experiencing this alone, and it was scary for Alan to be at home while all of this was happening.

For only nine days Paloma was home and here we were, back in the NICU. We were done with hospitals, done with not being able to sleep in our beds with our baby, done with being away from Ben and Rori. 

An extremely sedated Paloma. 

It goes without saying that watching Paloma be poked, prodded, and heavily sedated is very difficult. But the evening was honestly a blur. This was the beginning of another long stay in the NICU. Because two days later we would find out that Paloma's breathing was the result of a respiratory virus. A virus that would be remedied by antibiotics, a constant extraction of neon green secretions, and of course, waiting. A few days later Paloma was diagnosed with Pallister Killian Syndrome. She continued to fight off her respiratory virus, but receiving her genetic diagnosis felt like the end of a lot of secret wondering and worrying from both Alan and I. That closing of a chapter was very quick because we became anxious and motivated to get home start this journey with our little dove.

The rest of our stay was very pleasant. Again we became very friendly with our nurses. Alan went back to work that week and would ask who was assigned to Paloma. Nurses from the previous day would stop by even though Paloma was no longer their patient. They all knew Paloma's diagnosis, and they all knew how to speak to us, when to ask how we were and if we needed anything. Another group of nurses and doctors fast tracked as family. I've been meaning to bring them a leggings basket.

She was extubated after a week, and it was confirmed she had Respiratory Syncytial Virus (RSV), which, especially in newborns, can be very dangerous. 

Pallister Killian Syndrome could bring along some early complications, so Paloma had ultrasounds taken of her spine and kidneys, MRI’s for her spine and brain, and an EKG of her heart. All tests came back clear.

Before discharge, we met with the geneticist, neurologist, and neonatologist to discuss what the year would look like for Paloma. We were told these next few months were going to be intense, full of specialist appointments, but that we should enjoy her, especially this first year as an infant. Oh, how we have been. She is a wonderful sleeper, she nurses well, and she basically only cries when she she’s hungry or needs to be changed. Paloma was my third c-section and my EASIEST recovery. I didn’t need prescription pain meds. Imagine if I did! It would’ve been extremely difficult to go back and forth from the NICU and home. Our Lord so knew what he was doing. He is the author. Remember that.

The NICU can be a scary place. It can be lonely, frustrating, eerily quiet, awkward, expensive, intimidating, etc. But it's also a community, a home away from home, a resource, a chance to learn, a chance to pray, a chance to rest, a chance to trust complete strangers, a chance to make friends, a chance to be all of those things for someone else. Bringing Paloma home the second time was the beginning of so many unknowns. But where we find peace is that we have a new vocation as a family to love like never before.