Good afternoon everyone – here is the latest on our sweet girl after things took an unexpected turn on Thursday evening. My apologies if this is a longer update.

Jeremy worked from home on Thursday so him and I spend the day with Maelyn at her bedside. We have progressively gotten more comfortable after now a week and a half in the Continuing Care Nursery (typically the area where babies transition to home) learning the ropes, getting to know the staff better, and feeling more confident with caring for Maelyn amongst all of the wires. When we are there we do her diaper changes, oral care, and temperature checks on her prior to her feeding times.

She gained a few grams in her weight which was great to see and she continued taking her bottles so well for us! We were feeling so hopeful. Maelyn continued to be on low flow oxygen since Sunday night (5/25) and previously didn’t tolerate the weaning of that too well come Thursday. She kept having desaturations in her oxygen levels so her Dr. decided to order another chest X-ray.

We met with the Dr. Thursday night as we do every day for a report on Maelyn. He recommended transferring her back over to the main NICU room (“big room”) where she first was after delivery and putting her back on the CPAP machine. The X-ray showed that her lungs were not inflating all the way and she has been struggling with periodic breathing where she takes a deep breath and then struggles to get back on track causing her oxygen levels to overall drop.

This news was very blindsiding because again from what we can see when we look at her, she is always so peaceful with no signs of struggling to breathe but the monitors show she is.

We began packing up her space where we spent the last week and a half and prepared for her transfer.

The other part that came with this news was that with being put back on CPAP Maelyn’s would need to get a feeding tube again and couldn’t have feedings by mouth. This felt like such a huge setback after working so hard with her all week to master her bottle feedings which she did sooo amazing with.

Jeremy and I headed out Thursday night before the transfer took place. We also took her car seat back out with us because the car set test wouldn’t be taking place any time soon with this setback. That was the hardest part for me, seeing Jeremy carry the empty car seat out without our girl, like one would envision. 😢

I pretty much mentally checked out the last couple days as we got moved back to the big room. Everything began to feel extra hard and heavy. But that didn’t stop the prayers from going up for our little fighter. 🩷

Maelyn’s continues to get chest X-rays each morning to monitor her progress and the Dr is hopeful that with the pressure of the CPAP machine that Maelyn’s lungs will begin to expand more and with time her overall breathing becomes more regular.

Just arriving to visit her now for the day ❤️