Nora's Journey: Week 7

Wow, what a week! I can’t believe how far Nora has come in just 7 days.

Let’s start with last Sunday. Nora had been doing great on CPAP for 4 days in a row with no events. Eric and I moved into a new airbnb in Alameda that night because we thought we’d be in Oakland for much longer after everything that happened during Week 6. We never stayed anywhere for longer than a week or two, because we didn’t have a timeline of when Nora would be transferred. We were constantly packing and unpacking our life and I was feeling particularly discouraged that night that we’d never get her home.

I went grocery shopping for the week on Monday morning and as I was getting ready to go visit Nora, I got a call from her doctor that she was getting her third trial off CPAP that morning! Eric and I rushed over to get our weekly photos of her without the mask on, expecting it would be put back on eventually. This time though, her doctor decided to put her on a high flow cannula (a step down from CPAP), instead of straight to room air. We were very happy with this decision because the last two times she went straight to room air she exhausted herself to the point of needing CPAP again. Since she was on a cannula we could now start breast and bottling feeding her! My lactation consultant was there that evening and helped us with our first session, she was blown away with how well Nora was suckling and swallowing on her first try, she said she was acting like a term baby. She also was breathing steady the entire time and didn’t have any events that day. We drove back from Alameda that night smiling ear to ear. We both agreed that was the first overall great day in the NICU we had.

We expected several more days like that in Oakland, but to our surprise on Tuesday morning her doctor said “looks like Nora is doing great on high-flow, I’m going to call Santa Rosa for a transfer today or tomorrow.” An hour later we found out there was a room ready in Santa Rosa and an ambulance would be there to pick her up by 5pm (!!).

I could not believe that the day we had been dreaming about for so long was here. Nora was healthy enough to not need Level 3 intensive care. We immediately ran over to our airbnb to pack our lives up for the last and final time, and made it back to the NICU to see Nora off on her big ambulance adventure to Santa Rosa.

Now it was time to say goodbye to the team. We knew everyone in that unit from the receptionists to the head neonatalogist, and all the amazing nurses in between. This team saved Nora’s life and took care of her at a time when we physically couldn’t. Many of them had seen me at my worst and comforted us on our darkest days. I will forever be grateful for this team of heroes. Unfortunately, we could only say goodbye to the nurses who working that shift, but luckily one of Nora’s primary nurses and the nurse who gave me the thumbs up in the delivery room were working. I couldn’t even say words as we hugged them goodbye, I just cried instead and they knew exactly what I was trying to say. I wish we could have thanked every single doctor and nurse who played such a huge role in Nora’s life, if only I could tell them how much they meant to us.

Some of the closest ladies in my life wrote me letters when our NICU adventure began. Two of which had the same advice (must be Joyce family saying!), the advice was “this too shall pass.” Reading these words during Week 2 felt heavy. It was hard to imagine that things would get better when Nora’s weight dropped to 2lbs 8oz and she was undergoing test after test. Even just last week it was hard to imagine us leaving the NICU! But when we drove away from Oakland on Tuesday night, and the weight of the worst 6.5 weeks of my life was lifted, I couldn’t stop crying. Nora DID learn to breath without the CPAP, Eric and I DID make it through the unimaginable, and this bump in the road DID pass. I know our journey isn’t over yet, Nora is still very much not home with us. But leaving the Oakland NICU after 45 days, and hours and hours spent in that unit, was a HUGE chapter closed.

Our next chapter started on Tuesday night at Santa Rosa Kaiser’s “Intermediate Care Nursery” - see, it even sounds less scary! The nursery in Santa Rosa is dimly lit, has beige walls, and feels less like a hospital. We were there when Nora got checked in that night and were a little panicked to learn her respiratory stats weren’t on every computer in the unit. Nora shares a room with another baby that was also born at 28-weeks and one nurse is assigned to the two of them. It was a different vibe than what we were used to, but we got home late that night incredibly happy to sleep in our own bed and were greeted by one even happier pup.

On Wednesday morning we drove the short 15 minutes to the hospital and learned Nora had already taken her first two bottles! (Preemies have to be bottle fed for at least three feedings because they get extra calories and essentially vitamins added to the breast milk to help them grow.) We were so proud and worked on breastfeeding for the next feeding session and took turns bottle feeding her after that. Whatever Nora doesn’t take during a bottle/breastfeeding session is then fed to her through her feeding tube to make sure she is still getting the amount of calories she needs in a day to continue to gain weight. Once Nora takes 80% of her feeding through bottle/breast her feeding tube will be removed. By day 3 of feeding, Nora is already at 62%. She is eating like champ and all the nurses are so impressed! Once the tube is out, she will eat on demand through bottle/breast for 48 hours and if she gains weight in that timeframe, that milestone will be met and she’ll be one step closer to home.

The last milestone to be met is to not have any respiratory events in 5 days, if she has one, the clock is reset. Nora’s high flow nasal cannula was removed on Friday morning and she’s been doing great on room air! The respiratory events are something we are struggling with. We have felt that some of them have been avoidable. For example, she was on Day 4 yesterday, but today she had an issue with her feeding tube that caused a pretty serious event so her clock was reset. I’ll be honest, Eric and I are still adjusting to this new setting. The nurses are incredibly nice and helpful, but we do miss her Oakland team and it’s been hard for us to feel as comfortable as we were. I now understand what everyone meant about becoming Nora’s advocate when this journey first started. Eric and I truly know her better than anyone and we feel that us being with her as much as possible this week will help get her home faster, even if that means sleeping in a hospital chair next to her bedside to do every feeding with her.

I am hopefully for the week ahead and am so incredibly proud of our baby girl for continuing to amaze us with her progress. She’s currently 35 weeks & 3 days, weighs 5lbs 6oz, and is cuter than ever :)