I was able to get fully disconnected Friday morning and take a shower. That felt so good! Jimmy's parents had come in just a few moments before they took her away on Thursday, so they never even had a chance to hold her. Visitors were allowed as long as they were 14 or older. Jimmy's parents came back Friday morning to get some more time with her.
We got the chance to sit in on rounds with the doctors as well. She was not showing any signs of hunger or wanting to eat yet, but that is normal when you are on an IV and had a feeding tube. The plan was to start nursing and supplementing with formula in order to ween her off the IV. Once she was off the fluids we hoped to bring her back to the room. She was still too sleepy to nurse that morning, but we were able to start in the afternoon. I also got the chance to change my first diaper, who knew something could be so exciting! She had an echocardiogram that afternoon and everything came back normal, except for a small murmur. We had been concerned about a small hole, but it wasn't there! We will watch the murmur for 6 months and seek follow-up if it does not resolve by then. Jimmy went home to shower, grab a few things and pick up Parker from daycare. She got to move from the warming bed to a normal one early Friday evening. My parents came to visit that evening and finally got a chance to hold her as well.
It was great to get some snuggle time with Parker as well.
They continued to reduce her IV through the night since her blood sugar was staying up and she was completely off it by 4:00 am Saturday. Around 9:30 we were back and were told rounds would be soon. It took longer than expected, but it was a good report overall. Her bilirubin number jumped a bit, so she was pretty jaundice, but that can be treated with phototherapy and wouldn't prevent her from returning to the room. Her weight had dropped a bit and was below 2500 grams (5.5 lbs) so they wanted to do a car seat test before moving her from the NICU. After rounds they removed her IV and gave her the Hep B vaccine. Since things took longer than normal her blood sugar was low, but it has been almost 4 hours since eating. Jimmy changed his first diaper Saturday morning.
We started the car seat test mid afternoon. They put her in the car seat for 90 minutes and monitor her to make sure her heart rate and oxygen levels don't drop and that she does not experience any breaks in breathing (apnea). She had an oxygen desaturation about 1 hour in, but they restarted the test after removing the newborn head insert since the U of MN recently released a statement regarding desats and newborn inserts. We were hopeful she would pass, but got a call about 15 minutes before she should be done that she had desatted again. I was very discouraged after this, but knew it meant she just wasn't ready yet.
We continued phototherapy through the night, her weight had dropped to 5 lbs 5 oz. and her bilirubin increased by 1.5 points. The threshold for treatment increases with each day of life, but this was still high.
It was great to see Parker again on Saturday night. We had taken a little video of Esme while she was being a bit more active and showed it to Parker. We was giggling while watching it and wanted to see it again. Siblings are allowed to visit the NICU, but have to be over 5, so he just missed the cut off. I am not sure we would have brought him in anyway since there are so many machines and noises.
Sunday brought visits from aunts and cousins. Izzy, Paul, and Emma only got to peek at her through the window, but Grace, Julie, and Tera got to come in and hold her.
She desatted again in the afternoon and had a small incident while we had visitors. We were surprised since she had been doing so well outside of the car seat. We would have to wait until the morning to find out how we would proceed. Jimmy sent home to stay with Parker since he had been with family all weekend. It was very strange to be in the hospital alone, but I enjoyed the solo snuggles.
The lack of sleep really caught up with me Sunday night. I literally fell asleep for 30 minutes while pumping. I made sure that I was very careful every time I fed her to not fall asleep. I went back for her 4 am feeding, but she had taken a bit more since the last one and wasn't ready yet. I decided just to sit and wait instead of walking back to my room. I ended up getting another 90 minutes of sleep, which felt great! Her bilirubin improved to 10.2 from 11, but her weight dropped a bit more to 5 lbs. 4 oz. At rounds we discussed the plans for the day since she had some episodes the day before. Her jaundice improved enough to discontinue photo therapy. They also decided to redo the car seat test before the 12 hour study since it wouldn't be worth it if she couldn't pass. Luckily she passed! I was discharged Monday, but we both got to move to a board in room one floor up. She was wide away for the move and didn't want to miss a moment!
It was so nice getting to be with her all the time. She was still hooked up to monitors and all the NICU nurses are paged if any alarm goes off. We were connected, but also had more privacy than just a curtain.
Her 12 hour study began at 7:45 pm. It monitors the same things as the hospital, but records any time an alarm sounds. We had to write downs every time she woke, stirred or was fed or changed. Any alarms during these time wouldn't count since the leads were sensitive to the quick movements and all babies experience apnea during feedings.
Not having to walk made the night go much smoother as well. I even got a 2.5 hour stretch of sleep, which was probably the most I'd had since Wednesday night. I was pretty confident she had passed based on the times and frequency of alarms. I only got worried once when we couldn't get any readings for a few minutes, but they can back online.
They repeating her hearing test Tuesday morning since her original one was done under phototherapy, which can alter the results. She passed that as well and we just needed to wait for the results of the study.
Up Next: Esme Comes Home!
