Little Bee and Me

Keith and I woke up on June 16th, both excited and very nervous about the prospect of little B coming home with us that day. Mostly excited, I think. We packed up the car seat, and headed to the NICU. When we arrived, Beckett's nurse told us that he had gained a satisfactory amount of weight and the doctors had agreed that today would be discharge day, as long as we were feeling comfortable with it. Keith and I felt that we had learned what we needed to know, and that bringing him home would be the best thing for Beckett's recovery. We just had to wait for the neonatologist to do an exam and issue the discharge papers.  While we waited, the nurse went over the discharge checklist. Most items on the list were fairly straightforward, others not so much in our case. One of the discussion points was: if baby shows signs of significant pain, bring him back to hospital. The nurse asked us if we felt comfortable with this. Our honest response was: what signs do we look for? During his...

Week 3 in the NICU started off with a follow up ultrasound of Beckett’s kidneys. The right kidney and ureter were still dilated, but the left side now looked normal. The nephrologist still believed that the dilation could have been a symptom of the anorectal malformation, and that it would slowly resolve itself now that the repair had been made and B was able to poop. In the meantime, he’d remain on antibiotics to prevent any kidney infections or UTIs.  Our third week in the NICU was more positive with - hard for us to believe - no new bad news. Beckett was moving more and more, regularly trying to pull off the heart rate monitors, pull the NG tube out of his nose, or kick off the o2 saturation monitor that was velcroed around one of his feet. He still hadn’t cried, but was making some more noise - he made the cutest noise after sneezing in particular. Unfortunately I don’t have any videos to share, but Keith and I still sometimes mimic the sound after one of us sneezes.  One ...

June 2-5 We arrived at the NICU on the morning of June 2 to find Beckett in a rocker in his room, without the oxygen tubing... he was breathing normal room air with no issues! He had the same awesome nurse that he had had on May 27, and she told us that she thought his tone was getting better. (No one really explained to us what tone was - a Google search told us that tone is  essentially the tension of the muscles. Hypertonia would be high tension or stiffness, hypotonia would be floppy.) We were so optimistic and happy to see and hear all of the wonderful, positive news! Keith and I got to cuddle a lot with Beckett that day. We didn't have any scheduled meetings with doctors, or any tests to get done which seemed like a first. B was picking his head up off of our chests with quite a bit of strength and was showing some signs of rooting, although he still had no sucking reflex.  My identical twin (aka "Aunty Mommy") came to the NICU to meet Little Bee on June 3. She and ...

I was going to wait to post this until I’d finished writing about all the days in the NICU… but feelings kept popping up and I wanted to write about them. This may seem like just a long rant. In a way it is. There are of course many many feelings I had when Beckett was in the NICU. Some are probably obvious: fear, worry, sadness, but also joy, pride, and optimism. The rants below are specifics on some of the feelings that surprised me and/or impacted my mental health during our time in the NICU.  Before diving in, a reminder that I am not trying to offend anyone. I know that everyone who reached out to us were 100% well meaning and we appreciate every one of you. Every doctor we met with that first week in the NICU would start off by saying “first off, congratulations!”. Lots of family and friends messages would start with a similar message. In the physical and mental place that I was at, I couldn’t for the life of me understand why people were starting off by congratulating me. I ...

May 25  When I joined Keith and Beckett in the NICU a little while later, the NICU nurses were connecting Beckett to an aEEG to monitor his brain waves. The doctors were deciding whether Beckett met the criteria for cooling (currently the only treatment for hypoxic ischemic encephalopothy), and we were told this decision would be made quickly, since the treatment had to start within 6 hours of birth if it were to happen at all. The NICU staff suggested we both go to the postpartum ward to get some rest since we had been up for well over 24 hours and the EEG would take time to set up.  When we returned to the NICU, not at all rested, we were told that Beckett did not meet the criteria for cooling. Something about his cord blood test results. To this day, I still wonder if cooling would have helped him in his initial recovery. But as with much of Beckett’s and our story, there’s not a lot of point in thinking about the “what ifs” and the “whys”. We could only move forward. ...