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 of the general surgeons came to check on Beckett’s surgical area daily to make sure it was healing well. All the surgeons we encountered were pleased with the healing process. We were told that Beckett would be followed by general surgery for years to come, to manage side effects of anorectoplasty. Some of the possible side effects being chronic constipation, or, conversely, incontinence. We were also told his long term side effects could be as minimal as having the odd awkward fart at a party - which, can happen to the best of us.
During rounds early in the week, there were discussions about transferring Beckett to one of the “floors”. Basically, Beckett was medically stable and therefore did not need to be in an intensive care unit any longer, which was good news. We were told the floors would be nicer for us too as there would be a bathroom in his room, we’d be allowed to eat in his room, and visitors were not restricted. This all sounded pretty good to us. Pretty quickly the conversation flipped and the doctors were discussing the possibility of keeping Beckett in the NICU until the end of the week and then discharging him as a patient - his ongoing care to be handled as an outpatient through various departments and clinics. In the end, it’s up to the doctors and they decided that this would be the goal. The nurse practitioner started getting all the referrals in for home nutrition (for us to learn how to insert an NG and how to do tube feeds at home), for the follow ups with nephrology, neurology, and MRI, and also finding us a paediatrician that would be close to home. They also finally made the request for an OT to assess him and help us with the SINC process. It all felt a bit rushed, but I guess in a way that was to be expected.
The lesson from home nutrition was fairly straight forward as far as information and guidelines. At the risk of sounding arrogant, Keith and I are both intelligent people who can learn new concepts pretty quickly, so the lesson we received was pretty quick and straightforward. There are quite a few rules for an NG as an outpatient: how long it can stay in for, how often you switch nostrils, how to clean it, etc.; the number one rule was to always check the tube placement after inserting a new tube, and before every feed. To check placement you attach a syringe to the feeding end of the NG and pull back to create suction. If you get fluid into the syringe, it means the other end is in the stomach and you’re good to go. If you don’t get fluid, it could mean that the NG is in the lungs. The person giving us the NG lesson plainly stated that if we didn’t check placement, and the NG migrated to the lungs and we proceeded with a feed, it would cause Beckett to aspirate and that would likely kill him. I do very much understand the importance of the “check the placement rule”, but the way this was presented to us started a relationship for me between feeding my child and the possibility of his dying. My brain concluded that feeding could result in aspiration and aspiration would result in death. I plan on posting a separate post on Beckett’s feeding journey where I will dive into my anxieties a bit more, but needless to say, the following months involved a lot of fear and paranoia for me when feeding Beckett.
On the 14th and 15th, Keith and I had to do an NG insertion under the supervision of the NICU nurse in order to finalize our NG training. We both did well, all things considered, though neither of us enjoyed causing discomfort for Beckett, which he expressed strongly through his facial expression and full body wiggling during the process. We got our first official view of Beckett’s naked, tube- and tape-free face, and had to take a quick picture because he was just so cute.
We used the 14th and 15th as an opportunity to practice how things would be at home - with Becketts nurse available to help, we handled all diaper changes and NG feeds ourselves. Obviously things would be different at home, but it helped build our confidence that we’d know what to do on our own.
On a few occasions during our 3rd week in the NICU, the nurse assigned to Beckett mentioned during rounds that she noticed Beckett arching his back. The doctors mentioned it could be reflux, or more ominously: “a symptom of his injury”. No one knew exactly whether it was a bad sign or just a normal baby thing. At the time I felt like the doctors could have elaborated a bit more on what they meant by “symptom of his injury”. Dr. Google told me that it could be a sign of cerebral palsy. But, it could also easily be infant reflux. Wait and see, I guess.
During rounds on June 15th the fellow mentioned that Beckett had lost weight overnight, and the NICU policy was that the baby had to gain weight for two consecutive days in order to be discharged. So it seemed like Beckett’s discharge date might get bumped back. The dietician and the nurse both suggested increasing his feeds to 170ml/kg/day (“full feeds” normally being 150ml/kg/day - what little B had been getting for at least a week), and seeing if he gained throughout the day and then again overnight. When Keith and I went home at the end of the day, we weren’t sure if we would be taking Beckett home the next day, or if we would be continuing to come to the NICU for a while longer until he started gaining the required amount of weight. We felt ready to take him home, and we knew he could thrive more at home, unconnected to monitors, and able to see things - that is, he would experience a world further than what he could see 3 feet from his crib. We’d have to wait and see what the doctors decided in the morning.
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