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 sang some songs for him and he had a nice long nap.
During his wakeful periods that day, he was quite fussy and wiggly. While "fussy" may not sound like a good thing, it was nice to see him being active and showing some more personality. He was also cooing more, but nothing that would be considered a cry.
On June 4 and 5, Beckett was quite alert, and loved to kick his legs and grab at all of his tubes and wires. He was proving himself to be quite tenacious and determined! So, week 2 in the NICU started off pretty well - we were basically just continuing day-to-day until his surgery on the 6th, and seeing incremental improvements, mostly in his alertness and movement of his limbs.
Keith and I decided to spend the night with Beckett in his room on June 5th, because he was going to be taken down to surgery first thing the following morning. I’m not entirely sure I’d make the same decision again, but in the moment it felt like the right choice for us and B. At that point, the only thing we were able to help with were diaper changes and temperature checks (which were done every 3 hours). Since we were trying to get some sleep in, it ending up feeling like we were mostly just in the nurses' way, and we were not succeeding in getting any quality sleep on the uncomfortable chairs. Perhaps sleep would have been a better choice.
June 6
At around 7 AM on June 6th, the general surgeon, anesthesiologist, and nurses came to Beckett’s room for a pre-surgery meeting. They discussed the plan and estimated how long the surgery would take. Because Beckett has a low lying conus, the anesthesiologist wasn’t able to administer a spinal block, which is common practice for an anorecoplasty surgery. Instead, Beckett would be under general anesthesia, intubated, and in a carefully placed prone position for the surgery. We were told to be prepared that he would remain intubated for up to two days after surgery, until they were confident that he would be able to take over the task of breathing on his own when extubated. They told us that we would find it difficult to see our baby intubated, and that he would look very helpless. We were also told the surgery would take at least 4 hours, so the surgeon recommended we go home and get out of the NICU atmosphere for that time, and that they would call us with updates. So that’s what we did.
It was hard not to worry during those hours when he was in surgery. But I think at this point I was numb to all the medical bad news and stress, and we had full confidence in the general surgeon who would give Beckett the best care. From start to finish, the surgery took about 5 hours. We went to the NICU to meet the surgeon back in Beckett's room.
She started with the good news: his anorectal malformation was a perineal fistula, and the reconstruction went very well. Apparently he has 10/10 butt muscles.
Then she told us the “other” news (I don’t think she specifically said “bad”): during the reconstruction she came across a presacral mass (basically, a mass near his bum and tail bone). This wasn’t completely unexpected as they are sometimes found alongside anorectal malformations; however, she said it looked to her like a teratoma, but when she resected the mass it was actually a fluid-filled mass (not a teratoma). Because of its proximity to the sacrum and spinal cord, she took a sample of the fluid and closed it up. She said she spoke to neurosurgery and that they were not immediately concerned about it, but that the sample would be sent to pathology and cytology. In 8ish weeks, they wanted to do an MRI to get a better image of the fluid-filled mass. With the results of those tests, they’d be able to confirm if the mass presented any imminent danger (my brain went to: is it cancer?), and if the fluid was cerebral spinal fluid or something else. A bit more “wait and see”. Lucky us, and lucky Beckett. It really felt like our poor little baby couldn’t catch a break.
While they were bringing B back to his room, we met with the NICU social worker (who had been a great resource for us to talk to). More tears were shed for our baby that kept surprising us all with seemingly endless medical concerns - he was beating a lot of odds, but not in the way anyone wants.
By the end of the day, Keith and I tried to focus on the good news. Beckett’s bum was repaired, he handled intubation really well, and he was still in the very competent hands of the NICU staff for his recovery.
The pathology from the mystery fluid-filled mass would take a while to get back, but we received an update from the cytology relatively quickly which came back and there were no concerning cells identified in the fluid - good news! The surgeon also said that, in her opinion, the chance of the mass being cancerous was very low, which was a relief.
June 7
Beckett was still intubated when we got to the NICU the next morning, but was awake and getting a bit wiggly. During rounds they discussed extubating him, since he was doing so well. The decision was made to proceed with that later in the morning. He was still on fentanyl for pain relief and was very groggy.
Keith and I were given instructions on how we would have to do his diaper changes while the incision healed. Because he had stitches all the way along his bum crack, and around his bum hole, we would not be able to use wipes to clean. We’d have to use a peri-care bottle to spray his bum with clean water and then pat dry for the next 6 weeks. Not complicated, but not exactly neat and tidy. We joked that we were getting him used to the bidet lifestyle early (if you know, you know!). The surgical area would be given two weeks to heal before we’d have to start regular dilations again, possibly as an outpatient - our discharge date still very much an unknown.
When the time came to extubate him, the respiration therapist told us it wasn’t uncommon for babies to need to have to be given oxygen for a while to re-adjust to breathing on their own. However, Beckett was a super champion, and transitioned to breathing on his own right away without any oxygen needed.
We thought maybe he would cry from the discomfort, which was apparently a common reaction for babies, but still he didn’t. Strange that as first time parents we were just aching to hear our baby cry - wail, bawl, scream - any sign to show us that he could express his needs, his feelings, his pain. He made some groaning noises, which was something. We'd continue to wait for his first cry.
During B's recovery, Keith started to read Harry Potter to him (Keith taking on different accents and voices for each character, of course). If you know us, you know how much we love Harry Potter. We decided that Beckett is undoubtedly a courageous Gryffindor!
June 8
By June 8, the NICU team had started reducing the dosage of fentanyl for pain relief, but they didn’t want to ween him completely yet. Because he still hadn’t cried, there was concern that if they stopped the fentanyl completely, Beckett would be experiencing pain and not be able to express it.
The NICU team also got the green light from general surgery to start feeding Beckett again. Keith and I were really eager to start the oral feeding journey, still hoping to one day breastfeed if possible.
We had brought it up multiple times at rounds, and had been told multiple times by the neonatologist that they would request that a speech pathologist come to assess Beckett and walk us through the recommended process, but they had not actually made the request yet. We were getting frustrated, honestly. It felt like our requests and concerns around feeding weren’t being listened to, and that they just didn’t want to deal with the very involved process of oral feeding, when they could discharge him easily enough with an NG and leave us to work on it at home as an outpatient.
The nurse we had that day was very nice and gave us a hand with the AHS Safe Individualized Nipple-Feeding Competence (SINC) process. Basically, the first step was to introduce very small amounts of milk (we’re talking less than 1 mL) via a syringe while Beckett sucked on a soother or a finger. However, typically either a speech pathologist or occupational therapist would come to assess the baby’s sucking and swallowing abilities and make baby-specific recommendations, since it’s not a one-size-fits-all process. Since we had not received the assessment despite many requests, Keith and I were doing our best, slowly dribbling tiny quantities of milk into B’s mouth while he continued getting NG feeds during the day. He wasn’t really sucking on the soother - at best he was chewing on it - but he swallowed the milk without choking or coughing.
Finally having started Beckett’s oral feeding journey was satisfying in a way for me, knowing that we were doing something tangible to advance his skills. But in another way, it was incredibly frustrating feeling like we weren’t getting the technical support and expertise that we requested and that Beckett would need to meaningfully advance his abilities.
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