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Little Bee in Physio

Back in October, when we were first told that Beckett was at a high risk of developing cerebral palsy, we were told that because he wasn't "medically complex", AHS could only offer physio through the Pediatric Rehabilitation Centre (PCR). We were also told that the referral itself would take at least 6 weeks, and the sessions would be every 2 weeks (optimistically) and many of them would be through Zoom. To be quite frank: this was, and is, total crap.  I read a book when Beckett was in the NICU called "The Boy Who Could Run But Not Walk" - I won't summarize the book here, but it's written by a neonatologist/pediatric neurologist. The book emphasizes, and the author's lifetime work reinforced, that early intervention with therapies (such as physio) is critical in maximizing the outlook for kiddos who are neurodivergent.  We were very disappointed that this was all that was able to be offered through our public healthcare to Beckett at such a critical
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2024 Catch Up

When I started this blog I had the best of intentions to catch up to real time quickly and then write posts on a weekly basis to keep things up to date. That was optimistic. My goal for this post is to do a quick catch up - where we are with diagnoses and prognosis for Beckett. There will be other posts to fill in the gaps on more specific details and also how things are going on a more mental health/emotional side of things. But, there will be smattering of that in this post too, because the lines blur as I start typing. Here we are, March 2024. Beckett has previously been diagnosed with Currarino’s Syndrome (CS), and Cerebral Palsy (CP). Also previously unmentioned, he has GERD, which isn’t super uncommon in babies.  When we were told about Beckett’s genetic test results of CS, the geneticist ordered tests for both Keith and me to determine which side of the family it was passed down from. There was some indication that Keith might have it, since an old x-ray on file at the ACH showe

2023 Appointments and Diagnoses

From June 16 (NICU discharge day) to the end of 2023, Beckett had approximately 40 appointments relating to his medical conditions. These included appointments with: the Feeding Team, home nutrition, general surgery, nephrology, neurology, neuro surgery, neonatal follow up clinic, ACH vision clinic, genetics, B’s paediatrician, and his physiotherapist. It also includes a handful of appointments for imaging (MRI, ultrasounds). In my tally of appointments, I didn’t include appointments for his head shaping helmet, since this intervention is not considered medically necessary and was something Keith and I chose to proceed with knowing that Beckett would not be developmentally or medically impacted one way or the other.  Most of the summer appointments brought a lot of optimism. With the help of the Feeding Team, and hard work at home, Beckett proceeded to wean off of NG tube feeds by July 18 and he has been eating orally from that day forward. His paediatrician’s original assessments were

The Feeding Journey

When Beckett came home from the hospital on June 16, he was still being fed with an NG tube. His last week in the NICU, he was assessed by an occupational therapist (OT) to help progress his oral feeding skill. The OT’s first assessment was very brief. Beckett didn’t open his mouth when a soother was placed on his lips and he didn’t suck on a gloved finger when put in his mouth. The OT said he didn’t have a rooting reflex, and said that was all she’d do for now but would come back the next day. I remember feeling so discouraged after that initial meeting, because I felt like the conclusion reached was that he didn’t have a reflex that was required in order for him to learn to eat. I saw a future of tube feeding Beckett, blending everything into liquid form for the rest of our lives. I will say off the bat, that this did not turn out to be our reality, and I’m very grateful, but also that if it had turned out that way, we would have made it work as a family. It just would have really su

Beckett at Home

Having Beckett at home was an adjustment - like it is for any new parent. It was tiring, it was joyful, and it was busy. Most of our time was occupied with feeding Beckett. The NG feeds, SINC (oral feeding "training"), took a pretty long time to set up and clean up from. On top of that, I was pumping every three hours. No one ever really talks about the exclusive pumpers out there - boy, is it a lot of work. Pumping on top of bottle feeding, cleaning and sterilizing everything over and over again. 8 times a day to be exact, at the start. Anyone who stuck through exclusive pumping for any period of time deserves a big pat on the back - myself included!  Feeding was our number one priority. I will write a separate post about Beckett's feeding journey because it is deserving of that, but I will just say for now that Keith and I believed strongly that Beckett was capable to eating orally, and that his recovery would be greatly improved if we were able to achieve oral feeding.

NICU discharge day - June 16

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

In the NICU - Week 3

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 ge

In the NICU - Week 2

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

NICU and all the feelings

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 was

In the NICU - Week 1

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.  Later that da