A few weeks ago, I was rather proud of myself for getting the boys out early for their big appointment and for doing the whole day by myself. It was a Monday and on Mondays sometimes I can get help but this particular day I also just wanted to see if I could do it myself, kind of like a pride thing. It went really well and was actually fun. (As fun as 5:30am with pukey babies is?)
So normally I don’t get to go to bed until around 2 AM, but the night before Chris unhooked the boys last feed for me so I was able to go to bed at 12:30am. Then I got up at 5:30am to get the boys ready and fed (1.5 hrs), then I had to pump for an hour, get dressed, get all the shiz packed up and that sort of stuff so basically getting up at 5:30 to leave the house at 7:30am.
What actually happened was me sleeping in until 6am and actually leaving the house at 8:15am. And then realizing I was completely out of gas. Our appointment was for 9:30am and the hospital is an hour away, plus the parking shiz which is a disaster there. Gah.
It worked out. They napped on the drive there (yasss) and predictably, I pulled in 5 minutes late and couldn’t find a spot in the whooooole parking lot. However our hospital has valet parking. Why doesn’t every hospital have this?! AMAZING. I just pulled up to the entrance, unloaded all my gear and gave the valet the keys. I have no idea where they parked it because there were literally no spaces left, but whatev! It became not my problem. What a great service, I love it.
Turns out our neurosurgeon was running late so we waited for an hour in the office, then met with the resident first before our main neurosurgeon. We were there for a routine appointment for both boys for their hydrocephalus. However, 2 weeks ago we thought Jaxon’s shunt may be failing again since he was exhibiting some signs of shunt failure: massive vomits (more than usual), irritability, some weird eye movements etc. We took him to the ER where he got a full shunt series (including CT scan) which showed the shunt was clear and working well. However, it also showed that his 4th ventricle is now enlarged.
This can become something called isolated 4th ventricle. There are 4 ventricles in the brain and the 4th one is located at the back of your head by the brainstem. Near all the serious brain stuff, so it’s not a place you want to have surgery done in because of the risks. Our neurosurgeon says he does not like to operate in that area (especially on a small baby) unless absolutely necessary.
So, it’s worrying. If it continues to get worse, surgery is the only option, however it has a much more significant risk of death or complication (i.e. MORE brain damage) than a standard VP shunt procedure. It’s just not a good scene…
Both boys will have sedated MRIs in a few months to get a closer look at their brain damage. Jaxon mostly to see how his brain has adapted to the severe hydrocephalus (his brain was over 50% fluid after birth), and also to check out that 4th ventricle in more detail. Axel will also have a scan because he was going to anyway (to monitor his brain damage too), so makes sense to just do them at the same time since it requires a bit of hospital time (I think just 1 day/not overnight?).
After the appointment, I took the boys up to one of the family lounges and set up their feed to run and also pumped. Then I set out for a walk with them with feeds still running, got a coffee and walked around the mansions of Shaughnessy (residential area near the hospital where a small house that needs work starts around $6 million, lol, welcome to Vancouver real estate).
It was great to get out and enjoy some fresh air in a new area. I felt proud that I did the whole day by myself!
- The boy’s super cute “Batman” shoes are from Curly & Gus.
- Their functional adaptive G-tube rompers are from Ready Set Romper. (Use code GTUBEBABY for $5 off!)