On March 20, we were at our Children’s Hospital for a day of appointments as part of the NICU follow up clinic. This clinic does just what it sounds like – follows former NICU patients – at set intervals (by corrected age): 4 months (you can read that visit here), 8 months (this post), 18 months, 4 years and I think 6 years.
They assess overall development, make recommendations to our various physios, OTs, early intervention people (called IDP here in Canada), and generally help out with the boys’ development wherever they can, and give us an idea of their futures.
It was an early start to the day, and we had to run the boys’ morning feed over their pumps in the car on the way to the hospital, because their feed time is 8am but we had to leave at 7:30am for our 9am appointment. That was risky because the feed ends around 9am, then we have to transfer them from the car seats to the stroller seats and even that minimal amount of jostling around is a recipe for a reflux puke fest.
So it was 8:58am, pulled up to the hospital in a rush, got the boys and our bags loaded up and rushed to the reception desk for the clinic. I stand there, check in with the receptionist and as soon as the words, “Yes, the Martin twins for 9am…” left my lips, I hear a BLAAAAAARGH behind me.
Both boys immediately projectile vomited up most of their feeds everywhere. I turned around just in time to see the spew spray out, coat each of them, and land OUTSIDE the stroller on the floor below, dripping off the sides of the seats. UGH. The receptionist looked momentarily stunned as well. AWKWARD.
Luckily I had enough time before they called us back to a clinic room to change the boys clothes and wipe down the rolling puke wagon.
So. This appointment had both good and bad news…
The Good News
- Jaxon has great hearing (a hearing test was part of it this time)
- Jaxon is VERY advanced in speech (so far). This is a BIG deal and I detail more about it below.
- Axel was able to complete some cognitive reasoning tasks by understanding what we were asking him to do, then doing it. An example is picking up a block and dropping it into a cup.
- The appointment was with the nurse who admitted the boys to the NICU the day they were born, and our favourite neonatologist from the NICU who looked after our boys often. And she was the one who believed my intuition when I thought something was wrong with Jaxon’s first VP shunt and ordered a same-day head ultrasound when everyone else told me they couldn’t do that. (Turns out I was right and his shunt was failing.) I will always remember her believing in me.
One other very nice thing to hear was when the neonatologist said she could tell we work hard with the boys (on their physio, OT and other therapies). She said it shows, because without what we’ve already done (which I often feel isn’t enough), they would not even be where they are now, which is still so severely behind, so I could only imagine what life would be like if we didn’t try. But, we’re always going to try.
One of Jaxon’s favourite things: sitting in his Tumbleform chair and playing with toys on the toy bar!
Okay, so the speech thing for Jaxon. He’s not talking, obviously, but he makes more advanced vocal sounds than normal for his age. All kinds of oohs, ahhs, Ws, Ms, Bs, Ds, Gs, Y sounds… and lots of tonal range to show mood and that he’s trying to communicate. It’s wonderful! I think this is partly because a) I talk to the boys ALL DAY LONG and b) since he cannot see, he is definitely more in tune to sounds. He loves music and especially my voice, and I always say the same things when I’m doing certain tasks, like changing him, feeding time, play time, dance time, etc.
The reason this is SO MIRACULOUS rather than just, “That’s cool”, is that he should NOT be able to make hardly ANY of these more complex sounds (W, M, Ds especially). He does not eat by mouth and does not take a soother, so he has ZERO mouth muscle exercises going on. In “typical” babies, they develop the muscles required for speech by eating (either breastfeeding or bottling), sucking on a soother or putting stuff in their mouth. Baby stuff. Jaxon does NONE of this. Sometimes he brings toys to his mouth but his control there isn’t great so it isn’t much actually in his mouth.
Jaxon has recently begun bringing items to his mouth!
SO. This means he has developed the ability to speak entirely on his own. And quite frankly, that should be impossible. The neonatologist mentioned it SEVERAL times that it was very surprising, especially since one of the doctors’ original predictions for Jaxon based on his extensive brain injury was that he’d be non-verbal (1 in 4 with cerebral palsy are).
J BABY IS A LIVING, BREATHING MIRACLE.
J passed out as soon as we got home. LOL
The Bad News
- Axel’s hearing is a bit uncertain. He can’t hear certain tones. We are repeating the test in 2 months for a more accurate picture. It will not be severe if he has any hearing loss, but it is still somewhat worrying, so we’ll see what happens in 2 months. Hearing loss is more common in preemies weighing under 1500g (Axel was 850g).
- Axel’s right hand and thumb are very stiff and not working as they should (muscle tone issue from brain injury). We hope continued physio will help over time.
- Both are very behind on all motor milestones, of course. But we couldn’t even try the cognitive stuff with Jaxon (dropping the cube in cup etc) as he can’t see what we’re asking him to do. (Why are there no cognitive tasks on the test for blind children?!)
- Jaxon’s Cerebral Visual Impairment (CVI) – we do not know what he can see (light? rough shapes/outlines? movement? or NOTHING?). This has been a very devastating diagnosis for me since we found out in February, and I feel like I’m still reeling from it every day. It’s truly the hardest part of my journey toward acceptance right now.
- And, the worst news we got… We were told, based on the doctor’s experience/read of their situation, that it’s VERY unlikely Jaxon will ever walk, even with assistance. She went as far as to say that frankly, he won’t. She thinks Axel might, with assistance (a walker, a cane, something else?). It’s so hard to hear, honestly. Not terribly surprising, but really hard.
And, that if either of them do walk one day, it will take months or maybe even years of intensive, purposeful and constant physical and occupational therapy. Sometimes I get jealous of parents of typical children, who seem surprised one day and say, “Oh! Little Johnny is sitting! Oh, look, they took their first steps!” like it’s something that just happens one day. I know that’s not REALLY how it goes, but… it’s definitely easier than what my boys have to go through. That really pisses me off sometimes.
It’s hard to hear a lot of the negative stuff doctors and therapists tell us at nearly every appointment. Sometimes it’s so devastating that it’s hard to let the occasional good news sink in, too (like this speech thing for Jaxon). Many days I am not able to be positive at all. I cry, I get angry at life, angry my boys have to struggle so much more than many of their peers. I wonder what their futures will be like and it looks bleak to me.
These faces do make me feel better on my worst days, though.
Other days, like on the one I am writing this post on, I am able to still remain hopeful enough to dare to dream about their futures… as happy-go-lucky kids running around with their friends on the playground. Of our family going on hikes or to the movies (that Jaxon would be able to SEE)… Some of these dreams are far-fetched – like Jaxon’s vision, it is not reversible I am told – but I can still DREAM them.
A recent outing now that the weather is so nice. It was a dream to get out for the afternoon!
Some days, my dreams for them are all I have. They’re simple dreams. Being able to walk, eating at a restaurant together (by mouth!), watching movies, talking together during a car trip. They’re very simple dreams, and I hope they all come true.
