The Cerebral Mum

Cas and I have spent a lot of time in waiting rooms since he was born. I’ve just added it up and there have been over thirty appointments. There have been the usual weigh-ins and vaccinations of course, and then the GP, paediatrics, audiology, pathology, ENT, plastics, and Cleft Clinics.

Even leaving aside the days after he was born waiting in the hospital for the registrars and the speech pathologist, and leaving aside our recent stay waiting for all his post-surgery examinations and medications, he has still spent a month of his short life, 1 day in every ten, in waiting rooms.

When you’re alone, sitting there trying to read a book or playing with your phone or just trying not to let the fluorescent lighting crush you, time is interminable. But when you have company, and I mean the best company, it’s almost not long enough.

Everything is fascinating with a baby. When he was tiny and couldn’t do much, everything he did was compelling and it was time away from the chores surrounding me at home. Once he got a little bigger, the linoleum was a source of interest, the bad art he pointed at on the walls could be exclaimed at and described even though he couldn’t hear me clearly.

And there were all those people he could stare at, and all their cooing and praise for me to enjoy.

Now that he’s walking, I let him lead me by the hand to inspect our audience. Occasionally he warms to them and graces them with smiles. Occasionally he will perform. And time flies.

I like to think that time moves faster for his audience as well. Waiting rooms are so oppressive. Small talk is uncomfortable, and even whispers are uncomfortably loud. A child gives everyone an excuse to relax their boundaries, forget about the stress of why they are there and just breathe.

Perhaps I’m wrong, and for some we are an annoyance but I let him explore the people as much as the place freely. As a single mum, with not much contact with the outside world at the moment, I like that he is not shy of people. He is not gregarious; he’s a watcher, but I people his world with strangers and that’s the best I can do. For now.

So we like waiting rooms.

Well, Mum had been here for more than half of her holiday so it was looking like she’d be gone before Caspar had his surgery. All the information I had been given about a date was that I would be notified 3 weeks prior.

And then the phone rang.

Eleven days.

The surgery was scheduled for the 17th. They would send out a letter with the details.

“So that has all the information I need, like what to bring with me to the hospital?” I asked.

“Um. It just has general information,” says the faceless, knowledgeless one. And that was it.

When I hung up the phone, in spite of having been waiting eagerly for the date to be set, in spite of not being the least bit squeamish or worried about the operation and in spite of having kicked up a bit of a stink to get it scheduled as soon as possible after being dicked me around with my ENT appointments, every last cell in my body was trembling.

Eleven days.

With Mum here, there has been little time to dwell, or work myself up into a high-strung mess but it hasn’t been far from my mind. There is just this senseless restlessness, a kind of squirmy, uncomfortable anticipation. This gnawing feeling that there was something that I should be doing.

Of course, there was nothing that I actually could do. All I could do was wait.

I did keep wondering about what on earth I needed to pack. The last time I was in hospital was when Caspar was born and it was all strictly BYO. Bring your own formula, bring your own feeding equipment, bring your own nappies etc. Did I need to bring everything a baby needs for a five day stay? Formula and nappies are not so hard, but Caspar is eating three solid meals. How much fridge space would I have for his food? And what the hell could he eat after the surgery anyway? How much appetite would he have?

The documentation I received from the Cleft Clinics way back when said that he would need to be eating off a spoon and drinking from a cup but when I asked the surgeons to clarify that I was told not to worry about it. Should I be worried about it? Caspar has long since passed the spoonfeeding stage and is very much attached to feeding himself toast soldiers or steamed carrot sticks, and in spite of trying several different styles of baby cups, cups have proven to be a very efficient way to create more laundry for myself and a not very efficient way to provide sustenance.

So I called the hospital and was told that food, feeding equipment, nappies and bedding would all be supplied. I was also told that if I decided to stay (Huh? The CleftClinic told me that I would definitely be staying!) they would provide me with a sheet. A sheet! What does that mean? Do I sleep on a chair for five days, or something? So calling has left me with more questions and I have packed a ridiculous amount of clothes, toy, books etc.

And unpacked.

And repacked.

Twice.

But at least tomorrow, I will actually be doing something, and this nervous energy will have somewhere to go.

We finally had the ENT (Ear, Nose, Throat) Clinic appointment yesterday and met the surgeon who’ll be putting the grommets in to fix to Caspar’s hearing at the same time he has his palate repair. I say finally because the hospital scheduled the clinic for me in March without bothering to notify me. Plastics has to wait on ENT before a surgery date can be set and I was worried about the delay. The longer we wait the more behind he gets in terms of language development. His file still has a rough time frame of midyear though, which is great but may coincide with Mum’s visit and I’m in two minds about that.

She’ll be here for most of July and while it would be nice to have someone to visit us while we’re in hospital (It’s a 5 day stay for both of us), it would also be nice to spend all of that time with her. There are no guarantees when the surgery will be, however, and when it comes down to it, sooner is better than later.

Cas is on the waiting list as Category 2 - Semi-urgent so the surgery should take place within a 90 day window. I do know that some other cleft patients haven’t had their surgery until 12 months old, but I’m feeling pretty hopeful we won’t have to wait that long. I’ll get a letter 2-3 weeks prior, so I’ll just keep checking the mail and be ready to go when we have to go.

But back to the appointment…

We had the audiology tests yesterday as well, so I don’t have to go back to the hospital next week. Now that he’s older the tests are much more fun. The newborn tests are done while sleeping and take forever because getting a baby to sleep while things are being poked into their ears and electrodes are stuck to their head is something of a challenge. The tests yesterday could actually confirm (rather than “indicate”) that there is fluid in his ears limiting the movement of the ear drum which shows that there is a conductivity problem rather than a sensorineural one that can’t be fixed. Almost all cleft babies have this problem and once the grommets are in the ENT surgeon told me that it is 99.9% sure that his hearing will be perfectly normal.

There was also another test done to measure his response to sound. Caspar faced the audiologist while she played with toys and made faces at him and the volume of a speaker was slowly adjusted to measure when he would turn to see where the sound was coming from. When he turned he was rewarded by a box lighting up and flashing to reveal a toy cow. Unsurprisingly, he did need the volume higher than a baby with normal hearing before he would respond, but I was quite proud of him anyway as this test is not usually reliable until the baby is ten months old. He might not hear perfectly yet, but he’s smart!

We also had his weigh in at the Maternal Health and Childhood Centre this morning. His current stats are:

Weight: 9.41 kg (75th percentile)
Length: 69 cm (75th percentile)
Head Circumference: 46 cm (90th percentile)