Julie's Boggle

We took Jon to Charing Cross hospital yesterday to have a hearing test, following his dubious results in the hearing screening at Queen Charlotte’s.

It turns out he has normal hearing in his left ear (praise the Lord) and 70db to 90db loss in his right ear across the audible spectrum. This means that the quietest sounds Jonathan can hear in his left ear are 10 million to 1 billion times louder than the quietest sounds humans can normally hear.

This sounds quite extreme, but the full range of human hearing between the quietest sound we can hear and the pain threshold is vast. We can hear sounds 10 trillion times quieter than the loudest we can bear. This means Jonathan does actually have some useful range in his right ear that could be realised with a hearing aid. Although it would have to be a pretty powerful one – his deafness counts as “severe”, just below the highest level of “profound”.

All this is pretty academic, though. It is most likely that his hearing loss will just not bother him very much. This has been the experience of quite a few people in my family, including me, who have serious hearing loss in the right ear. A hearing aid may be useful to help him manage noisy environments, which is the one place I do struggle a little.

For those interested in the hearing test itself, it is called an ABR test, Auditory Brainstem Response. It has to be done while the baby is peacefully asleep because it relies on detecting EEG signals in response to sounds they play through his ears. It’s rather clever really and while not as good as an audiogram where the subject consciously responds to sounds, it isn’t far off.

It turns out that real (cloth) nappies have come a very long way since the terry squares that I remember folding at age 7 – 8 for my baby sister…

These days they come in a whole range of different designs, all of which are a lot less hassle than the ones I was thinking of, and don’t involve soaking in a large smelly bucket of “Steri-Nappi”.

We were quite keen to try real nappies because we support avoiding the manufacturing costs that go into disposables. And after a week or two of using disposables on Jon, we also support very much the idea of not having an overflowing rubbish bin full of nappies every week!

The scheme that most appealed to us was the Nappy Laundry Service. With this, the service brings along several bales of fresh nappies every week, and takes away a bag of dirty nappies. They supply a handy bin to live near the changing area, and dirty nappies just get chucked straight in there. Voila!

The UK government is so pro real nappies right now that we’re even being sent a one-off £45 voucher by our local council to put towards the costs of the service. (This could also have gone towards buying our own nappies to wash at home but we were less interested in that option.)

So just a week after we got Jonathan home, we signed up with a service for our area called Nappy Ever After. They’re a great little non-profit organisation who charge us £10 a week for the collections and deliveries. The nappies they supply are basically thick cotton squares that fold fairly simply to fit into waterproof outer liners that we purchased separately.

So far it’s working relatively well. Baby Jon doesn’t seem to mind them and after interspersing a disposable or two on outings, I can confirm that they are definitely less smelly than disposables as well. Happiness all round.

A week ago last Friday, we took Jonathan for his first post-natal visit to Great Ormond Street Hospital for Children to discuss his cleft lip.

G.O.S. is a specialised children’s hospital which services the Greater London area and we count ourselves really lucky to have it as our default hospital.

With its location in central London, getting there with a new baby was quite an undertaking (especially for the recently Caesareaned) and Tom, whose paternity leave had run out on the Monday, took the day off work to help out.

Once there, they weighed and measured Jonathan, then we were ushered into a roomful of specialists. These people are the central part of the weekly clinic which sees all sorts of cleft lip and palate cases in children from babies to teenagers. The team includes a surgeon, orthodontist, ENT specialist, paediatrician and a speech therapist.

On our visit, the others looked on as Jonathan was examined first by the surgeon, and then by the orthodontist. His cleft lip was described by the surgeon as fairly minor, to be fixed around three months as we’d expected. In our case, this will be late October when we get back from SA.

The orthodontist then prepped us to expect an irregularity in Jon’s left incisor (it could be missing, doubled or skew), because that’s where there’s some bone missing from his alveolar ridge. This will be fixed though when he’s about 8 or 9 years old, before his permanent tooth comes in.

Once the specialists were done with us, we had a briefing with one of the clinic’s two nurses who covered details of the lip operation’s logistics – time, duration, pre-op visit etc.

And then our last stop was over at the Imaging Lab where they took several close-up photos of Jon’s head and the cleft from various angles.

We made our way back home via Oxford Street for some shopping for baby-related sundries and then it was finally back on the Underground where I could rest my weary, under-exercised legs!

As of today, Jonathan’s 3 weeks old and we’ve had him home for two of those.

He is a dear little chap (especially when he’s asleep ) and we’ve been learning a lot about him, on the job as it were.

• The two most commonly observed states of Jonathan are: awake-and-hungry (he always wakes up hungry) and asleep. Other variations exist but these are the primary ones.
• Bath water needs to be at 37°C for a peaceful bath time.
• Milk in a bottle (his 10pm feed) happily accepted at any temperature we choose to offer it.
• He’s a guzzler and bottles will be sucked down as fast as he can make it. (Usually 30 minutes including enforced breaks.)
• Currently he wants about 120ml for the late night feed.
• His lip doesn’t affect his breast-feeding but there is a bit of a knack to the bottle feeding, which Dad has mastered fortunately.
• He can be relied upon to sleep for 2 — 2.5 hours after 3 of his 4 daytime feeds. The 3 seem to be chosen at random.
• Ensuring a good 10pm feed will set him up to sleep through to just after 3am, and from there he’ll still be sleeping at 07h15 when we wake him up.
• While great at launching his head forward out of a semi-reclining position, he is absolutely no good at halting its momentum once it’s started!
• The record for an orthopaedic (specially-shaped) dummy staying in his mouth without assistance is about 10 seconds. (Regular dummies do much better.)
• He’s extremely well-tuned to knowing when he’s been short-changed on a feed. The ‘hungry’ flag will not be reset until he’s as full as he can get.
• He’s a bit of an art-lover, happy to spend long minutes staring at the print of Starry Night Over the Rhone on his wall from his changing-mat.

This parenting lark certainly takes a lot of time. We’ve been sitting on a whole pile of newer pictures of Jonathan, but never quite having the opportunity to publish them. Julie finally managed to get a new album together over the last few days, but hasn’t had time to post a link to it. So like all good parents, we’re sharing the workload and I’m publishing the link.

So, more pictures of Jonathan here.

Progress-wise, he is already changing. He’s more alert now than last week and beginning to find the afternoon sleep less necessary. Sadly this has been Julie’s nap time but it looks like she’ll soon have to make another plan.

UK Home Office Passport Service:
• The baby or child should be against an off-white, cream or light grey plain background so that their features are clearly distinguishable against the background.
• The baby or child should be on its own (no toys, dummies or other people visible).
• The full face should be seen.
• Both eyes should be open (for children over 6 months).

Not as easy as it sounds…

Quick note: Jonathan came home on Thursday evening.  We’ve been keeping a pretty low profile since then as we establish feeding.  But for those who are praying and wondering what the status is, we do want you to know he’s home and thank you for all your support.

Thanks too to everyone who has sent congratulations, cards and presents.  We’ll attempt to catch up with each of you individually, but it’s been a pretty crazy couple of weeks so please forgive us if we neglect you.

I finally have a moment to post some pictures, but first the latest news. Julie is still at the hospital getting breast feeding worked out, and I’m running back and forth dealing with things at home and helping Julie to figure out the breast feeding.

As far as the doctors are concerned, Jonathan is now a normal little baby with no extra need of care. They removed all of the monitoring equipment from him today. The only thing left to do before he leaves the hospital is to teach him that food does not magically appear in his tummy via a tube and actually has to be collected with some vigorous sucking.

Here’s the latest parent-heart-thumping photo:

Lots has happened since the last blog posting. So much, in fact that we haven’t had time to update the blog.

Here’s a quick run-down:

• Julie came home on Saturday.
• Jonathan started coming off the CPAP machine on Sunday evening.
• We attempted to breastfeed on Sunday evening while he was still on the CPAP machine, but with no success.
• On Monday morning Jonathan came completely off all assisted breathing and moved to low dependency.
• Julie and I moved into a room in the hospital so that Julie could be available for 3 hourly feeds.
• Julie and Jonathan spent more time figuring out the breast feeding thing between them and they are getting the hang of it slowly.
• Jonathan is still getting supplemental feeds via his stomach tube until he gets good at breastfeeding.
• Mel, the nurse from Great Ormond Street is coming today to assess his cleft lip and how it affects feeding.
• Jonathan should be able to come home at the end of the week!

We have plenty more pictures of him off the machine but no time to put them up right now. Stay tuned…