Showing posts with label ichthyosis. Show all posts
Showing posts with label ichthyosis. Show all posts

Tuesday 10 April 2012

Tula Belle arrives, and Jessie Goes to France

Well here she is at last! Actually, she's already three weeks old...



It's been a funny few weeks. Tula was born at home on Saturday morning, after a fairly easy labour in which (as with Milly) everything was pretty slow and relaxed and then suddenly REALLY fast: one minute I was talking through contractions to the midwife, leaving messages on friend's phones; the next I was frantically panting to try to slow things down, yelling for the midwife to hurry the hell up and get here before Tula did!

Milly next to her day-old sister

Then, the worst happened: the next day the midwife decided we should go to the hospital and get her checked by a paediatrician as she was concerned about Tula's flaky skin and thought her upper arms and thighs were disproportionately small (they were in fact deemed small but normal after all). After a chest x-ray, the consultant told us that Tula's ribcage was malformed and therefore her lungs were constricted which means breathing is hard work for her and that she'd tire easily and that this, coupled with her very flaky skin, could indicate an underlying condition. She then said that she wanted to admit us both so that they could conduct further tests on her. So we were in hospital for three days - my idea of hell.

in hospital

Even though I was feeling much better in myself, after months of illness during pregnancy, the hospital ward was so hot and airless that I immediately felt crap again. Luckily I'd been given a private room, so I had the window open the whole time (even though the ward staff made a point of marching in and closing it) which helped a little. They were thoroughly upset with me for insisting on sleeping with Tula next to me and not in her trolley-cum-crib - in which I was ordered to keep her whenever I left the room: fear of litigation means that mothers are not allowed to carry their newborn infants "in case someone bumps into (them)". So much for the proven benefits of kangaroo care.

Tula having a chuckle over the dumbass health & safety regs

It was thoroughly stressful but the test results were all positive, so we know that her heart is fine, her lung capacity is not adversely affecting her body's oxygen levels and that her eyes are free of anomalies. The skin condition was identified as ichthyosis, but she has a very mild form of it and it should clear over the next few weeks.

My hospital visitors

The upshot of it all is that our little girl is going to need to be monitored regularly throughout her life and that she will always be prone to skin conditions. Whether she has an identifiable condition or not is yet to be ascertained by further appointments with dermatologists and geneticists at the hospital over the next few weeks.


All we're concerned about now is getting her weight up: she has breastfed really well from birth, but only feeds for a few minutes at a time before tiring. This meant that the last time she was weighed, she was pretty much static, so we are now supplementing breastfeeds with four-hourly bottles of formula. Again, not at all my choice, but the priority has to be Tula's (& my) well-being.

Feed chart
Jessie has been in France for a week now, on holiday with her Granny and cousin Bethany for Easter. We've spoken to her on the phone a few times, and she sounds amazingly grown-up! I can't believe she's only four! They're having a great time, and she very proudly told me that she's had dry nappies every night, which is brilliant to hear. Very odd her not being here, I do miss her.



We have started using our National Trust membership: last week we visited Lanhydrock, where we were accosted every few steps by cooing elderly maternal types wanting to look at the babby, to the point where they were virtually following us round the house in a plump gaggle. Yesterday we went to Antony house, home of the Carew family, where Tim Burton's Alice in Wonderland was filmed. It was a pretty lousy day so we didn't look round the whole of the grounds, but the bits we did see were quite lovely.


And today the sun is out but we are in, awaiting health visitor and outreach nurses.... never mind, hopefully we'll have a trip to Stroud later on, as Jess is due back on Thurs and we'll have to pick her up from Granny and Grandad's.

Plant label at Antony

... Tula was weighed today, and after an abysmal measurement last week (she gained 30g over a week), the good news is that she has put on 300g - hippity hop indeed!!





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