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Thursday, 05 March 2009 14:35

Beth under lights


Bethany is one very special girl - Evan and Jo's first child - who arrived in late 2007.  In the womb she was a kicker, and she still is a very active little one today - she just loves kicking at her toys, especially ones that make a noise.  She arrived as a tiny little one at 2.478Kg (5Lb 7Oz) after deciding that she had enough of growing in that cramped space. Daddy got to take her back to our room where she had to be kept under some heat lamps so she wouldn't waste her small fat reserves warming herself up.


Beth in her car seat



After a week in Figtree Private hospital - the name Bethany means "house of figs" - strange eh! - we got to bring her home.    She looked so cute in her little dress and was almost lost in the car capsule!  The straps on their shortest setting seemed just right, thankfully.



 Although she sucked pretty well, she still wasn't putting on enough weight to produce those cute rolls of fat we wanted to see, so she was weaned onto the bottle at around four weeks.  If there's one thing we know she loves without a doubt, it's her bottle!  She like to hear it being shaken up and when we stop halfway through to burp her, she makes it very clear that she would rather finish the whole lot first! Grandma says she's got a bit of spunk - she certainly doesn't just let things slide by her - if she wants it, you'll know about it!


She's always responded well to sounds and noises, her hearing test a few days after birth was normal and she knows the sound of Mummy and Daddy's voices because of all the talking and singing we did to her while she was in the womb.  Beth doesn't cry too much - mainly when she wants her bottle (feed me - stat!). Even when she has a little bit of a vomit come up she has a little bit of a cry but settles down again nicely. 


She put on weight like a trooper after that, at eight weeks was up to 3.84kg and had finally made it to the 5th percentile line in the average growth charts.  We were keeping an eye on her head size, as there was originally a concern about her ventricles being enlarged, but it increased at a normal rate and we know now that  she just has a nice small head.  She has most of her hair at the back near her neck, although she is now growing a little more on top as well.


Beth has done very well with her development so far; we were melted by her goofy smile which appears at around 10 weeks.  It's sort of a wide open mouth smile - it seems she's figured it out while enjoying her bottle!  She can get a very cheeky look in her eyes as well...  We think we got a little giggle the other day, but we're yet to see a repeat!


We give her lots of "tummy time" and she is able to lift her head quite well for short periods and when on an angle.  She's also mastered the gravity assisted art of half-rolling from her side onto her back, and likes to change from the normal length ways positioning in her cot around to across the width - with her feet hanging out the side - we call it the escape position. 


She sleeps well - at around 6 weeks we found her starting to sleep for up to 5-6 hours through the night, and we encouraged this and of late have had a couple of 8 hour stints, hallelujah!  But generally she goes to bed at 10:30ish, sleeps until around 4 and then Mummy wakes up and does a shift feeding, then sleeps through until around 8ish, when Daddy takes a shift.  Although she does often bring her feet together and up to her tummy, she sleeps in the "stick-em-up" position mostly - like someone has a gun trained on her, with her hands up above her head.  Her second favourite position is "the fencer", with one hand up and the other pointing off the side!


She does tend to arch her back and stiffen her entire body when she's not happy - she's a real squirmier, especially when she's hungry, and you've got to watch her as she can throw herself back quite vigorously.  Our doc held her in the air simply with a hand under her chest to check her, and she isn't in any way floppy - she makes like a real skydiver, even holding her head up for a few seconds.


Around 8 weeks she started "accidentally" sticking her hand near her mouth, and has practiced this well now, and manages to bring both her hands together and stick some part in her mouth.  She likes the comfort of sucking on them!  We hope she doesn't become too much a thumb sucker!


Visually, she would always usually turn and look towards a sound, and with some tippy-toeing into her room, if I just appeared beside her cot and swayed back and forth, she would notice me pretty quickly and check me out.  We then made up some  black and white cards with geometric shapes on them - she loooved the high contrast - her favourite is a white card with two black circles like eyes and a black inverted triangle like a mouth.  Maybe it looks like Daddy?


More now she's focusing on our faces, rather than our hairline, and her favourite book at the moment is one that has bright colours and reflective strips in it.  She watches each page for a good 5-6 seconds!


During the pregnancy there were some concerns (enlarged ventricles) that lead to us getting multiple ultrasounds and eventually an MRI and it was from this MRI that the doctors diagnosed her with Lissencephaly.


We are awaiting the results of some tests to determine the type of lissencephaly that Beth has at the moment (Feb 08), but won't know this for some months.  It appears though that she might have what is known as isolated classical lissencephaly which means "just lissencephaly without any other associated syndromes".  She may possibly have a "band heterotopia" but this apparently was not as clear on the MRI.


We don't know how mild or severe the condition will end up being for little Beth; we just have to wait and find out.  The fact that she is yet to have her first seizure is good, as is the amount of movement we are seeing right now.


In the meantime we are just going to love her to bits!  Of course we are also going to start with an early intervention program and various physio, speech, and other therapies that will assist her.


We would appreciate your prayers for little Beth and for us as well as we navigate through all of this.  See the news  and developmental updates pages for latest updates.

Last Updated on Sunday, 22 March 2009 15:32