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Original poster

Arabica's bean in special care - update

92 replies

bundle · 03/08/2006 09:56

I spoke to Arabica last night - they're trying to "build up" Esja in special care, she has little sucking reflex and so they're feeding her by tube.

Her main symptom is global hypotonia, or low muscle tone, so she's quite floppy.

You may remember that the doctors were concerned during her scans because of the larger than normal ventricles in the brain (ventriculomegaly) but they still don't know what's caused this but various "syndromes" have been mentioned.

A geneticist is due to visit the hospital today to see another baby but will also see Esja and have a detailed look at her DNA too.

Arabica said she does have a certain "look" (a flattish nose, lowish ears and slanted eyes) but this may just be family stuff rather than anything significant.

She said the hospital are being great, she can stay overnight and she also sounded like she was recovering well from her c-section. I think she's being very very brave.

I sent her all best wishes from MN and told her we were all thinking about her.

I'll let you know if I hear any more, bundle x

OP posts:
dinosaur · 03/08/2006 10:01

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

saggarmakersbottomknocker · 03/08/2006 10:05

Thanks for the update bundle. Have been thinking of Arabica and wondering how things were. Hope Esja soon strong enough to be coming home.

Please send her my best wishes. x

expatinscotland · 03/08/2006 10:08

Thanks, bundle. Please send Arabica and Baby Esja our best.

Miaou · 03/08/2006 10:14

oh I had missed all this. Thank you for keeping us in touch bundle and send her all our good wishes. I will keep her in my thoughts.

Piffle · 03/08/2006 10:16

sounds exactly like my dd at birth My dd has noonan syndrome
feeding difficulties (thought never needed tube feding but a lot of Noonies do), low muscle tone, down slanted eyes, flat nasal bridge - ther is also a mild heart defect called pulmonary stenosis that accompanies it.
Pls if she needs to talk I would love to offer her a shoulder been through it all exactly as she has and my dd is WONDERFUL now at nearly 4 years old.
Wish her love and tell her it will be ok xxxxxxxx
My dd has noonan syndrome

Clary · 03/08/2006 10:20

bundle thanks for this I too had missed the announcement.
That's good to know about yr DD as well Piff. How are you btw????

Nanou1 · 03/08/2006 10:20

feel so for parents and baby. thinking of them all. best wishes.

SpaceCadet · 03/08/2006 10:23

please let arabica know that we are thinking of her and her little one bundle.
{{hugs for arabica}}}
xx

Piffle · 03/08/2006 10:25

I know I just banged that out really fast without thinking
What I meant to say was that it is a bewildering and terrifying time not knowing, we went through the mill with dd as a baby until we got our dx and then for bit afterwards.
Please tell Arabica to take care of herself properly, try not to worry.

I'm fine Clary thx , pukey tired but fine

Salamander · 03/08/2006 10:29

Arabica - our wishes are with you!

batters · 03/08/2006 10:48

This reply has been deleted

Message withdrawn at poster's request.

emkana · 03/08/2006 10:50

Please send Arabica and her little one all my love XXX

Northerner · 03/08/2006 10:53

I must have missed this too Aribica.

Sending you and you daughter lots of love
xx

bakedpotato · 03/08/2006 10:54

Sending good vibes to Arabica and Esja. Thinking of you both. xx

Havingatoughtime · 03/08/2006 10:55

kisses and thoughts x

mrsdarcy · 03/08/2006 11:20

Please send Arabica all my love and prayers, Bundle.

Original poster
bundle · 03/08/2006 11:20

piffle I will pass that on.

I think she's terrified of what might be happening so she's v reluctant to second-guess the consultants (and indeed is avoiding computers & search engines - v sensible!).

someone mentioned prader-willi syndrome to her (the excessive appetite one) which would be ironic, given that they're trying to feed her up..

OP posts:
KiwiKat · 03/08/2006 11:28

Have been wondering where she'd got to - please give her a hug from me too. x

wools · 03/08/2006 13:54

Thanks for posting Bundle, have been wondering how Arabica and Esja are. Wishing them all the very best.

lisalisa · 03/08/2006 14:11

Message withdrawn

expatinscotland · 03/08/2006 14:14

'someone mentioned prader-willi syndrome to her'

i have a good friend whose 8-year-old daughter has PWS.

it can take a while for some of the effects of this syndrome - like the appetite - to manifest.

just wishing her and Esja (what a beautiful name!) well.

LaDiDaDi · 03/08/2006 14:17

I remember Arabica'a threads when she was going for fetal MRI. I hope Esja gets stronger every day and that they get a diagnosis soon.

Piffle · 03/08/2006 14:19

with prader willi, although they need tube feeding at birth, they have a lower calorific need so need less fod than an average baby? also there are underdeveloped genitalia, though on girls it is quite hard to detect I think.
As with all things an early dianosis is really important
FWIW and not wanting to be total and scaremongering the flat nasal shape, eyes and low ears scream Noonans at me esp with feeding issues and hypotonia.
Not awfully helpful or kind to speculate mind you, its just that its fairly isolated having a child with such a rare syndrome, the chance to speak to someone else abut it is overwhelming sometimes

foxinsocks · 03/08/2006 14:23

poor arabica - please let her know that she is in our thoughts. Has she got other family/friends giving her a hand?

Lemmingswife · 03/08/2006 14:27

How worrying for poor Arabica & her family.
Wishing them them all the very best.xxx

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