Arabica's bean in special care - update

[bundle]

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

Poor souls

sending them all lots of love and hugs and wishing them speedy answers and the best outcomes possible

XXXXXX

Bundle, do you know if they are going to have to put in a shunt?

Thinking of you and your family Arabica

Very best wishes to Arabica and bean.

Love and best wishes to arabica and her daughter. A very beautiful name. xxx

Piffle
In the case of my friend, it actually took a while before the official diagnosis of PWS. There was a lot of to-ing and fro-ing and consults w/the geneticists.

Even now, with her appetite increasing, her most severe problems w/the syndrome are her learning disabilities, although she will probably have increasing mobility problems as she matures.

I was surprised, but apparently it can be tricky to get a correct diagnosis of this disorder, which from what I understand, can present as a different syndrome entirely but from the same chromosome?

I'm not entirely sure, just going on some of the issues my friend was telling me.

Arabica, hope Esja is getting stronger today!

Bundle, thank you for the update, I had been thinking and wondering about Arabica and Esja. Please send them very much love, FamilyBlu are thinking of them all.

thinking of you all xxxxxxxxxxxxxx

thank you dinosaur. have been praying for them.

Oh I had missed this. How amazing and brave and beautiful Arabica and Esja sound, dino. I hope everything will go well for them.

whoever sees her pass on my love, was thinking of them today xx

Thinking of them and praying for them - Strength and Love. xxxx

I went to see Arabica last night & agree with Dinosaur, she's being v brave (though admitting she's been very up and down) and Esja had a good day yesterday.

She didn't wake up while I was there, but I can confirm that she is VERY PRETTY (and I had a lovely cuddle with her).

I saw Arabica's ds and who adores the new baby and drew her a special picture on the front of her hospital file. Mr Arabica was also smiling a lot and was helping with the tube feeding.

They're hoping she can be transferred to another hospital soon where specialists can (hopefully) pinpoint why she has hypotonia (though Arabica has been told they may not be able to say definitively) and get a proper diagnosis.

Until then they're still trying to build her up (trying breastfeeding, bottlefeeding and tube feeding - in that order, each time).

The staff there are incredibly helpful and kind (though I did take her a small food parcel, as I knew the food would be crap ).

The knitters among you will also be delighted to hear that I took Arabica some wool/needles to make a scarf for her ds..to while away some of those hours spent in SCBU ....

Lots of positive thoughts and wishes on the way to you all arabica. Take care. xx

Thanks for the update bundle, thinking of them all. xx

bundle and dino, thanks so much for updating us about Esja and her family.
Whoever is due to see her next send her lots of tonic, harmonious musical love from EC2 and wishing them all the best as they try to get a diagnosis for Esja. She sounds so gorgeous

marina, she's really delicate-looking, a real china doll sort of face, with a fair amount of hair too. and the longest fingers I've ever seen with what appears to be a baby manicure though I'm assured it's natural

her legs are "chubbing up" a bit too.

on a more frivolous note, arabica netted a post-birth whole outfit (mainly from the local primark) herself, for a tenner

Glad to hear she is still getting her shopping done

Only just seen this. So sorry you have been having such a tough time after all you went through Arabica. Really hope you all get sorted and home soon and that you are enjoying your beautiful new daughter.

Thank you for the update - continuing to think of them and pray for them all. xxxx

Sending love to you, Arabica, and to your lovely new dd. Hope everything works out well for all 4 of you.