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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:

Elibean · 15/08/2006 23:08

Also missed this...congrats on little Esja, Arabica, she sounds gorgeous. Hurrah for the feeding, too!

OldieMum · 15/08/2006 23:09

Only just seen this. Warmest thoughts for you, Arabica.

BudaBabe · 16/08/2006 21:20

Have only just seen this - best wishe to you all Arabica. Esja sounds adorable. Please God she will continue to improve and feed well.

Love the thought of her pulling out her feeding tube! Can just imagine her lying there thinking - "Hang on - Mum's gone shopoping without me!!!"

Arabica · 18/08/2006 14:47

Hello, just to update everyone, we are still in special care, I have just come home for a break. Esja has been to Hammersmith Hospital to meet a very nice consultant neurologist. She didn't have any diagnosis in mind but thinks the problem is more likely to be connected to the dilated ventricles in the posterior part of her brain and some tiny cysts they've found. She is having an MRI scan soon which they will compare to the MRI done when I was pregnant. She's also had lots of spinal fluid & blood taken so they can do metabolic tests.
Feeding is one step forward and two steps back, she was giving the appearance of successful breastfeeding but was still losing weight or not putting it on fast enough and then also doing some vomiting of her tube and bottle feeds. Fingers crossed she is now a little stronger and is therefore able to suck a bit better and get more milk when she's bf. We then top up her feeds with expressed milk through a tube. Am absolutely sick of being in hospital, with all the petty rules (was told off for washing a bra yesterday and hanging it on the radiatordo they expect me to wear milk-stained, vomit-soaked underwear until I can get to a washing machine? Obviously, yes.) family life is completely disruptedDS (age 5) has given up even asking when mummy's coming home. I just call in to get the washing done and see him for a couple of hours at a time. The plan is for Esja to gain weight, sustain the gain and then for us to learn how to maintain the tube at home, then she can come and live with us pending investigations.
Her main symptoms are being floppy (especially around the neck) and poor feeding due to a reduced ability to suck. But the more food she has the stronger she is getting.
Thanks for all your good wishes.

prettybird · 18/08/2006 14:52

Thanks for the update Arabica. I'd been wondering how you and Esja had been getting on.

You (and Esja) will be leaving hospital and its petty rules behind some time soon. One day they will be but a memory.

I feel for your ds - poor wee soul. But I am sure he is proud to be a big brother.

Arabica · 18/08/2006 15:00

Yes, he sure is proud of her and tells everyone how to pronounce her name and how you spell it. I wish I could be so confident we were leaving SCBU, at the moment it seems we have been there forever.

KiwiKat · 18/08/2006 23:09

Really pleased that little Esja's making progress - and lovely to hear that her big brother is so proud of her. Hope it gets easier for you all soon. x

LaDiDaDi · 18/08/2006 23:22

Thanks for the update. Fingers crossed you get Esja home asap.xx

saggarmakersbottomknocker · 19/08/2006 16:49

Arabica - have been away but have been thinking of you and Esja. Sorry that the hospital are being less then flexible in their attitude to the everyday practicalities of a long term stay, lets hope you manage to get her home very soon. My dd was tube fed for a year so if you need any advice, please give me a shout.

WideWebWitch · 19/08/2006 16:56

Arabica, I've only just seen this, thinking of you.

hoxtonchick · 19/08/2006 17:00

i went to visit arabica & esja today. she is so beautiful . arabica is amazing & brave. we are going to play with her ds on monday.

foxinsocks · 19/08/2006 17:40

poor you Arabica - ds was in the care of the paeds at Hammersmith hospital when he had breathing difficulties (as a newborn) and I must admit, I was always very thankful that we only ever had to be treated as day patients and escaped without having to stay the night!

I'm so glad she seems to be doing a bit better and I only hope for all your sakes that she'll be strong enough to come home soon. xx

Arabica · 19/08/2006 22:25

I didn't know that about your LO Saggars. We might be allowed home with our tube but she's got to stop the vomiting first or she'll never gain enough weight! It's ironic because I was bulimic in my teens/20s...
Thanks for the lovely comments HC, it was great to see you too.

PinkTulips · 19/08/2006 22:38

can't believe i missed this thread! been wondering how you and esja are doing arabica. i'm glad the feeding is starting to go in the right direction and i'll have my fingers crossed that the vomiting improves enough so that you can take her home soon and get back to some semblance of normality.

hugs to all of you (especially ds, he sounds like he's really being a fantastic big brother at the moment)

bubble99 · 19/08/2006 22:56

Love to you all, Arabica. XX

suedonim · 24/08/2006 02:45

I've been away and had no idea you were going through the mill, Arabica. I hope little Esja is getting better by the day and you'll soon be home.

In the meantime, remind the hospital staff that it's your taxes which pay their wages and you'll hang your 'Upper decker flopper checkers' wherever you darn well like!

ghosty · 24/08/2006 03:25

Or "Over Shoulder Boulder Holders" ever suedonim

Arabica ... I have missed this whole thing so didn't know any of it till now ... you sound so great and upbeat and little Esja (stunning name btw) sounds like a fighter ... like her mum obviously
Thinking of you all ... xxx

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