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

i am hoping to visit them this week

Thanks for updating us Bundle. My thoughts are with Arabica and her family.

Hello everyone. I have just popped home for a change of clothes and a cup of decent coffee, and am so delighted to read all your lovely messages. Esja had a good night and when I woke up she had ripped out her feeding tube! She has had 3 breastfeeds in a row which is really good as she wasn't born with a strong sucking reflex. Am interested in finding out more about Noonan syndrome, Piffle, but am going to refrain from researching anything myself as yet. Just concentrating on getting her strong and healthy feed by feed.
Big love to you all.
And Bundle I have been doing my knitting when I have a spare moment between expressing milk, sterilising and wringing out the breast pads. If anyone can recommend super-absorbent breast pads do tell cos mine are rubbish (Lansinoh washable).

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Just keep your eyes on Mumsnet, Arabica, we'll distract you...don't look away now....

Lovely to hear about Esja's progress. Fingers firmly crossed that she continues to make headway.

Arabica, really pleased to hear Esja is doing so well breastfeeding now. Agree take it one step at a time and get her strong then worry about any research you want to do.

I also missed this. Best wished Atabica, and congratulations on the birth of Esja. Hope she is home with you as soon as she can be.

Lovely to hear that Esja is doing so well, Arabica. She sounds really gorgeous!

arabica, glad the feeding is going so well, well done to both of you! xxx (have started my scarf too, xxx)

Thank you for the update Arabica! Go Esja - Pulling her feeding tube out - Rock on! My DD2 did that and it was the beginning of establishing a decent breast-feeding routine for us both - rather than having to top her up through the tube all the time - Glad that it seems to be working so far!

Thoughts and Prayers remain with you! xxxx

Really pleased to hear that little Esja is making good progress, Arabica. And looking ahead, here's a chance for us all to celebrate together in rl - the Mumsnet Xmas meetup on 18th NOVEMBER 8PM at Ruby (23 Orchard Street, London W1). Thread is here for details, and to add your names to the list.

But hoping to see you before then, Arabica, so I can have a cuddle of your beautiful baby.

xxx

Hi kiwikat!! How are you getting on honey??

[hugs] for Arabica and Esja!

Both doing well now, thanks - have been given the all-clear. Nice to see you here. xx

(Apologise for response to hijack.)

Esja lost 100g but the paediatric nutritionist isn't too worried, she says as I have only just been able to start breastfeeding in last 36hrs we wouldn't yet see any improvement in her weight, this is probably about the losses from when she was vomiting.
CaprainDippy I like the sound of your LO, Esja is hopefully going to be a feisty one too.

Yey! for fiesty little ladies!!

Glad Esja is doing well - I hope you don't think I am too much of a freaky stalker (), but I have been following your story a bit over the past few months - being an older mum and getting PG and then your pregnancy and Esja's early arrival and the Special Care stuff etc - Thinking of you all and praying she gets stronger and healthier everyday!

Did they replace the feeding tube or just leave it out??

Go Esja!!

Hi Arabica,

How is Esja doing today? Hope all is going well.

Awwww I missed this thread.
Ive been thinking about you Arabica and wondering how little Esja was doing.

Glad to hear things are on the up

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Hello Arabica, good to hear that Esja is giving the old tubes the thumbs down
You have all been much in my thoughts, how are things going at the mo? XXX

Arabica - great to hear news of little Esja, she sounds adorable.
Brilliant news that she has b/fed 3 times in a row.
Thinking of you.

Hope all is going well xxx

best wishes arabica
glad to hear Esja is feeding better

Completely missed this Arabica. Thinking of you and Esja xxxx