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No peace of mind for emkana

(111 Posts)
emkana Fri 28-Apr-06 18:24:20

Went to see Dr. Chitty today.
Unfortunately she couldn't give us a definite diagnosis either, but she is leaning towards Jeune syndrome, just like the German doctor, while saying just like him that the thorax isn't that small, which might or might not be a good sign.

Now all we can do is hope.

The one thing I took out of the visit that really helped was when I told her about my greatest fear about having a child permanently in hospital, and what that would mean for my dd's.
She told me her youngest had to go into hospital at 5 days old, when her other children were as old as mine are now, and that I should remember that my older children need me, while the baby will forget if I wasn't there all the time.
That was a big help for me as this is the main thing that keeps me awake at night, wondering how to be able to care for all my children if this baby requires permanent hospital care.

Please keep your fingers crossed for me that things will turn out as well as possible, and if you're that inclined, please pray for my baby's health.

HunKeRMunKeR Fri 28-Apr-06 18:26:37

Oh my darling, I'm so sorry that you didn't get a definitive answer.

I'm glad she was able to give you some comfort, I just wish you weren't going through this.

Thinking of you all x x x x

Caribbeanqueen Fri 28-Apr-06 18:27:03

emakna, I have been following your story but haven't posted before. I just wanted to say how strong you seem to be and I will definitely be thinking of you and keeping everything crossed.

blueteddy Fri 28-Apr-06 18:29:07

Oh, I am so sorry you are facing yet more worry & still have no definite answers.
Thinking of

Lio Fri 28-Apr-06 18:30:54

Everything crossed, am so sorry that you are still having to worry about this. Big love.

beansprout Fri 28-Apr-06 18:31:05

I'm also sorry that you are having to deal with so much uncertainty. So sorry that Dr Chitty couldn't give you any answers xx

throckenholt Fri 28-Apr-06 18:33:10

sorry things are so tough for you.

But I agree with the doctor - the older children need you more - the baby will be well cared for in hospital (if it comes to that) and will not really notice how much you are there.

PrincessPeaHead Fri 28-Apr-06 18:33:34

oh emkana. hugs from wiltshire.

Enid Fri 28-Apr-06 18:34:03

thinking of you x

emkana Fri 28-Apr-06 18:35:29

Thank you all.

Btw I had some posts deleted on several threads because I have become so easily identifiable, so I just wanted to delete the most revealing ones.

Christie Fri 28-Apr-06 18:36:15

Message withdrawn at poster's request.

006 Fri 28-Apr-06 18:41:59

Message withdrawn at poster's request.

Blu Fri 28-Apr-06 18:42:43

I was thinking of you this morning, as i realised that we hadn't had a report of your appointment by yesterday, it had to be today.

At least you know you have done everything you can do to find out anything definite, so there really is nothing to do but wait and hope.

The whole of MN will be hoping, too, Emkana. Take lots of care of yourself.

How was your DH about the appointment today?

emkana Fri 28-Apr-06 18:45:49

It got to dh today, but then later he was quite upbeat again, which in turn helped me.

I don't know how he does it.

Would you all agree with what Dr. Chitty said -
with a tiny baby possibly in hospital care, how should I divide my time between being with the baby who needs me and being with my older children?

I know that atm this is still theoretical, but it haunts me so much and I have to think it through. Would be interested in opinions - might even start new thread.

LadyTophamHatt Fri 28-Apr-06 18:47:39

Oh emkana.
I'm not a religeous person but your last sentence brought a tear to my eye.

If ever there was a time it's now to send my first ever {{{hug}}} on MN.
I truely hope that everything turns ok fine.


HappyMumof2 Fri 28-Apr-06 18:50:23

Message withdrawn

HappyMumof2 Fri 28-Apr-06 18:51:22

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fastasleep Fri 28-Apr-06 18:51:44

Emkana, I'm of the opinion that small babies need cuddles/soft touches etc etc as much as they need nutrients when they're tiny, but having said that I know that nurses on Neo wards are so utterly fantastic hun they'll go round and cuddle your wee one or give him/her a stroke and a kind word every time they check (which is very often if you're not there)... he/she won't be given the chance to feel neglected honestly... having been on a few wards and watching the nurses run to crying babies I know kind of what I'm on about, also other parents will be fantastic and help out if you ask them...

Am still hoping and thinking of you xxxx you're doing briliiantly

Hausfrau Fri 28-Apr-06 18:52:38

Message withdrawn at poster's request.

emkana Fri 28-Apr-06 18:52:41

He will be at the local hospital, hopefully, there is a neonatal intensive care unit.

KBear Fri 28-Apr-06 18:53:15

I haven't posted on your threads before but you're in my thoughts emkana.


Blu Fri 28-Apr-06 18:57:04

emkana - DS was in and out of hospital over a sp0an of months when he was small, and in the room opposite was a newborn - for months and months, very poorly.

When we first stayed, I admit I was shocked that the Mum didn't spend much time there. But it didn't take me very long at all to understand. The baby was fine - and very very well looked after. There was no point in this poor woman sitting in a hospital room with nothing to do, fulfilling no function for the baby - which slept all the time - like some kkind of vigil of martyrdom. I also think - she said this - that she needed the emotional distance sometimes - she couldn't be sure that he would survive. She did come every day, often briefly, she came when there was any consultation with medical staff. She brought her own clothes for him, and asked that he not be dressed in hospital clothes or blankets, she left v sweet notes on his cot for nursing staff as if they were from the baby. But what she needed to do was still be part of the rest of her life. I used to talk to her a bit - she was warm and funny, and anxious and sad, and completely honest about the need to take care of other areas of her life where she was needed.

fastasleep Fri 28-Apr-06 19:00:14

I did the note thing!!

It said - 'Please remember I drink my Mummies EBM, and I wake in the night, please don't let me wiggle with my kidney drain in, I like a cuddle at about 2am and maybe twinkle twinkle little star singing to me while you hold my hand (and again first thing in the morning) thankyou very much'

<sob> at memory!

And they did all that, without fail. And more!

foxinsocks Fri 28-Apr-06 19:02:22

well done for getting through today - you must be getting thoroughly fed up of all the prodding now

hope you found your way ok

ds was in hospital when he was tiny (not permanently) and the nurses were fantastic. I am sure they are used to mums and dads being pulled in all directions.

Will she see you again or be involved with the rest of the pregnancy?

kayzed Fri 28-Apr-06 19:02:37

Message withdrawn at poster's request.

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