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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

No peace of mind for emkana

110 replies

emkana · 28/04/2006 18:24

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.

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tamum · 28/04/2006 19:08

Emkana, I am so, so sorry. I thought you must be going today as we hadn't heard, but I was really hoping you'd have some reassurance. I'm not much of a one for praying, but will gladly do so.
xxx

soapbox · 28/04/2006 19:11

Emkana - so sorry you still haven't managed to find a little bit more certainty.

Of course you will be able to find a way to cope with all of your children's needs! I think Dr Chitty had some very wise advice indeed:)

soapbox · 28/04/2006 19:11

Emkana - so sorry you still haven't managed to find a little bit more certainty.

Of course you will be able to find a way to cope with all of your children's needs! I think Dr Chitty had some very wise advice indeed:)

marthamoo · 28/04/2006 19:29

Oh hon, I'm so sorry it wasn't more reassuring.

Whatever life is about to throw at you, you will muddle through the best you can - somehow. That's what we do.

beckybrastraps · 28/04/2006 19:32

I'm another one who's been following your story without posting before. So sorry that this doctor couldn't give you any reassurance about the new baby, but glad she helped with one of your dilemmas. And I will be praying for all of your family.

Blossomhill · 28/04/2006 19:32

Emkana - I have followed your posts and my heart and prayers go out to your family. Hugs xxx

Saggarmakersbottomknocker · 28/04/2006 19:36

Emkana - sorry that you didn't get any better news. Have thought about you today as I'd not seen an update.

How old are your girls? When my dd was small she spent weeks in hospital (and it wasn't within daily travelling distance). Initally, like Blu says, I looked at these other mums and thought 'how dreadful they aren't here all the time'. BUT over the weeks I understood Sad.

If your baby is really sick he or she will most likely be having one-to-one care anyway and as a very young baby they honestly don't care who delivers it. Yes, spend time with your baby, caring in the best way you can, talking and holding but don't beat yourself up about not being there 24/7.

My other children were 5 and 2 and if I had my time again I would have spent more time with them. I was unprepared and floundering but you won't be. Whilst you haven't enjoyed this pregnancy you do have the benefit of being able to get some idea of what will happen shortly after the birth. Are you seeing Dr Chitty again before delivery? Will she be speaking to the team about what this baby may or may not need when it's born?

emkana · 28/04/2006 19:38

No I won't see Dr. Chitty again.
I think it's now up to the paediatrician at the hospital to think about what care our baby may need.

My dd's are nearly five and nearly three.
Dd2 especially already seems to sense that there's something going wrong, and she is desperate to have me close at all times, and desperate for reassurance.

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MerlinsBeard · 28/04/2006 19:41

Emkana, i have been Angry and Sad and even [shocked] as i have followed (most of) your story. I just wanted to let you know that you are a lot stronger than you think you are. You have carried yourself through all of this uncertainty with such a dignity that i cannot even describe. You have never once (that i have seen) worried about yourself, always thinking of your other children and your DH.

When the time comes i am sure that ur instincts will tell you what you need to do

I just wanted to let you know that there was someone else thinking of you all xxx

Waswondering · 28/04/2006 19:41

This reply has been deleted

Message withdrawn at poster's request.

JanH · 28/04/2006 19:45

Oh, emkana - so sorry that things are still unresolved and that you are still in limbo but I'm glad you were able to see Dr Chitty and that she was so human.

I love what Blu said about the mother of the baby who was in at the same time as her DS, and about the notes (and from fa Smile).

Your baby will know it's you when you can be there, but when you can't everybody else will care for him or her as much as they can, and tiny babies have no concept of time, unlike their big sisters. You will muddle through if that's what turns out.

I don't do prayers but I can hope very hard. This has been such an awful scary time for you all, but maybe this time will be the worst that happens and when your baby arrives it will turn out that nothing is seriously wrong after all.
Big hopes for that outcome.

XXX

JanH · 28/04/2006 19:48

Oh - I just noticed you said "he" will be at the local hospital - all my hope and fingers crossed for him then Smile

threebob · 28/04/2006 19:48

Sing a special song to your little one (it can be anything soothing) and make it something well known, ask the staff to also sing it to your baby. The musical memory is very strong and your baby will have positive memories of the time in hospital.

I know that sounds a bit naff - but I've heard several stories from parents who did that and heard their "babies" several years later sing the song to comfort an upset child.

Saggarmakersbottomknocker · 28/04/2006 19:49

It's amazing what they pick up on isn't it? I have to say that it was my youngest that really took the brunt of our situation. The eldest was in school so his routine was less disrupted but ds2 was all over the place. I think it's important to keep things ticking over as normally as possible - fit in your hospital visits around them rather than the other way around. Will your dh be getting any time off work?

ScummyMummy · 28/04/2006 19:51

Really hoping and hoping things turn out well for you too. This pregnancy has just been so hard for you. It must be amazingly stressful. I wish things had been more certain for you today. I think you will and should do whatever feels right about dividing your time. Lots of love to you, emkana.

NotAnOtter · 28/04/2006 19:51

Please try to find some time to think about YOURSELF at this time Em...

Thinking of you and wishing you and your family all the best...I will say a little prayer to 'whoever' x

starlover · 28/04/2006 19:55

hi emkana... you've probably done all the googling there is to be done... but i just found \link{http://www.jeunesfamily.org/pages/kids.htm\this site} about Jeune's which is very uplifting!
If it is that, then there are some really positive stories on there.
I also visited another site where there was a Jeune's sufferer of 25!

JanH · 28/04/2006 20:01

That's a great site, starlover. Beautiful children Smile

pooka · 28/04/2006 20:02

Emkana - I haven't posted on your previous threads though like others you've been in my thoughts in the last few days.I'm sorry that you don't have the certainty that you wanted. AndI will be sending all my most positive thoughts your way.

Thomcat · 28/04/2006 20:18

Oh darling.......oh sweet, you poor things, such awful uncertantiy Sad So that's it as far as being able to know any more is it, you just have to keep calm, be strong and wait? Well we're all here to do the waiting with you.
I'll certainly pray that whatever happens that your your baby son or daughter will born healthy.
Thinking of you. Anything I can please, please just say. TC xx

hoxtonchick · 28/04/2006 20:22

oh emkana, i really don't know what to say, but am sending lots of love xxx

emkana · 28/04/2006 20:45

I've seen that site, starlover, but thanks for posting the link all the same.

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emkana · 28/04/2006 20:46

And thanks to all of you for your lovely, kind messages.

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Marina · 28/04/2006 20:48

I will certainly be praying for you and your baby emkana. So sorry the news from Dr Chitty was not more reassuring.
Lots of support for you on here as ever and wise and lovely words from FA and Blu.
XXX

kitty4paws · 28/04/2006 21:45

Just adding one more post to mix, sending you love and positive thoughts. You have been so strong through all of this, it is inspiring.