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Original poster

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.

OP posts:
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oops · 30/04/2006 22:22

I don't have personal experience of hospitals and babies, but am sending you a little bit of strentgh and a hug, i do hope it all turns out well for you.
xxx

Original poster
emkana · 30/04/2006 22:23

Thank you chicagomum.

blu, that's quite comforting to read. I must admit that in my darkest moments I have thought "Why did I get pregnant at all/at this particular time, all this wouldn't have happened if only..."

Sad
OP posts:
Pixiefish · 30/04/2006 22:33

sending hugs and prayers xx

geekgrrl · 01/05/2006 07:21

also, the other thing to remember is that just because other parents/families stay with their baby 24/7 it does not make a you a bad or unloving mother if you're not there all the time.
I was surprised by how many parents stayed with their babies all the time in the ICU (where every single child was fully sedated and on a ventilator all the time, anyway) and felt really guilty. I thought everybody must judge us or something (probably paranoia caused by the stress!).

eidsvold · 01/05/2006 07:50

geekgrrl is right - even though I spent a lot of time at dd1's bedside - it was made possible because we had no other children to care for...even then I took time out - went for lunch/breakfast/dinner - shopping on the kings road ( hospital was a block from Kings road) that time out helped with my sanity. Sometimes I just went up to the parent room to have a break/sleep. I was the exception though - lot of parents who had other children to care for were not there as often as I was.

Saggarmakersbottomknocker · 01/05/2006 08:16

When your baby is born emkana and if he has to spend time in hospital, you'll find a way to work it out. They'll be times when you need to stay - when the staff are telling you to go get some rest, but you need to stay all the same. There'll be times to when the need to go is great too and no-one will judge you for doing that. Just like if you were at home you'd divide your time between the baby and your girls. It's just more acute.

As far as statistics are concerned there are loads of children out there who've beaten the odds. In my dd's condition 80-90% don't make their first birthday; mines 13 this year. And as the doctors say the statistics aren't always sound if there are few births. Also they are historical - not taking into account all the new medical advances.

I also have a friend whose child was in hospital for most of his first year and could put you in touch if you'd like.

Thinking of you all the time.

bundle · 03/05/2006 12:12

emkana, how are you today? I'm really sorry that you're going through this and there's been no reassurance from the doctors.

On Monday I saw a lovely friend of ours whose baby son died last summer, he had a very serious heart defect which wasn't diagnosed before birth. He was at home for a week and then spent the rest of his short life in hospital, including a major operation. If he had survived he would have needed a number of other ops and a heart/lung transplant in his teens.

She's just had another little boy (and has a 5 yr old daughter) and she was talking to me about what life might have been like with a seriously ill child. In a way I think she was grateful for the time she spent at home with her first little boy, if he'd been diagnosed during her pregnancy those precious first days would have been spent in hospital...but maybe he would have stood a better chance..who knows? She would never have had this little boy if her first son had survived, life would have been very different. I know when their baby was in hospital they did spend a lot of time with him, she has quite a big extended family & they looked after her dd a lot and they knew he was very sick. I hope that you can gain the strength to get through all of this from your family and friends, xxxxxxxx

Original poster
emkana · 03/05/2006 20:26

bundle, thanks for asking, I had a bit of a rubbish day really, feeling very tired and a bit emotional at times. It didn't help that I saw several people I hadn't seen for a while and had to go over the whole sorry tale again and again to update them
Sick, sick, sick of talking about it. Sad

Also dd2 is doing my head in, so things could be better.

OP posts:
foundintranslation · 03/05/2006 20:30

em - just wanted to say I haven't managed to get in touch with my friend yet - hope I will tomorrow.
Sorry you had a difficult day.

dinosaure · 03/05/2006 20:35

Hi emkana, I'm so very sad for you, and will certainly pray for you and your little one, DS1 had a short stay in SCBU after a near miss at birth, and I agree with everyone on here who says how marvellous the SCBU nurses are.

Hugs.

morningpaper · 03/05/2006 20:39

Many prayers and much love coming your way from me too xxx

chapsmum · 03/05/2006 20:46

emkana, I admire you so much for your strength of character and ability to deal withsuch a heavy burden and carry on with life at the same time.
You and your family are in our thoughts and prayers

xxxxxxxxxx

Original poster
emkana · 04/05/2006 20:03

after two weeks the consultant replied to my e/mail today

didn't answer any of my questions though, just expressed his admiration for Dr. Chitty and wished me well

e/mailed him back with another question

OP posts:
geekgrrl · 04/05/2006 20:15

hm, sounds a bit useless, eh? :( I guess he probably doesn't come across this problem often - not very helpful for you though. :(
Thinking of you here...

dinosaure · 05/05/2006 15:57

emkana, I am rather feebly just logging back on to this thread to send you my continued good wishes and just to let you know that I am thinking of you.

xx

hub2dee · 06/05/2006 21:14

Hi. I might be wrong, but I imagine the stress of the unknown, the 'worst case scenario' movies that perhaps loop through your mind, and the anxiety about the impact on your other children will be worse than dealing with the concrete reality of welcoming your son into your family.

Glad you got to see such a respected specialist in this area, much better than wondering if there's anyone out there who could offer more expert advice etc.

Take care, and I hope your last few weeks of belly rubbing aren't too tiring !

TambaTheDragonSlayer · 06/05/2006 21:19

Thinking of you and your family xxxxxxxx

stapo1 · 06/05/2006 22:34

Hi Emkana
I have been reading your message & really feel for you.
When DS2 was born we were told he would need to spend months in hospital. DS1 was 3 at the time & the hospital is almost an hour away.
At the time I felt like the worst mother in the world but when I was dischsrged after 3 days (c section) I chose to go home & divide my time rather than into parent accommodation at the hospital.
We managed by trying to keep DS1 routine as near normal as possible. I would be there in the morning, get him up & off to nursery or family or friends & then I would get to hospital before consultants ward rounds. I would spend all day at hospital try & do as much of the care for ds2 & try & make it home to bath ds1 & put him to bed.
Every few days dh would bring ds1 to the hopital & we would all spend time together.
We did use parent room when DS was going through the most difficult period.
the drive there & back was awful, very lonely & often tearful but looking back that gave me time to think & cry & it meant I did less of that at home.
DS1 did not seem upset at all, infact he loved all the attention he got from the rest of the family. DS2 was given the best care in the world by the wonderful staff in SCBU ( can never thank them enough) & never minded how often we phoned & would phone us if needed.
DS3 is 3 now & our bond is not any less for not being there with him all of the time. The only thing I wish I had done more of is all the normal things like taking photos & videos. we really have very little of his first months to look back on, unlike DS1.
and remember to take care of yourself as well!
I really do hope all turns out well for you, keeping everything crossed & thinking of you!

Original poster
emkana · 06/05/2006 22:43

stapo1 - thank you for posting, it is incredibly helpful to read the experiences of somebody who has been through similar.

I am "lucky" in the sense that our hospital is only 10 minutes away, so it would be quite easy to take dd1 to school and then go down there for some time.

My main worry is dd2 who is very, very attached to me and who I have just taken out of playgroup because she wouldn't settle. If things turn out the way I fear I will have to think seriously about trying again with childcare, but at least my MIL is around as well to look after her. We will have to work something out.

OP posts:
beetle73 · 06/05/2006 22:51

FIngers really tightly crossed for you and your family Emkana. I'm sure you'll do all the right things whatever happens.

stapo1 · 06/05/2006 22:59

Sorry Emkana
What I should of said but I ended up waffling was that whilst it felt wrong at the time I do think spending time at home was the right thing to do.
Also on the days when we took ds1 in to teh hospital the staff were fantastic with him & other parents. Staff would bring sweets in for him & take him with then to do jobs like the laundry & clean out the fridge. It stopped him getting bored & gave us time with ds2.
So if you have to have dd2 with you I am sure they will understand. IME they really do look after the whole family!

geekgrrl · 07/05/2006 08:01

emkana, in the ward my dd2 was in is a play room which staffed during the day and where you could leave siblings. This and the accomodation was only available to families of children with heart problems though(children's cardiac services seem to be able to attract good charity funding I guess), but there might be something like this at your hospital?
Our hospital is an hour away but my PIL live near it so we used to leave dd1 with them a lot and she continued going to nursery.
I don't think the daytime juggling bothered her, it was more the obviously stressful atmosphere. Even when dd2 came home she still had a lot of problems - the poor thing had had two serious complications as a direct result of the surgery and was still in a bit of a state still when we finally got her back - needing oxygen via a cannula for instance, and being as limp as a noodle - it was all just a b*tch of a time really and dd1 fell a bit by the wayside. :( We did make up for it though - as soon as dd2 was declared well enough and off the oxygen we went on holiday for 4 weeks, to put it behind us and move on.

Saggarmakersbottomknocker · 07/05/2006 09:35

Been thinking of you emkana. Some really good advice here. The photos are really important - I treasure the ones we took of dd - it was a massive part of her life. stapo's car journeys sound much like my own Sad

I think there is only so much planning you can do for now. If he is there for a while you'll fall into a routine much the same as you would if you were home. Do what you feel is right at the time, for your family. There's no right or wrong way. And when you're in the middle of it, you'll be surprised at the number of families around you who are having a similar experience. They'll be a huge source of support to you.

Take care

kitty4paws · 08/05/2006 13:12

I think of you often Emkana, these last few weeks must be very, very hard, the "not knowing" of it all.

On the subject of photos mentioned in a couple of the posts.

My husband is a photographer and we are trying to help out at our local hospital by taking photos of the babies in special care. It’s at the early stages, just "feeling the water”. It’s something we want to do for no charge, just so the parents can have photos just like everyone else.

At the moment we are unsure on the practicalities and regards infection, time, space etc but if you would like some photographs taken we would be honoured, really honoured to be able to help. It would need to be something that you suggest to the hosp , we could not ask on your behalf IYKWIM.

We are in Hereford so we are quite close to you.

My husband specialises in natural children's photography, maybe a montage showing you, DH, your dds and the new baby?. It a lovely way for you all to be in the same photo but not necessarily all in the same room at the same time IYSWIM ?

\link{http://www.foto-tots.co.uk\have a look here}

Its such a silly thing to offer, but I just wanted to "put it out there" ,I know this is the LAST thing on your mind at the moment, I feel daft for even suggesting it, feel free to ignore this, you have enough on your mind at the moment.

I wish you all the luck in the world.

stapo1 · 19/05/2006 21:12

Hi Emkana

Was just wondering how things are? Hope you don't mind me asking, just thinkg of you.