No peace of mind for emkana

[emkana]

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.

am adding you and baby to my prayers, and hope all the best for you.

I am so sorry Lyn Chitty wasn't able to offer you any better news. I will keep my fingers very tightly crossed indeed.

FWIW I think you should go with whatever feels right to YOU when the baby is born. But that's easy for me to say, of course.

Thinking of you, dh and the dds.

Emkana, have been watching your story but not posted. Sorry you're having to go through all this uncertainty. My ds3 was prem and spent just 2 weeks in hospital. I managed in that time by going in for 2 feeds, the 11 o'clock and the 3 o'clock and then coming home to the others. Mostly, when I was there, I just sat by his incubator/cot while he slept so don't know how productive it was but it did give me a chance to observe what was going on and read his charts etc. Another thing on a practical note: If you're planning on breastfeeding it might be a good plan to buy a good breastpump or arrange to rent one because it can be difficult to arrange all these things if you have a baby in hospital. Ds3 came suddenly so I managed with a manual pump which I sent dh out to buy. It worked a treat but at the expense of the muscles in my hands!

Emkana - thinking of you all in my prayers.
Stay strong.

oh emkana, I'm sorry that you can't breathe a sigh of relief after today. :(
My dd2 was in hospital for 6 weeks as a baby and before that she was v. poorly for 7 weeks so we were at appointments several times a week. We were lucky in that we got accomodation in a parent wing, which really helped.

Dd was heavily sedated most of the time so one of us being there really didn't help all that much. We'd take turns being at the hospital (luckily dh had decided to quit his job when dd was born so we was completely free), but would only pop in and out of the ward, really.

Our dd1 was nearly 2 at the time and it was difficult for her - she'd run to the car looking inside it for dd2 almost every day, and as things were medically quite unstable with dd2 for several weeks she really didn't get the attention she normally did - we were just too occupied with worrying.
Dd2 was tube fed EBM for those 6 weeks (went back to the breast just fine afterwards) so feeding times didn't come into it really.

Nevertheless - we got through it, dd1 got through it much much quicker than us and is now a perfectly happy and well-adjusted 6 year old. Dd2 also got through it all just fine too - she's had over 10 other minor surgeries since (unrelated) and never once gets upset at going into hospital for those - on the contrary, she seems to love it - the playrooms, the nice nurses etc.

There are few things I'd change if I had to do it all again; I had post-traumatic stress problems for a long time afterwards and we had no psychological support in hospital - I really should have had counselling during and after that time to make sure this didn't happen.
Also, we probably shouldn't have spent so much time at the hospital - we'd only be home together one day a week, for dd1's sake we should have been home together a bit more.
I hope some of this useful.

Emkana - so sorry this is so protracted and so uncertain. Db has 3 dd's, two of whom have cystic fibrosis (and some other complications); they are in and out of hospital for up to 2 weeks at a time (and never at the same time). It works but with a lot of support from family and dsil has given up work. It's really tough but you will cope and so will your children; dn1 (no probs) thinks her life is normal, never queries why she doesn't spend time in hospital etc (she will be 4 soon).

We will pray for you.

Thank you all again.

It's really helpful to read others' experiences about having babies in hospital, so I'll probably keep bumping this or maybe start a new thread.

emkana - so sorry that Dr. Chitty didn't have better news for you.

DS was in hospital for a short period when he was a few weeks old. I would confirm that the nursing staff are absolutely fantastic - I had far better support from them practically and in terms of breastfeeding support than I ever had from midwives. As I was doing most of his feeds (by breast or bottle) the issue never really arose of me not being there with him.

I have been reading your threads and just want to say all my thoughts are with you and my fingers are all crossed x x x

emkana just wanted to let you know I am sorry you did not have better news from Dr Chitty.

Also wanted to share my experience of having a little one in hospital and others that were with them. In total dd1 spent about 6 weeks in hospital - 2 three week blocks.

When she was born she was in ICU/SCBU for three weeks. I went in first thing in the morning and then went home about noon to rest and take it easy ( had a c-section) and then went up when dh got home from work for a few hours. Then we would always call before we went to bed. The ICU/SCBU nurses were amazing and they do really take fab care of the little ones. There was a little boy who had been born very premmie and his mum had other children to care for as well as a nightmare journey via public transport to get to the hospital. The nurses cared for that little lad so well.... almost like he was theirs.

Something my MIL gave me for dd1 - kaloo bear - bear with a hanky size piece of fabric attached... the idea is you sleep with it and then give it to the babe so they can 'smell' you. I did that with that bear and the others dd1 had in her humidicrib..... that way I felt even when I wasn't there, I was.

Again when dd1 went in for cardiac surgery - I was able to be there for the whole time but dh had to keep commuting up to London taking the odd day off now and then..... However I did not have any other children at home. There were a couple of children who had been in the hospital - LONG term - seriously Long term and again their parents had others at home to care for. They would visit when they could.... there were lots of ways they made their presence felt - signs as someone else said, making notes about the children, photos, toys, dressing them in their own clothes.... this obviously helped the parents feel like they were there when they couldn't be there. Again these children were attended to by nursing staff who did give them that extra attention that really my dd1 did not need as I was there..... they really were amazing nurses.

Am thinking of you and your family.

emkana .. I'm so sorry you can't get a definitive answer .. still thinking of you

Just sorted out clothes for the baby to wear

So hard not to get drawn into thoughts of "I wonder if he'll ever get a chance to wear these"

just bumping again for more opinions/experiences

No real experience as DD1 was only in for a day as a prem baby.

But I do think that your older children need you to be their mummy at that time, though it must be so difficult for the whole family.

Sending you best wishes and good luck.x

So sorry to hear the hospital appointment couldn't provide more reassurance. I hope it will all be better than your fears.

I've not really got experience of this other than when my dd was in hospital at 13wks with menengitis. It was frightening for ds, I think probably because it was very sudden, and his behaviour went downhill for a while after we came out, almost as though he was punishing me for leaving him.

As already said here, the nurses on neonatal units/children's wards are very good. They do care and if they know you can't be there all the time I'm sure they will see to all the baby's needs. Tbh, when babies are very young and in hospital there is not much you can do anyway. They are asleep a lot. As long as they are fed, comfortable and getting contact with somebody that's all that matters.

You need to prepare your girls as much as possible and let them know that you will be needing to spend time at the hospital but I think as much as possible, you should try to stick to their normals routines, making sure they get to school on time etc, and then going in to see the baby whlst they are at school.

Hope you are feeling ok today x

EK I haven't posted before but like others I have read what has been going on. All I can sa as a mum to a terribly prem baby who spent 14 weeks in hospital, I can only echo what Blu wrote.

I didn't have other children to worry about, but I also know I couldn't have hung over DDs cot day and night, I had to distance myself, I look back and realsied it was my way of coping - complete denial in a way! However reading Blu's post brought a lump to my throat, I felt like that to start with I was so afraid she wouldn't live I didn't want to bond :( then when I knew she would live I still found it hard because she wasn't mine IYKWIM Anyone could have given her the care and attention she needed, it didn't have to be me. So I let others do it, and waited until she came home. I remember her first night at home, I was terrifed there was no dr or nurse to tell me what to do, she was finally all mine (and dh's)

I don't know what will happen in yor case, however I do know your other children need you too, Dr Chitty is right, they need you in a way more than the baby will.

Thinking of you emkana, and sending love and prayers for you and your family xxx

emkana - both times dd1 was in hospital - WHen she could - she wore her own clothes. The nurses knew she had a stash under her humidcrib and they used her nappies,clothes and things that we had brought in for her.

Just seen this, em.
If you like, I'll ask a friend of mine whose ds was in hospital for the first 3 months of his life and whose dd was then 2 1/2 years old if she'd mind you getting in contact.
As always, thinking of you. xxx

For the baby we knew, the nurses really did become an extended family. I remember listening to them one night, spending thier time sitting with the baby instead of in the nurses station, talking softly to him, and laughing and celebrating when he kicked his legs - calling him Renaldo all the time, and I didn't know why - I was so pre-occupied with DS that I was oblivious to the world cup!

I didn't see nurses with any time to spend extra time with routine cases and older children - but they certainly understood the need to take on a share of the love for that baby with his Mum.

And Emkana - this is still all a v big worst case scenario 'if' isn't it?

Thank you FIT, maybe you could e/mail me the details if your friend would be happy to be contacted?

Blu - it's so difficult to say. The doctors are sort of agreeing that Jeune's is the most likely diagnosis. According to what I can find, 70 % of babies born with Jeune's die in babyhood, the surviving ones often have severe breathing difficulties.

BUT there are cases where children live relatively normal lives.

And, as the German doctor pointed out, you have to be careful with percentages really because there are so few children with this condition, so is it statistically sound to say 70 % die?

Questions, questions...
it is the worst case scenario, but not an unlikely one, IYSWIM

Emkana - I have thought a lot about mentioning this, and still don't know if it is right to do so....BUT...Frogs once posted a truly inspirational post about a relative (I think) of hers who had a baby who died in babyhood, and how even the six weeks they had their baby gave them love and satisfaction of caring for him / her, and how they were so glad s/he had been born, rather than any alternative.

I understand what you are saying about the 'not-unlikely-ness' of the possibility, and the awful impossibility of statistics.

In any case statistics mean nothing if you are the one who makes up the minority - statistics are about great big overviews, not about struggling individual people, like you, your dh and your little baby.

I keep seeing your threads and each time I hope it is positive (or at the very least definative) news. So sorry what should be a happy time is being "spoilt" by all this stress and uncertainty. Although I know it is of no help at all I am thinking and praying for you.