Premature baby support thread

[loachy]

There are lots of us now who have had premature babies and the stress can be so hard. I found support from other mums in my unit really helpful so I thought we could help support each other here.

There are a few of you at the same stage and a few of us who are out the other side, so it may help to share knowledge etc.

If you dont think this thread is helpful I will delete it.

[Hols]

I think it's a good idea as things are quite different with Prem babies even after they are home.

[minxie]

This is a brilliant idea Ann. Thank you for suggesting it... This certainly isn't an easy time and any support is really appreciated - especially from someone who has been through it all and come out the other side!

I don't know what I would do without these forums... think I'd be a gibbering wreck!

Michelle
x

[ShiningStar1980]

I think this a great idea. Thanks.
Ive been ordered to spend the day at home and try to relax (not actually sure how to do that yet) as im not coping very well and break down everytime i go to the hospital. Its not going to help Harris and it certainly isnt helping me
Im hoping its just a touch of the baby blues and it will pass quickly.
Harris is doing really well so far - up to 7.5mls milk and off antibiotics now so i should be happy he is being such a strong wee man for me, but im not happy at all.
I hope everyone else is doing well.
x

[michelle79]

Hi
This IS an excellent idea and I'm sure that the support on here will be invaluable over the next few weeks/months as it has been for the last couple of years along the journey.
Michelle x

[Hols]

Shining star- It is difficult I remember having to put on a happy face everytime I walked into the unit, I almost felt like I was wearing a mask IYKWIM. I hated people asking if I was alright as I would just breakdown and cry. It does get easier though as your hormones calm down and you will see Harris improving everytime you go in. I remember walking in one afternoon and finding Sophie's incubator gone and I panicked until I realised that the baby that was all dressed and wrapped in blankets in one of the plastic cots was Sophie. I had to check the cot card twice cos she looked so different with clothes on.

It's brilliant that he isn't on antib's anymore and taking so much milk is fantastic.

Minxie- How are the twins doing?

Michelle- Hope you have got over the shock (as much as possible I know it's awful). How are you and the twins doing?

Loachy- How are Joshua and Katie doing? Have you started weaning them yet? I have just started Sophie and it's a long slow process, nothing like it was with Lucy.

[loachy]

i found it very hard at the start, thinking omg what a rough start to life. But children are so resilient to it all.

I found I read books or watched films to relax. At the start I would go up to the hospital in the afternoon having spent the morning pottering.

It will get easier it vecomes routine. Harris is strong he will get stronger every day and change. Enjoy every minute with him and think to yourself that you have been given chance to rest after being pregnant and to get ready for him to come home.

Yes the twins have been weaned from 6 months and are a whopping 15lb 5 and 13lb 8. Now into 3-6months clothes.

[minxie]

Shiningstar - I went through the same at first. I cried because I felt so helpless and just wanted to scoop my babies up and take them home. I came close to fainting one day too when the docs were telling us about the hole in Emilie's heart - they had to rush to get me a chair and a drink of water. Are you going in twice a day? Sounds like Harris is coming on great! He's been really quick at coming off his antibiotics! I hope it gets easier for you... I know it's not nice

Hols - I know what you mean about hating people asking how you are. I'm fine when I'm concentrating on the twins and their progress, but the minute someone asks how I am I crumble.

The twins seem to be coming on well. Arran doing much better - he's off his cpap hopefully for good now - he was off on monday and when I had him out for skin to skin cuddles he put his whole thumb in his mouth and gave it a good suck - midwife suggested putting him to my breast and he took it first time! The most amazing feeling of my life! I thought that was it and went home on a complete high, but on Tuesday morning he had to go back on cpap as he was getting tired. I cried my heart out on the way home - DH had to stop the car and give me a cuddle because I was so bad such an emotional rollercoaster!
Emilie on the other hand has never been off cpap since she was born... we actually haven't seen her face yet because of the tubes and mask I try not to dwel on that too much because it really upsets me, but her pressure is being decreased a little every day and hopefully she can be cycled on and off soon. Her lung infection really set her back a couple of weeks ago, or it might have happened sooner. She still has the duct in her heart that isn't closing - but if she can get off cpap and breath for herself then it won't be an issue, otherwise she'll need to be transferred to a different hospital for surgery... we're praying it won't come to that - I don't think I could handle it!

sorry - didn't mean to write a novel
Michelle
x

[ShiningStar1980]

Its helping to hear that your babies that are thru the other end are doing so well. I called the pram centre this morn just to let them know that i might need it a couple weeks early (hoping and praying) and i was on the phone for ages talking to the lady. It turns out she has a nephew in the same hospital who was born just over 2lb and he is now over 5lb. Its so nice to hear great stories like that.
I know what you all mean about breaking down when people ask how you are. I feel so sorry for all my friends and family as i just crumble and cant control it. In saying that tho, ive only cried a few times today - once while watching american idol (not sure why).
Michelle, I was trying to get in to the hospital 3 times a day and if not 3 then def twice. We are only 10mins drive away so its easy to get in and out by car but it does knack me out a bit.
Im on my own today as DH had to go out to get his car MOTd and as i cant drive im stuck here until my sis arrives at 4pm after school and can drive me in. I dont think the feeling of being stranded helps much. Im so used to just jumping in the car that its strange not doing that. Hopefully in a week or so i will feel comfy enough to drive. Im dreading next week as DH goes back to work and all my family live miles away.
Heather xx

[secondtimelucky]

Hi ladies
I have been following your stories before and after your babies' births and am amazed that so many of these babies came early. I had my son at 27 weeks and he weighed just under 2lb. He is 5 next week and is doing amazingly well. He was in hospital for 10 weeks and came home on oxygen. He truly is fine now. He is at school and can read and write as well as his classmates and in some circumstances better! He is a picture of health, after a tough first year he has cruised through the usual childhood illnesses with ease.

I remember very clearly how hard the journey was and your talk of CPAP, PDAs and kangaroo care really brings it all back!

If anyone wants to chat or any advice please let me know. I have come out the other side!

I am still trying to decide if I am brave enough to have another attempt at getting pregnant as with PCOS its such an ordeal to get pregnant and then I'd have the worry of another very early baby!

With love
Lou

[ShiningStar1980]

Im just back from the hospital and it was not a good night.
First of all when we were walking along the corridor a baby was getting carried out of the same room as Harris by paramedics. I just started running to the room to see if it was Harris but it was another poor wee baby.
Then Harris had a very large vomit when we were there and started shaking and went really pale. After a few mins when his airways got cleared he seemed to recover and the colour came back to him. After that the consultant came in, checked him over and then told me that there was a small shadow on his latest brain scan. He said it could just be an artifact as it was only on 1 part of the scan but now im worried that he has a brain abnormality.
Tonights left me a wreck. Ive been sick and DH is trying to make me eat but i cant face it.
Has anyone else had problems on brain scans?

[secondtimelucky]

Sorry Harris is having a bad night, I found I would often be just relaxing and then my son would give me an awful fright but as he got bigger and older this happened less often.

My son had various head scans and had a grade II bleed (I think they grade them I-IV). We were told we wouldn't know if this had affected him until he was older. Every prem baby I met had bleeds on their brain scans, they were all scanned regularly until we left the hospital and as the children have grown they are all doing fine.

Hopefully Harris will have a better day tomorrow and you will feel better. I am thinking of you.
X

[loachy]

Katie had a larger fluid area than normal on one brain scan and clear on the next, luckily no bleeds.

She also desated lots and once went blue whilst I was holding her.

[Hols]

Sophie didn't have any bleeds either but she was a 33 weeker so that might be why I don't know.

SS- Sorry you had such a shitty night that must have been so scary for you. I'm sure tomorrow will be a better day. ((((((hugs)))))

[minxie]

SS - sorry you've had such a bad night I just mentioned to DH about that baby being taken away - he said he couldn't get in to see Emilie for a while because there were loads of staff crowded round the incubator in the middle just as you go in the door - he heard mention of the Pediatric ICU... that's really shaken me up too! I don't like hearing things like that! God, you must have been frantic until you realised it wasn't Harris.

I'm sure your wee lad will be fine - have they said when they're going to give him another head scan?

Poor wee Emilie is having another eye test tomorrow morning - she wasn't happy about it last time and had a major desat - they had to end up putting her back on oxygen.

Mx