What not to say

[EyeoftheStorm]

I know it's hard when you haven't been in the same situation. Family and close friends can usually find the right words but if you don't know the person well, it's more difficult.

DS2 born at 30 weeks, had some complications and was in NICU for 2 months. These comments, from friends and acquaintances, were like little hooks that dug in my skin.

'Well, you look great. You've lost the baby weight.'
No shit - I didn't have time to put any on. If I still had a bump, my baby would be safe inside.

'At least the nurses will be getting him in a good sleep routine.' A variation of this was 'At least you'll be getting a good night's sleep.'
My reaction to both was .

But the worst is when I tell someone how early DS2 was and they say 'Oh, 30 weeks, that's not that bad/early.' Invariably, they go on to tell me about someone they know whose baby was much earlier and is absolutely fine/top of the class/sportsmad etc and that's brilliant, I am happy for that prem baby. It gives me hope.

But all prem babies are different. Some are born tiny and just feed, sleep and grow. Others are much bigger but get infections or have other medical complications. DS2 had a grade 3 brain bleed, hydrocephalus and ended up needing a VP shunt. He is fine now and we are hugely grateful but don't tell me that 30 weeks isn't that bad.

So what should you say? How about 'That must be/must have been a horrible experience. How is your baby now?' and then listen to the answer, whatever that might be.

[Dlamis]

The comments about baby losing baby weight, getting back into clothes etc didn't bother me too much.

Ds2 was a good weight and midwives reckoned he would've been 8-9lbs+ at 40 weeks. I stopped telling people that when i got "i bet you're glad he was early then" comment.!
Yes because having a prem in scbu is so much better than pushing out a big full termer!

The one comment that upset me most was "Ooo, you should still be pregnant now" said by someone i didn't know particularly well who was still pregnant with her dc due the same time as ds2 would've been

[kykaree]

One of our (very blokey male) friends gave me a beautiful care, it looked like child's picture of a house with a sun and everyone smiling saying "welcome to your new home"
and inside he had written "welcome to planet earth Joseph, its all yours"

I loved that card so much and I still think about it and it makes me smile.

So now for premmies I buy a welcome card like that!

[care4families]

As an opening statement I say. This is not what you expected. This hopefully covers everything from the unworn maternity clothes, the maternity leave never taken, the worry and anxiety and shock.

To the baby I say 'Welcome to the world', and I always give the parents a card with these words written on it. Families with a prem baby never get cards.

[kykaree]

My little boy was born at 27 weeks, and the things people said really really upset me.

I had severe post traumatic stress disorder (Joseph's premature birth dug other stuff up, so it was more complex than him just being born early)

I lost my sensitivity to others, and thought people were being deliberately cruel, when really, there were shocked and frightened for me, which came out in what they said.

Now 15 months on I feel a little embarrassed that I was so angry and upset and so difficult to deal with.

Now Joseph is grinning, crawling, eating the cat food and generally just being a funny little boy, I wonder what all the fuss was about!

Yes, he was very poorly and very tiny, I just wish I had been given a crystal ball so I knew I didn't have to worry quite so much, and be so tough on people, who were only trying to help.

[Ems83]

I think it is hard for our friends when they dont know what to say. The only thing that upset me was when they said 'Your so lucky to have had a c-section, no pain of natural childbirth' - oh how I wish I had experienced a more natural birth but my daughter was too small (2lbs 7oz) so it wasnt to be

[ZuzuandZara]

I don't think anyone will ever get all the comments right. I have prem twins and have got over all the comments such as 'at least you'll get a good nights sleep' while they were in SCBU.
I now get all the 'double trouble' 'you've got your hands full' type of comments!
Hildathebuilder, several years ago a friend of a friend had a terribly prem baby, at about 24 weeks (can't remember exactly). When I saw them a week or more after having their son and said congratulations, they said I was the first to congratulate them

I think the main thing to remember is most people really do mean well, try to and bare it!

[anonandlikeit]

Should add that ds2 is 7 now so its probabily a bit easier to look back on it all, also ds2 does have some disabilities but in a strange way it has made me mroe grateful becuase I know that it could of been so much worse.

[anonandlikeit]

ds2 was born at 28 wks & when he was in SCBU someone actually said, oh its like having a grandchild... you get to go visit but don't have to get up in the night, all I wanted was to bring him home, how I didn't thump her i'll never know.

I also had all the stories, everyone knew someone who had an earlier, smaller baby. I did actually find the stories sort of comforting especially when ds2 was v poorly & I needed something positive to cling to.

If its said in a "your making a fuss about nothing" sort of way though I can understand your anger.

I too regret not taking more photos, we were so scared & traumatised in those first days we never actually thought we would want to look back on those times.

I did welcome the congratulations as I wanted everyone to eb as excited as they were about ds1 (a healthy 8lb11oz).

[hildathebuilder]

My little one was born at 29+3 weighing 3lb.

I lost what little baby weight I had, and in a week was back in my size 10 jeans. Decided I had to see the positive but still cried when I put the maternity clothes away which had only had a little under a month's wear. Real friends could make comments about my weight, lack of bump because they meant well, and really didn't know what to say. Others it still got to me but tried hard to ignore it. They didn't know what to say. Mind you my little one's consultant kept telling me how awful I looked in those first few days. Then he told me I looked better every day, until he came home and at his first outpatients appointment back in hospital told me I looked awful due to lack of sleep again!

As for people saying at least you slept - yes I did and given the emotional hit of NICU glad I did. Although I did get up to pump but that was not really a big deal in the scheme of things, and however hard it was physically getting some sleep - even if pumping was invaluable. As was the time I spent getting to know my little one before he came home as I was less clueless than most of my first time mum friends when he did get home - and we did have some kind of routinen which helped enormously.

The thing I actually couldn't cope with being told was congratulations, especially not in the early days when it was not clear what the future held and the consultants were well we have to get through the next hout, hours, 24 hours, 72 hours etc. Congratulations was the last thing I wanted to hear.

I think that the odd comments will always be with you, and difficult to forget. However although for me it is too soon to look at the photos, diary, and other memories (including the comments made) from the birth of my son, and the NICU and SCBU days I am glad they are there, and that I can revisit them (however hard it was - or seemingly insensitive the comments were) on the bad days to come, as it reminds me how far we've come. I will also enjoy embarassing the little one in 20 plus years time by digging out the photos and tiny cardies!

I don't think many people do really understand the rollercoaster of NICU, SCBU etc. Why should they. They haven't been there.

[monkeyfacegrace]

Sorry, fell asleep last night!

In answer to your question, because you have had 10 months to come to terms with things, whereas before, you would have been on autopilot.

My ds had to have a lumbar puncture (ok so not the end of the world, but still traumatic for me), and at the time I was just like 'yeah ok get on with it', whereas when he had his MMR I cried and cried like a loony!

You are just being a mummy with regards to his teeth. Anyway, the first teeth are just practice ones. And if he has probs with his adult teeth, he can get a cracking set like Simon Cowell

[EyeoftheStorm]

It just comes up to bite me on the bum sometimes. We've been on top of the world since a good report from doc. Then his teeth have just appeared and it looks like the enamel is damaged.

I haven't really cried at all through the whole experience. Even when he needed the shunt I was dry eyed. But I could have wept over his teeth. Why? Of all the things to cry over, why his teeth?

[monkeyfacegrace]

Honestly, it will get better, and now the only regret I have is not taking more photos of him being a diddy 4lb in his little incubator all wrapped up in a billy blanket!

Awww premmies are fab, but Im biased of course

If you need to talk about the whole situation, fire away. I had enormous guilt and depression following my experience, and only a good old offload made it better.

My scbu nurses said they had even had mums suffering from PTS due to it all.

So, is your monster anywhere near walking yet?

[EyeoftheStorm]

Ach no, blow his trumpet all you like. You've been there and are talking from experience. I hope a year down the track I have your perspective.

I think I just felt shut down by these comments at a time when I just wanted to get a few things off my chest.

[monkeyfacegrace]

I think thats a problem with you Eye
You have more important things to worry about!
My son is now 18 months corrected, and I couldnt be less bothered about his shaky start. (And he is the best in his nursery class-but Im not allowed to say how well he is doing, am I?)

[EyeoftheStorm]

You are absolutely right - being negative isn't helpful at all. I think I've coped brilliantly through it all, it's just a few comments that have stuck to me like burrs and I can't shake them off.

[monkeyfacegrace]

Mmmm Im a little
My son was 32+6 so Ive been there.
You are being over sensitive and hard on your friends.
'You look great' etc. My thoughts, yep I do, dont I. I didnt have to fight stretchmarks and sqeeze out a heffer of a baby. Lucky me.

The sleeping comments. Yep, Im lucky again arn't I. My son is alive and in the best place, my dd gets a gradual introduction to her new brother, and I do get a rest between giving birth and sleepless nights.

Please stop trying to find a negative in everything. Your friends are doing their best in nervous circumstances.

Glad all our babies are ok though, and thats all that matters.

[EyeoftheStorm]

Good to know it's not just me. DS2 is 10 months (8 months adjusted) and I am starting to feel as if we are on the other side of the black hole that is the NICU. It helps that DS2 has had good reports - he is on the low end of normal developmentally - hooray! - and we can see him progressing week by week.

He was 4 pounds at birth so - yes I know - big for a prem baby and has always fed well.

Hope your little one ok. It's the not knowing what is in store for them, that's the worst, isn't it?

[mrspear]

Oh and another thing people say is "well at least your getting a full night sleep" err no i am still getting up to pump. And rest try getting on 2 trains to spend 7 - 8 hours in a hospital on the other side of london 4 days after birth

[mrspear]

At last someone who understands! Our DS was born at 30 weeks. Even the doctor (GP) said that it was not that early. FFS he nearly died! And breathe!

He has had an MRI in March (grade 3/4 bleeds on both left and right sides) and thankfully the consultant said that "there is no sign of perm damage"

How is your little one now? Can i ask how old he / she is now? Also how is weight gain / development?

Sorry for the Q's ....

Oh and how is mummy now?