child development clinic long - WWYD

[hildathebuilder]

My DS is 6 months today (15 weeks corrected). Yesterday we went to the child development clinic, and at the moment I am tempted never to go back.

Looking at DS corrected age I had been happy tht he was developing fine, always making progress, and that some things came sooner than others. I don't expect him to be like a 6 month old baby, but sometimes he is (if little!), and sometimes he is like a 3 ish month or younger baby. He's not very interested in plastic toys, and rarely if ever reaches for them, but he will reach for food, leaves and grass. I think its chinese tat he doesn't like and it never bothered me. He can do things when he's ready.

I have also spent the last 2-3 months slowly getting used to the idea I treat him like a "normal" 3 month old baby, go to groups etc and try not to wrap him or me in cotton wool. In fact the sooner I can stop thinking of him as my premature son, the better. As far as I knew there were no long term health effects from him being prem, he's a bit wheezy, and a bit refluxy but he should grow out of those in time.

DS has smiled from 2 weeks corrected, but it really took off at 9-10 weeks corrected when he became a social smiler, giggler etc. He makes a lot of different communciation noises, and has always been a "talkative baby" He also looks about a lot, always has. He rolled at 7 weeks corrected and rolled the other way at 8 weeks corrected. He doesn't do it much but again I think its mainly because he can't be bothered and doesn't see the point!

Anyway we went to a cdc appointment yesterday, and they spent all the time concentrating on what he can't do (which seemed in the main to be drawing his hands together- which he does but not often, and putting things in his mouth, which again he does, actually quite a lot but not at the clinic!) I left feeling like they were concentrating on problems which may not exist, and telling me that i was not putting him down to play "properly" as I should be laying him on his side, in a rolled up mattress v shaped pillow etc. In fact it reminded me of all the time he was in NICU and SCBU when I felt that the medical staff were telling me how to be his mum, and not listening to what I had to say about him. (I had a bad experience when I had to tell them he wasn't ready to be discharged. 2 days later DS was back on his hot cot as he just couldn't maintain his temperature, since then I have been fairly striedent about thinking that the doctors aren't always right, and sometimes they should listen more and talk less ! he eventully came home 3 weeks after they first wanted him too.

Anyway if he's supposed to catch up by 2 then he's still got plenty of time yet. Also I didn't feel that they took into account DS temprement (another example he stopped paying attention to a toy because a woman walked in and he wanted to look at her instead)

I am really confused about this. I may be being a bit PFB, and in some ways if the doctors have suggestions which will help DS then fine, but on the other hand if going to clinic just makes me feel they are putting DS back in the premature baby box, and only looking for what a 3 month ish baby can do, and suggesting I am doing things wrong to such an extent I spent the evening in tears I really do wonder what the point is. I don't mind if DS is slow to catch up, I just want him to be healthy and happy, and I would quite like to be that way too.

I am very tempted to tell them to get stuffed, and not to go again, but I don't want to do that if I ought to be going as they may hel. Even if it seemed they were just hinderng. DH thinks we should complain, and got the impression that they were worried about soemthing they weren't telling us. I asked if they were worried about DS and they said no but perhaps unconvincingly. By that stage we were both so shell shocked anyway I am not sure we believed the doctors.

WWYD in these circumstances, should I complain, should we go back, or just tell them to get stuffed.

Also it all seems a bit arbitrary. A friend of mine had a baby at 30+4 (rather than 29+3) weighing a whole ounce more than DS and she hasn't had a cdc and is at the same hosiptal. Is that cock up or are the doctors worried about soemthing they are not telling us.

[turningvioletviolet]

i've had 3 prems - 2 x 31 weekers and 1 x 27 weeker, born at 2 different hospitals. all 3 of them had cdc follow ups - the 31 weekers for a lesser amount of time than the 27 weeker. so from that point of view i would imagine that your friend has been overlooked by your hospital rather than anything else - although of course it might be that the hospital has some sort of cut off point (eg 30 weeks) whereby it doesn't follow up babies, although i would have thought that unlikely.

re: the assessment, i suppose that the things a baby can't do are the possible indicators for problems so that's why they concentrate on that rather than on what they can do iyswim. i know it's hard, you really don't want there to be any problems - i've been there 3 times (and been incredibly lucky 3 times) but it's best if anything is spotted early. not going again is really just cutting off your nose to spite your face, although tbh, i don't think there's an awful lot they could do if you chose not to.

that first prem baby, it is all so intense - by my 3rd, who was the 27 weeker, and the most problematic, i think i was much less stressed by the whole post NICU experience (not by any stretch of the imagination wishing that you have to go through the stress that is having 3 prem babies!)

[hildathebuilder]

thanks, I can't imagine having 3 prems. At the moment having one is perhaps enough to put me off ever having another child. You must be far stronger than I am.

I actually spoke to my neighbour who had very prem babies 5 years ago. She told me that everyone she knew from 5 years ago and subsequently had been upset and distraught at the way our local CDC treats parents, especially the physios. I also spent the day watching my DS do all the things the physios said he couldn't do, perhaps not often and perhaps not as much as a term baby might (although i also spent a hour watching a baby whose due date was 4 days earlier who does not do them either!) but he can do them, just not on cue.

I am going to try and relax.

[saintlydamemrsturnip]

I think they need better bedside manner so to speak.

Putting things in the mouth is 'important' because it moves the gag reflex back making it easier for babies to swallow solid food when they move onto it. DS3 (born at term) never put anything in his mouth (no idea why) and he was an absolute nightmare to wean - spent the whole time retching and chucking up. He was on soft purees ridiculously late because his gag reflex was still too far forwards. If your baby is doing that and they just didn't see it don't worry about it.

In your shoes I would look at the things they have picked up and then just think whether there are ways to encourage what they're suggesting. So in terms of drawing hands together I guess when you're playing just pass things back and forth (??) - or clapping games as he gets older - these don't need to be therapy sessions, just part of every day life. I'm currently trying to teach my ds1 to speak but we don't do therapy (well he won't) so I just built it into every day life. If he brings me a bottle of juice and says 'ni' (his word for drink) I get him to try and copy 'jjjj' before he gets his juice. Obviously you don't want to withold anything from a baby - I just mean build anything they've spotted into daily routines rather than stressing about special sessions.

I would go back but I would just ignore their manner and try and get the information from them.

[turningvioletviolet]

not stronger no, selfish yes. i thought number one was a one off, no reason for him coming early. but then number 2 came early as well. that coupled with a number of miscarriages (one at 21 weeks) meant that i knew my chances of another prem were very high, yet i still went ahead and tried for number 3. to this day i feel horribly guilty that i put dd2 through it all.
having said that i have 3 amazing (if not annoying, demanding etc etc at times!) children now. Ds plays county level rugby and is the tallest in his class, and we just waved dd2 off to primary school this week. no long term problems for any of them. NICU is but a distant memory.
most of all i would say to just enjoy the baby bit - i remember being so caught up in the prem stuff and watching that they were developing normally, just relaxing and enjoying the time sort of passed me by a bit.

[anonandlikeit]

Its crap that they don't have a better bedtime manner, over the years I have developed an emotional detatchment (sounds weird I know) at appointments. So I approach them all in a very business like manner (otherwise i'd ent up in tears).

The DR's physios etc do all have their developmental boxes to tick and if they don't witness then for themselves in clinic they may take a bit more of a watch and wait approach, and honestly although its not a nice process to go through it is far far better to keep your ds monitored until they are 100% happy that all is well than for you to have to fight to get back on a waiting list or be refered if you have any little niggling concerns yourself.

If you think your ds is fine then he probably is as you know him best.

[teej]

I so remember saying "yes he does do that, really!" at these appointments. The first time i encountered a doctor who said "well i know medicine but parents know their children" - after months of desperation - i could have leapt over the desk and snogged him!

It's a good idea to keep going to the appointments - you never know, one might actually turn out to be quite useful and informative (not in a bad way!)

Also agree with anonandlikeit that a lot of it is about tick-boxes so i wouldn't take any of what they say to heart if you feel your DS is developing fine. FWIW a friend went beyond full term and her perfectly bright and able DD bottom shuffled until she was 2 yo. By contrast my tiny, oxygen deprived, traumatically birthed @ 31+6 DS was pottering around quite happily by his first birthday. Developmental targets are generic averages - but our dc are individuals!

Also - you have to remember that doctors and nurses are trained to be non-committal unless totally necessary. when dc was signed off the developmental check ups at 2 yrs they turned round to us and said "well it's OK so far but something might still crop up you know" He's now nearly 8, small for his age but more than fine BTW!

Tell your DH not to stress - it sounds like you have a lovely, bright, inquisitive and sociable little boy on your hands!

[hildathebuilder]

Thank you all. My DH actually called the consultant again as we were struggling to relax. Apparently she said that we would know if there was anything major wrong by now as his parents and if we don't think there is there shouldn't be. Also she said that they do not have the time to see all the things the babies can do, and that's what the follow up appointments are for.

Now why they couldn't have said that when we met them i don't know but hey ho, I knew motherhood and especially prem motherhood was a roller coaster. But sometimes i just want to get off for a bit!

[WillbeanChariot]

I think that they do not really think how you will feel before they say these things. I was also told last time we went that I don't lay my ex-27 weeker on his side enough- well he doesn't like it so I still don't. Luckily we only have to go every six months now.

My DS is still very small and a bit behind for his corrected age. But he is making progress, and as long as I can see that I don't worry about him IYSWIM. A doctor only sees him on the one date, you see him every day and you know if he is progressing or not. Our babies had to fight to be here, let's give them credit for what they have done already!

[slinkyfish]

I have 28 week twins who are now 2 1/2 (where does the time go!) We had lots of follow ups and development checks, hearing tests, eye tests etc. I suppose what they are trying to do is catch potential problems early as that way they can treat it and the outcome is better for the child. I suspect as he was 15 weeks early they have pigeon holed him as pre 28 weeks there does tend to be more problems, but every baby is different and not all ex 25 / 26 weekers have problems, in fact many have none at all.I am a big believer in the need for them to listen to parents more. On several occasions I knew there were problems with my 2 in one particular NICU but was brushed off only to find out later I was right. The NICU they were born in were fab and the first thing the docs would say to me each day was 'How do you think they are?' There reason was that as I spent 24 hours a day looking at them I'd be the first to know! And that is my point really - Mum's know! I know some people think their may be a problem with their LO's, can't face it and say nothing, but you sound like you are really sensible and understandably feel they were negative, something we can do without on top of everything else. Just take a big deep breath and use these visits as a box ticking session. It took until the age of 2 for my 2 to catch up developmentally and size wise but they do get there in the end xx

[hildathebuilder]

Well we went back, and this time DS seemed to be slightly happier in the role of performing seal. Also we were a bit more astute and so tried to hold ds in a sitting position before they had asked him to do anything etc as DS is much more likely to do something when he sees it as normal rather than doing something because the docs are trying to persuade DS to do something.

Anyway they say he has come on leaps and bounds, and are happy with his development. I think he just didn't have cold this time, I think we will have a further follow up in February when DS is 11 ish months corrected and then perhaps 2 more. The docs seem to just want to keep an eye on him and have siad that this is just because he was a 29 weeker.

Also my friend was just overlooked and is now in the system. She was just a cock up.

Finally I have met one of the neonatologists quite a bit socially (she has a 6 month old baby and we go to one group together) and she has been a godsend as she knows what they look for but kind of just observes DS when he's being normal. She also take informal feedback back to the unit which is great as I know she listens and gets the fact I am not in fact complaining.

onwards and upwards and I'll keep my fingers crossed for the next 18 months