Conflicting information on premature boy

[Pagan]

Hi Just wondering if anyone could shed any light or give tips on what questions to ask.

My niece had a boy 3 weeks ago, born by emergency section at 5.5 weeks premature. She had felt unwell and hadn't felt him move for a while. They couldn't find a heartbeat despite trying for 2 hours and niece was made to eat sweets and drink fizzy stuff to try to get baby moving again. This seemed to work but movement was very faint. It was the anaesthetist who said dhe had to go to theatre and NOW!!!

Anyway he was born, they had to work on him for 10 mins to get him going and he's been in intensive and now special care since. He's not feeding himself so still getting the nasal tube but he was over the 5lb mark when he was born and continues to gain weight. He cannot suck and when they gave him some water to try that, his alarm went off.

One doc made a guess that he might have inadvertantly stood on his cord in the womb and cut off nutrition and oxygen for a wee while. He has been having fits but seems to be getting better. He was supposed to get an MRI scan because of a swelling on his brain but this has now been put back til October. Nurses say he is coming on leaps and bounds and my niece sees a difference too but consultants say this is probably as good as it gets and they are bothered by him not moving enough. However my niece says she thinks he moves quite a bit.

Anyway (and thankyou for reading this far), she and her dh have to go and see the consultant today - any thoughts or experiences to share? What should she ask?

sorry no advice, but bumping for you

Hi Pagan i have several comments to make which may hopefully help you.
Although your post is very vague i get the impression that the medics are concerned that this little boy has been oxygen starved at some point.
This would cause him to fit, which points at a swollen brain. As the childs fits are getting less and he is moving around than this would suggest that any swelling is now settled and reduced.
A scan in October would prove useful in that it would show any abnormalilties as a result of the swelling, alternatively it may show a perfectly normal brain.
This information will enable the Drs to predict long term problems.
This in its self as many on here will tell you is a very hit and miss science and the Drs themselves may admit that it is impossible to predict with 100% accuracy.

You say that he is unable to feed himself, this may come with time and practice.
You say that "his alarm went off" but you dont state which alarm, the little boy will be attached to several pieces of monitoring equipment each of which will go off for about 1000 different reasons, some serious, most not, simply warning of a possible problem.

You do not say what you mean when you say "they worked on him" what does this mean? What were they working on, this is crucial information, your niece needs to know why they were working on him, what was going on?

I just want to add that these are very early days, if he apears to be progressing well at the moment then the only option is to wait and see how he is as he grows and developes.
A very stressful time, i hope that every thing turns out ok.

Thanks both! I'm pretty vague on the info myself as they are a few hundred miles away so unfortunately cannot fill in the holes. I'm keeping hopeful that things will be OK. They are all understandably very stressed out at the moment. Shall keep you posted
x

Bump for the evening mumsnetters

DTs were born at 27 weeks

DS couldn't suck at first and several weeks later was given a dummy to suck while his EBM was going down his OGT this worked

BUT having a preemie is very very stressful and the doctors always said when asked how long til homtime they would say HOW LONG IS A PEICE OF STRING

they will have up days and down days for a long time and hopefully more up days as time goes on

GOOD LUCK to them all

My Dt2 were born at 26 weeks and we had all kinds of prolems whilst in Special Care for 10 weeks. As the other Mners have said, there is stacks of uncertainty and what ifs and this is one of the biggest issues you will face.

Whatever tests can be done are not necessarily conclusive, and the constant message will be to wait and see. DTs were delivered because they werent getting oxygen. and although all early tests came back ok at 13 mths dd was diagnosed with CP - we still don't know how badly affected she will be, but ds seems to be ok so far. Not trying to worry you, just reinforce the fact that the doctors won't necessarily have all the answers right now.

It is a horribly stressful time and seemingly every day brings more worries and the docs were always reluctant to be positivie in case it got our hopes up, particularly about when to go home.

On the positive side, the feeding thing is hopefully nothing to worry about. All the babies in SCBU with my dts had feeding issues at first, including several (esp my 2) constantly fitting and stopping breathing when fed for days until their reflux was sorted and they learnt to digest and breathe at the same time!

Just keep you updated - he's doing better and cried for the first time today. He also ckoked when he got his nasal feeder inserted which the docs say is a good sign.

On the downside presents for him have gone missing in the post