parents of premature babies who were in NNU ITU or SCBU or bereaved parents

[KangaSantaMummy]

Hi I just thought that as a follow up to this thread
here

as the programme has already finished then it would make sense to have a different one.

What do you all think?

sorry I did not mean to mislead anyone about boys or girls and which were stronger

DS1 had infection because his waters had been leaking since 23 + 2 weeks until 27 + 5 weeks when they were born.

So it didn't have anything to do really with them being boys.

So I was bed bound in hospital from 23 weeks.

For all mumsnetters who have lost babies I would recommend SANDS

we always get our christmas cards from there {100 approx} because it is our way of reminding people about DS1.

DS2 knows all about his older twin brother because I believe in honesty with him over things like that especially being identical twins.

We have got videoed scans of the two of them kicking each other, the hospital we went to videoed the scans as they happened on VCR.

BTW I had steriods injections every week for their lungs to develop

i have heard that girls are generally 'stronger' than boys. My DS was in NICU for 3 weeks at 34 wks and a baby girl was in 4 days and she was 33 weeks (obviously that is only one case).

I also recommend SANDS and many local SANDS groups may have babies Christmas services of rememberence coming up soon. I alwasy got o my local one and light a candle

Glad to see thread started on this topic. Its emotional but it's so good to talk - thanks westcountrylass as you say 30 weeks plus is certainly better - my dd had steriod injection to help lungs too should she be born early and came out of intensive care room 1 24 hours after being born and had only need air. I didn't see her for two days as I was in high dependency unit myself - lost a lot of blood post op and had to have transfusion and so had only poloroid photos taken by dp for those two days. Though strong dd had a hairy night and day when she could not tolerate any milk and had not yet taken any milk at day three- her veins were too small and doctors could not get a tnp? tmp? long line in through arm or leg and she was only on glucose solution - then miracle one afternoon she had digested milk!! something like 0.5 mls then this increased and increased and I won't bore you all with the rest. Biglips I do not take the pill for the same reason as you - the hormones in pregnancy and the pill make bp too high. On the pill my bp was around the same as you and in pregnancy it was 200/150 by the time they did the c.sect. I wonder if you or anyone out there knows of any homeopathic remedies that help with high blood pressure - I was given so many different medications in pregnancy and none worked at all.

My DS was drip fed for 4 days and then it took him 10 days to go from having a few mls of milk to taking a full breastfeed. I can certainly relate to that anxiety as he lost so much weight his skin was too big for his body

I really wish my DS was given the steroids to help his lungs along as he had to have cpap for 2 days and I could not hold him for 4 days as he wasn't stable enough. At 34 weeks though he was on the border of the hospital giving it to him or not, the Drs decided as baby was a good size they wouldn't but even though he was fairly large (5lb 8oz) he was immature.

Couldn't bear to watch the programme, just thinking about it makes me cry. Dd2 was born at 31 wks - not so early and a really good weight (1.9kg) but was really really sick. 3 weeks in intensive care and another 5 in high dependency, then never properly well for a long time after she got home. She's 20 months now and fine but I still feel really traumatised and have become worried about so many things that never used to bother me. I can't beleive how much this experience has affected me and feel angry with myself for not being able to get over it, especially when i hear other people's stories that are so much worse.

I know its easy for me to say but Jodiesmum you really should not feel angry with yourself for not 'getting over' your DDs NICU experience. It is a frightening experience for most people and one that we all have to try to come to terms with eventually but it is not easy. Many moon s ago I part trained to be a nurse (did not finish my course, long story) and so I coped pretty well in the medical environment of NICU but there were many aspects of it that did my head in. By chance I had my DS the same time that a former colleague of mine had her DD prem and e were in NICY together and she found the 'being the Mum of a preemie' very hard and as since decided not to have anotehr bay because she doesn't think she could handle going through it again. Her DD was born at 36 weeks but she had problems after birth and was ill with chest infections for the first 2 yrs of her life.

Wafflign aside, it is all relative and I am of the opinion that you should not be angry at yourself but accept that you had a shitty time and that is how you feel.

(((hugs)))

Hi girls.... this is my story.... my 3rd son who is now 29 months old, was born 6 weeks early, I had to have a c-section as my other 2 were c-sections too. Throughout my pregnancy, I had very low blood pressure, a suspected MILD heart attack, and a MRI scan because my face was twitching on its own, my mother had a stroke while pregnant with her 8 th pregnancy. My son was 6 weeks prem, born with an exomphalos(intestines outside his belly), TOFS, tetralogy of fallots (4 defects of the heart), 7th nerve cranial palsy (right facial stroke), and overridding toes (loses balance frequently). We spent 7 weeks in hospital with him on a NGT (fed through a tube in the nose straight into his stomache. He had his belly repaired on day 5, he was sent to GOSH, came back. Then we were sent home when he was 7 weeks old, from then on he had numerous blue tet spells, they are like mini heart attacks, with the rolling eyes, like having an epileptic fit. VERY SCARY....... he had his 5 hour open heart surgery at 6 and a half months old, at Great Ormond Street Hospital..... Life has been hard, he is only just on his correct weight, feeding was a nightmare, everything that went in came straight back out...... we are under 7 separate Doctors.....but life can only get better....... When I here stories like this, I just well up inside, it brings everything back home to me... My son is doing as well as can be, I hope all your loved ones are doing just as well.

Survivour! you are an inspiration!!

Survivor, you, your family and your DS hav been through the mill haven't you? I applaud you, I am not sure I could be so upbeat after going through what you have. You must be one strong mama!