Hello

[mymatemax]

Just seen this new bit & thought I'd get it started & say hello.
DS2 was born at 28wks & we went through all the normal ups & downs in SCBU.
Ds2 is 5 now & although does have some life long disabilities as a result of his prem birth he is an amazing, happy healthy little boy.

Hmm interesting re the Magnesium supplements - what kind of dose?

My consultant said that the only thing they do different is prescribe low dose Asprin and more careful monitoring - not sure if this includes growth scans as my baby was also IUGR due to poor functioning placenta.

I will mention at my postnatal appt - no that I'm planning another baby in the near future tho!

DS2 was also badly jaundiced and slow to gain. Is this typical of preemies?

rascal, I had initially been taking low dose aspirin when ttc and in early days of pg b/c I read that it increases blood flow to the placenta. But then they took me off of it when I went in for first appt

Rascal- with my second pregnancy I was on low-dose (75mg) aspirin from the moment I had a positive pregnancy test result right through to 35 weeks. I also had lots of scans to check my LOs growth and doppler scans to check on blood flow to the placenta and along the umbilical cord- and lots of BP checks plus a kit to test protein in my urine at home. I can't fault the care I had and I personally believe the aspirin delayed the onset of PE and made it a lot milder- so we made it to 36 weeks with DD which was a huge improvement, and I didn't develop HELLP second time round either.

With both of my DCs I had to have the magnesium sulphate drip to prevent seizures- the two hospitals I had them in both use this as standard treatment for women with pre-eclampsia who show symptoms of imminent seizures. As horrible as it made me feel I believe in my first pregnancy this saved my life as I was very poorly by the time I was diagnosed.

For all those who've had PE or HELLP I really recommend looking at the APEC (Action on Pre-eclampsia) website, they also have a list of medical experts who take referrals from anyone in the UK- which I did prior to conceiving no.2 DC and helped put together my care plan etc. Their website is: www.apec.org.uk and their forum is great too: www.apec.org.uk/forum/

Many hugs to all you special mummies of premmie babes...and especially to those who now have angels too. xxxx

rascal, do you have Hughes (Antiphospholipid [anti-phos-pho-lipid]) Syndrome? If the answer is you don't know, get checked for it!

It's the autoimmune disease I have that caused my problems, it can cause miscarriage (1 in 10 mc are because of it), late miscarriage, premature labour and IUGR in the baby and PreE, HELLP and PE in the mother. As you can imagine from that list, you have less than 20% chance of going to term naturally with it.

WRT to aspirin, there was a report last year that said all mothers should be taking junior dose in pregnancy because it could save a lot of pregnancies (especially as, as I said, 1 in 10 are from Hughes).

Hi Everyone. Big hugs to all you Prem Mummies. Especially the ones who are currently in SCBU and those that have lost little ones, my heart goes out to you.
Our DS (our first) was born at 34 weeks, a whopping 5lbs. We were lucky he held on that long as I had a hind water leak at 27 weeks.
He is doing very well now, despite some earier setbacks.

Just thought I would mention that Bliss have a fundraising week coming up soon for Valentines Day called Kiss for Bliss:
www.bliss.org.uk/pagebuild.php?texttype=whatsnew_kissforbliss

I should have really questioned their decision to take me off of it. Luckily, things turned out okay but it makes me wonder how many patients they should be putting on it.

Tinkerbellesmum
I've had a look on the site and other than having HELLP I don't have any other symptoms...howveer will mention it to my GP at my postnatal check up - Thanks!

A lot of people don't know they have it because of how it works or you get a single symptom and sometimes it's a pregnancy thing (as much as I hate hearing that phrase lol). Also the websites tend to show an extreme side to it. My main symptoms are dyslexia, Raynauds and brain fog.

Not a lot of GPs know about the disease, so make sure you arm yourself first (APLSUK Yahoo Group is a good place for that) and ask to get a referal to be sure.

Hi everyone

My waters broke @ 23 weeks and so went into local hospital, and so they had to transfer me to London. So I was on strict bedrest and steriod jabs, and I held on til 27 weeks + 5 days.

My lovely Identical DTs were born, DT1 weighed 2lb 12.5oz and DT2 was 2lb 13oz.

Sadly DT1 died {aged 5.5 hours} in my arms in NNU.

DT2 stayed in NNU ITU for 3 months on oxygen, {TPN - then tube fed, Doublephototheraphy etc.}

He went from full ventilation, to CPAP to low flow and then AIR !!!!!!!

He {KANGABOY} is now 12 years old and apart from Dyspraxia and slow processing of information and Asthma, HE IS TOP OF HIS CLASS with a very high IQ, we have just come home tonight from watching him perform in a play in the town's theatre. We are very very proud of him and how well he has done, he is about 5' 4" and takes size 7 shoes, so from small acorns huge oaks grow!!!!

So all of you with little babies in NNU now or who have just come home they do grow up big and strong

I like the analogy of a butterfly.

The story goes that a family were out and saw a butterfly trying to emerge. They stopped and watched it for awhile. It seemed to be struggling and the little girl was getting quite upset.

"Help it Daddy" she said eventually, really upset that this butterfly seemed to be in distress and struggling to emerge.

Her Daddy pulled out his swiss army knife and gently cut the cocoon, being careful not to harm the butterfly inside. The butterfly came out but rather than flying off, it died.

That struggle a butterfly goes through to emerge is making it strong, it's the first time it's muscles are used and it's building them up ready for the flight it's about to take. By helping it out the Daddy took that away from it and it wasn't strong enough to fly away.

I believe that the fight our little ones had has made them strong (and us too).

That's lovely TinkerbellesMum and so true!

Hi All

just thought I would join in - I was born at 30 weeks weighing in at 1 lb - this was 33 years ago. I was in Scubu for 4 months. This was due to my mum having pre-eclampsia and a bi-cornuate uterus.

I'm now pregnant (9 wks and praying I hang on in there) and also have bi-cornuate uterus, so am apprehensive beyond belief. But medicine is so advanced now. I am on the small side but and have had my health ups and downs, but fingers crossed for the future.

I'm having my baby in the hospital where I was born, which is all a bit weird especially as some of the doctors who will be looking after me were there when I born

Hi everyone

I have three children and my middle one was prem due to pre-eclampsia. He was a 30 weeker and weighed in at 3lbs but is now 6 and a human dynamo lol! My other 2 pgs were both full-term.

Leo also had a cleft lip and palate and didn't too well on my EBM. He only put on 2lbs in 9 weeks in NICU. A couple of weeks after we came home I changed him to Nutriprem and we never looked back!

He had one major setback when he had his first repair op - he had a major post op bleed and then a cardiac arrest and spent a week in PICU on a vent. He also lost almost a lb in weight which he could ill afford

However, being the little fighter that he is he came through it.

Big hugs for those of you with little ones in NICU now and for those of you who have lost your precious little angels.

sorry only just seen this link, my dd was born at 27 weeks weighing 1lb13 oz. she came home at 16 weeks on oxygen, we had pipes all over the house. She was almost off it at 18 months, but then got bronchiolitis (not good at spelling). finally was oxygen free at 2 years old. She is now 7 and only had a few probs, like eyes an dbowels but this could happen to anyone. she is lovely and glad she fought for life.

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Hi Rascal. Just wanted to say hello. My ds was born only six weeks early but was a tiny 2lb 12 due to IUGR because of my high blood pressure/ preeclampsia. He spent three days in NICU and four weeks in SCBU. He's now 14 weeks old today and nearly 11lb in weight. He's so active and chubby it makes me laugh.

Hi everyone. Thought I'd say hello as just saw this. My ds was born only 6 weeks early but was a tiny 2lb 12 due to IUGR caused by my high blood pressure/ preeclampsia. He spent three days in NICU and four weeks in SCBU. He's 14 weeks old today and is near 11lb. He so chubby and active I count my blessings for the care we both received in the hospital.

Hey everyone,

New to this site, just thought i'd say hi.
Both my pregnacies resulted in PROM at exactly 28 weeks.
My son was a 2Ibs 3oz 30 weeker born with a heart defect and only survived for 23 days.
My dd was born at 32 weeks weighing a respectable 3Ibs 14oz, she is now 19 months old and gorgeous!!

Hello all
DS born at 29+5 weighing 3lb 2oz. Spent 6 weeks in SCBU and is now 5 months old and 14lb 5oz

Hi all, My Ds1 was born at 35 weeks and has Cerebral palsy and is now 10!!
Dd1 was 31 weeks and has CP and ADHD, is now 7
Dd2 was 33 weeks and is completely normal and is 6
DS2 was 33 weeks and now 4 months, doesn't appear to have any disabilities but has had problem gaining weight.

No-one has found out why I can't carry to term.

oh weights

Ds1 was 5lb 2
Dd1 was 3lb 12
DD2 was 3lb 8
and Ds2 was 4lb 8

TBM thanks, I'm afraid I don't know what TOF is so would say he did not have it although obv not sure.

TTM thanks, it is really difficult isn't it, I'm so grateful for what I have but feel so ungrateful with regard to what I should have had. No idea how to broach this in the future with DS will just see how it goes.

AG, OMDB, JW, MMN, ELM, WT thanks for your kind words.

RTKM so sorry my boys are identical also.

TOFs is (had to look this up for a proper name) Tracheo Oesophageal Fistula. It means that the oesophogus (food pipe) ends in a bag and restarts from the lungs. Babies with it tend to be wired up wrong in other ways too - my nephew didn't have an anus, after they gave him a bag they found out his bowel ended just past his bladder and the stray poo that had got into his stoma nearly killed his testicle.

Hello, hello, hello!!!!

I'm so excited to see this section up and running because (coughs modestly) it was me who suggested having it to MNHQ a few weeks back (of course other people might have done so too).

My DS was born 31+4 with no warning, vaginal birth, weighed 4lb2oz and spent five weeks in SCBU but is now nearly 13 months (11 adjusted) and HUGE - think he's between 24-25lb probably - and fine. However one of the reasons I wanted this section set up is that I have ongoing worries about him (don't we all with our tiny ones?) and wanted a forum to discuss development with other premmie mums, to compare experiences and ask advice from those with older children.

It's so reassuring to hear from people whose children are now years or even decades down the line - it really does help. I had fantastic support from my ante-natal group on here when DS was born so suddenly, in fact they probably kept me sane, but it would have been great to have something like this then, so Rascal and anyone else who is currently going through the SCBU/early days bit, hope you find it useful.