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Introducing ourselves
Hi
I am Karen and have 4 children. My eldest is Kayles, who died when she was 16, 4 years ago, from a terminal illness. She was born at 23 weeks and suffered from chronic lung disease and papillomatosis (an airway disease). She had many many medical problems but battled for 16 years, before succumbing to her illness.
If anyone would like a look here is the link to her website memorial:
www.kayles-welburn.memory-of.com
I look forward to meeting you and am just so sad that you have a reason to be here.xx
I am Karen and have 4 children. My eldest is Kayles, who died when she was 16, 4 years ago, from a terminal illness. She was born at 23 weeks and suffered from chronic lung disease and papillomatosis (an airway disease). She had many many medical problems but battled for 16 years, before succumbing to her illness.
If anyone would like a look here is the link to her website memorial:
www.kayles-welburn.memory-of.com
I look forward to meeting you and am just so sad that you have a reason to be here.xx
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Replies
some of you will know me from the thread on support, or my other posts.
i have 3 children (all c/s), and i am a midwife (for over 11 years), and a nurse prior to this (with Gynae experience), so all my career has been with women. albeit a long time ago now, i cared for ladies who had early pregnancy loss, and as a midwife i have cared for a significant number of ladies and their families, who's baby didnt make it through pregnancy, or the first few days, or babies that had abnormalities that didnt make it either.
although i have never lost a baby or child of my own, i am here to provide whatever support i can to anyone who feels i may be of help.
thinking of all your little sleeping angels
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I did pay for mine - it was in American dollars, but was equivalant to around ??35. This is for life and you never have to pay for anything again. The gonetoosoon.co.uk however is free, although I personally find it a little less user friendly, because other people would have to register if they wanted to light a candle etc. On memory.com you don't.
glitterstargirl, how do you find gonetoosoon?
I'm sorry for your loss of your brother. I also lost my brother in a car accident when he was 23, so I know exactly what you mean losing someone without warning. Both ways are equally upsetting and traumatic, in different ways I think.
Please feel free to post here about your brother - I still miss mine very very much, and it would be nice to talk to someone else who has lost a sibling at times.xx
i also had a mc a few years ago, i lost my sister when i was 8 and i lost my brother when i was 10.
if you want to have a look at beaus memorial site thingy its www.inmemoryofbeaunicole.blogspot.com
i wanted to do her one of those proper ones but you needed a credit card and all that blahh so it was too complicated
[Modified by: MissKayz-x on January 18, 2009 09:00 PM]
Diana, how hard is it to set up the gonetoosoon site? Do you need a cars to set that one up?
Misskayz, I'm sure between me and glitterstargirl we could help you sort it out for Beau of you'd like?xx
Im so glad this forum is finally here! thank u so much karen. And im sorry for everyone who has lost somebody and now the forum is here we can all support each other
Most of you prob know my story but here it goes.. I was sent for a growth scan at just after my 36 week check with the midwife due to my bump measuring small and i had ++ protein in my urine. At the growth scan he was measuring 4 weeks behind and they sent me home saying "nothing to worry about yet - come back in 2 weeks" and thats its probally just a small baby - so i walked away thinking everything was fine.
A couple of days later i didnt feel any movement from him so i went to get monitored and thats when we got told we lost him.
Thank you to everyone for the support over the last couple of weeks
xxxxxxxxxx
You're probably in limbo right now waiting for your consultant appt I imagine (saw your other post).
I'm so sorry for what you've been through with your little man. Have you given him a name?
I can't imagine going through a pregnancy to lose them right at the end, I obviously lost my big girl, so completely different, although the pain of losing a child I guess is the same.....(sigh).... I hope anyone else that has been through this can offer you some words of comfort hon.
Big hugs to youxx
Diana, how hard is it to set up the gonetoosoon site? Do you need a cars to set that one up?
Misskayz, I'm sure between me and glitterstargirl we could help you sort it out for Beau of you'd like?xx
yeah i would like that
i'll have a go at the gonetoosoon one, see if i can work it out
http://beaunicole.gonetoosoon.org/
I was told to rest alittle more- nothing else. Went for 3D scan next day- all ok- could only see one of my little boys as the other was facing the back.
Had back ache that night but after a bath went to bed and it disappeared during the night.
Woke on and off during night, underwear a little wet at one point. Having tummy pains but thought I was constipated as I was on extra iron but after being awake from 5.30am and pain getting worse, at 6.30am we left for hospital.
Waters broke fully in car and screamed at my partner to hurry up as I could feel something coming out. Got to hospital at 7.10am, wheeled in and told to lie on monitoring bed (luckily there was the only english midwife on duty) and I told them I could not lie still. As I took my clothes off I could see the membranes coming out. Off to the delivery suite and after a few pushes, Joel was born at 7.30am weighing 1, 215kg. He was whisked off before I got to see him. Contractions more or less stopped so they gave me some medication. Didn????t really work but pushed Luca out into the world at 7.35am, weighing 1,226kg. He was whisked away too. After delivering the placenta I was put in another room, my mum and partner were allowed in then. They brought us some forms to sign so they could take my babies to another hospital (100km away). My partner went to see the boys and after a long wait he saw Luca in a portable incubator as he left for the other hospital. I didn????t get to see him before he went. I was moved to my room and I managed to see Joel before they tranferred him to the other hospital.
My friend came and spoke to the staff who said my partner should go to the boys- I wasn????t allowed until the following day. The boys had developed Twin to Twin Transfusion in labour or late pregnancy, and had both got bleeds on the brain (Joel had two, one either side, and Luca had one on the left) Joel was marked Level 4 (4 being the worst) and Luca 3.
I finally got to see my boys the following day when I was allowed to leave the hospital for the day but had to return on the night. The prognosis for Joel was very bad. Sadly he had another bleed on the 2nd day of his life and died aged 3 and a half days.
Luca responded well and was taken off the ventilator. He put on weight and had my expressed milk. I was allowed to do Kangaroo Therapy (skin to skin) with him for 3 hours everyday. The doctor was so pleased with him and the clot had shrunk and he was showing no signs of having any problems. Then 3 weeks and 4 days old, he had gas in his tummy. He was xrayed but it only showed gas. He cried and cried but nothing would sooth him. At 10.30pm on 10th Dec we got a call to say they were taking him to another hospital as he possibly needed surgery. We got to the hospital 3 hours before Luca. We learnt he had an infection in the tummy, it burst his small intestine and had led to peritonitus. He died Friday 12th December aged 3 weeks 6days. The change had been so quick- when he arrived at the hospital, only a few hours after we had seen him he looked so different. He looked just like Joel had, before he died. I knew he had fought enough and we told him to go and find his brother.
I feel so sad. It is 6 weeks tomorrow since Luca died, and 10 weeks next Tuesday since Joel died. They were so perfect and so strong. I am so proud to be their mummy but just wish they were still with me now.
I????ve set up pages on gone too soon for them, but nothing really seems to help. Not knowing Why they were born so early makes me feel so bad. But if they hadn????t been born when they were, maybe I wouldn????t have had anytime with them because teh TTTS could have killed them both. Nothing makes sense. Why when Luca was doing so well, would God take him too?
So sad
I'm so so sorry that you lost your precious boys. I can't give you any answers hon, especially the one about why they both had to die. It's heartbreaking and I have to hang onto my beliefs that they were really too good to be down here and God needed them for some other reason that we'll find out one day.
Sending you massive big hugs, be kind to yourself, you're so early on in your grief.xx
love and hugs to you and your boys xxx