Needing some Encouraging Stories

mmcafee · Joined: 06 Jan 2009 Posts: 9

IF any one out there has any encouraging stories of those who's children where born with gastroschisis please send them my way. I'm almost 11 weeks pregnant and got a diagnoses just yesterday that my baby will most likley be born with this rare condition. I'm 25 yrs old and this is my second pregnancy my first was uneventful and I have a healthy gorgeous 3 year old girl. I am in shock and am in disbelief. I'm scared to death and am a emotional wreck. I've read a lot of horror stories about this condition but not many encouraging ones. I just feel like I would like to know both the good and bad and so far all I've heard is bad. Thanks so much in advance for everyones support and help while we go through what I know is going to be a very trying time in our lives.

Thanks,
Mica
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Mica

Dean · Joined: 15 Dec 2007 Posts: 14

Hi Mica,

Looking forward to hearing more from you once your baby comes along. As far as the horror stories are concerned there are not too many of those around.

I run an independent Gastroschisis blog which is solely dedicated to parents to be just like yourself, you can also read stories from parents that have experienced the condition first hand. You can also read registered members stories from those that have grown up with Gastroschisis.

Looking forward to hearing from you both here and on the Gastroschisis website

Dean
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Gastroschisis Support and Resources

LindyM · Joined: 21 Oct 2008 Posts: 47 Location: Scotland

Hello Mica,

I read your post and felt I had to reply as what you are experiencing sounds exactly what I felt only 12 weeks ago. Although my baby does not have a gastroschisis (he has an exomphalos) I remember being told the diagnosis for the first time. I found out at 18 weeks pregnant and was devastated and the doctor that diagnosed the condition did not seem to know a lot about it and didnt offer me much of an explanation.

I went home and cried for a whole weekend but then I found geeps and it was a great comfort to me. When you hear of these conditions for the first time it is very scary and you feel like your world is about to collapse but believe me there is light at the end of the tunnel.

I learned as much as I could about exomphalos on my own and then when I spoke to specialists I felt the cloud lift from over me. I am still worried, dont get me wrong but the more you learn and the more information you get things will get easier.

I dont know if reading this helps but I just wanted to give you some words of support from someone who has felt exactly the same way as you do now. These babies are more special than most and can come through this fighting!

Try and stay strong and look after yourself. Keep in touch and let me know how things go.

Linda x

Lucy · Posted: Wed Jan 07, 2009 10:11 pm

hiya

i know what you are going through. its a very scary time and i know that the stories out there can be very scary.

my dd was diagnosed at my 13 week scan. she was born by emergency c section a day earlier than planned as she had stopped moving. she weighed 4lb 12oz. she had surgery that day where all of her bowels were put back into her tummy. she was then in intensive care on a ventilator for only 48 hours before breathing on her own. she was put on a ward 5 days later, then came home 9 days after that when she was feeding well and tolerating milk.

she is now a gorgeous 14 month old baby. we have had absolutely no problems since, she is crawling around everywhere, is into everything and eats and poos very well!!! the only noticeable difference is that she has a scar instead of a bellybutton but is otherwise very fit and healthy.

i know its hard but try to stay positive for the sake of you and your baby

keep in touch

Lucy xxx
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Proud mum to Ella, born 04/11/07 with gastroschisis

mmcafee · Joined: 06 Jan 2009 Posts: 9

Trying to write to someone made a mistake sorry
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Mica

mmcafee · Joined: 06 Jan 2009 Posts: 9

Made a mistake trying to write someone personal sorry getting use to the site.
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Mica

mmcafee · Joined: 06 Jan 2009 Posts: 9

What's so ironic Lucy is that my daughters name is Ella and if this one is a girl we love the name Lucy. That just struck me as ironic. Anyway thank you so much for the words of encouragement I've been trying to piece everything together in my mind. I've done so much research and have already started a little binder full of information about gastroschisis funny a word I've never heard before didn't even know how to pronouce has suddenly become my fixation, my world. Thanks so much for the loving words. Please keep the messages coming.

Thanks

mmcafee · Joined: 06 Jan 2009 Posts: 9

Thank you so much for writting to me. It means so much that you would take the time out to write to me. I was and have been encouraged with everything I've read I'm starting to understand more about my babies condition and preparing myself already for what ever may come. Thanks again for your support and understanding it's hard to talk to ones who aren't going thru something like this. I feel sometimes like i'm getting more support from strangers in my situation then from ones in my own family. I know that sounds horrible but I don't think anyone understand that feelings and thoughts you have. Thanks again a milion times over for writting to me I will keep you posted. I got for a scan in four weeks.

Much Thanks,
Mica

mmcafee · Joined: 06 Jan 2009 Posts: 9

Thank you so much or your words of encouragement and thanks a million for your wonderful blog that I have spent nearly the entire day yesterday reading stories that have truly lifted my spriit. I am still extremely scared esp. of the unknown, but I firmly believe that knowledge is power and I have already started a glossary of words to get myself familiar with by the way thanks for the glossary list on your blog I used that as a base and have actually already added more words for myself. I'm determinded to be as knowledgeable about this as possible and to prepare myself for what is in store. I know our loving God will only give me as much as I can handle, even if it's not what I want I know he will give me the strength to endure this trial we as a family are about to face.

Many Thanks and Much Appreciation,
Mica

P.S. I will keep you posted, I go for a scan in four weeks and I'll let you know what they say then.

sonia · Joined: 09 Jan 2009 Posts: 2

sonia · Joined: 09 Jan 2009 Posts: 2

mmcafee · Joined: 06 Jan 2009 Posts: 9

You are naming your daughter after me then lol, that's how I pronouce my name I just spell it the Hebrew way. Thank you so much for responding. I hope the best for you and your family. Please keep me informed I would love to know how things do for you and your little Mikka. I feel somewhat close to your little one now that I know we have the same name. Please keep me up to date with things.

ahinton · Joined: 11 Dec 2008 Posts: 3

Hi Mica,
I have a gorgeous 5 1/2 month old named Lucy. I was diagnosed at my 18 week scan and was devastated. She spent 30 days in the NICU after being siloed for 6 days. She was 36 weeks, 4 lbs 8 oz. We followed up again with our pediatric GI yesterday and he said we did not need to come back as she is a completely normal 5 month old. Keep the faith... this is FIXABLE!!!
Ashley

georgie · Joined: 19 Dec 2007 Posts: 13

hey there
i have a 2 year old daughter called genevieve, i remember the absolute terror when they made the diagnosis and instantly became a sponge for information, i was convince the worst would happen, but it didn't. she was born at 37 weeks and weighed 2.2kgs, she had a primary closure at 4 hous old and then spent a total of 18 days in hospital, she was discharged home fully breast feeding and absolutely perfect. she has had no problems since (except being a total pest!!!!).
have faith and look after yourself.
georgie

raeanneb · Joined: 22 Jan 2009 Posts: 4

Hi Mica,
I have a 10 week old daughter named Faith. She was born in November and we are still in the hospital, but should go home this weekend. I've kept a detailed blog of our experience so far, which everyone here has said is pretty typical in their experience with gastroschisis babies (well, except for one complication she had that isn't supposed to happen with gastro). You can read it at www.faiths-place-08.blogspot.com. I found that as I was preparing (I didn't find out until 28 weeks) reading other people's personal stories were very encouraging, and helped me prepare for our hospital stay.