Printable View
Hi all,
Im 28 weeks pregnant with a Gastroschsis baby. Was just wondering if theres anyone out there expecting or knows of somebody or who has had a gastroschisis baby?? I still feel totally confused as what is going to happen. I was seeing a private ob but was refered to KEMH where i see a different doctor everytime and they all tell me different things about her condition. I would love to hear your stories !! :)
Shannon
I used to work at the NICU there. What would you like to know....After a couple of hours bub will be transferred to PMH so I can tell you a bit from both ends.
Hi my son Lucas was diagnosed with Gastroschisis at our 18week ultrasound, We got told the wrong sex as well which is apparently common in Gastro baby's. Its so hard to know what to expect especially when the doctors and ultrasound techs just say we will have to wait to see how bad it is when he's born. I did find out the average gastro stay for bubs in America is 3 weeks however in Australia where i live its 2mnths.
I was induced at 36 weeks at JHH, He weighed 6 pounds 4 or 2992kg's on the 30/3/09. I didn't get to hold him before they whisked him away but i was prepared for that, my partner managed some sneaky photos.
Lucas' bowel was able to be reduced in ward (put back without an operation). He developed a hernia and had many complications being able to digest sugar and was put onto a carbohydrate free formula known as RCF. I pumped for three months in the hope of breastfeeding. Whilst in NICU our days were spent by his bedside getting excited with every bowel movement and reduced aspirations.
Lucas continued to throw up all food until the scans showed up an obstruction in the bowel (Kinda a twist). Lucas had a operation to remove that bit of bowel and he started coming good again. The hernia was taken in the operation and a new belly button created which looks great.
In my opinion all the time in hospital is just waiting for your bubs bowel to start functioning normally before you can go home. This can take some time but its defiantly worth it.
We spent 4mnths in NICU before we came home and he was on a normal baby formula by then. He has just turned 1 and is going great looks like no complications other than a big belly but they grow into it. He's just like any other normal kid which is amazing because when he was diagnosed the doc told us to abort, so glad we didn't listen. We have to make sure he doesn't eat to much sugar and make sure he doesn't get constipated, yearly we will get his vitaman levels checked but so far so good.
I respect and sympathize with any one going through Gastroschisis keep strong and in the end you will end up with a head strong, determined (common of gastro baby's) bundle of joy. I should also tell you i saw two other Gastro bubs that went home within two months.
Do u know what hospital ur going to?
If you have facebook add me my name is Marijke Zwan i can answer any questions you have and hopefully help
xx
Hi Marijke,
it was lovley to hear your story. i tried to find you on facebook but i couldnt. maybe try and add me, my name is shannon young from perth.
How is lucus going now?? I am currently 34 weeks.. had a bit of a scare last week because i have been having lots of tightning and period like pain and after a week of obsevation in hospital it didnt progress and they said i just have a very irrritable uterus! so i just have to hang in.
I have not had an induction date booked yet although im going to ask my ob about it tomorrow when i go and see him. where you booked in at 36 weeks all along or was it a spontanious induction due to complications? i have read lots of stories on the internet and it seems most mums are induced around 36-38 weeks. but never says what for..
That would have been so hard.. 4 months in the nciu. for what they can see atm my baby has uncomplicated gastroschsis and not dialation or twisting or anything with the bowels.
I am going to king edwards in perth. where did you go?..
Thanks for your reply muminalice.
I have learnt lots since my last reply having met with peadiatric surgeons and peaditricians and spoke with some midwifes and my doctor.. and i also got a bit of a tour around pmh neonatal ward the other day which was helpful.
Just waiting to see when they are going to induce me now! do you know how far along most mums with gastroschisis went at king eddies?
Sorry for the lateness of my reply :D