How many mothers out there have gastroschesis babies?

Felicia - posted on 05/18/2011

My son will be 7 weeks on Friday and he was born with gastroschisis... I am 19 an it was super hard for me to see my son in such pain! He is doing well but I am worried cause he has a little dry cough, I don't know what to do?

Felicia - posted on 05/18/2011

My son will be 7 weeks on Friday and he was born with gastroschisis... I am 19 an it was super hard for me to see my son in such pain! He is doing well but I am worried cause he has a little dry cough, I don't know what to do?

Jessica - posted on 11/27/2009

Thanks that made me feel better and more confident about the tube. My main scare is that her or my fourteen month old will pull it put. I don't even really know if this is going to help her come that much quicker. She also has fluid on brain so is requiring a shunt. Which she has done had one and a reservoir and both where removed because they came clogged. This will be her 4th surgery in a small period of time. Which also plays another factor in why i am so worried about the g-tube because i don't know how her body is handling all this surgeries.

Kimberly - posted on 11/27/2009

Quoting jessica :

I was wondering about the g-tube. I have a little girl that is about to have one but in next week. Well she is suppose to unless the doctors change their mind. She was 1lb and 8oz when born she was 23 weeker. She is currently 6 months(12 weeks corrected age). Anyways i was just wondering what to expect.

23 weeker.... jeez, That must have been so scary!  Well, a g-tube for an infant usually means getting out of the hospital soon, so congratulations! It is really weird at first, but they should show you how to use it. They kept me in the hospital for a week with my daughter to make sure I could properly use it and care for her on my own before sending us home. I guess in a way its a nice transition, but a frustrating one too. Its nice because since you're used to tubes and wires, going home you won't be completely cut off from that world, good for you and your baby. 2; if your daughter has feeding problems, like mine did, you know for sure that she is getting the proper amount of nutrition. 3; you can have her on a contunuous feed at night, so she can sleep the whole night through!. Its frustrating because you want to be rid of those tubes and wires for good when you go home! The g-tube also requires special care and maintenence. You need to make sure it and the feeding tubes are constantly clean. 

With my daughter we tried feeding her from a bottle first, and whatever she couldn't finish, we fed through the feeding tube. The frustrating thing starting out, though, was how long it took to feed her. The doctor suggested we give her a half hour to try eating from a bottle, so we did. That half hour on top of the half hour it took to set up the pump, run it, and clean everything after wards, took about an hour. 1 whole hour to feed her every time. In the end it was worth it. Slowly she was able to eat more from the bottle than from the tube and eventually she only needed over-night feeds. Then 3 weeks ago we stopped the over-night feeds too. Now she is eating completely from a bottle! It took us 4 months to get to that point, but we finally got there.

Anyway. Good luck. Remember, if it means your baby gets to come home, its worth it.

Andrea - posted on 11/26/2009

Quoting Kimberly:

Its great to hear from you Andrea. Its nice to hear that you didn't have to spend much time in the hospital.

Eleanor doesn't really have troubles pooping now. Things move through pretty easily for her. We're starting her on rice cereal, so the consistency has changed, but other than that, its fine.

Do you feed your little one formula or breast milk? Did your daughter have any reflux problems? Eleanor did. We had her on baby prevacid for about a month. Now that she's a pro at eating, and since she's bigger, she doesn't really have problems anymore.

Is your little one crawling yet? I was a bit worried when Eleanor started rolling over and scooting/ crawling that it would upset her belly or pull out her g-tube, but we just kept a onesie on her, and she was fine. There was no stopping her, she was determined to move and get to exploring.

She is on Breastmilk and yes she is stil having problem with refulx.. She hasn't really started rolling much or crawling yet..  She is however standing and try to walk... I am not sure that she is going to crawl or not.... Did you little girl have a heryna? Jaya does do to how they had to let her belly close.. It all just had to grow back together on it's own thet wasn't enough baby form them to close her at surgery..

Jaya has been eating baby food for a little over a month now and she hasn't had any porblems with it at this time..  I know they have said not to try any table food on her until they let us know.. They don't want her to get a blockage... Hoe to hear back from u soon... take care

Jessica - posted on 11/25/2009

I was wondering about the g-tube. I have a little girl that is about to have one but in next week. Well she is suppose to unless the doctors change their mind. She was 1lb and 8oz when born she was 23 weeker. She is currently 6 months(12 weeks corrected age). Anyways i was just wondering what to expect.

Kimberly - posted on 11/25/2009

Its great to hear from you Andrea. Its nice to hear that you didn't have to spend much time in the hospital.

Eleanor doesn't really have troubles pooping now. Things move through pretty easily for her. We're starting her on rice cereal, so the consistency has changed, but other than that, its fine.

Do you feed your little one formula or breast milk? Did your daughter have any reflux problems? Eleanor did. We had her on baby prevacid for about a month. Now that she's a pro at eating, and since she's bigger, she doesn't really have problems anymore.

Is your little one crawling yet? I was a bit worried when Eleanor started rolling over and scooting/ crawling that it would upset her belly or pull out her g-tube, but we just kept a onesie on her, and she was fine. There was no stopping her, she was determined to move and get to exploring.

Andrea - posted on 11/23/2009

My Daughter was born at 36 weeks with Gastroschisis.. I to have been looking for moms to talk to about this.. Our daughter was born at 36 weeks with Gastroschisis. I was able to deliver her All Natrual.. She had 2 surgeries one to put the silo on and on to put it all back in.. But they could not close her belly.. She was 3lb 8oz and 16in long at birth.. due to her size they said she was more like a 33 to 34 weeker.. she was on the vent for 11 days and had her surgery at 8 days old.. She had her small large intestines, bladder, stomache, overies and galbladder was some of what was out.. they told us she would be there for 6 months and she was only there for 7 weeks.. She is now 7 almost 8 months old and she is 5 almost 6 months adjusted age.. She took her first poo 24hours after birth and yes we all were cheering lol.. People who don't have this condition looked at us like we were nuts.. but was great new for us and her.. I would love to stay in contact so we can share... Doesyour little girl still have some problems with pooping.. I will have time that she can't or it is very hard for her to.. We are from Iowa.. We know that there were 3 or 4 other babies born around the same time and her and she had one of the worst case that our doctors had seen in year.. but over all i am just happy to have her here with my son (2 years) my hubby and myself..