Gastroschisis information (long and with pics)

When I was pregnant and found out my daughter would be born with gastroschisis, it was hard to find someone else who had gone through what I had. However in the last month or so, I've had probably 5 different ladies email me with gastroschisis questions...so I thought I would create this thread to share my story, and some information.
When I was 16 weeks pregnant, we had the AFP blood test done. It came back elevated for spina bifida, so they ordered an emergency u/s. The u/s confirmed that there was an abnormality in my babies abdominal wall, so I was sent to a high-risk fetal specialist, where they confirmed the gastroschisis. While the fetus develops, at around 12 weeks the abdominal wall closes, however with gastroschisis, the abdominal wall does not close, so the bowel/intestines develop on the outside.

I had a pretty rough pregnancy, but thats not very common with gastroschisis babies. Some things we did to prepare for our babies arrival were: get as much information on gastroschisis as possible, tour the NICU where she would stay after birth, find a new OB (I had to deliver in another town where they had an NICU), had lots of sonograms (they monitor you very closely, especially in the last trimester) and talk to a neonatal surgeon.
There are two types of surgeries that can be done, depending on how much bowel is on the outside when the baby is born (this amount can change as well, the bowel can move in and out of the opening throughout the pregnancy). The more preferred and easier type of surgery is a primary closure, where they put everything back in the first time and close the stomach back up. The second type of surgery is a silo, which is a plastic bubble (for lack of better terms) that hangs above the baby, that they put the intestines up into, and they (surgeons) come down and squeeze the fluid (they get very swollen from amniotic fluid) out of the intestines and put intestines back into the stomach several times a day until everything is back inside. This can take several days before they can close the somach up.
After the baby is born (you can do vaginal or c-section, my OB had delivered several gastro babies before and felt more comfortable with a c-section, as did I so thats what we went with), a team of neonatologists and surgeons will prepare your baby for surgery (wrap up intestines/bowel so no infections). For us, they were nice enough to bring her over and let me look at her for a minute before they took her off.
Your baby will then be taken to surgery. They did a primary closure with my daughter, as her skin had started trying to grow over the intestines to heal itself, so it was kind of necessary. My daughter was in surgery for about 3 hours. After she was stable and back to the NICU we were able to go see her.
Your babies face will probably be very swollen from the morphine, and they are on oxygen for the surgery. My daughter was on oxygen for 2 days because of meconium aspiration as well. They will put in a feeding catheter during surgery, it goes in the jugular vein in the neck and comes out at their chest. Through this they get TPN, which sustains them and gives them the necessary nutrients to stay alive. Your baby will not eat anything by mouth for at least the first week. After they are able to start with feedings, they will start very small (3 cc's every 3 hours, thats about half a teaspoon), and they will work up to full feedings. At the beginning they will also have a Gomco tube (either OG-oral gastric or NG-nasal gastric) that suctions the gunk out of their stomach. Your baby will be able to come home from the hospital once they are pooping regularly, eating full feedings, and pooping regularly.
Some other things to consider: most gastro babies are born between 36-37 weeks unless there is another issue (my daughter was born at 36 weeks via emergency c-section and weighed 5 lbs 2 oz). A lot of gastro babies have IUGR once you hit the 3rd trimester, if this happens then they will take your baby out sooner. You will not be able to hold your baby for probably a few days (I waited 3 days). Most NICU stays for gastro babies are 4-6 weeks long.
And finally, the best thing you can do for your gastro baby is to pump! It is hard work, but BM is the best thing you can do for your baby, and there is a VERY good chance that once your baby is able to have full feedings they will take to the breast and you can quit pumping.
As for quality of life, 9 in 10 gastro babies survive. There are normally no complications after the first year. There may be a second surgery for hernia repair when your LO is a bit older, but its not very common. You will have a normal, happy and healthy baby, the beginning will just be a little bit rough.
My daughter now
her scars:
And just Bella
And kudos to you if you made it through all this!

Just wanted to say great idea Destiny. Even if other people aren't necessarily experiencing this in particular, it's probably helpful to hear of another mama going a rough time and knowing she had a positive outcome.

Oh my! Bella is looking amazing. Shawn agrees   How big is she now?

I think it's awesome that you posted your story. I really hope that you can help other mama's that have babies with gastroschisis by posting this.

Quoting Dest♥Bella[ebfb.hm:“ When I was pregnant and found out my daughter would be born with gastroschisis, it was hard to find someone ... [snip!] ... will just be a little bit rough. My daughter now her scars: And just Bella And kudos to you if you made it through all this!”

My son was born with a similar condition, omphalocele, the only difference in the condition is that in omphaloceles there's a membrane sac around the organs, he was born with his liver and small intestine on the outside, were actually here in the hospital right now, he had surgery Thursday to close up his muscle

Oh my, she is beautiful!

Quoting j e s s i c a ♦:“ My son was born with a similar condition, omphalocele, the only difference in the condition is that ... [snip!] ... small intestine on the outside, were actually here in the hospital right now, he had surgery Thursday to close up his muscle”

I hope his surgery went well and he has a fast recovery, I know how scary it can be!

Quoting Danielle Sharise:“ Oh my! Bella is looking amazing. Shawn agrees   How big is she now? I think it's awesome that you posted ... [snip!] ... that you posted your story. I really hope that you can help other mama's that have babies with gastroschisis by posting this.”

Thanks, she's 8 months old now (as of yesterday) and weighs 13 lbs 4 oz!

Quoting Mandi♥Trinity{EBFB:“ Just wanted to say great idea Destiny. Even if other people aren't necessarily experiencing this in particular, ... [snip!] ... this in particular, it's probably helpful to hear of another mama going a rough time and knowing she had a positive outcome.”

Thanks, I hope it can help others. When I was pregnant I could never find anyone who had been through this themselves, it was always, 'my boyfriends aunts daughter is going through this,' or something like that...and once I found someone who had been through it personally, it really helped to ease my mind.

Quoting Neni's Mommy:“ Oh my, she is beautiful!”

Thank you  

Quoting Dest♥Bella[ebfb.hm:“ I hope his surgery went well and he has a fast recovery, I know how scary it can be!”

Yea he might be getting discharged today, how old is ur LO now?

Quoting j e s s i c a ♦:“ Yea he might be getting discharged today, how old is ur LO now?”

She is 8 months old now

Quoting Dest♥Bella[ebfb.hm:“ Thanks, she's 8 months old now (as of yesterday) and weighs 13 lbs 4 oz!”

That's awesome. She's getting so big! She's obviously smaller compared to the other babies her age because of the gastroschisis/surgery but I think she looks fantastic regardless. I feel like such a creeper, I cannot get over how beautiful she is & keep looking at her picture lol.

Quoting Dest♥Bella[ebfb.hm:“ She is 8 months old now”

Im glad she is doing well & u can barely even see her scars! shes gorgeous!

All Bella Boo, she's getting so big Destini. She's such a beautiful baby and you're doing and have done such a great job with her.

Quoting Danielle Sharise:“ That's awesome. She's getting so big! She's obviously smaller compared to the other babies her age because ... [snip!] ... fantastic regardless. I feel like such a creeper, I cannot get over how beautiful she is & keep looking at her picture lol.”

Lol thank you! I don't think you're a creeper at all