Gastroschisis

Andrea - posted on 11/30/2009 ( 23 moms have responded )

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My Daughter Jaya was born at 36 weeks she was 3lbs 8oz and 16in. With a birth defect called Gastroschisis.. ( her large,small Intestants,bladder, stomach,overies, and galbladder were all out side her belly) she sepent 7 week in the NICU, wasn't aloud to feed for almost a month, ( i pumped) Had a silo put on her inside to protect them from harm.. Had surgery when she was 7 days to put it all back in but there wasn't enough of her to cover everything so we could see inside our little girls belly for 2 1/2 months.. Got to hold her on a pillow when she was 8 days old.. was on a vent for 11 days.. When she came home we were up every 1hr to 2 hrs for feedings the had med every 3, 6 and 12 hours.. Had to change her dressing ever 12 hours to start and then every 24 hours then every other day and had to do it in a starile way.. Plus i had a 19 month out little boy with me at all time.. i was able to stay at the hospital with my mom there to help me as much as she could.. So i was just courios if any other moms babies had any other problems... Jaya is now almost 8 months old is 17lbs and 25 3/4in... has problems with moving food and i looking at more surgery here soon... Hope all of your babies are doing good..

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Melissa - posted on 01/01/2011

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If it helps at all, I was born with this defect in 1976. :) I have a horrid scar on my stomach, but have never had a problem from my last surgery at age 5. I got pregnant, had 2 babies and now they ask "Mom, why don't you have a belly button?" :) Keep your chin up, and let me know if you have any questions!

Andrea - posted on 12/04/2013

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Ashley, Never to late on this topic... My little Jaya is now 4 almost 5 years old. She really hasn't had any problems other then with poop issues but we use Mira lax { with doctors ok} we also use chewable tablets made by fleet.. The most I let Jaya go is 2 days at most, then I begin the meds to try and keep her a schedule. But she is almost 4 foot tall and 40 lbs.. She is the most outgoing loveable diva friendly little thing I have met, She is nothing like my 2 boys one older and one younger then her. I have always teased that the nicu nurse broke her.. But over all she is pretty healthy, she did spike a fever like that bout a month ago now took her in to find she had strep and a belly issue going on all at the same time. so they put her on some meds, and she was back to normal after a good poop and some rest.. Please if you ever have a question feel free to ask.. I hope your little Marley is feeling better... where are you located i.e. doctor.. we are in Iowa and we doctor in iowa city..

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Andrea - posted on 12/04/2013

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Yes please share and let me know how your little Marley is doing... You take care and you are very right only special parents get blessed with little fighters... it takes a lot but they turn in to the most strong headed yet sweetest most loving and caring kids I have ever met... I think it is because they have had to fight from day one they know no different...

Ashley - posted on 12/04/2013

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Thats great! I hope one day I can use our experience to help others as well. Its nice to talk to someone who has been there... I always found it annoying when people acted like they knew all about what I was going through because their brothers friends cousins son had a baby with gastroschisis. Lol There were some people I disnt talk to at all for the entire 3 months because everything they said would bother me, even if it wasn't said with ill intent. I ended up writing a letter to my friends and family to "help them help us". It really helped. I will have to share when I have more time. Maybe you can share it with the person you are trying to help.

Andrea - posted on 12/04/2013

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Knock on wood, no Jaya has been very very very lucky as far as that goes. She just like to prove her team {doctors} wrong... She has been doing it since we found out... They told us we wouldn't carry to 20 weeks we made it 36 weeks with a few problems then told me she would be there at least 6 months was there 7 weeks. she pulled every tube out. She was the nicu tear... LOL... They did her closure surgery and just left it open with a clear bandage over it.. The only major problem we had was she was behind in motor skills and didn't walk till she was 15 months.. but she never wanted to use her belly muscles..

Andrea - posted on 12/04/2013

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Yes, I do... Is even worse when some one close to me has a little one that ends up in nicu or has a sick little one... I find that takes me right back to looking at her and just crying. Has been a couple of times I have had to walk away and regroup myself.. I live 3 hours from where I had her and the town I live in is very very small and they don't know a lot about it. So I end up telling them more then what they can tell me lol.. She goes and sees her team at least once a year if not twice just depends on is she is complaining otherwise it is on a as need be case.. I use to talk about it a lot now it is more when someone ask about it or if she is having issues then I talk about it more.. I have been walking another mom through Jaya's story as she is will be having her little fighter on the 16th of this month.. she is delivery the same place I did so that has been helpful..

Ashley - posted on 12/04/2013

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Marley was also born at 36 weeks :) glad to hear your little girl is doing well these days. Did she end up having another surgery after your post? That is my biggest fear with Marley, it took them 6 days to stabilize her after her last surgery and her platelet count got down to 17 at one point, they couldn't get blood or platelets into her fast enough! They transfused her for 6 days straight and we almost lost her it was so scary. I am so afraid of having to go through that again. She also developed NEC a month later (the weekend they were going to send her home) and i swear I didnt sleep for a week. It was just such an emotional roller coaster. I think these babies are only given to a special kind of parent, because it definitely takes a lot to go through the first few months!

Ashley - posted on 12/04/2013

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We are in Vermont, but she was in a hospital in New York. Do you still get emotional about Jaya being in the NICU? Marleys been home 3 months now and I STILL get emotional thinking about it, and talk about it a lot. I still get the urge to bring her to them when she gets sick rather than the doctors here!

Ashley - posted on 12/04/2013

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I'm late to the conversation, but curious to know how your little is now? My daughter, Marley, was born with this in May of this year. She was in the NICU for 89 days, underwent 3 surgeries, the last of which she had a rough recovery from. She finally came home in August and ended up back in the hospital with bloody diapers 3 days later. She is home again now at 6 1/2 months old and just a few days ago spiked a fever of 104.9 and went into a seizure. The fever spiked a few times over the course of two days and they did blood work and found nothing wrong. She also went three days without having a bowel movement but finally had one today. Her fever has been low grade today. I am still freaking out not knowing what caused the sudden spike in temp. It also got me wondering how many days she can go without having a bowel movement? Now that she finally had one I dont think there is anything wrong in that aspect that caused the weird fevers, but 104.9 is high and to come on so quickly has me worried!

Andrea - posted on 12/08/2009

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Yea, I am glad to have her in my life and I like to think i am lucky to have her and my son in my life.. I hope she will feel that way when she is a teenager lol.. She was my blessing from above.. How is you little one doing? take care

Ashley - posted on 12/06/2009

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That was good that you researched it. I'm sure that helped a lot. I guess its just hard to really know why things happen. We just have to except that they do and make the best of it. Good for you though for doing your homework! Jaya is a lucky girl to have a Mom like you!

Andrea - posted on 11/30/2009

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The only thing they could tell us was that when he inside went out at 10 weeks ( as all babies do) her belly just didn't close.. Otherwise they say it can be due to drug use ( which i never did nor did my hubby) so i knew that was a posablity for us.. I to have asked the doctors many many time what and why this happens.. I think the best thing i did is as soon as i found out, I was on here researching gastroschisis to try and understand it.. So that helped me alot.. over all they have no idea.. there were 3 others born b4 Jaya and 1 or 2 more after her...

Ashley - posted on 11/30/2009

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You are more then welcome! It's great to hear that your daughter is doing well now! Thats amazing! She is lucky to have a wonderful big brother! Did the docs ever explain what causes this to happen? While I was pregnant I heard of this condition but it is extremely rare. Could they tell you why this happens?

Andrea - posted on 11/30/2009

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Thank you much Ashley means alot to me.. Is nice to have people just to talk to... It really isn't bad now that she is 8 months today.. She is getting better still has some set backs but over all she is great, and her big brother is very protective of her also..

Ashley - posted on 11/30/2009

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You must be an amazing person. I could not imagine going through any of what I just read. Your daughter is a fighter and must be a strong baby girl, she must get that from you! I cannot share in your stress or worries. I can't even imagine to walk in your shoes for a second. I just wanted to tell you that I will pray for you, your daughter and your family for the rest of my life. Email me if you ever just need a friend. God bless you.

Andrea - posted on 11/30/2009

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Quoting Brittany:

I understand that, it just amazes me. My son as not extremely early and most of his problems were when i was pregnant.When he was just a few weeks early it was really scary so for you going through all that i cant imagine. When I was pregnant they thought my son was going to have to have brain surgery when he was born because the right ventricle of his brain was swollen. They told us that he had a possibly of having delays or slight retardation. It was the scariest thing of my life. Thank God he pulled out of it. They said it was the fastest and most dramatic recovery they had ever seen.



I am glad to hear your little guy is ok.. Yes it is scarey for any parent to hear that some maybe, may not be or is wrong with you baby.. I know when I found out all I could do was cry then when we went for CVS ( placinta scrapping ) and they want us to end the perg. I looked them dead in the eye and told them over my dead body.. She had a cysit on the back of her neck that we checked for Downs,turners and others.. They all came back normal.. Then we met with her Surgery team and as they talked and told me all that could happen or go wrong... I sat and cried some more but put on a brave face and just took it day by day.. I am just so thankful that she is here and doing as well as she is.. Thank you so much...  

Brittany - posted on 11/30/2009

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I understand that, it just amazes me. My son as not extremely early and most of his problems were when i was pregnant.When he was just a few weeks early it was really scary so for you going through all that i cant imagine. When I was pregnant they thought my son was going to have to have brain surgery when he was born because the right ventricle of his brain was swollen. They told us that he had a possibly of having delays or slight retardation. It was the scariest thing of my life. Thank God he pulled out of it. They said it was the fastest and most dramatic recovery they had ever seen.

Andrea - posted on 11/30/2009

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Thank you Whitney.. She is a little fighter, that is what her name means too.. We wanted to give her a name that would stand for every thing she has gone throught and will go through.. Thank you again

Andrea - posted on 11/30/2009

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Thank you much Brittany, I don't look at myself as amazing.. I just look at as a mom would.. Your kids are the world and you want to do whats best.. Thank you again...

Brittany - posted on 11/30/2009

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I will pray for you and your little one. I am glad she is doing better. Your an amazing mom.

Andrea - posted on 11/30/2009

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Thank you.. We all do.. We feel very blessed to have her in our life... I know she is daddy's little girl and her big brother won't let anyone touch her and get very upset if someone makes her cry ( like dr for shots) Thank you so much...

Janine - posted on 11/30/2009

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my heart goes out to you. may god bless your daughter i hope everything turns out good. I wish i could relate and im sorry i can't. But i wish you the best of luck and just enjoy every moment with her never let her see you sad.

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