Jaya Lynn.. Gastroschisis

Andrea - posted on 11/22/2009 ( 4 moms have responded )

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This is my daughter 2 days after her birth. she has a silo on her belly covering her insides from harm..

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Andrea - posted on 11/28/2009

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I know how that goes they think they can do every thing with out help.. Just goes to show us even the littlest one can prove us and doctors wrong.. I know Jaya kept pulling her vent tube and the vertral lavine tube out so they had to put socks on her hand ( they thought it would help) which were a big time joke she still was able to figure it out.. We had 2 set backs one was they thought she had minijadice and the other was they had to do a blood transfution but they did however forget to call my hubby and I to ask if we were ok with them doing so.. Over all she did very well.. Doctors could belive that she pooped while is on OR table so they had to change her.. Then it was bout 4 hours later and she had another one.. We were all cheering and some of the other parents in the NICU thought i was nuts lol... It is hard to belive that they had such a rough start to life just to prove to us that they are strong and fighters.. I can not wait for Jaya to show us what else she is going to prove she can do when we feel she might not be ready for it.. But the little thing in life mean the most... They told us that due to every thing that was out they were not sure that she was going to live.. When she came out screaming they turned and told me she was fighter...One thing we have found is that some times she will just scream and the only thing my hubby and i can come up with is that she most still have some pain.. Cause if we rub on her tummy it seems to relax her just enough that she will start to calm down.. I was wondering if your little girl does this from time to time? We go to see her Surgery team on dec 9th, So they can tell us how she is doing.. It is nice to have another mom to talk to that can relate... Hope to hear from you soon.. Take Care and Best Wishes..

Kimberly - posted on 11/25/2009

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I really wanted a natural birth. My daughter was 2 months early. (Actual age right now: 8 months, corrected age: 6 months) I was hoping for an extra 2 months! The day she was born we went in for an ultrasound, my husband and I, and the found that her intestines were enlarged and the amniotic fluid was low. Then we went into another room to have our heart rates, and my contractions monitored. Her heart rate dropped during my contractions. So, with the combination of all that, they decided she wasn't going to last during a natural birth, and if we waited even another hour, we might lose her. After we got to the hospital (which was right next door), and they got me in my gown, it took 45 minutes to get her out, with the help of about 15 people in the operating room. Those people at Swedish Hospital in Seattle really know what they're doing.

My daughter's intestines came out on the right side of her belly button. It's not really much of a belly button at all though. Its a bump in between two long horizontal scars. My husband and I both don't want her teased about it, so, if she wants to, we would like have reconstructive surgery done. If she is proud of it, then we will just leave it alone.

When the surgeons were putting her intestines back in, they just decided to remove the appendix, so it wouldn't cause any hassle later on in life. Other than that, all of her other organs were fine, even her lungs. By her third day she was trying to breathe on her own, with out the help of a respirator.

Other than the gastroschesis, she really didn't have much wrong with her. Except for 2 intestinal infections. If it wasn't for those, she would've been out of the hospital in less than 2 months. Because of those infections they had to stop feeding her, give her antibiotics, and let her heal. Unfortunately that happened during the time that she was supposed to be perfecting her suckling technique. So by the time she was able to eat again, she was so disorganized, she had to relearn how to eat. Because of that, she had to stay in the hospital a total of 4 months. They finally released her after getting a g-tube in so we could pump whatever food she didn't eat, directly into her stomach. It took a long time, but now, I'm very happy to say, she is finally eating all of her food orally, so she doesn't need her feeding tube anymore! She should be able to get it removed in late January, early February.

Andrea - posted on 11/23/2009

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well it was 100% natural.. Had to be inducded due to very very low fluid it was at 3% when they decided it was time for her to come out.. I did how ever have no meds. I refused them due to her gastroschisis.. My doctors refused to do a c-section unless she was have problem, they were scared of cutting her intestines and everything else that was out.. Nope she didn't have to have anything removed.. She is now 7 month and 3 weeks old (adjusted age 5 to 6 months)

Did you little girl have any other problems? My little girl has an enlarged kindney, her appendix is on the left side under her ribs.. We waited a full 7days for the swelling to go down so they could try to close her.. Then when they went to take her in they were not sure if they were going to be able to do the surgery due to the fact her belly was swallen and red.. looked really really bad and i felt so bad for her.. Did your daughter have problem with anything other then the Gastroschisis? Will she have to have another surgery to fix a hernia? We find out next month bout our daughters belly button fixed and the hernia repaired.. I really don't want to get her little belly button fixed.. but my hubby want to so that she isn't picked on later in life.. Was your little girls off to the side or right on top of the belly button... Our little girls was off to the left so now her belly button is low and off to the left side a little bit.. Well hope to talk to u more... take care best wishes

Kimberly - posted on 11/23/2009

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My daughter was a gastroschesis baby too. After 2 days, your baby's intestines look great! We had to wait almost 4 days for our daughter's swelling to go down. We had to do an emergency c-section because the hole the intestines were coming out of was constricting them, causing them to be severely swollen.



Did you have an emergency c-section, or did you go natural? Did your daughter need to get pieces removed from her intestines, or was she able to keep all of her's. Luckily my daughter was able to keep all of her intestines. How old is your baby?

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