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Archive for 2008

23
Dec

any advice please

Hi i was wondering if any one could help. I am currently 28 weeks pregnant and our baby boy has gastroschisis, we went for our regular scan yesterday and although the bowel not yet showing signs of dilation and the fluid looked fine they are saying they are slightly worried about the size of the baby, now i know from reading everything i can about this condition that the babies tend to be smalled but they are saying that he only measures over 25 weeks and weighs 1lb 10oz (which does seem small for 28.5 weeks) i am really worried they have said that as long as he grows by next scan there is nothing to worry about, has any one else been told the same and what do they do if he hasnt grown any? i am really worried and my next scan is not for 2 weeks so would be grateful for any advice/experiences thanks xxxxx

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17
Dec

Dylan, my man!

I was 18 weeks when I found out Dylan had gastroschisis.  It was a devistating day.  He was my fourth, and I had had all healthy children.  I spend most of my summer researching the condition and getting prepared for our hospital stay.  I found it very helpful to hear other peoples stories, so I had to share ours.

Dylan was born 10/9/08.  I was induced at 36 weeks and had a very normal delivery, besides being at a high risk hospital with NST’s and extra ultrasounds, everything was fine.  He measured normal in his ultrasounds, besides his tummy which always measured 1 week behind.  Fluid levels were normal, a good thing.  All went well.  He was born with all his bowel out, but it was all very healthy.  He was put in a silo just hours after delivery.  I got to see him once on his way to the children hospital, then I joined him 6 hours later.  He looked good,  was breathing great and was not in pain at all.  He was 26 hours old when he had his closure, it went well.  They took the vent out the next day.  He did great after, having his first bowel movement the day after surgery!  He got moved out of the NICU at 5 days old because he was “to healthy to be there”  we moved down a floor to recovery.

He started feeds at 1 week old and he loved it!  He only ate for 5 days before he started puking it up.  Non of the breast milk I pumped made it through him and he was not doing well.  It was weeks of x-rays and biopsies and blood draws before they desided he needed another surgery.  He had a blockage, they removed 2 inches of bowel, his appendix and closed him up.  He recovered very weell again and started with feeds just a week later.  It went very well this time and the milk made it through.  He had to get a blood transfusion which was very hard for me, but very good for him.  Then I got to breastfeed, and he did great!  He did so good it was only a couple days later we got to go home.  He was off TPN and gaining weight, so off we went.

Dylan is gaining weight like crazy now, and a happy baby boy.  He has some awesome scares to talk about and is a stronger man already.  It was a journey, but it was worth every day we spent in the hospital.

Leah

12
Dec

Gastroschisis: A video of my daughter's journey

My daughter was born with gastroschisis on September 24th 2008. She had surgery the day she was born and was in the NICU for 6 weeks. I created a video of her first two months. I hope that it touches you and helps new parents who are expecting a baby with gastroschisis or already have a child with gastroschisis.

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10
Dec

Emmi's Gastroschsis=)

My name is Ashley im 21 years old and my husband and myself have a Beautiful 2 month old daughter!She was born on October the 10 2008 weighing 6lbs 9.8 oz and was 3 weeks early.

She was born with a  gastroschsis.

I found out that she had a gastro. at 14weeks pregnant. it was the craziest day ever i have never heard of sucha  thing and really didnt understand it. I Went to the doctor every weeks after that until she was born and the day she was born was the happiest day of my life she was so Gorgeous.Well her stay in the  NICU was Okay she was in the for 25 days . She was born with almost all of her intestines out and her stomach was out.# hours after my c -section she had her surgury and was off to the NICU.The surgeon said she was one of the worst she seen, but they said she did the best that hes seen also,.

Two babied a year diagnosed with Gastroschsis goes home within 4 weeks.

Emmi was there for 25 days and got to go home We were so excited and so happy , Shes Amazingly Strong and Fabulous.

She is the love of my life and i couldnt ask for a better Baby.

She is going to be 2 months old on December the 10 and sleeps all night long.

Se doesnt cry nor fuss .What else could u ask for=)

28
Nov

pretreatment HELP gastroschisis.

hi im new to this so i hope I’m doing it right!

my nuborn baby has been diagnosed with gastroschisis. this will be my third child. i have looked and looked all over the net for any kind of pretreatment for this condition, or if there is anything i could be doing during my pregnancy to help. my hospital seem to be keeping me in the dark. form 30weeks on they might answer some of my questions but as I’m only 16weeks waiting till 30+weeks will drive me mad! also worried it will be to late by then for any help that might be out their for my unborn baby.

i have heard about amniotic fluid exchange in pregnancy but done know much at all about it. if there is anyone out there that might know anything about this (no matter how small) could you please let me know. or if anyone has any information on anything really it would be so much help. from a very worried mum thanks. my email is jrb_brb@hotmail.co.uk

20
Nov

Our gastroschisis story

First I want to say what a help this website was as we prepared for the birth of our baby. It helped so much to read other people’s stories.

I don’t have much time, but wanted to post a link to our blog if I could, it shares our experiences with gastroschisis so far. Our baby is one week old today, and had surgery to close her up yesterday.

Our blog is: www.faiths-place-08.blogspot.com

The Latest Posts from Faiths Place

[feedsnap]http://faiths-place-08.blogspot.com/feeds/posts/default?alt=rss[/feedsnap]

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13
Nov

Angel is still fighting to stay alive Born July 24 2008

My little girl was born July 24, 2008 and she had gastroschisis. Now she is four months and still in the hospital and I am worried to death. The funny thing is she was showing so much progress they started back feeding her and everything. All I want is for her to come home its killing me. My little girl will be four months and will have to have her third surgery on Friday November 14, 2008. I am worried becuase they have to taper her intestines and the surgent says it can be dangerous. I want to know if anyone had their babies with gastroschisis interstines tapered cause if so i want to know the result of what happened. Please send me a message if you have any information about tapering and Please Pray for my baby girl she is so bubbly and beautiful.

4
Nov

looking for answers!!

Hi, I am new to this site and I am 25 weeks pregnant with a gastroschisis baby.

The doctors have told me all along that I will be having a c section delivery in the best interest of the baby and that coincided with what i had read and made sense.

I have recently transfered to a new hospital where they are supposed to be more equipped to deal with the pregnancy but they are telling me I will have an induced natural birth. Has anyone had this and was it ok? I am very worried!

18
Oct

?? blood clots & black stool :(

My sister had her first baby Aug 1. He was born with gastroschisis and finally got to go home Oct 1. He had a blood clot while in the hospital but it went away, he caught respiratory MRSA while on a ventilator which they decided not to treat, and they put him on rantidine, ursodol, iron, and vitamins which he is still currently on.

Tuesday he started having really black stools, dr thought it was due to the iron supplement so they lowered his dose and sent him bavk home. Now it’s Saturday, his stool is still black and now my sister is bringing him in because the blood clot looks like it came back. :(

Do you guys have any experience with the iron/stool or the blood clots…maybe what treatment worked best?

i’m going to share this site with my sister, but if any mommies with gastroschisis want to email her with  info or encouragement – my sister’s name is Alli and her email address is (well she has two, but i think she uses the first one tho) -

snoewhyte13@hotmail.com and miztalkalot@hotmail.com

thanks for any info you have! <3

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16
Sep

20 weeks in the nicu

Found out our daughter had gastro at 18 weeks. She was born at 36 weeks 6pds 3 oz. We found out 1 month before she was born that our local pediatric surgeon was not taking new patients. We had to get our baby at birth or immediatley after to Unc which was 3 hours away.  Fortunately she had no intestinal damage.

All of her intestines were out and a small portion of her stomach. We were told by the doctor at the local hospital all of her intestines were dead and she wasn’t going to make it. They transferred her to Unc and the surgeon there examined her intestines and come to find out she had stooled in utero and her intestines were black not because they were dead but from melconium.

They put her intestines in a silo and pushed a little in at a time for 7 days and then she was closed. 7 days after her surgery she stooled which happened to be mothers day. It was the best present I could ever been given. POOP!. Now we knew her bowels were working and we could feed her. The green bile no longer came out of the ripogal tube which they had been suctioning out since she was born. The first day I ever got to hold her was on mothers day. Due to being intubated and all the tubes I did not get to hold her at birth.

They wheeled me in to see her before they took her to UNc and she lay on the table making sucking motions with her mouth. So beautiful.Feedings went slow at first. Only 30 mls for a long period of time. Then they decided to put a feeding tube down to help speed things up and get her off of her tpn( which can cause liver failure, jaundice, and any iv has risk of blood infections).

We got to a point where we knew her body could take a full feed and we thought we’d be going home soon but come to find out the breast milk I was giving her she was allergic too. The gastroschisis masked the milk allergy. She was dumping and having white watery stools and malabsorption. They said babies that didnt have intestinal loss did not have this issues and they didnt know.

The milk intolerence had went on for so long that here body produced so much gas it couldnt pass thru her intestines and she came down with NEC. Its where air gets trapped in the intestinal wall and can cause infection and sometimes surgery required to remove damaged intestine. So feeds were stopped and they put the ripogal tube back in to decompress the stomach. After 7 days of antibiotics and and huge tube down her throat they decided to restart feeds.

The ripogal tube being in her throat and no fluid passing thru living her throat dry and sphincter open she began to reflux. She would not eat because of the burning in her throat. THey started prevacid which seemed to help with the burn but she still spit up. The time she spent working on feeds the filter broke on her tpn and she came down with a blood infection which required a lumbar tap and medication.

Finally after all that NIcu decided that she would never take by mouth what she needed to because she would reflux as soon as she had 30 mls in her stomach and quit eating. We put in g-tube. We never thought our baby would need one of these. We finally got her home. Most of her feeds she takes by mouth and we only use the tube for continous feeds at night and to give medications . Sorry this is so boringly long but I wanted anyone with a gastroschisis baby to really know. I was under the impression before she was born we would have surgery and take her home if her intestines were fine.

I knew if there was damage there were other complications. I guess I was really disapointed that she had a milk allergy. I feel it was the cause for all the other problems she had. I seen other babies even with intestinal loss go home before we did. It was a little unheartening to see these other babies go home before us. I was happy for them but I thought it would be us. We expected her to go home around 8 weeks and we were in the nicu over 20. I wish everyone the best who has a child with gastroschisis.

It is a very emotional battle sometimes but there is a light at the end of tunnel. Our beautiful baby girl is finally home with us and we can love on her everyday.  ***Our baby is currently almost 5mos old. I would like response from anyone with older children with gastro. I’m curious when to start solid foods and how they handled it. Also anyone with some insight on any problems their child had as they got older.

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