Angely on September 20, 2009 is a post from: Gastroschisis

She is absolutely gorgeous!! 

They whisked her away as soon as she came out, I got a little peek before she left.  I got to see her a few hours after her operation and she had a silo pouch and looked extremely swollen and puffy which they said was from the drugs to paralyse her.  Everyday she looked so much better.  She has been given a long line and is still on morphine etc.  But she was taken off the ventilator today, although she will be back on it Friday when they do the closure operation.

She’s a little fighter and a little squaker at the moment!!  I feel like i’ve known this little girl for ages and it’s not even a week.

It is jusy so worrying.  Not knowing what to expect and not being able to help in any way. 

The first time I left hospital for a few hours to go back home I cried all day coz I didn’t want to leave her on her own.  The nurses here are brilliant and I know she is in the best hands.

I am now staying in accomodation at the hospital but will be going home on the weekend which I am dreading coz I know I will be so upset.  We will be coming up every day to see her but I just hate leaving her.

Did you all feel the same?

Baby Lilly has arrived! is a post from: Gastroschisis

Growing up i never really had physical problems with my scar.  I was a cheerleader and i played competitive fastpitch softball, sliding and all my scar never hurt or tore, When i was  14 and 16 i had re-constructive surgery on my scar so it wasnt attatched to my stomach muscles and because i was uncomfortable with the 6 inch vertical scar in the middle of my stomach and the feeding tube scar i had on the side of  the scar. Thanks god all my friends were very understanding and open minded with me.

well now that im getting older,  I would like to know if having a child is safe. I would love some feedback on others who have had a child.

And to those who are expecting a baby with gastroschisis, dont worry yourself to death. Your baby will be fine =)          I had a very ordinary life! I wasnt made fun of or anything of the sort.  My life has been great.

- Shelby.

My story; is a post from: Gastroschisis

stressed out! is a post from: Gastroschisis

any advice appreciated

confused is a post from: Gastroschisis

When my husband and I where told we where expecting a baby with Gastroschisis (2008), our world fell apart. We thought we where going to have a child with a permanent illness, who would not be able to digest food properly and never be a “normal” child. We couldn’t of been further away from the truth.

Throughout my pregnancy I was told I wouldn’t make it past 32 weeks (Gastroschisis pregnancies never normally go full term). I was offered a termination twice at our local hospital. I now feel angry and wonder why this was the case since understanding what the condition is and seeing how perfectly normal my daughter is today. I was scanned every 2 weeks at my local hospital, where they checked my baby’s size and my amniotic fluid levels. I was then referred to Kings College Hospital London, where I was again scanned every 2 weeks and was finally induced at 38 weeks. Our daughter was born 12 hours after being induced and weighted a tiny 4lb (Don’t worry not all Gastroschisis babies are this small). I had a normal delivery.

Here’s a quick summary of our experience so you know what to expect:

Our baby was taken immediately after birth, her bowel was firstly wrapped to her in cling film and by the time we got to see her (3hrs later) her bowel had been put into a silo and she was in an incubator. Over the next week her bowel was gradually eased back (a little bit each day) until the 4th day when all of the bowel was back in and she was ready for her operation. During this time she unfortunately caught an infection and the operation was delayed for a few days. Her operation was finally carried out 7 days after birth.

Following her operation she was fed TPN (Total Parental Nutrition) for a week and everyday they drew back the green bile levels in her stomach through a tube in her nose which also fed down into her stomach. When her bile levels dropped the hospital started her on my expressed breast milk. She sampled her first bit of breast milk (also through a tube via her nose to her stomach) 1 week after her bowel had been closed (2 weeks after birth).

We finally got to hold her when she was 2 weeks old….and I will never forgot that first cuddle. She was in an incubator for 2 weeks and then in a hospital cot bed for another 3 weeks where I was also able to breast feed. Her nose tube was removed and after 5 weeks we finally got to take her home. By the time she was discharged she was breast feeding and just like any other baby.

There where a lot of ups and downs and upsetting moments during her time in intensive care, but you have to remain strong and positive. You have your good days and your bad days.

I thank the hospital staff and surgeon every day, as her operation was performed through her bellybutton. She doesn’t really have a scar. They kinda reconstructed a belly button for her, which looks like a larger than normal, flat, slightly mis-shapped belly button. We are really pleased with the result, as we were worried she was going to have a scar across her stomach. It doesn’t look like a normal belly button (as its totally flat, with no indentation), however considering how the baby is born and everything they go through, it looks petty good. I know not all hospital do it this way.

Our daughter is now 5 months old and so far everything seems to be going well. We haven’t had any set backs so far and we have just started introducing her to other foods (banana and baby rice) as well as her milk. We had a check up last week and where told she has a slight hernia, however its nothing that needs addressing now and hopefully never will.

If you have just been told that your baby has Gastroschisis or are due to deliver any day, the most reassuring thing I can tell you is that your baby is just as “normal” as any other child. Your baby will not look any different or behave in any other way. He/she will breath, smile, love and laugh like any other child.

There of course can be complications and every case is different. There can be extreme cases of this condition and you should ensure your hospital offers you as many scans as possible to monitor your baby’s condition and the bowel.

During our 5 weeks at Kings hospital there was another 5 babies all with the same condition in ICU (Intensive Care unit). As parents we all discussed our experiances and it soon became apparent that every babies recovery time with Gastroschisis varied. This ranged from 4 weeks to 3 months. We where told by the hospital that only 4 babies over the past 10 years (in there care) had died from this condition. The overall success rate is extremely high.

Good luck and remember every baby is a special gift from god and gastroschisis babies are no exception.

Gastroschisis Baby is a post from: Gastroschisis

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!

looking for answers!! is a post from: Gastroschisis

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.

20 weeks in the nicu is a post from: Gastroschisis

At the hospital they took all their test and gave her the results and wanting her to let them know if she is going to keep the baby or not. She was smaller that is was suppost to be. Looked like there was problems with the brain and her feet looked wrong. It was like a bomb hit us. I could see my daughters heart braking right in front of me. How do you help someone when they have to decided something like this. And it didn’t help that one of many doctors that saw her say she should end it. Well, my daughter decided she was going all the way no matter what was wrong.

mind you she is only 19 years old. The next couple of weeks went by before a MRI could be done to check on how the brain was. When they were do, my grand baby had everything she needed upstairs(her brain) but they did tell here at that time her fluid was very low. So we were always solving one problem but gaining another. My daughter had so much stress on here but trying not to let it get to her for the sake on the baby. So now we are at 28 weeks. The doctors want her to go to 38 weeks. She has a ultrasound every week and her fluid is going back up. We keep waiting for the next bomb but it hasn’t come yet.

We have read everything we can on gastroschisis and that is how we found this web site. It has help reading from everyone here.

Thanks for your time helping other. I have learned to never give up!!!!!

Will be new grandma is a post from: Gastroschisis

I was induced and she was born at 11.58am on June 5th.  She was whisked away to the NICU where her bowels were wrapped in saline to be protected from drying out.  Waiting for the doctors to come and tell us she was stable was the longest hour of our lives.  She had to be intubated at 30 minutes of life.  She was 4lbs 9oz.  The transport team from Sick Kids came to take her in the early hours of the morning, but wheeled her isolette to my bedside so we could see her.  It was heartbreaking to see her and to leave her.

The very next morning we called Sick Kids.  The nurse told us we should have named her fiesty as she did not like being bugged.  I’m glad she had such fight in her.  It turns out she had her bowel, stomach, right falopian tube and right ovary ‘out’.  We were also told at that time that the reason the bowel was becoming dilated in utereo was because she had an atresia (blockage).  They put her bowels in a silo and we were told that once they pushed the bowel back inside and operated to close the defect, we would have to wait 6 weeks before they could operate to remove the blockage.  Only then could they start feeding her.

After 6 days she had surgery.  I was able to hold her for the first time just prior to her surgery.  That is a moment I will never forget.  The surgery was a success.  Slowly she was weaned off morphine and extubated.  I noticed that she kept stooling and when I told surgery, they said they it must not have been a blockage, perhaps it was a narrowing, so they sent her for a contrast study (they place contrast in her stomach and watch via x-ray until it goes through her system).  It made it all the way through – proving there was no blockage.  We were so relieved she wouldn’t have to have the second surgery.  She was started on continuous feeds and a bowel motility agent.

The weeks that followed were long and stressful with many ups and downs.  Iona (we named her after an Island between Ireland and Scotland), kept having ’spells’ where her heart rate would drop and her oxygen levels would de-saturate and we couldn’t figure out why.  She had almost every test in the hospital and were able to rule out what was not causing it, but we never found out what did.  Luckily she grew out of them (after 9 weeks).  She also kept having mysterious ‘infections’, but they were never able to find a true infection…she only showed signs and symptoms.  She really was a mystery baby that kept all the staff on their toes.  We were so nervous the first time she fed by bottle, but she did amazing.  However, she had a feeding study that showed she would silently aspirate into her lungs – meaning that she didn’t have a protective cough to clear her airway.  Maybe that was what caused her spells?  It was a long process of feeding, rejecting feeds and then having to go back on TPN.  I dreaded each time that happened as I had researched how TPN can damage the liver.  When she was finally up to full feeds by bottle (she was drinking my breast milk thickened with a product called SimplyThick), she stopped thriving and went for 2 weeks without gaining weight.  It turned out that Simply Thick was running through her system before her body had a chance to absorb anything.  We switched her to formula thickened with rice cereal and she has been steadily gaining weight since.

She was finally discharged at 11 weeks and has reached the 8lb mark.  She is so alert and has great head control and is as active as any normal healthy baby.  With the exception of some reflux and us having to give her injections for a couple more weeks (for a blood clot she developed in the NICU – a complication that sometimes arises from having a PICC line), she us doing amazing.

She has been through so much…we all have, but hopefully, we can all put it behind us.

PS her scar is minimal

11 long weeks, but we are home is a post from: Gastroschisis