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Archive for March, 2010

23
Mar

ellie-rose 15/12/06

ellie-rose was born with gastroschisis and my lil angel has been thro the mill since day one i found out ellie-rose had this defect at my 13 week scan i was dreading goin for my scan due to losin a baby 4 months befor i layed on the bed waiting for the lady to scan me n it was the most agonising wait in my life but there was more to come of those the sanographer said oh your baby is not fit for life so shock hit in and i burst into tears she then said ill have to go get the doctor to confirm it was a long horrible wait me n ellie-rose’s dad sat wile the consultant explained wat they had found but when he said the baby is fit for life but it will be a rocky road me n ellie-rose’s dad took his words on board n we went a head the pregnancy wasnt easy at all i developed high blood pressure what turned into pre-eclampsia then my waters went at 29 weeks which ment hospital stay after hospital stay then i got to 37 weeks and i was induced at st marys hospital manchester.

ellie-rose was born at 4;20am 5lb 6oz no midwife to be seen when her head arrived i got to hold ellie for 2 mins then she was wisked away that feelin of going thro all that pain and someone takin ur child away from u is the worst feelin ever the doctors put ellie-rose’s bowel in a silo bag she was so tiny in the incubator n looked soo red but she was my baby.

at 7 days old they operated on ellie-rose they managed to put all her bowel bk but there was more to come 4 days after bein operated on ellie-rose had to have a scan on her neck the left side of her face had swelled the scan confirmed the worst she had developed a blood clot in a small vein in her neck the doctors put ellie-rose on heperin injections twice daily she was on them till she was 8 weeks old at 4 weeks ellie was then able to be fed milk she developed problems with keepin milk down they then diognosed reflux was this nightmare ever gonna end ellie was then discharged at 6 weeks finally things started goin right but then after 2 trips a day to hospital for injections for the blood clot ellie-rose then developed chicken pox she had to have another hospital stay due to her bein so young,

ellie-rose was in and out of hospital for problems with weight n feeding then 5 days before ellie-rose was 2 she went for reconstruction surgery to make her a belly botton she was fine pulled thro brilliant then we got to xmas eve n she was bein violently sick she was taken into hospital by ambulance she had contracted an infection in the wound she lost soo much weight she droped to 17lb after that operation that just left a discustin scar that looks nothing like a belly botton ellie-rose is now 3 nearly 4 still in 9 to 12 months clothein and weighs 24lb and goin thro loads of tests to find out y ellie is not gaining weight also we have noticed ellie is not knoing when she has got a dirty bum until she is really sore which is makin it very difficult to potty train hopefully some one will help ellie with this problem but would like to hear if anyone else has had a child or them selfs delt wiv no sensation wen needin toilet n any help i could get wiv tryin to explain to my gp about this problem i wish everyone gud luck and all the best that they get better soon and pull thro everything

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22
Mar

Wonacott

Our daughter is in Sweden with her Swedish man.  She found out from an ultrasound that her baby has gastroskesis.  For several weeks and until very recently, they observed swelling of the intestine inside the belly and adjacent to the wall.  But just last week (29), they could see in the ultrasound that the entire intestines inside were now swollen.  The monitoring plan has changed, as they will now do an ultrasound weekly and in a couple of weeks will change to two times weekly.  All gastroskesis births in Sweden are cessarian.   The likely cause of the swelling is the small opening in the belly wall, which is becoming smaller as the baby grows.  My question is how has the prognosis changed now that there is much more extensive swelling of the intestines?  The goal now is to get to week 34.  To get to week 35 is now considered very unlikely.

21
Mar

Our Baby Rowan

Well, I am so glad to have found this site. Our baby, Rowan Jackson was born on 6/21/09 with Gastroschisis. Now, before I go on, I want to be truthful about everything that has gone on with Rowan. I was always told by doctors that Gastroschisis would not kill my, child, and “it would just be a little surgery and 4-6 weeks of adjustment.” So here’s our story….

I had done typical 2-3 weekly doctor appointments with the specialists. At my 32 week visit, I had told them I didn’t think he was moving as much, and he had failed 2 weeks of stress-tests. They did the ultrasounds and they said since he moved his fingers, they thought he was fine……well I wasn’t happy with that and went on to the Labor/Delivery at our hospital. After 3 days of fetal monitoring and steriod shots, they decided to take Rowan by emergency C-section. I was in shock because they had just said they wanted to try to make it to 36 weeks, but his heart rate was high, as well as mine.

I didn’t get to see my baby when he was born. My husband took a picture of him on his cell phone. I felt ripped off, honestly. Anyway, they rushed Rowan to surgery to try to get the bowel in. They said he didn’t have much bowel out and it should be an easy surgery. Ok, I felt relieved.  Seven hours later we got to see little Rowan, with all the tubes and lines. But, I was so happy to have my baby.

The next morning, the doctors said they were having a hard time stabilizing his electralights. He was very septic and they weren’t sure why. The next morning they went in to put the rest of the bowel in…….the surgens were only gone for 25 minutes. They came back white-faced and said it wasn’t good. When they went in, they saw that most of his bowel was nacrotic. They pulled out all the bowel to see if they could get any or some bloodflow to the bowel. This was the worst day of my life. No one told me my son’s intestines could “die” or that that he could lose his stomach, intestines, and colon!!! What was going on??

The NICU doctors told me Rowan would more than likely not make it through the night, much less the surgery the next day. They said they could keep him alive long enough to get our family there to see him. I was devistated. I sat next to Rowan’s incubator all night that night and little Rowan held on. I didn’t even realize I was jeopordising my own health….both of my legs had swollen 3 times their normal size and I hadn’t even noticed. I was numb. My roots had been shaken.

The next day was what I called the “Hail Mary” surgery. I don’t think anyone had much hope for Rowan, but I did. The nurses and doctors quietly took Rowan to surgery and said they would call me to update me. That was the longest 3 hours of my life. When the hours passed, the surgeon who had been so dismal before the surgery, came bouncing in the room, smiling. She said that they found enough good bowel to be survivable. She said even though his stomach and intestines were grey, they would get bloodflow and flourish. He lost 75% of his small bowel along with the iliocecal valvue, and was left with Short Bowel Syndrome, with 41 cm of living bowel remaining. Hopefully his bowel would adapt. They made him a stoma and they would reconnect his digestive system in 8 weeks, when he would be gestationally a newborn. Oh God, thank you! That’s how I felt! He was gonna be ok.

The next weeks went by. He was recinnected and had 61 cm of bowel at that reconnection. He had a g-Tube and Broviac cathater in both legs, and was on TPN. His reconnection surgery went well, though he had a lot of problems with TPN induced liver problems. That was a scary time. We didn’ t know if his gut would adapt in time before his liver was shot from all the TPN. Eventually that too passed. FIVE months later he was discharged from the hospital….I thought that was the end of it all……

We made it through Christmas and New Years Day. Rowan continued to “dump” everything he ate. Eventually, I was sure he was dehydrated. What was wrong? We admmitted him back into the hospital, only to find out he had contracted Claustrdia Defficil (C-Diff) which is a bacterial overgrowth problem that was reaking havic on his digestive system. We spent January and February of this year at our hospital in the PICU. But, now it was time to move onto a higher level of care.

So, if you are looking for advice on your child with gastroschisis, I can only say this. It could be a long road. Or it could be as simple as a few weeks of adjustment. I was never told of  “what COULD happen”.  Rowan’s situation is not as common, but we are currently in a hospital with many children that were born with Gastroschisis and are still fighting for their life…even at 2, 3, and 4 years old.  You WILL find the strength to deal with it. These babies are fighters to live and you will fight to the death for them……

Currently, Rowan is 8 months old and has only been out of the hospital for a few weeks before returning.  Now, we are inpatient at Cincinnati Children’s Hospital, working with the “best GI doctors in the world”. LISTEN TO ME:If your child has Short Bowel Syndrome due to a massive bowel resection, Cincinnati Children’s Hospital is where they need to be. I fought like hell with my insurance company to get Rowan here, and we made it. There are people here from all over the WORLD that have come to work with their Pediatric GI Team. Rowan is improving everyday. He’s off TPN, he’s growing and gaining weight. He’s 8 months old, but since he was 8 weeks early, gestationally he is only 6 months old. He weighs around 13 1/2 lbs. We should be back to our home in TN within a few weeks. These children are miracles from God. I never thought Iwould have the strength to get through this, but somehow we made it.  Our little Rowan was given to us and he is here for a reason. Thank you for letting me share my story and I hope it helps someone along the way….

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19
Mar

35 weeks pregnant not long to go…..

Hey everyone, i wrote in before explaining that i didnt have a clue whats going on. I thought id keep you updated and let you know how everything is at present. if you have just found out your baby has gastroschisis, do not worry, i know its very hard but stay positive, we can follow eachothers stories on here. unfortunatly you may feel that you are not being told enough information, this is simply because thay can only see your baby on a scan and they cannot tell you too much untill your baby has arrived. This is because they do not know how much bowel is out, how big the hole is in order to push it back in or if there are any twists and knots. I kept asking what was actually going to happen, will i see her, how will i deliver, how long will she be in hospital for etc; but as i said unfortunatly they cannot say untill they have examined her. i had an appointment last week, i walked into a room with 5 people waiting to speak to me. This is the first time i had spoke to everyone who will be present at my delivery. They explained everything very bluntly but at least ive finally got an idea of what will happen. The longer she is in me the stronger she will be for her operation. However every baby is different so if they suggest to deliver earlier, just remember its best for your baby. They said there going to induce me at 38 weeks, this is simply because its more planned, i live about an hour away from the hospital so this is best for me. Although im kind of hoping i go into labour naturally before then as the sound of them breaking my waters scares me alot. Hopefully it will be natural delivery, however they said if the baby is in stress at anytime a c.section will be carried out. Once she will be born they will examine her and then talk through different procedures to get the bowel back in. Its entirely up to me and my partner, however i would rather them choose as they are the specialists. They said they will show her to me but it wont be for long. After they have opperated on her, its then a long process of testing the bowels each day. I asked if i can breastfeed, they said i would most likely have to express and freeze my milk. on some occasions they may suggest you use formula milk, again it all depends. One good thing to find out is if any fluid is passing through your babys bowels now, as this is a very good sign. They can see this on your scan so ask them next time you go. Before trying milk in your babys bowels they put a food colouring through first, I got a bit worried but its doesnt harm them, its simply so they can see if it passes all the way through or is held up by any knots. I also asked if i could be there everyday, as i dont want to be visiting once a day, i want to be with her at all times as i think it will be harder to bond with her when it comes to finally bringing her home. Also i think babies no when there mummys are close by, after all theve been with us throughout the 9 months. Im now being scaned every 5 days just so they can monitor how shes doing. So at this stage its like a waiting game. I hope this helps or gives you some idea of what will happen, i no its very hard as they have only explained this to me at my 34 week scan. Do not worry if you are unsure as the further into your pregancy the more you will know. Every baby is different its just a matter of being patient. We are all going through the same thing so remember weve got eachother. I thought i would be more worried as i got close to the due date but infact im so excited about meeting her. Nobody said it was going to be easy but staying positive has helped me alot. Is anyone close to their due date like me and in a simular situation, if so email me charlotte-atherton@hotmail.co.uk as it would be great to here your journey so far. Hope this has helped, i will keep you updated. Cant believe im going to have my little princess in the next 4 weeks. How exciting ;-)

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17
Mar

HERNIA SCAR AFTER GASTROSCHISIS

my little girl was born in 2007 4 week early with the condition and is coming up to 3 in june she is still really tiny and in 12-18 month clothes there going to operate in december time this year to give her a belly button as all she has where her scar is , is a hernia has anyone else had a hernia from this ? or had the operation regarding scar etc??

thanks

jodi x

16
Mar

gastroschisis as an adult

my name is Vicky I’m 23 year old now i was born with gastroschisis in 1987.  Growing up   I was very self con cochise about my appearance even today. i have a deep scar its about 4 inches long and very think skin. not only do i i have small wholes around the scat that stretch out hand length. as i read  all the stories, and think about the different things everyone went threw, i felt like some one out there understood me. i thought i was the only one  that i was weired becoause i felt this way about my self but every one feels this way. i never knew what happen to me untill 2 years ago when i asked my parents. i would ask them but they would tell me i was a mirical. so they told me the story i was in shock and cring but i wanted to know more about it so i looked online and found this place and the hisory of gastroschisis . my mom said i could never have kids because im stomach would not strech. well in 2004 i gave birth to a healthy baby boy.  i went to the doctor and they said it ok that i was pregnate it had nothing to do  with my uterous. the scar was larger and it was hard for me to let ppl touch my belly. them not knowing i had  a scar i was scared that they would finf out and as questions. im married now and still i feel ugly becasue of my scar my husband tells me he loves me no matter what . now i want to meet people who have gone therew the smae thing  i really wanna see pictures  of adults with scars and i wanna get reconstructive sergery jsut to have a normal stomach. does any one know of any doctors . as an adult with gastroschisis  i feel im different from every one like in middles school i always had to use  a stall to change in p.e class and boys and relationships were not confortable eather. but i had to suck it up becasuse i am who i am..

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15
Mar

Danny Boy

Hello,

I have  just come across your wonderful website ! I only wish there was a site just as this one when i found out my son had gastroschsis back in 1996  ! there was very little information and no  web site so to speak back then.

My son Daniel turned 13 on the 1st January 2010.

Reading the stories and letters on this site took me right back to being pregnant with Daniel , and remembering how petrified i was of this thing they called Gastroschisis.

Daniel was born in the ealy hours of  New Years Day 97 3 weeks early, a natural birth and weigihing in at 4lb 4oz, a tiny little doll, he was operated on within hours of entering the world and came  on to the neo natal ward around 8am covered in tubes which were all bigger than him and laying on what seemed like a giants bed !. Although being scared of the tubes and  alarms which were all over  little Daniel,  he  was determind to grow and come home quickly there were a  few scary times  followed by jandice but finally  Daniel started  feeding from me  and slowly the tubes, drips and all the equipment disappeared from his tiny body and he was free. Daniel came home exactly 2 weeks after he was born.

14
Mar

Trey's battle with Gastroshisis

Hello everyone im blogging in hopes that i may be able to calm someones nerves about there upcoming delivery of a gastroschisis baby. I would be lieing to you if i told you that what you have infront of you is going to be a piece of cake. But i can promise you it will be worth every bit of stress…. Here it goes… When i was 15 weeks pregnant i went to the er because i was having some stomach cramping. They did an ultasound and the tech was unbelievably quiet which left me uneased. She wouldnt answer our questions and told us that the doctor on call will come to speak to us. We did find out one positive thing in that ultrasound and that was that our little baby was a Boy! We were so excited but the excitement ran alittle dry when the doctor came to speak to us. Ill never forget how easy those words came out of his mouth. (Talk about no bedside manners)… Your son has Gastroschisis. I really cant tell you much about the condition but i have spoken with your ob and they want you in there office tomorrow morning. So we went and they referred us to a high risk perintologist not far from our house. He was great and we liked him which was good because we would see ALOT of him from this point on. I had an ultasound every three weeks untill i got to 34 weeks then i was getting a weekly scan and two NON-stress tests a week. Trey looked great in all of his scans and passed all his nst tests. Then came the big day!! Feburary 22nd 2010 at 7:55 a.m. weighing in at 7 pounds 1 ounce at 36 weeks along through a planned c-section delivery, our miracle baby was born!… We had chosen to have our baby at Florida Hospital South because they had a nicu level 3 which would give Trey the best chance at beating this condition. I didnt get to see him and neither did my boyfriend before they whisked him away to the nicu where they cleaned him up and the surgeon was able to exam his bowels. They were able to put most of all his bowels back in during the initial surgery but they had to put about 2 inches into a silo that would be pushed in slowly for a few days untill his next surgery. When the surgeon was examining his bowels he noticed that Treys Small intesine had an atresia (which is when the bowel twist and dies) They told us that he would have surgery in three days to repair the atesia and close up the hole. But Trey started to have meconium coming from the intesines in the silo (which meant there was a whole somewhere in his small bowel) and they decided to do the surgery a day earlier to prevent infection. That was the most scary day of my life.. I couldnt talk eat or think straight untill Trey was out of surgery. The surgeon came out 2 hours later and told us that he did great and that they were able to repair his atresia and reconnect the small bowel however because of all the surgical procedures done to the small bowel he didnt want to connect the small bowel and the large bowel for about 6 weeks. Hence the reason why my son has an astoma (which is the ending of his small intesine still out of his skin on the right side of his belly button). They would put an ostomy bag over it for 6 weeks and then reconnect the small and large bowel but he would be able to come home with it. Believe me it sounds alot worse than it truly is. After that surgery Trey lost alot of blood so they gave him a blood tranfusion and everything when uphill from there. In a matter of two weeks he went from a pale very sick baby to a baby that was breathing on his own, holding his own body tempeture, and finally about to start feeds. We started him on pedialyte 1 ounce every three hours for a day and he tolerated it well then we started him on Breast milk 1 ounce every three hours then 2 ounces every three hours and then adlib (which means how much he wanted every 3 hours) My baby was doing soooo awesome. They told us that we would be able to bring him home.. But then the night before we had a set back he started dumping (which means he was pooping more than was he was taking in) Which meant his intesines were malabsorbing the nutrients and he started to lose weight. The doctors assured me that this is a very common probelm and that the hard part of the recovery process is already done. This is now just something that takes time and we just need to find the formula that works for him. Well they started him on a formula with everything really broken down so it would help with digesting and gave him imodium to slow down his bowels to give them time to absorb his nutrients and just as the doctor said it started to work. Instead of losing weight he gained some and his out out was cut in alot half. We are still in the hopital today as this all has happened within the past almost 3 weeks and were getting soo close to being home. I know its really hard and believe me i sometimes just want to run in the nicu and take my baby out of there. But you have to have faith and remember that God didnt bring them here for no reason. Find the good in the situation and most of all be strong because your baby needs all the strength they can get. God makes miracles called babies and gastroschisis babies are no exception.

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12
Mar

HELP?!!!!"/

iam 16 expecting a baby with my boyfriend james, iam 14weeks i found out on the 9th that our baby has gastroschisis we’d like to now abit more about it because iv been told it has a high chance of downs:( i would like to know how long it will be in special care for after i give birth too please?”/ we’d realy apriciate any info that you could share, thankyou:)

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11
Mar

alaseys story

my granddaughter was born with gastroschisis.on 09/09/06 she is 3 now and it was a hard path my son was 16 his girlfriend was 16 and i was 33 at the time and never heard of gastroschisis my suggestion to anyone looking for anwsers is not look online!! i went to the library and read medical texts hard but worth it dictionarys are good for medical terminaology.alasey had alot of complications they put her small large intestines in her kidney and overy all in without a silo without stretching first her bowels started dieing in small sections infections and her bowel started leaking into her stomach when she was born she had a 70percent chance at living slowly it went down to 5% it was hard daily to watch this little person die she had suction tpn lipids and it was hard life support at times and before she was 6 months old she had 5 major operations to repair her by the time she was 7months old she was released with suction, tpn, lipids, stoma, g-tube,eliostimie,gugiostimy sorry about the spelling not sure if its correct but it was alot and we her family did it all at home my kids being kids did just what teenagers would do tried to ignore the problem at 2 and many hospital stays and a few years of fear my mizz alasey is threw with it all.a few weeks ago she had minor problems another operation due to scar tissue other then that she is perfect so parents grandparents it will be ok babys and i always thought that she did pass away that at least i got to be with her for a small time and thanked god for allowing me to be apart of her life even if it was for a moment.she changed my life alot and would of never been the same had i not known her.so be grateful love them as much as you can for whatever the time they are here and never feel sorry for them or youself cause they dont ever show self pitty only strenghth.thats all thank you for your time and remember god does give us strenght in our time of need i was not a big believer befor alasey i can tell you i am a big believer today even if she wasnt here i would have comfort in knowing she was with him my mom my dad and my family waiting for me

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