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short gut syndrome
When I was 19 I became pregnant with my 2nd child. I was very happy and somewhat scare because my son just turned 1 two months before Kaylee was born.
A week after my sons birthday party my water broke, I was only 5 months pregnant. I went to the hospital and they sent me home and told me to stay on bed rest and her would probably abort her self. What lovely news to tell anyone. 2 weeks later I was still losing fluid so I went back to the hospital. I was told that I couldnt go home and that I would be taken to a hospital 2 hours away. I thought I was going to die knowing that I couldnt be with my son. Know chioce I had to go.
I was at the hospital for 7 weeks on bed rest. How embrassing it was to use a bed pan. lol I had my beautiful little daughter on Oct 11,2000 at 27 weeks, she weigh 1 12.6oz 10in long. She wasnt breathing when she was born but she open her big blue eyes and just stared at me. I will not forget that moment. What a tiny little baby. I though the labor was going to kill me!!!!!
Kaylee was taken to the Nick U. When I finally was able to see her, fear over came me because of a of the tubes and wires, monitors, lights and the loud noises. All I could think was what the hell happened 7 weeks.
Fast forward a couple of months to december of 2000. Kaylee came home from the hospital the first week of december. She weigh a over 4 pounds, still very tiny. I asked the doctors if I could take home a monitor but I was told no that she would be fine. Everything was great, she was eating and pooping fine the only thing was she need iron drops once a day. Christmas came and went and so did New Years. Kaylee was still sleeping lots but she did wake up long enough to smile, cuddle, and eat. She still amazes me what a strong baby she was.
Hell stuck the second week of January. We all went to bed late. But Kaylee was having a hard time staying asleep, so I put her in her swing and that was the only thing that seemed to help her go to sleep. By morning I woke her dad up and told him I was going to lay down. He came in the room a few mins later and said she wouldnt eat much so he layed her down next to me and I was starting to go to sleep and just happened to look down and notice that kaylee had a blue tint to her and her stomach seemed a little big. I started screaming call the doctor. DR said bring her in. We got the and they call and ambulance. She flat lined 2 times on the way to the hospital. they got her there and she was somewhat stable but they didnt know what was wrong. Call a helicopter and we were in the car on a 2 hour road trip.
When we got to the hospital she was already in surgery. Come to find out she had a twist in her bowel, 90% of her bowel had died and it had to be removed. She came out of the surgery with 10% bowel a feed tube and on life support. She slow recovery, but she was on tpn off and on. We were told that our daughter has SHORT GUT SYNDROME.
She has had a 10% bowel lenghing a year after her 1st surgery.
She is doing very well and is in 1st grade now.
My question is has anyone else hear of these because sometimes it feels like my daughter is the only one?????????
A week after my sons birthday party my water broke, I was only 5 months pregnant. I went to the hospital and they sent me home and told me to stay on bed rest and her would probably abort her self. What lovely news to tell anyone. 2 weeks later I was still losing fluid so I went back to the hospital. I was told that I couldnt go home and that I would be taken to a hospital 2 hours away. I thought I was going to die knowing that I couldnt be with my son. Know chioce I had to go.
I was at the hospital for 7 weeks on bed rest. How embrassing it was to use a bed pan. lol I had my beautiful little daughter on Oct 11,2000 at 27 weeks, she weigh 1 12.6oz 10in long. She wasnt breathing when she was born but she open her big blue eyes and just stared at me. I will not forget that moment. What a tiny little baby. I though the labor was going to kill me!!!!!
Kaylee was taken to the Nick U. When I finally was able to see her, fear over came me because of a of the tubes and wires, monitors, lights and the loud noises. All I could think was what the hell happened 7 weeks.
Fast forward a couple of months to december of 2000. Kaylee came home from the hospital the first week of december. She weigh a over 4 pounds, still very tiny. I asked the doctors if I could take home a monitor but I was told no that she would be fine. Everything was great, she was eating and pooping fine the only thing was she need iron drops once a day. Christmas came and went and so did New Years. Kaylee was still sleeping lots but she did wake up long enough to smile, cuddle, and eat. She still amazes me what a strong baby she was.
Hell stuck the second week of January. We all went to bed late. But Kaylee was having a hard time staying asleep, so I put her in her swing and that was the only thing that seemed to help her go to sleep. By morning I woke her dad up and told him I was going to lay down. He came in the room a few mins later and said she wouldnt eat much so he layed her down next to me and I was starting to go to sleep and just happened to look down and notice that kaylee had a blue tint to her and her stomach seemed a little big. I started screaming call the doctor. DR said bring her in. We got the and they call and ambulance. She flat lined 2 times on the way to the hospital. they got her there and she was somewhat stable but they didnt know what was wrong. Call a helicopter and we were in the car on a 2 hour road trip.
When we got to the hospital she was already in surgery. Come to find out she had a twist in her bowel, 90% of her bowel had died and it had to be removed. She came out of the surgery with 10% bowel a feed tube and on life support. She slow recovery, but she was on tpn off and on. We were told that our daughter has SHORT GUT SYNDROME.
She has had a 10% bowel lenghing a year after her 1st surgery.
She is doing very well and is in 1st grade now.
My question is has anyone else hear of these because sometimes it feels like my daughter is the only one?????????
yes I have heard of this I have a daughter who is 7 she was born at 27 weeks and had her bowel removed after being born addicted to meth and crank when I adopted her at 9 mos I was told she had 3 mos to live well she is now going to school she has a gtube but a small price to pay after years of tpn.
Wow....I feel so relieved. My 15 month old also has SBS. Feb. 4, 2011, it snowed in Central Texas (a rare occurence) so I just happen to be at home with him. We played in the snow that morning, around 1 he started crying and whaling..I really thought he had an ear infection, since he had a little cold (the Dr said a few days before) I gave him some Tylenol and he calmed down a little, so I placed him in his crib to get dressed, it was Friday and he needed some antibiotics, he was still crying but calmer so I jumped in shower,, that gut feeling something is wrong took over. I went to his room and found him whimpering, extremely pale, cool to the touch and blue around his lips. He had a deer in the head light look to him. I called 911, the operator could hear him in my arms whimpering said an ambulance should be there shortly and hung up. Call back if he quits breathing...REALLY. The ambulance/fire truck/police come and questioned me like I hurt him and My kid is getting worse and your doing nothing. He was 96 degrees and 90% oxygen level. They said he looks a little cyanotic, we are going to transport him. They wouldnt let me ride in the back with him, as we drove to hospital 25 miles away, no sirens going 50 in a 70 because of the snow...my mind raced. We arrive at the ER they are waiting for him, he is now 91 degrees, and the MD is upset with the ambulance crew. They began working on him allowing me to stay in the corner,...I wasnt leaving. I noticed his stomach was bloated..so I told the MD his belly doesnt look like that. Stat xray...and transported to PICU..while I waited in limbo with the chaplain. They told me it wasnt looking to good to prepare myself. The surgeons came out to tell me he needed to go surgery, his intestines look like they have tunneled or twisted, and chances are that he will not make it. I said my Goodbye and prayed like I have never prayed before. He came from the OR on a vent, septic, his bowels had a true knot, gangrene had set in. They removed 1/3 of his small intestines and ascending and 1/2 of his Transverse colon. They left him open due to some questionable bowel. Next morning back to surgery to remove more. Septic, started TPN, Acquired RSV, Metabolic acidosis.then 10 days out He was never right, lethargic, vomitting, tons of diarrhea like 14 black ones in 2 hours, started screaming again. They did a Dr. Rapid on him again, back to PICU. His bowels fell apart and he went back to surgery, They gave him an ileostomy that time. Septic again from the central line. After multiple attempts of the surgeons saying he needs to come off the TPN, saying he has enough bowels. 2 weeks of him having to be rehydrated daily, replacing his ostomy output, had lost 2 kilos now. They reluctantly gave him his TPN back after a simple test proved he wasnt absorbing, just dumping. Still saying he has SBS, but it will be resolved when they reverse his ostomy. We reversed it, Septic again from the Central line, they where making him try it on his own again. He was so weak. Dehydrating. Had one Pedi MD tell me it is normal for a toddler to only eat 1 chicken nugget a day, her dtr does it all the time and is fine. But her dtr didnt poop 20 times a day. Had to fight to get him on a NG tube for nutrition, and wow he started playing and interacting. Now we have a GTube since I fired the surgeons and got GI services to pick him up.They surgeons kept not doing the recomendations from GI. He is still having alot of diarrhea and stomach pain. Doesnt eat orally very well at all. He does still vomit a couple times a week. They say he should have enough bowel left, but obviously it doesnt work right because is still so symptomatic. We have been home from the hospital for 5 weeks, been to 4 MD appts. They have done no labs. He is anemic and takes an Poly vi sol with Iron, prevacid, immodium 3 times a day. He is on ELECARE 1000 ml daily. He has 7-10 BM a day still. I dont feel that this hospital has much experience with SBS. Basically, anyone know where I should take him for better management....He is a happy little guy, and is beginning to walk. I just want the best for him...and I feel that we get blowed off all the time when we ask if he needs labs or what should I expect. He is the 75th percentile for height and the 3% on weight. Sorry my writing is random, but we had this for 5 months now and I am just trying to figure out what to do..where to go...Thanks for reading and letting me vent...lol. May the lord watch over each of our children and give you and me the strength, courage and wisdom to care for our children.
I HOPE ALL OF U & UR FAMILYS R DOING WELL & THANKX EVERYONE 4 UR NPUT. UR ALL N MY THOUGHTS & PRAYERS
HI MY GRANDSON IS BORN 24WEEKS AND HAS SGS HE IS DOING VERY WELL AND IS ON TPN NO FEEDING YET BUT DOING VERY WELL SO I HOPE FOR THE BEST AND I'M GLADY TO HEAR YOUR EXPERIENCES
I was also born wits Short Bowel Syndrome....I am now 17 years old...I was born October 14,1993, but what surprised me today as I was doing research is that newborn infants have a low survival rate... KAYLEE AND I PROVE them WRONG!!!!! :) <3
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