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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?????????
Hi I have a 3 year old with short gut. Its has been a tough road. She was in the hospital til almost 9months old. she came home and was okay for a year after that we have been back and forth in and out of the hospital for getting backed up and vomitting. I am tired and dont know where to turn because im not getting the info i need im just affraid something bad is going to happen. has anymone else had this problem?? please help
Hi all, I have a now amolost five year old with short gut. She was born with her intesines on the out side of her body, all but 17 centimeters had died, so they where removed. She was not expected to live. We have been through the TPN, through the iv to the heart, Each 90 days she would shower with infection in the Iv line. We stid in the hospital, with only three 72 hour trips home, just to be returned by helicopter or life flights. After 18 months of this we chose the setp procedure, a bowl lengthing surgry. Thisw has saved her life. Sge still have her GT tube, and has over night feedings. We still have to worry about bacterial over growth in the intestines which we are treating with a daily medication. Along with other medications we are doing failry well. Although her immune system seems to have issues fighting normal child illinesses we have stayed out of the hospital for over two years.
I have come to know the signes of trouble before they get away from me. She has pedisure during the day as the absorbtion of anything PO is low, but we are doing very well. She is almost 5 very smart, weighs 38 lbs and is right on track hieght wise. She is bowel potty trained but do not think urine training wil happen as there is not enough inside her tummy to feel any pressure on her bladder. Pus fluids go straight through for the most part, so her bladder is never full.
I invite any opne who has questions or would like any ideas or information to contact me. ***@**** I will be setting up a blog for this topic so we can all talk and post our expereinces, look for it at soon!
God bless all those who are facing the issues we are living with. There is great hope and blessings for these little ones. Jean albee
I have come to know the signes of trouble before they get away from me. She has pedisure during the day as the absorbtion of anything PO is low, but we are doing very well. She is almost 5 very smart, weighs 38 lbs and is right on track hieght wise. She is bowel potty trained but do not think urine training wil happen as there is not enough inside her tummy to feel any pressure on her bladder. Pus fluids go straight through for the most part, so her bladder is never full.
I invite any opne who has questions or would like any ideas or information to contact me. ***@**** I will be setting up a blog for this topic so we can all talk and post our expereinces, look for it at soon!
God bless all those who are facing the issues we are living with. There is great hope and blessings for these little ones. Jean albee
Thank you so much for your comment. It is so good to hear how well babies with similar problems to Brandon are progressing. Kennedy sounds like she is now doing so much better and I cannot wait for the day when Brandon is home and sitting, crawling etc.
Being patient is the hardest thing ever right now, as Brandon looks well, he is putting on weight everyday and is now on 15ml per hour of Neocate.
Our main frustrations is not fully understand exactly what everything means, as the doctors etc do update us, but the terminology is mind blowing most of the time. I think I shall have to right myself a list and get them to explain them to me! If anyone has a list of questions regarding TPN, Neocate, Illeosecal value, I would love to see them.
Being patient is the hardest thing ever right now, as Brandon looks well, he is putting on weight everyday and is now on 15ml per hour of Neocate.
Our main frustrations is not fully understand exactly what everything means, as the doctors etc do update us, but the terminology is mind blowing most of the time. I think I shall have to right myself a list and get them to explain them to me! If anyone has a list of questions regarding TPN, Neocate, Illeosecal value, I would love to see them.
Hi Everyone,
Glad I found this site. I thought that I would share our story. My daughter Glenda was born in Vancouver , British Columbia. She was six weeks early weighing 4 pounds 7 ounces. She was also born with her small bowel on the outside. She had surgery the night she was born to put her bowel back inside. She then required a second surgery and we found out that she was born with only 50 cm. of her small bowel and it had 13 blockages. So the dr.s repaired the blockages and also had to ressect more than half of her large bowel and illeosecal valve. She had more surgeries after that and severl central lines. It took a very long time for Glenda to be well enough to come home. She is now 15 years old and thriving. God love her. My advice to parents facing this is just try to be patient. Take it one day at a time. Some days will be very tough and others will be days to celebrate. Don't hesitate to ask the questions that you want answered. Pray lots. Good luck to you all and God bless.
Glad I found this site. I thought that I would share our story. My daughter Glenda was born in Vancouver , British Columbia. She was six weeks early weighing 4 pounds 7 ounces. She was also born with her small bowel on the outside. She had surgery the night she was born to put her bowel back inside. She then required a second surgery and we found out that she was born with only 50 cm. of her small bowel and it had 13 blockages. So the dr.s repaired the blockages and also had to ressect more than half of her large bowel and illeosecal valve. She had more surgeries after that and severl central lines. It took a very long time for Glenda to be well enough to come home. She is now 15 years old and thriving. God love her. My advice to parents facing this is just try to be patient. Take it one day at a time. Some days will be very tough and others will be days to celebrate. Don't hesitate to ask the questions that you want answered. Pray lots. Good luck to you all and God bless.
Congrats on you new baby boy. Women naturally have an inner strength that comes out when needed. Trust me you got to.
I had my little girl (Kennedy) August 2009, Born at 26 weeks. She is now 10 months old. And it still seems like the beginning for us. She still has a long way to go. After 3 weeks of life she developed NEC, which left her with 18cm of bowel. She is on TPN for 18hours a day and on G-Tube feeds for 24hours a day at RATE 26ml. Kennedy is now 18pounds, but she was 2pounds.
She is not crawling, walking or rolling over yet, but she is sitting up on her own. It’s funny how I get enjoyment watching her just sit up and reach for things. She smiles a lot to. At the beginning I think they tell everyone that their child might not make it.
And soon you will be having the same precious moments.
I cried a lot in the beginning and there was even times when she looked life less. But she is a fighter. Reading the stories on here taught me that once a baby put in there minds that they are going to keep living and keep fighting They Do.
Keep fighting baby mommy is right behind you:-)
I had my little girl (Kennedy) August 2009, Born at 26 weeks. She is now 10 months old. And it still seems like the beginning for us. She still has a long way to go. After 3 weeks of life she developed NEC, which left her with 18cm of bowel. She is on TPN for 18hours a day and on G-Tube feeds for 24hours a day at RATE 26ml. Kennedy is now 18pounds, but she was 2pounds.
She is not crawling, walking or rolling over yet, but she is sitting up on her own. It’s funny how I get enjoyment watching her just sit up and reach for things. She smiles a lot to. At the beginning I think they tell everyone that their child might not make it.
And soon you will be having the same precious moments.
I cried a lot in the beginning and there was even times when she looked life less. But she is a fighter. Reading the stories on here taught me that once a baby put in there minds that they are going to keep living and keep fighting They Do.
Keep fighting baby mommy is right behind you:-)
Thank you for all your comments on this site, it has helped me a lot. My first child Brandon was born 3 weeks ago today and he has SBS. This was spotted hours after he was born, he was transferred to a specialist London hospital and had his first two surgeries within the first three days of his life, leaving him with just 28cm of his small intestines.
Thankfully he has recovered very well from his surgeries, and is now on 11ml every hour of neocate which he takes through a bottle if he is awake and on 1.6ml of TPN every hour through his central line. The doctors and surgeons have been very good, but I had no idea how long my poor boy would be in hospital, nor the long road that still lay ahead of him. You have all given me insight to this and now I just need the strength to continue.
Our little boy is a strong fighter and we will continue to be strong for him. With prayer and supplications he has made it this far and we know that with more prayers one day he will be back home with us.
Thankfully he has recovered very well from his surgeries, and is now on 11ml every hour of neocate which he takes through a bottle if he is awake and on 1.6ml of TPN every hour through his central line. The doctors and surgeons have been very good, but I had no idea how long my poor boy would be in hospital, nor the long road that still lay ahead of him. You have all given me insight to this and now I just need the strength to continue.
Our little boy is a strong fighter and we will continue to be strong for him. With prayer and supplications he has made it this far and we know that with more prayers one day he will be back home with us.
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