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Bowel Surgery
- Thread starter anonymous
- Start date
Try not to worry! But being informed helps. I was totally clueless...we didn't even know mylee had cf until 6weeks old, but she had surgery at 2 days...so here's how it wentI delivered at a hospital that has a great NIC-U (we knew the twins would be premature and probably tiny. I went into labor at 30 weeks and delivered at 35). However, at 2 days old Mylee still had not passed her meconium...which also meant that she was not eating well because nothing was passing through her. Our doctor made the decision to have her sent to a children's hospital because AT THAT POINT they weren't sure what was wrong with her and did not want to do exploratory surgery on a 3lbs baby.But the new dr. drew a picture for my husband (i hadn't been discharged yet) and explained that mylee's colon was mal-rotated causing a blockage. So they made a 1inch incision in her belly (right above her belly button...a future deterrent from a bikini we hope) and fixed it. They also removed her appendix because it was in the wrong spot because of the mal-rotation. The surgery lasted about 4 hours from start to finish.Her incision took time to heal. And they didn't try to feed her anything really by mouth until they were sure it was healed (i'm trying to remember if they just kept her hydrated with IV or if they actually used a feeding tube through her nose during that time).She has a cute little scar on her belly that at 2yrs of age, she proudly shows off to everyone she passes.That is about all i can tell you. I wasn't there for the surgery...wasn't allowed in the children's hospital with my newborn son because of RSV going around...so I didn't even get to see her until the next day. so i can't really tell you about the affects of the anesthesia or anything...but i hope this helps.Christie
Hi Debbie,I am due in July with a baby that has CF too! I am really scared about the severity of the disease and the immediate possiblity of surgery as well. Have you had any feedbacks from doctors, etc. regarding it. The reply posted doesn't make it sound so scary?Would love to support each other thrugh our pregancies!Blythe
Hi Blythe,I haven't been able to get much info. The closer my due date gets the more frightened I become (April 14th is my due date). I would love to talk with you throughout. My email is debhain@comcast.net email me anytime. This is a very scary thing, but I'm trying to be very strong. I have a 2 1/2 year old little girl and I keep wondering how this will effect her. Do you have any other children?
AbsintheSorrow
New member
I had that exact problem. I am 20 now, but was born, and after two days, had not passed the meconium. They made an incision on my stomach, from the belly button over to one side, basically. It's not that bad. It's a pretty smooth scar, and though it stretched as I grew, it's not that big of a deal. And I don't care what people think, so if they see it, I don't give a damn. <img src="i/expressions/face-icon-small-happy.gif" border="0"> Also, it's a rather small percentage that your baby will have a problem with meconium. Asking my mother now as I sit here, she said back when I was born it was only 10%. It may have grown, but it's still a relatively small number, I'd imagine. -Emily
Dear Debbie,Until I read your question I had forgotten how fearful I was that my baby that we knew had CF (she was our third, 2nd with CF) would not pass her stool and have to have surgery. The CF team kept assuring me my chances were good ( only 10% of CF babies have this problem). She pooped just fine and that fear vanished I pray the same for you.T<img src="i/expressions/rose.gif" border="0">
Hello, I'm sorry to hear about your baby and I hope for the very best for you and your baby. I do know one very important thing to watch for while your pregnant. My sister was about 31 weeks pregnant and had been trying to go into early labor and noticed that her stomach had considerable grown. When she went to the doctor she was told that (found of ultrasound) there was an obstruction on his bowels. The fliud was not passing through him the way it's supposed to so it kept building up. That was when she first found out anyhing was wrong. Logan was born 7 weeks early and had surgery the next day to remove 3 sections of blocked bowel. He turned 2 months old on Feb. 11 th and is now doing much better. He has has 3 surgeries on his bowels, the last one on Feb. 11 th, and for the first time, last night going home was mentioned. There have been a lot of ups and downs but it's finally looking straight up. Logan's surgeon said that his case is one of the top 10 worse he's ever seen. This is a serious illness but there is always hope. I'll be praying for you. Prayers are wonderful.
The key is not to worry. I am the one who posted above (with a description of what my daughter went through)...don't worry about the what ifs...enjoy being pregnant and look forward to this little life you are about to meet...I had sonograms done every two weeks throughout my ENTIRE pregnacy (because of the twins), at no point was there concern about a bowel blockage. Mylee wasn't growing like she should have been because of an abnormal placenta...that's all they discovered.I went into labor at 30 weeks and then was under the supervision of a team of drs with ultrasounds, amnios, and all sorts of other craziness...again at no point did they detect any problem but the abnormal placenta.So it was a shock to discover the bowel blockage at 2 days...and cf at 6 weeks...BUT remember that you are going in armed with information that I did not have. Your baby has CF...so a bowel blockage is possible. Keep it in the back of your mind as a possibility, but not in the forefront as a worry.Good luck and many prayers to you.Christiemommy to malachi wocf and mylee wcf
Hi Debbie, I went to the doctor yesterday and they are watching for build up in the intestines via sonogram. Although this really may not detect anything like many stories posted--it may not show up until after birth. I am 19 weeks and the Dr. said my baby has eceogenic bowel(SP?) Does that sound familiar to anyone? I also have a 2 yr. old too and i am worried about the effects of her as well. We had her tested and she doesn't have CF and is not even a carrier. Does anyone know if this means that CF babies having bowel surgery/blockage are for sure going to be given pancreatic enzymes? Thanks to all that have posted. it really helps me to be prepared for what's ahead!To Christie, I see that you have another child without CF. Can you give Debbie and I some insight on what the effects may be on on our other children without CF? To baby Logan,God bless you, i am praying for you and your strength to go home to your Mommy and Daddy.~~Blythe
Hello, this is Logan's aunt, thank you all for your prayers. I want to let everyone know that they have helped so much. Logan gets to nurse for the first time since he was a week old. My sister is just beside herself, she's tried to so to keep her supply going. God does answer prayer and there is always hope. When you all feel down look the other way. God bless you all.