Neonatal Ostomy High Output

Hi guys, I made this account for my baby since she has had an ileostomy for about 2-3 months now. I have done a good job at being able to put a bag and achieve a non-leaking bag or popped bag for the most part. Anyway, the reason why I am posting this is because we recently got admitted back into the hospital because of dehydration and she's on extra fluids now. Also, she's been dumping and they want her to fast for 24 hours… (not happening). I read from adults' perspectives about high outputs and what they do to maintain their electrolytes and sodium and slow down their output, but what about babies since they are very limited on medications and what's safe to take at such a young age. 

I think you really should have a medical professional's advice on this. Try asking one of the nurses at the hospital where your baby was treated. There should be a dietician attached to the hospital that could advise you on this. Good luck.

Terry

Hey Mama! Are you at a pediatric hospital?

Yes, we are at a children's hospital that has treated her since she was a little baby in the NICU. They stated that they don't know what caused all of the dumping to happen with the baby. I have been doing my research to be able to advocate for her in the best way possible, avoiding any surgeries or attachments they would want to put on her before even trying medications or other routes for her.

Do you know what type of specialists are overseeing her care right now? When you say dumping… can you help me understand better what you mean by that? It sounds like your baby girl has a good mama looking out for her. Do you have local support?

Sorry to hear that you and your baby are going through this. It sounds like your sweet baby needs a pediatric GI.

I see the area the original poster lives in from the profile. In that same area, if you google “Advanced Pediatric Gastroenterology Specialists,” contact information should pop up. I hope this is helpful. I don't know if I'm allowed to post the exact address on here because I don't know if that's considered promoting a business. I don't know if that's OK in the group. I'm not from that area; I just did a search myself. Maybe as a local mama, she already knows about this pediatric place, but if not, I just wanted to share.

Aw, thank you! Yes, she's had a high output ever since she got dehydrated. It was like a water fountain, and we don't know what's caused it. She's on Pectin, Imodium, and Nexium as well. She still is on her 24-hour fast, and the results have been good, but I can't stand seeing her cry for milk, so I have just been having to calm her down and have her sleep. She's hooked up to IV fluids and is super swollen. We do have a pediatric GI doctor on board with her care. I hope she gets off the IV soon and starts to eat by mouth again. It's been a heck of a mess dealing with the physician's orders and fighting them!

Wow, I wish nothing but the best of luck for you and your little one. I have an ileostomy, and there are days I live in the bathroom and can't imagine a poor little one even trying to break down what an older child or adult can with their GI tracts.

I'm so sorry to hear that your precious baby girl is having such a tough time. It's incredibly hard for parents to watch their sick child in NICU. My youngest son was in NICU for about four weeks. His birth weight was 3.0 lbs and his lowest was 2.8. His medical issues were nowhere near as serious as yours. His life-threatening conditions didn't show up until after he was home for a month. I was very blessed to have a group of PICU nurses that gave me the support I needed and advocated beautifully and at times very sternly. The Footprints Poem describes my life for the next four years. I will be praying for you to have the physical and mental strength to do what you need to do every day. I have a fabulous group of prayer warriors that will start praying for your family tonight until you don't need us. Lord, please give this Mama comfort and strength to handle each day. We ask for healing of her precious baby girl that you blessed her with and love dearly. Lord, please guide the doctors and medical staff to find a cure. I ask this in the Mighty Name of Jesus. Amen

Hi, I just want to join the others in welcoming you to the site. I also agree with the advice. I am so sorry your precious baby is going through this. I sympathize with you and your suffering to see your baby like this. Prayers are being said. Please keep us posted.

Thank you so much. I really appreciate it.

Hi guys, an update on what's happening and a little history behind my daughter's condition. She suffers from Hirschsprung's Disease and that's why she has an ileostomy. Currently, like I said, we were readmitted to the hospital after being home finally for two weeks. Baby was in the NICU for 3 months since she was born. She got admitted because of dehydration; finally, she is back to her normal levels. Now we are on another focus, which is her high output. I was secretly giving her an ounce of milk because she would scream for milk, and I'm the one at the end of the day dealing with baby and her suffering, not these doctors. They decided that she can't eat until tonight, that's if her output is less than 10 mg/ml/day. I need someone to PLEASE INFORM ME if this can be solved. Baby has been on pectin (gelatin powder) to thicken her stool, baby cereal, and fortification with formula. Mind you, she takes Imodium, and now she is at her max limit with it. I know I read a popular topic of high output for adults, but what about neonates? She's an infant now. They offered TPN, BROVIAC, and even a G-Tube. She has no oral intolerance and eats perfectly. The only thing I accepted was an NG tube, and that's because she was doing continuous feeds. I need input and advice on how I can fight back and advocate for her. It seems like they're just experimenting with her. It's affected my mental health and my husband's, and it's seeming like malpractice to just keep trying new things with her instead of finding someone that has experience with her condition. I know there are hospitals with specialties in her condition, but they are out of state. Thank you for listening to my story that has not been ever shared online.

Oh my, what you, your husband, and your baby girl have been through. It's tough enough being a new parent. My heart and healing thoughts go out to you. I did a quick online search and I see Hirschsprung specialists in Boston, Philadelphia, Seattle... I see what you mean. Not in Florida. I saw a site called nationwidechildrens.org, which is the Center for Colorectal and Pelvic Reconstruction at Nationwide Children's Hospital. They're in Ohio but seem to be the experts. They have a form you can fill out to speak to the team. I know she's so young and you have a lot going on and may not want to even think about contacting them, but I figured I'd share that info just in case. Btw, a big round of applause for you taking incredible care of your sweetie and managing her bag, something that takes us adults a lot longer than two or three months to figure out! 👏🏼

What about “Orlando Health Arnold Palmer Hospital for Children”? They came up in my search on the condition. Can they help? I found a story in another search I just did: https://www.hopkinsmedicine.org/health/conditions-and-diseases/hirschsprungs-disease/patient-story-dariel

This story mentions the pediatrician that is in Florida, and her name is Nicole Chandler, M.D. She knows this condition, and her name is a blue link down in this story. Click on it; her contact is there, and maybe she can help.