Short Gut Syndrome Parents' Support Group
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February 27, 2010
10:30 a.m.

Taylorsville Library
4870 S. 2700 W.
Salt Lake City, UT
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Importance of oral feeding

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stimulating oral senses
By: barb          (8:57 PM 06/04/2010)
I just want every new parent of a short gut baby to never underestimate the importance of aral feeding. My daughter Shelley was born with hirschsprungs disease and was tpn dependant as well as nasal gastric tube fed from about 12 days old. When first born my midwife who is also my cousin let Shelley suckle on me before whisking her away as a code blue emergency. Within a few hours doctors suspected hirschsprungs but a biopsy was needed to confirm. She didn't pass meconium instead she was vomiting bileous green muck. I was allowed to feed her minimally but this caused her more vomiting and discomfort. So as much as my baby want to suckle she couldnt. As soon as enteral feeds started, at 1ml per hour my husband and I were adamant that our baby would suckle every moment she could. So every hour we would syringe one ml into a teat for her to suck down. eventually this increased to 3ml, 5ml, 10ml.... As the ml amounts got larger we would leave her connected to her enteral feeds and gave her a bolus feed orrally at the minimum evry 4 hours. or all the stories of oral adversion we had heard, we were determined to never let her lose this basic reflex action. Since reading so much, I fully believe this has helped Shelley reach where she is now. Nurses don't have the time to do this for our children. If a child is pump fed that is usually enough, but I encourage every short gut parent to push oral feeding. From five months old, we would let shelly suck the salt of some pretzils! Gradually introducing solids at 6 months. Shelley loves food!! Another tip to share with new parents, if you are expressing milk for your short gut baby, store in containers no bigger than about 25ml. If your child starts their journey recieving only 1 ml per hour, 25ml will see them through for a day. Unfortunately I was never told this and it meant that the containers that I had freezed contained about 250ml. Each day a container was thawed, 25ml used in a day and the rest thrown out!! iT WAS HEART BREAKING. I expressed for three months before it all got too much and my milk lasted Shelley about 4 months before changing to formula. I think if someone had warned me to freeze small amounts, my breast milk may have lasted her 10 months. Shelley currently has 100mls per hour of her formula orally during the day as bolus feeds as well as sipping on hydralite continuosly through the day. This is constant work for me as the parent but it is worth it. At night she is connected to her pump and recievss 60ml per hour of formula. If during the day she is unwell or it is extremely hot, we will occassionally connect her to her pump then. Interested to know other peoples thoughts on the positive effects of oral feeding.
oral feed is a must
By: punam          (8:42 PM 06/26/2010)
i agree with you. here at childrens boston, doctors have increased my babys oral feeds from 5cc three times a day to 10,20,30cc within a week. she also is on 1ml/hour gtube feeds. and i too discovered the small container storage last month too and now after pumping i distribute it in a couple of bottles and freeze. the bigger bottles iam saving for later.
Don't give up
By: Chlophie          (8:50 PM 07/31/2010)
Our baby was initially started with oral feeds at about 1 month. She didn't have any food before then. While she didn't get bottles, she did lover her pacifier. We were thrilled to discover that she loved her bottle too. She even got pretty good at breastfeeding for a couple of weeks. I think it's very important to give oral feeds as often as possible. The total amount may not be as important as the frequency. Babies need to connect the instinct with food. Our daughter is now 6 months old and may be looking at a transplant and possible tube feeds for a few years. However, we are lucky because the docs here in Omaha believe that it's really important to encourage her oral eating skills. She can get as many 10 mls bottles a day as she wants. It's awesome because she gets excited about her bottle and will actually grab it and put it in her mouth.
I pumped (and am still pumping some) for 6 months. I didn't pump much at first, but now I'm glad that I did store smaller amounts because I get irrate when the nurses mess up things and I end up throwing away expressed milk. Some of them don't understand the work that it took!

Re: Don't give up
By: Emily H          (11:51 AM 08/04/2010)
Amen to that post! Even in the tiniest of portions, eating makes a big difference for my son. Sometimes, all his gut can tolerate is 5 cc's every few hours. Yet, because we kept at it, he loves to eat. He actually signs "food" and "drink" to request his 10 cc's of elecare or tsp of strained meat. Someday when he's able to eat more, this will make a big difference for him as he makes the transition to eating.
So important!
By: becky          (8:10 AM 10/30/2010)
My son was initially started on 2mls every 3hours when he was 4 days old. After his reversal of stoma and episode of peritonitis which left him with an open wound and VAC therapy he was found to have an obstruction which the surgeons were unable to investigate further until he had grown and the bowel had been given chance to rest. Meanwhile I was expressing ( and continued to do so for 6 months) in the hope he would be allowed to try and breast feed. The neonatal nurses fully supported this and understood the importance for both Joseph and myself as did the surgeon and he was allowed to breast feed but had to have his stomach aspirated about 30 minutes after each feed, but boy did he love it! Took to the breast straight away and as a result continued to want oral feeds. I have had some serious difficulty in the last 2 months getting him to drink from a bottle no amount of coaxing or variation of bottle or feeder cup is helping and although he still enjoys his oral solids i'm really worried about the risk to his hydration when he simply refuses to drink. Feel awfully guilty that maybe if I had been able to maintain my milk supply he would have taken the breast again. But we are where we are and any tips would be greatly appreciated! Would like to add though that he does have a fantastic appetite and enjoys his food despite problems with vomitting and I firmly believe that this is a result of the sham feeding he was allowed.
Re: So important!
By: barb          (6:40 AM 11/11/2010)
Hi Becky, I don't know how helpful this is , but I have a friend with a new baby (perfectly healthy) who had to go back to work when the baby was 6 months. She would flatly refuse a bottle so they did lots of back and forth trips for breastfeeding at work. Upon a midwifes advice they tried the baby with a cup, which was successful. She would drink a bit like a cat lapping milk! They live in a different state so I have never seen the method in action, but it saved my friend a lot of stress!
Oral aversion and encouragement
By: charlyn          (1:58 PM 02/02/2011)
When my son was able to started oral feeding at 3 wks, the nurses and docs had us start him out on 1 ml and it increased to 5, then to 10. Eventually, it went all the way up to 65ml at every feeding (I can't remember how many times a day). The whole point was to get him off of the nasogastric tube. Then, he had water-loss stools, dehydration, and he just got really sick. Even though only 2-3 cm of his bowel was removed, he couldn't handle large amounts of milk. It was just passing through his system and he wasn't getting any nutrition. So since then it's been a roller coaster trying to get the right amount and giving him TPN to cover the rest. Anyway, since he got sick the first time we tried bottle-feeding him he's got oral aversion. Carsen is a year old now and on continuous feeds 24/7 (no bolus :p). He has reflux and hyper-sensitive gag reflex. He doesn't eat anything by mouth and swallows very little. Anything that gets to the back of his mouth he gags and more than likely throws up.

When we saw his feeding therapist for the first time a few wks ago, she said the only thing going for him was that he still liked putting things in his mouth and chewing/biting. For the parents out there who didn't get a chance to breastfeed or bottlefeed, skipping that and going straight to purees and thin liquids might be the way for you. That's what we're doing with my son. We are now just trying to encourage Carsen to discover/play with his food so eventually he'll start putting the food in his mouth and he'll taste it on his own. The idea is to have him enjoy putting yummy food in his mouth. If we force him to do it against his will he'll reject it completely and it will be harder later on. To help with the gag reflex giving him long objects (with supervision!) like spoons and biter biscuits should help Carsen get used to something further back in his mouth.

At 65 ml/hr on continuous feeds, bviously, Carsen doesn't know hunger yet. He won't know for a while because his GI doctor wants his weight to be in the 25th percentile before starting bolus feeds. He's come too far and we don't like taking too many risks, haha. So, until then, sitting Carsen with us during lunch and dinner is all we can do. Hopefully, over time, he'll be eating more than just a taste.
What I find helps to stimulate oral senses
By: Barb40          (11:46 AM 05/10/2012)
If careen likes putting things in his mouth, then maybe try him on salty pretzels. Short gut kids crave salt and really like the taste! After every surgery where my daughter loses her appetite, a suck on a salty pretzel really helps the bowel start working again due to the enzymes released from saliva etc. it's not so much the body of the food they need, I think it's the stimulation of taste. Good luck I hope it's useful info!
By: Gwen          (5:04 PM 09/26/2013)
I'm the grandmother of a 2 year old, frustrated, concerned and so prayerful in getting this child to open her mouth and eat. She holds her teeth together very close, what can I do?

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