Hi all,
I have some questions, particularly for those of you who might work in hospital with older babies but everyone who has time to put on a thinking cap; docs, PPIBCLCs....go ahead and give some input. The mom, who has given her permission of course, and I would really appreciate your thoughts. I am working with this mom via phone and email at this point. I need help on two fronts really 1) I am not a hospital person, I can communicate and use my professional grown up words (however tempted to be more 'blunt') but hospitals and their (sometimes apparently unofficial) rules....not so sure about - so maybe thoughts on phrasing and/or encouragement and 2) the most important part....thoughts on plans for this child and the feeding plan.
Back story: weight gain has been an issue for several months, baby (8m) has been hospitalized for 1m. Hospital has no Lactation Department, a few nurses with IBCLC credential thought they are not hired nor do they work in that capacity and are mostly in the NICU not on the floor this child is on. A few doctors are advocates but may not have contact with this mother. Crisis necessitating admission occurred in the middle of the night, ongoing testing led in the direction of Shwachman Diamond Syndrome, no confirmed diagnosis. This baby continues to lose weight. He does eat some solids but is, of course, primarily breastfed. They have been through various feeding plans, most of which gave me pause (ie d/c breastfeeding and pump and bottle feed all feeds to 'see' how much he is 'getting' - fortunately a compassionate and knowledgeable doc put the brakes on that one). I have encouraged intake weights (she was 'allowed' to do this a total of three times), frequent feeds, offering both breasts at least once, breast compressions; basically feeding him like a slow gaining newborn with the addition of nutrient dense, high calorie complementary foods. Mom understands that extra EBM and/or formula could be a real necessity. He did not tolerate nighttime ng feeds well at all. He doesn't really take bottles but will take liquids in a cup. Mom is hoping to avoid ng tube in future. The following (however unbelievable is seems, honestly I better check with hospital) is the current plan as per mom's email to me this morning:
"They want him to have 180mL EBM or formula by NG feeds at 7am, 11am, 3pm, and 7pm. Occupational Therapist has allowed him to have a little food by mouth on every second feed and on every feed start the 180mL by cup only half hour before the NG to avoid tube dependency. What ever he doesn't finish by cup goes in the NG.
He is not to consume anything outside of this.... no comfort feeding, no water, nothing. They say that at 9 months he doesn't actually need anything between 8pm and 7am and it would be normal for him to sttn.
In the past couple weeks we've been all over the map lately going from 250 ml by NG 4 times a day on top of what ever he wants to feed by mouth, down to 120 mL by NG every 4 hours allowed solid foods and only empty comfort nursing. Also had a couple nights of fasting for tests but was on IV fluids at a maintenance level (so not too hungry anyway). Nothing has been done consistently for more than a day."
Soooooo......Am I off base in my thinking that intake weights, intensive BF w appropriate complimentary foods and EBM/formula (fortified as necessary) might be considered? I feel like I'm on another planet talking to people who don't speak any language that I've even heard of. Why couldn't he comfort feed even if he was getting ng feeds? Is this a thing elsewhere?
thoughts?
thanks
Beth McMillan IBCLC
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