I am sorry about that. I see in your original post that you said he is bottlefeeding. I think I was so wrapped up about his weight that I clearly blanked on everything else in your post.
One of the benefits that I have is that I get to work closely with a lot of different specialist. I would refer this patient to a pediatric nutritionist. Since he is bottle feeding it will be very easy for a nutritionist to determine the amount of calories that he needs for adequate weight gain. Yes, I do know older babies that use fortifications. Because of this severe weight issue I strongly believe the nutritionist will be able to provide you with the best plan of care. In the meantime I would ask mother:
1) How many ounces of breastmilk does he drink in a 24 hour period? A minimal would be 25 ounces but the nutritionist would be able to tell you how many calories for check up growth he would need and as a result how many ounces that would be. Since it is likely to be lot more than 25-30 ounces they would be able to determine what the best fortification would be 22-26kcal an ounce.
2) I would also ask if he appears tired during his feedings. He may be tiring out and therefor not able to finish his feeds. If this is the result then looking at the type of bottle he is using would assist. There are different types of special needs feeder. Some the baby does more work and others the person feeding does more work. If he is tiring out then he would benefit from a higher Kcal supplement and a bottle the feeder does more work. I would also suggest a referral to a pediatric Occupational therapist or a Speech-language pathologists - there job would be to determine which bottle works best for this child. He may even need to have an NG tube placed.
This link is about a project which aimed to provide Special need feeders to babies in the project it says: "An important observation they have made over the years is that many of the infants who come to be evaluated for surgery are profoundly under weight and malnourished. The children can’t suckle in a conventional manner due to their deformity. Thus they can’t have surgery." So you may be able to dig a little deeper and see if they have research related to this project. http://www.trianglecmf.org/main/2013/07/02/cleft-palate-baby-bottle-project-a-goal-of-100-bottles-by-1018-dinner-meeting/
I also found this link it is a forum mother to mother with babies with cleft palate. Many mothers talk about how long feedings are taking and how much of a struggle it was for the mothers. This may help mother to understand when baby stops drinking he may be tired but not full. It does talk about their babies being underweight and how some periods were worried about having to weight for the surgery due to weight problems: http://forum.cleft.ie/pop_printer_friendly.asp?TOPIC_ID=169
So it does appear after reading through lots of links that babies do tend to be underweight which can put the surgery on hold. As underweights infant tend to have results of longer healing time and increased risk of infections.
Jessica Callahan RN, IBCLC
NC, USA
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