This is all one problem--of course.  I don't understand how the babe got this far w/o it being done, but why would a necessary medical procedure need to wait until baby leaves the hospital? The baby needs the ties revised--first--not last. I specialize in working with babies like this one and the very first thing we take off the table is oral restriction. Mother probably thinks baby is not sensitive to these foods now, bc there was no improvement, yet you are not likely to have improvement with restrictions still present and w.o healing the mother's gut--which is the source of the infant's gut function. Pushing food into the baby that contains allergens is a very bad idea. I would counsel the mother on nutrition (I don't believe for a minute she has no food intolerances--kids get damaged guts from mothers who have damaged guts--and given her birth story--her health is not the best. I do not accept mothers telling me they don't have allergies--I ask the questions that actually tell me if they do. She needs a wholr foods, nutrient dense diet, probably with supplements and I bet that kid is seriously deficientin zinc at the very least. he needs nutrition--but he needs it through his mother and that can be done if mom is properly nourished and the baby is properly supported. 



Date:    Sun, 27 Apr 2014 12:13:04 -0400
From:    Trisha Wierenga <[log in to unmask]>
Subject: Failure to thrive - difficult situation

PTP the whole story - very long, sorry.  Four and a half month old baby born 
12/5/14, birth weight 6# 9 oz.  Birth history - full term, placenta pulled out 
in 24 pieces, thin, cord not centered on placenta.  NICU for 8 days for 
respiratory issues, breastfed well (per mom) since birth.  Mother states weights 
at pediatrician were normal until 3 month visit.  Baby had history of green, 
mucousy stools, skin sensitivities, very frequent feedings.  Ped suggested 
elimination diet and supplementation with Neutramigen and rice cereal for weight 
gain (I know, I know...).  Mother removed dairy (including hidden), eggs, wheat, 
soy for one month without improvement.  Baby has never taken a bottle for mom.  
Visit with another lactation consultant on 4/3 - baby 9#, transferred 1.6 oz in 
10 minutes of feeding.  IBCLC assessed for posterior tongue tie/lip tie and 
discussed issues with allergies/skin.  Recommendations given to improve weight 
gain and transfer of milk.

Admission to hospital on 4/22, my co-worker spoke with mother and baby on 4/23 
and 4/24, but she did not get called to the peds floor to see a feeding.  Mother 
was also vague when talking with her.  Stated she was ready to switch to formula 
just to put weight on baby (not grasping that baby will not take a bottle or 
other method of supplementation).  Milk spun in crematocrit obviously showed 
normal calories and fat (we have never had an abnormally low reading on any 
milk).  

I saw mother and baby starting on 4/25.  Weight 4200 gm/9# 4oz.  Visual 
assessment - baby has clearly been low on calories for a long while, listless, 
blank stare, not much interaction with me.  Skin is very scaly, cradle cap that 
is treated and returns every 3 days, rashes come and go, plastic ID band 
irritated his leg, psoriasis-looking rash at hairline across forehead, tight 
mouth/lips.  Oral assessment was very difficult due to extreme oral aversion.  
Upper lip at rest is extremely tight, assessment of tight labial frenulum, poor 
tongue lift, tight posterior lingual frenulum.  Suck assessment is unsuccessful 
- gaggy, oral aversion.  Speech therapy was consulted and concurs with our 
assessment of extreme oral aversion.  Recommended oral stim, pacifier for suck 
training.  Mom has a wonderful milk supply (lots of milk in freezer from NICU 
stay - hasn't supplemented with this due to fear of dairy sensitivity).  Mother 
pumped milk for supplementation.  Feeding assessment notes a terrible suck, baby 
continues to have a weak suck through letdown - coasting off of her supply.  
Attempts at tube at breast were infrequently successful throughout day - plan to 
supplement with at least one ounce of her breast milk with each successful tube 
at breast (small tummy size probably from low transfer).  Two weighted feedings 
with me - 84 mL transfer (55 mL per tube supp, 106 mL transfer (32 mL per tube 
supp).  Attempts at cup feeding were unsuccessful.

4/26 morning - weight 4194 gm (no weight gain).  Mother reports tube at breast 
supplementation since I saw her yesterday was only successful for 3-4 feeds 
total, very small amounts were able to transfer.  Three feedings with me - 52 
mL, 35 mL (supplement - mom forgot to weigh baby before feeding), and 94 mL (no 
supp, all from transfer).  Plan included weighted feedings for all feeds, 
supplementation attempts with each feeding, compression during the feedings, 
increase frequency of feeds to see if we can make up some calories with 
frequency.

Today, 4/27 morning - weight 4192 gm (no weight gain).  Total recorded intake 
for 24 hours - 18 oz (possible a smidge more since mom forgot to weigh him for 
one feed).  Goal was 25 oz.  Discussed more history.  Mom mentions baby's 
paternal uncle (13 years old) has celiac disease.  Discussed signs and symptoms 
of B12 deficiency, cystic fibrosis, mom's and dad's allergies (none) to see if I 
have missed anything.  Mom denies any of the above issues.  MD ordered gavage 
feedings after breastfeeding to make up the difference of intake since baby will 
not take other methods.  Plan for the day includes breastfeeding (weighted), 
expression of milk for supplementation by gavage feeding to total 3 ounces per 
feeding.  MD ordered blood tests for tomorrow - ammonia, immunoglubulin a, 
tissue transglutiminase (IGA), TSH, and I asked for a 25 (OH)D to be added.  I 
also talked to mom about having her levels checked.

My questions - calories and quantity are the only things we can really work on 
here in the hospital.  CST, tongue/lip, and assessment of allergies, etc. have 
to wait until after discharge.  I think all this probably started with a poor 
suck or restrictions from the first days.  With mom's huge milk supply, and 
baby's suck trouble, he probably was scared to feed appropriately.  The 
pediatric hospitalist is only concerned with putting weight on baby... he even 
suggests mom can go home with NG tube for supplementation.  Unfortunately, that 
does not get to the root of the problem... and my job with her continues for a 
long time as we figure that out.  Any other tests we should run in the hospital?  
Anyone seen the function of the suck improve with just a healthier baby that is 
gaining weight?  Any other opinions on how to supplement an orally averse baby?  
Direction on allergy issue?  Can all these problems be related and feed the 
other problems?  Sorry, that was even longer than I thought it would be.  Thank 
you for your input!

Trish Wierenga, BSN, RN, IBCLC, LLL leader



Jennifer Tow, IBCLC, USA & France
Intuitive Parenting Network, LLC



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