PTP Update: See previous post for important history.

Previously I had been in contact with this mom as someone she knows from previous breastfeeding helping situations to help her process and understand the recommendations from her health team. Today, I visited and assessed her baby for the first time as an LC.

Baby is now 13w 5days. He recovered well from surgery and had some weeks with normal weight gain but has not gained anything in the last 2 weeks. He is 11lbs 12oz (was 11lbs 8oz at birth). He did not gain anything previous to his surgery at 5 weeks (actually lost weight) and has slow weight-gain since then. He is visibly jaundiced with yellow skin and eyes. Current bilirubin level is 11 with no explanation. His liver enzymes are elevated. He has had thorough testing of his liver with no pathology found. 

He is very alert and social and meeting milestones. He has a normal activity level. He does not look or act like a FTT baby. He is breastfed on cue 8-10 times daily and receives 6, 1oz bottles of donated expressed breastmilk, in order to provide a prescribed a sodium supplement to address a (possible) sodium deficiency. A weighted feed showed a transfer of 108ml immediately after consuming 30ml of expressed breastmilk. He has a disorganized suck, swallow, and breathe rhythm during let-down and he swallows a lot of air.

Baby has a very restrictive lingual frenulum. It was clipped slightly while in NICU but still is attached almost to the tip of his tongue. His scores on the ATLFF are 2/6. He does not produce much vacuum when sucking on a finger. When one finger from each hand is placed laterally along the side of his gums and touching the sides of his tongue, his tongue deviates to his left side. He is uncomfortable when placed on his right side. He was very cooperative with an oral exam and has a very tolerant nature in spite of previous uncomfortable interventions due to his health issues.

He has obvious structural tension and a very restrictive lingual frenulum. Parents are planning CST and considering frenectomy. They are comfortable with frenectomy due to a previous child having the procedure but have been hesitant due to Baby's many other procedures.

Baby's physician is suggesting possible fortification of breastmilk with formula. Parent has plenty of expressed milk, so I suggested lacto-engineering for more calories to start. I also suggested breast compressions to get more milk into Baby. If this doesn't work within a few days, Parents are considering MCT oil in supplemental bottles of expressed milk and as a last resort, they will consider using formula to increase calories.

I know that slow weight gain usually requires more volume rather than more calories but this baby seems to be getting plenty of volume. My conservative estimate is that he gets at least 35oz/day (including the 6oz of supplement) and as much as 40oz/day. This takes into account that the parent noted that the weighted feed seemed even less vigorous than typical (and Baby easily transferred 3.76oz at that feed) and Baby is breastfed 8-10x daily.

My questions are:

1. What is the best way to get more calories into this baby knowing the milk supply is pretty much unlimited due to parent's robust supply and generous donors. It seems obvious that he has higher than normal metabolic needs for some unexplained reason.

2. His HCPs are stumped by his continued jaundice and elevated liver enzymes. Does anyone have any suggestions as to what continued health issues may be going on with this little one? I suggested a second opinion, since current doctors are stymied, if only to get one more mind considering all the health issues. I am hoping that the vast experience of Lactnetters can help with suggestions of possible health issues that are consistent with this Baby's history.

Laura Spitzfaden, LLLL, IBCLC, APL

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