Hi All,
I have permission to post from mom.
Situation: Baby boy born 7-28-05 at 37 wks gest. BW 8' 11" Discharge 7'
12". Mom is Ped RN, worked in NICU, L&D - has been completely floored by
all that is happening. She is diabetic but controls with diet. Birth was
traumatic - very traumatic. Mom did not want epidural because of previous
back surgery but had to have a c-section due to partial placental abruption
so was given the epidural. She told the staff not to allow a particular
anesth to do the epidural - but with her back turned it was done by the
person she did not want anyway. He had to stick her several times. They
gave her Ativan and fentynal to calm her down. It nearly killed her. Her
airway started to shut down, and she was drugged to the point of severe
sedation - floppy. Baby came out very sedated - weak cry, not lusty like
her other babies (this is baby #5). Baby did not nurse, no rooting, no suck
response. Baby did not 'wake up' for over a week. He became jaundiced (18)
and needed to be put on bili lights. BF was difficult, as baby would go
immediately to sleep. Parents supplemented with EBM. Mom got a Symphony
pump to bring in and stabilize milk supply as Lactina was not working well.
I saw dyad on 8-3-05. I found a very sleepy, disoriented baby. Looked
'drugged', not 'here'. Suck was disorganized and weak per suck evaluation
with flow of milk. Jaws very tight, opened lopsided, neck and shoulder
muscles tight, lots of cranial overlapping. Referred to neuromuscular
therapist for eval and treatment. Baby was only able to take .4 oz from
the breast. I recommended pumping, feed baby with bottle or finger feeding,
offer breast. Call daily.
8-4-05 Mom reports pain with pumping - get 30mm flanges. Mom wanted to try
SNS at breast to see if baby can feed at breast to eliminate bottles. Baby
still disorganized and sleepy, but parents managed to get more milk into him
and he seemed a bit more 'awake'. SNS was not very effective - parents
supplement with bottles as needed monitoring intake and charting. Parents
troopers.
8-06-05 Baby doing better, still seems drugged, but, more 'awake'. Moms
milk supply is awesome now. Baby goes to breast, takes 1.1oz. He had been
seen by the neuromuscular therapist - jaw opens much wider, he seems more
comfortable. Recommended renting scale to monitor intake at breast.
Parents tired, but charting beautifully. Following instructions well, baby
staying hydrated and peeing and pooping well.
8-08-05 Baby much more alert, doing well, suck seemed better, more
organized, but still something was off to me. Couldn't figure out what it
was. Recommendations: Feed baby at breast, monitor intake with scale,
supplement as needed. Give it time - watch and monitor behavior and
progress.
From that time until Sept 23 he was doing well, or so it seemed. He was BF
well, gaining weight beautifully. All things looked fine. But...they
weren't. Baby became ill, screaming at breast, refusing to eat, refusing
bottle. Dropped weight - not sure how much - took to ped who said possible
sore throat and definite congestion. Baby continued to refuse to eat, cried
and cried. Became dehydrated, moms milk supply crashed. This happened
within a 3-4 day time period.
I saw again on 9-30-05. Baby had been feeding by bottle again, and had
regained hydration. I saw a sleepy baby with a seriously disorganized suck
- tongue moving all over, not raising, not cupping, back and forth movement.
Tongue-tie not really noticed before (probably due to paying attention to
feeding the baby) now very noticeable. Mom reports NO soreness (which is
probably another reason it was missed). Suck eval with finger feeding
showed serious issues with tongue mobility and effectiveness - even
non-nutritive suck was disorganized - this was worse to me than when he was
first seen. Noted aspirations (not noted before with previous visits) with
finger feeding as well as bottle-feeding. Baby very frustrated with feeds
with bot or breast but clearly wanted to be on breast. Recommendations:
Get frenulum clipped, take back to neuromuscular therapist for evaluation.
Paced the bottle feeds, keep baby upright with breast and bottle - listen
for sounds of aspirations, ask ped for asap referral to swallow center.
Something 'off' with baby. Baby's tongue not moving right. Please look
into neurologist evaluation. Baby avoids eye contact, does not engage with
people - but will engage with mom. Baby does not reach for objects, does
not roll over, not meeting milestones for a 9 wk old.
3 days later baby has frenulum clipped. Tongue moves better, but still
disorganized. Did another suck eval with flow of milk - something
noticeably not 'right'. Recommend parents again get to neuro and swallow
center. Mom very proactive - calls center and gets study moved from Nov 4
to today - 10-11-05. Here is where we are at and we are at a loss. This is
now beyond my education and I need input. Mom is aware that I am at my
limits - we are now learning together.
Baby shows clear signs of aspiration. Neurological issues are apparent.
Baby will be going for a barium swallow to determine what type of
aspirations are happening - top to bottom or bottom to top. Evaluator also
noted baby's behavior not appropriate for 9 wk old - recommended neuro appt
ASAP. Evaluator gave a Haberman to help with feeding - baby does not want
any bottles he only wants breast. We will work with the Haberman tomorrow
to see if we can convince baby he will not aspirate with it and it can be a
safe feeding method for him. Evaluator noted tongue issues, is concerned
about possible neurological issues. We (yes we) see the ped neuro on
Friday. We also go to see the neuromuscular therapist on Wed to see if
there is a potential muscular issue that is also involved with the tongue.
My thoughts are: The drugs that moms was given during labor that seriously
affected her and baby may have had a permanent effect on baby. I am
concerned about baby's feeding issues and do not know what else to do to
help this mom. She is amazing in her efforts to feed this child. He is
very attached to her, only wants the breast so she is working on increasing
her milk supply to the point where it was before where he could suck
(weakly) and get milk even though his suck wasn't very good. When mom does
deep breast compressions and massage while baby is at breast he gets more
milk.
So, where do I go from here? I will be going with mom to the Neurologist
appoint on Friday to discuss this with him - apparently they used to work
together and she trusts him implicitly. She is grateful that I am going as
her RN brain is not working well right now - I am grateful for the
opportunity to learn more. What else can I do for this dyad besides
support? I have already ordered the Wolf and Glass text book on suck
disorders but of course it is on backorder and I have no clue when I will
get it. HELP! I feel so outside my experience but am so honored to be able
to support this family. She and I are becoming fast friends with this. Any
input is welcome. If you need other information just ask and I will get the
information needed to help us find a way to help this baby. Are there any
sites that we can research to help us understand neurological issues and how
they affect suck/swallow? Any and all input is welcome. Please e-mail me
privately and to the list.
Thank you so much!
Jaye Simpson, IBCLC
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