I'm about to seriously come out of the closet.
I have posted several times about a few different topics, and have said
that I was writing about someone else. I have Rachel and Kathleen's
blessings to post this, because my circumstances are unique and I am hoping
I can get some feedback from all you wonderful experienced people. I am
working with an IBCLC/MD, and she has been a world of help and support, but
still my situation leaves me feeling so frustrated. I think 10,000 heads
are better than one, so I am posting this to the lactation world.
I have a 20 month old son...he is the one who had the chylothorax after
heart surgery and I had to make skim milk for him, and I posted about how
that is done. He was in the PICU for 3 months after that surgery, and was
on the skim milk for a total of 3 months. He is now on full fat breastmilk
and has been for the last 12 months. So all is well from that standpoint.
He is also the baby with the oral aversion about whom I have written
several posts. As a result of the chylothorax, he was septic with every
bug in the book, 2 and 3 organisms at a time, was on and off the respirator
so often I lost count, was septic with yeast, and basically was critically
ill for the whole 3 months. Before this surgery, he was a nursing, bouncy,
8lb little baby. When I got him home, last January (2001), he refluxed
night and day, had lost 2 lbs, had no voice, on continuous O2, and because
he had spent so long on his back in bed fighting for his life, he was
pretty much a low muscle tone blob. Sorry to be so blunt, but I only wish
I were exaggerating. He took nothing by mouth, slight touch on his cheeks
would result in him screaming and vomiting. He was on a continuous drip
via NG tube for feeds. He was also very aversive to touch anywhere on his
body, would tense up and scream when he was held, and preferred to be left
alone in the car seat so he could rock his head and get himself to sleep.
It was not a good sign.
Now, fast forward a year to today, and he is almost 20 lbs, cruising along
furniture, crawling all over the house, voice is better, starting sounds of
words, chases his brother and 2 sisters, loves the sling, cosleeps in the
crook of my arm all night, and is doing far better than anyone ever
expected. He is not neurologically nor cognitively impaired. He is a bit
delayed in his fine and gross motor skills, acting more like a one year old
than a child of nearly two. He has been getting my expressed milk since he
left the hospital.
OK, here's where you all come in. He won't nurse. The oral aversion is
pretty much healed as far as being afraid to have something in his mouth
and it causing reflux. He can put pretzels in his mouth far further than I
ever could without gagging. He has not sucked since he left the hospital,
only in his sleep or when I ask him to suck, he'll suck with his tongue.
He takes almost all of his daily breastmilk via cup, the rest by NG tube.
We are still working on developing his satiation/hunger drives by allowing
him to take whatever he can by mouth first, and the remaining volume of the
bolus is given by tube. This is done every three hours, over a period of
one half hour in order to stretch his stomach, hopefully leaving him with a
sense of hunger and fullness. My question is this...is there any way to
teach a baby, now a toddler, but acting like a 1 year old due to the
traumatic past, how to breastfeed? I have tried skin to skin, putting my
nipple in when he is sleeping, cobathing, offering it to him any time I
would have instinctively offered it to my other nurslings, creating
jealousy when my next oldest pretends to nurse, and it's always the same
response. He'll laugh, pull down my shirt like he is all done, or he'll
lick my breast/nipple and then turn away. He has been doing this for
months and months. Sometimes I get so frustrated and sad, I can't do it
any more. Other times I think I'm over "this" and it doesn't bother me for
him to be "non nursing", but then he'll give me some kind of indication
that he hasn't forgotten, and I keep trying. Just tonight, and what
prompted me to finally go out on a limb and write this, he kept sticking
his tongue out as he was drifting off to sleep. (He also does this first
thing upon waking.) It's as if he is putting it against the upper two
teeth and playing with it up there, over and over. So tonight, after
watching him whine and fuss for an entire week with some GI bug, and not
being able to console him at the breast, I guess I was so desperate, I saw
him doing this licking thing and put my nipple up to his mouth, cheek to
breast, and in his sleep, he turned right toward it and opened his mouth as
if he would latch. But then he opened his eyes, saw me, thought better of
the whole idea, and went back to sleep with my breast next to his face.
Once again, I'm am left trying to fight back the tears.
My OT said that for him to "go back" to "sucking" would actually be going
backwards because he drinks from a cup so well. She doesn't get it. I
don't know whether or not these are breastfeeding cues, if it is imprinted
from the 3 months he did nurse before the surgery, or if I'm just trying to
do the impossible and torturing myself in the process. He never took a
bottle, so it's not like I can transition him from anything to the breast.
He only drinks from a 2 ounce cup.
My LC (and anyone who knows of Tina Smillie's work knows I am already
working with one of the best) says I have already given him everything that
breastfeeding was ever meant to give a baby...he is happy, attached, secure
and thriving. I know she is right. She has also said that the harder
I 'try" to get him to nurse, the more he will sense the agenda and resist.
I've seen that happen too. The feeding specialist I am working with is the
author of Prefeeding Skills, so you can't get much better in that area
either. I have tried homeopathy, craniosacral therapy, (though not much
because he didn't want to be touched), and letting observe other babies and
children nursing.
One last thing, not really sure if it adds anything except that you can see
just how frustrating this has been. He was born at 36 wks. gestation, and
after having one of his three open heart surgeries at 4 days of age, and
came home with an ng tube. Over the period of 7 weeks, I slowly weaned him
from the tube to the breast. Just when he had it down pat, he had the next
surgery and the whole process was interrupted. Now I have to start from
scratch again, if I can at all.
So my friends, if anyone has anything to offer in the way of suggestions, I
am only too eager to hear them. If there's nothing to say, then a "rah
rah" would suffice. If I get no responses, I fear I will be left without
hope, so even if relatching after 17 months and no sucking of any kind in-
between is impossible, maybe a pat on the back for trying would help.
I think you guys are the greatest, I love reading Lactnet, and I learn so
much from you every day.
Thank you for understanding why this is even important to me. I'm hoping
we can all learn something from this discussion.
Trish Whitehouse,RN, LLL Leader,
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