Wednesday, October 7, 2015


After his fourth and final clipping, Dr. O'Hara referred us to an infant feeding specialist at Children's.  Although Lochlan's latch has improved dramatically, he still chokes every time he nurses and gets a belly full of air.

"Does he always breathe that fast?" asked the pretty, thoughtful therapist.

"Is he breathing fast?" I asked.

"Yes.  A normal breathing rate for a baby his age is 30-40 breaths per minute; he's doing about 60."

"Oh," I said, "then yes.  This is how he always breathes."

She held her tiny stethoscope to his throat as he nursed, or rather struggled to nurse, and listened to his swallowing.  She asked a lot of other thoughtful questions, each one pertaining to some quirk of his that I hadn't even told her about.  Then she told me that Lochlan has laryngomalacia, which literally means "floppy larynx." The short of it is that his airway collapses a lot, and that while eating he often has to choose between swallowing or breathing. This is good news and bad news.  The good news is: it is non life-threatening; it resolves with time; he will eventually be able to transition from bottles to breastfeeding.  The bad news is: it lasts until four months corrected age at least, possibly longer; it causes frequent choking during eating; it can cause severe reflux; it may take several months to resolve.

In a lot of ways, the diagnosis was a relief.  It explains why it takes him SO LONG to finish a bottle, and why he still struggles with breastfeeding.  Combined with his very sensitive gag reflex(a vestige of his tongue tie), the therapist said it's a miracle that he's not underweight, as most babies with his degree of issues are.  Sometimes when I know he's hungry, he'll gag on his bottle but cry when I remove it.  When that happens, I have to calm him down and then offer the bottle again by just barely tickling his lower lip with the very tip of the bottle nipple; it has to be his idea to pull the nipple into his mouth, or the gagging and crying starts all over again.  He's outgrown his stridor, but he still sometimes looks and sounds like he's drowning while eating, waving his arms and breathing more and more frantically.  It can look like hunger, but now we know he's struggling to breathe.  Previously, we were using Dr. Brown's bottles with a preemie nipple, but the therapist gave me some ultra-preemie nipples which are slower flow and he does better with those, as he can take in less milk per suck and give himself more time to breathe in between.  He also burns a lot of calories just to breathe and especially to eat, which explains why he's not obese despite taking in almost twice as many calories per day as most babies his age.  The therapist told me to imagine I'd just run at a very fast sprint, then had to drink from a garden hose that was on full-blast while tucking my chin into my chest.  That's what breastfeeding feels like to Lochlan.

I'm a little bit upset that this wasn't diagnosed sooner, especially since he's had the stridor since birth and he was looked at by so many doctors, nurses and lactation consultants during our NICU stay.  Stridor is the number one symptom, but he's got almost every single one on the checklist to go with it.  I mentioned his reflux to his doctors and nurses in the NICU, but they all told me that it was likely from his feeding tube.  The only real difference having a diagnosis would have made was that I would have had a better idea of what our long-term trajectory would be from the start, rather than waiting for resolution to be just around the corner.  Lochlan's infancy and all the issues that have come along with it have only strengthened my desire to be a doula in the future, particularly because I know how much energy it takes to advocate for yourself when you're navigating life with a newborn baby and a postpartum brain.  Also, one million points for mother's intuition.  Two different doctors clipped Lochlan's tongue, one in the NICU and one doctor I called on a recommendation, and they both declared he didn't need any further revision.  When his latch was still painful and not improving, I took him to a third doctor and she said his tongue was fine.  She recommended that I breastfeed him 4-5 times a day.  The feeding specialist at Children's told me to breastfeed him no more than twice a day, otherwise he'll burn too many calories.  If something doesn't feel right to you about your baby, seek a second opinion.  And a third and a fourth, if necessary.

So we keep pumping and waiting.  I'm glad to know what's wrong, and to know that he is thriving despite pretty substantial difficulties.  I'm also deeply reassured in terms of gauging my own experience; I still don't feel anywhere near recovered, and it turns out that nobody in my position would be.  His sleeping patterns are still wildly unpredictable, and if he has a choking episode in the night it gets adrenaline going in both of us which makes it hard to go back to sleep in a timely fashion.  It can sometimes take over an hour for me to give him a bottle, settle him back to sleep and then pump a bottle for the next feeding.  Some nights he'll wake up to eat at two a.m. and not go back to sleep until six.  Aaron has started staying home "late" two mornings a week so that he can take the 5-8 a.m. shift and I can get a reliable block of sleep.  The therapist asked me how I was surviving with such a high-needs baby on so little sleep, and I told her that I don't do anything else.  I basically have zero social life right now, and focus on

1. Feeding Lochlan
2. Not going crazy

That's not meant to be a complaint, as I mostly lack the capacity for a social life.  It feels stressful to have anyone over during the day, as I don't feel free to go back to bed with Lochlan when he goes down for his big nap and I often need all the sleep I can get.  Going over to a friend's house is stressful because I have to pack up my pump and all my supplies, and if I forget any vital pieces(like I did when we went to my in-laws for dinner) we have to go home.  Going anywhere at night is out of the question because I'm usually so tired I can't drive safely, plus Lochlan still has his moderate-to-deep unhappiness periods from 6-9 each evening.  And then the constant pumping.  I have to pump every three hours to produce enough food for Lochlan and keep my supply from diminishing, which poses obvious logistical difficulties.  If I'm out in public, the options are to go back to my car or stand in a bathroom stall and pump manually.  Lochlan also likes(demands) to be held every second that he's not sleeping, so if we're not home I have to either enlist someone else to hold my cranky baby or let him cry until I'm done, both of which feel stressful.  He's also happy about 10% of the time, and when he's not sleeping or eating he requires constant pacing and back-patting.  He prefers that I not sit down pretty much ever, so I'm being very, very gentle with myself and cocooning at home.  We are nowhere near back to normal and won't be for a long time, so I'm giving myself permission not to do anything that isn't absolutely essential.  Laryngomalacia, in addition to its other charming characteristics, puts Lochlan at an increased risk for complications like croup if he gets a cold, so I'm even less inclined to venture out in public or hang out with anyone else who has petri dishes germ factories kids.

Despite all that, I am madly in love with this baby.  His difficulties and challenges have made me even more present to his peaceful moments, which are few and far between but getting more frequent with age.  He has started to coo and sing me love songs which reduce my heart to total mush, and I know from experience that he will outgrow everything that's hard right now.  It's just a season.