Friday, January 30, 2015

Failure to Thrive

Wee babe had oral surgery yesterday, and this is her a few hours later (after lots of snuggles in bed with mommy). What a champ! But let's back up a bit.

Baby girl has been slow to gain weight since she was born.  She actually didn't poop until she was eight days old (I was a WRECK those first eight days--I had no idea poop could be so important), which was one of our first red flags that something wasn't right. We were first introduced to the concept of FAILURE TO THRIVE when she dropped from the 26th percentile (at birth) to the 5th when she was a month old.  At her two month appointment she weighed in just shy of the 2nd percentile.  Our pediatrician told us she was probably just petite like we are but wanted us to come back for a non-routine weight check in a few weeks.  

I came home and decided to post on our local La Leche League (a group of breastfeeding moms and lactation consultants).  I asked for ideas on how to help girl gain more weight.  A couple of moms asked if she'd been checked for tongue tie (where the tongue doesn't have adequate mobility because it's attached too tightly to the floor of the mouth--hinders sucking and swallowing), and I responded that it was ruled out at her newborn appointment.  Other moms suggested fattening up my diet, milk allergies, etc.  For some reason I couldn't stop thinking about the tongue tie idea, even though it was the one she'd been checked for.  I read up on symptoms and looked at pictures and became pretty convinced we'd found our issue.  I called and spoke to the nurse about my suspicions, and she scheduled us to come in the next day for our doctor to examine Edie.  She said she was very skilled in diagnosing this sort of thing.

We went in the next day and our doc opened Edie's mouth and said, "It's not connected all the way at the tip!" I wanted to say something like, "Yes, I have eyes. Are we really paying you to tell us that?" but instead asked for a recommendation for a second opinion.  She referred us to a local Ear, Nose and Throat Pediatric Specialist who would "definitely be able to rule it out for us."

We had to wait almost three weeks for that appointment.  I studied up more on ties so I'd have plenty of questions, and as I read I became even more sure this was Edie's issue and we were about to get it fixed and be on our way to healthy weight gain and happy nursing.  However, this doctor also said, "It's not all the way at the tip of her tongue so it shouldn't cause problems."  She also said Edie's latch looked perfect.

By 12 weeks she had dropped "significantly off the chart" (as the weight check nurse put it), and we were told to wait for the doctor to come talk to us.  I, of course, responded by promptly bursting into tears. I spent the next five minutes trying to make sure snot didn't drip onto Edie's head as she cooed away in our wrap like she owned the doctor's office while Daniel repeated, "We're going to be okay."

The doctor came in and explained our next steps.  Edie was cathed for a urine test, then we were sent to the hospital for blood testing.  A girl puked on the floor next to us in the lab waiting area, sealing my already-shot nerves.  Edie's labs all came back normal.  The doctor called and told me to start pumping and supplementing with 15 extra ounces of breastmilk a day.  That week all I did was nurse, pump, nurse, pump, day and night.  We were sent to the children's hospital in Tulsa for a cystic fibrosis sweat test, which also came back negative. Edie gained significantly more weight this week, and I again became convinced it was a milk transfer issue and not a disease.

I decided not to pump the following week to make sure.  At our weight check Edie had only gained one ounce.  Our doctor prescribed her a strong antacid and told us to come back in a week to see if that did anything.  We both left feeling weird about giving our girl meds just for the heck of it. She had developed some acid reflux issues that were making her choke more frequently, but it hadn't been going on long enough for me to believe reflux was the source of the issue. I remembered reading it could be a symptom of a tongue tie, so I came home and wrote on the La Leche page again.  A few other moms asked how our appointment to check for ties went weeks ago and I told them it had been ruled out by an ENT.  They asked which one, and within a few minutes of responding I had a bunch of other women posting about how that same doctor misdiagnosed their baby and consequently dragged out their low weight issues. A couple of them recommended an oral specialist in Wichita, so I called and was immediately put at ease when she said they would try to get us in in the next couple of weeks and Edie's symptoms definitely sounded tie related.

As I waited over the weekend to schedule our appointment (their entire staff was out of town at a conference), another local mom reached out to me about a doctor here who started specializing in this type of procedure a couple of years ago who is less well known. She encouraged me to call and see if we could somehow get in for a consult with him even sooner.  At 8:02 Monday morning I was on the phone with his receptionist--they had one appointment open this Thursday! Daniel and I went in thinking we'd just be there to hopefully get a diagnosis and feel him out, then we'd decide whether or not we'd come back for the procedure or continue with our plan to drive to Wichita. But after we found out he'd been apprenticing with the New York doctor who has basically been the driving force in infant lip and tongue tie awareness, we felt super comfortable.

The doctor diagnosed Edie with an upper lip tie, and both anterior and posterior tongue ties.  No wonder she's been struggling to get enough milk! He asked who wanted to stay with her during the surgery and I don't think I even looked at Daniel before the momma bear in me said, "Me." (Sorry, babe!) Daniel was sent to a connecting room to wait for us.  I held her arms down and talked to her (and by that I mean sobbed half-words while she screamed) through the surgery. The doctor used a laser to remove the three ties.  It felt like a long time but I don't think it was more than ten minutes before we joined Daniel and baby girl nursed to sleep.

We have a road ahead of us before she's gaining steadily--she has to completely relearn how to use her mouth before she's nursing efficiently.  But yesterday was HUGE.

Mommas, trust your instincts.  You know your baby better than anyone else.

And praise the Lord for answers and progress!



  1. So glad & thankful to hear you've found the reason, and that it wasn't anything life-long! Here's to her gettin' that milk on!

  2. Mamas KNOW. So happy to see you stuck with your instinct! I'm a fellow mommy and only just starting reading your blog and love it. Praying for you and Baby Edie :)