baby on the way

Eden Faye, Four Months


Hi, friends! I'm FOUR MONTHS old today!
Here's what I'm up to lately:




-I weigh 9 pounds, 11 ounces and am 24 inches long.  I'm in the 30% for length, 50% for head circumference, and still not on the chart in weight. :(
-I wear newborn and 0-3 months clothes and newborn diapers.
-I go to bed around 8 and sleep one six plus hour stretch if mom lets me
(she usually half-wakes me to nurse every few hours).
-I've started my own two to three hour daily routine: eat, play, nap.
-I had two surgeries on my mouth this month, 
and now eating is completely different!
-Getting my tongue tie revised helped me like the car better--I can sleep now!
-The surgeries also made my acid reflux go away!
-I talk to mommy all day long.
-I love it when mommy asks for a kiss--I slobber all over her face!
-I hold my toys and bring them to my mouth, 
but I'm more interested in my own hands.
-I recently found my feet, too, and they're so fun to grab!
-When I'm sitting on mommy or daddy's lap, I lean away from them 
for a little bit and try to sit up on my own.
-I love baths and showers.
-I grab blankets/towels and pull them up to my face.
-I still love the mirror.
-I love when mommy and daddy talk to each other,
I smile real big and try to join the conversation!
-I think Penny is very interesting--I like watching her run around.
-I love walking/squatting my legs while mommy holds me up.
-I roll from front to back and back to side.

---

Edie babe, I have so many prayers and hopes for you swelling in my heart every day, but lately my main prayer has been that you would start packing on the pounds.  I didn't expect to still be fighting this at this point and I'm so tired of watching you get poked by doctors every day, but I will continue to do everything in my power to protect and take care of you. Despite all of this, you are the most loving, sweet girl and I am so proud to be your mommy. I love you I love you I love you, little lady.

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!

-J
  


A Little Pregnancy Throwback

I realize I never shared any bare belly photos from my pregnancy. For someone who claims to be pretty transparent and thinks growing a mini is so beautiful, that's kind of a shame! So here's the babe and me a day before her due date.


I love having baby girl here--seeing her sweet face, hearing her silly nonsense talk, smelling her perfect little head--these are the BEST things. But with this scary health stuff going on, I keep catching myself almost wishing she was still growing safely in my belly.  Almost.

We have another weight check tomorrow.  Let's get chunky, teeny one!


Eden Faye, Three Months + An Update

Hello! I am three months old as of yesterday!
Here's what I'm up to lately:





-I weigh 9 pounds, 4 ounces and am 22.75 inches long!
-I wear newborn diapers and newborn/0-3 mos clothes.
-I've seen lots of doctors this month about gaining weight so slowly, 
but all of the big tests have come back negative so far!
-Looking at myself in the mirror is my favorite--I smile and talk to myself.
-I flirt with daddy by smiling at him and then burying my face in mommy's chest.
-I sleep one five hour stretch and another three to four hour stretch at night.
-Lately I fall asleep around 10 p.m. for my long stretch.
-I take three short naps most days.
-I still eat about every two hours during the day.
-I took lots of extra bottles of breastmilk this month when 
mommy and daddy were trying to get my weight up--
mommy pumped for me between every nursing session.
-I love baths and taking showers with mommy.
-I love playing with my hands!
-I just started holding my toys and bringing them to my mouth.
-I love when mommy reads to me--I look at the pictures and talk!
-I roll from tummy to back and from back to side.
-I bat at the toys hanging from my play gym.
-I have awesome head control!
-I love going on walks outside in mommy's wrap when it's warm enough.
-I've full-on laughed several times this month!

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Edie girl, this month was a little less than ideal--we spent way too much time in doctors offices and hospitals! Watching you get poked and prodded killed me.  But you're being goofy moments later and restoring joy to my soul, and I am so impressed by you, babe! We're going to get this figured out and go on living our lives, I promise.  I love you more all the time, Eden Faye.

---

A little life update:

Well, friends, baby girl has been tested for a number of diseases and disorders the past few weeks, and this momma has been a total mess. Edie hasn't been gaining weight as she should, and that paired with a few red flags right after she was born had us moving down a very scary path.  Last week we were sent to the children's hospital for cystic fibrosis testing, and the hours we spent waiting for the results were the longest of my life.  Praise the Lord, she tested negative! That still leaves us without answers, but we were praying it wasn't CF.

Most feeding issues have been ruled out but I've been asking our doctor about the possibility of food allergies (transmitted through my breastmilk), but she kept saying we'd come to that last.  After the CF test Wednesday I decided to just go ahead and eliminate dairy, eggs, and soy (I already don't eat wheat) from my diet. I honestly wish I'd followed my instincts and tried it before the babe fell completely off the weight chart--I'm feeling some major mom guilt. Now I'm just praying this is all it is somehow (we won't know for a bit--it can take weeks for dairy to leave our systems) and that girl will start packing on the chunk!