Author: ntblactation

Weekly NSTs came and went.  Lots of quiet time in the car to spend processing, thinking, dreaming up situations and imagining what it would be like when Daisy arrived.

Our next followup with MFM was at 34 weeks.  I didn’t feel well that day, and neither did my second born who had gotten sick a couple times earlier in the day.  I vividly remember feeling like my clothes were suffocating me, and we took the hour long trek up the highway, while I wore my robe so I wouldn’t feel restricted by clothes.  I even joked on my Facebook that I wished going pants-less wasn’t taboo 😉 When we arrived and walked back, I suddenly became very dizzy and vomited in the ultrasound room.  I felt better after, but not 100%.  The doctor was concerned that I was dealing with food poisoning since I had some fruit the day prior (and at the time, there was an active recall of fruit trays, something we’d eaten at my Blessingway the day before).

I was okay the rest of the appointment.  Baby was measuring big still, we were still dealing with the poly, but otherwise, she looked good.  No news is good news, right?

We’d barely made it home that evening and I began vomiting profusely.  I felt horrible!  I made sure to head to bed early, but I remember waking several times throughout the night begging for morning to come.  I didn’t want to lie down, I didn’t want to sleep, but I knew I needed to.  At 6 am, I decided I should probably get up to start my day.  I started having contractions but thought it was dehydration from the night before.  So, I did what anyone would do who knows someone “in the biz” and texted my friend lol!  She wanted me to stay home from work and to time my contractions.  So, again, I did what any “normal” person would do, and I showered and headed to work!

When I arrived, I notified management that I was pretty positive I was in labor.  That I would stay til they were able to reschedule my day, but that I needed to head to my OB.  I know everyone reading this that doesn’t know me is probably thinking I’m crazy – I am – and in my defense, I figured that worst case, an OB office was downstairs and I was a mile from a hospital.

They got my day rescheduled and I called my doc.  The nurse wasn’t concerned but said to come in after lunch.  In the mean time, I laid down and took a small nap.  All the while, my nurse friend is probably wanting to shake me out of frustration that I hadn’t headed in yet.

We arrive at 230 and the NST says everything is normal. PHEW!  Just dehydration.  The OB decides to do a cervical check *just in case* since we drove an hour.  They were planning to run a test to see my likelihood of going into labor, but the doctor takes off her gloves, and exclaims, ”Well, we won’t be needing that test!  You’re 5 centimeters!”

You could have heard a pin drop.

But how?  I was 4 cm last pregnancy and begging for pain meds, begging for the epidural!  This time was so different!  We were immediately admitted and the first steroid for her lungs was administered.  Prophylactic antibiotic for gbs since I hadn’t been tested yet.  And contraction delayers.

We met with the NICU team and they notified us that she would be automatically admitted and possibly transferred to the big campus if they couldn’t stop my labor.

I’ll skip a couple days here, and just say that they did, and I was sent home on contraction delayers at 5 cm, an hour away.  On bed rest.  That was a cute “suggestion” 🙂

Of course I wasn’t allowed to work at the tongue tie clinic on bed rest but I did return to home visits, limiting myself to one a day, and I warned every client beforehand.  Oddly enough, nobody turned down a visit, and most gave me a, “Well I’m a nurse/doc/live 2 miles from the hospital” excuse to help me feel better!

We had another ultrasound 3 weeks later and they set my induction date for 39 weeks.  I defied all the odds (my odds) and lasted til my induction date!

Induction day came…

We started pitocin at 11:30 am, and after lots of walking and ball bouncing, I was a strong 7 cm around 6:45 pm.  The midwife decided it was a good time to break my water, and she warned me of the cord prolapse possibility.  She said she would keep her hand there to feel for the cord as she broke my water, and if the cord came out, she would jump on the bed, holding the baby’s head, and we would race to the OR.  Talk about fear!

I burst into tears when she said everything was fine.  What an emotional ride!  And then suddenly, things got real.  Let’s just say, I went from 7 cm with waters intact, to baby in arms in about 30 minutes.  Intense does not even begin to describe it!  I felt like a rockstar for having a natural delivery (and on pitocin, too)!

My sweet Daisy girl was finally here.  And she was gorgeous, chubby, and perfect in every way!  My other two births were medicated and my girls were very sleepy.  Not Daisy!  She was wide awake, talking, and she latched (swoon!) immediately.

But I’m not delusional.  I knew better than to think she was transferring anything.  So I had the nurses bring a pump as soon as we moved to the postpartum unit so I could get started.  And there I was again.  Same song and dance as with my first baby, triple feeding right from birth.  But this time, I was at peace.  I was educated.  I was prepared.  And it felt right.

It felt like the longest wait until we were able to be seen by Maternal Fetal Medicine again.  But the day *finally* came and it was the day after Mother’s Day.  The positives?  Another ultrasound!  The negatives?  Possibilities for more bad news, of course!  

The good news was that baby was growing well.  There were no concerns with her size, her heart, her spine, her brain…the clefts were the only things she was dealing with.  More good news, the fluid on the kidney resolved.  But as always, there’s a bit of bad news too.  Some cleft affected pregnancies deal with polyhydramnios.  That’s the fancy medical term for excess amniotic fluid.  Because of the swallowing concerns that cleft affected babies have, there’s sometimes excess amniotic fluid.  This fluid was causing me to measure three weeks ahead, and she was already at a rough estimate of 4 lbs!  Possible risks for delivering a baby with “poly” are breech presentation due to the large space babies have to float around in, cord prolapse (where the cord delivers before the baby), and of course premature birth – which I am at risk for anyway due to my history.  With this pregnancy, I began doing my own weekly progesterone shots at 17 weeks.

The MFM doctor referred me back to the midwives at the new practice where I was now being seen due to risking out from the birth center.  She ordered weekly NSTs (non stress tests) to monitor baby’s activity.  Weekly trips an hour up and an hour back, for an hour long appointment.  Great! <insert eye roll here>

We’d be back in a month for a follow up.  And in the mean time, I would keep googling.

I knew. I just knew. The second the ultrasound tech crossed over her little face during the anatomy scan. My momma gut told me something didn’t look right – it looked like a hole on her face, right there. Plain as day.
I was being seen at the birth center an hour away for my prenatal care (I desired a natural birth this time around) so they referred me to a local place for the anatomy scan. It was the radiology department at the satellite campus for our local hospital, and it was located across the street from my house. My sister came to sit at the house while my big girls napped, so it was just Eric and me.
No doctor appointment to discuss the scan right after, no nurse that I had as a familiar face. Just a random radiology tech who, while nice and polite, just didn’t have the capability to make it feel like the warm and fuzzy feeling you get at the anatomy scan at your doctor’s office.
She said she hoped they (the birth center) would be happy with the pics she was sending over, as baby was moving a lot and she “couldn’t get a good view of her face.” I knew, though. And when I hadn’t heard from the birth center a few days later, I rang myself so we could chat about it all.
The midwife called me back after I left a message…”We got the scan in, and everything looks pretty good. It looks like there might be a possible cleft lip so we will go ahead and put in a referral for maternal fetal medicine to do another scan.” Of course, being a midwife and being known to be the softer, gentler, type of OB provider, she cushioned it. But I already knew.
Cleft lip? Ok no problem! It’s just cosmetic. She’ll be fine. I’ll be fine. We will breastfeed.
Two weeks after the original scan, I was up at the maternal fetal medicine office with my two rambunctious girls, who were missing nap by the way, getting another scan. Diagnosis showed fluid on the kidney and a unilateral cleft lip AND palate. Gutted. We would be scheduled for an updated scan at 31 weeks, along with the option to choose between two semi local cleft teams.
The drive home took 2.5 hours that day. It was March, but it was snowing. On the highway. And I was alone with my two girls, attempting to process the severity of the situation. “As long as it doesn’t reach the soft palate,” I told myself, “it will be fine. We will breastfeed. It will be fine.”
Next came all the googling. All the contacting. It seems as if not many IBCLCs really see a ton of cleft babies – why? Probably because they’re told they can’t breastfeed. There are two in particular who I would consider specialists on the subject. One in Italy and one in Illinois.
I reached out to my private practice IBCLC village and was flooded with support, love, and well wishes. But it’s such a scary and lonely place to be. I found solace through their support but it’s hard knowing I may never be able to successfully breastfeed my sweet baby girl. As an IBCLC, especially.

I thought I had it all figured out. Of course everything in my life was one big plan. Everything I did in my life was carefully thought out and well executed. I didn’t miss a beat, and I was proud of being on top of my “game” – motherhood, my schooling, my career, my life…I took all the right steps in the right order. This was NOT a part of the plan. I hadn’t prepared for this! This didn’t fit in my life plan! I felt like things were spinning out of control and I couldn’t grasp any of it, like when you’re at the beach and you pick up two handfuls of sand, only for it to slip straight through your fingers. And you’re left with nothing but two empty hands.
Several months prior, I told my husband that I was seeking more challenging “cases” in my career. I wanted something that would knock me on my butt and really expand my horizon in lactation. Clearly, Someone was listening! I didn’t think it would be a personal case though! But, thinking back on how I landed in lactation to begin with, I guess it makes sense.
My skill set in my career has been based mostly on personal experience. My sub specialties are what they are because of my children. Why would this be any different?

Welcome to Feeding Miss Daisy.  I hope you enjoy following our journey.  I’m Sarah, a mom, wife, and IBCLC in private practice in North Carolina.

My husband and I have three daughters, Aubrey, Everley, and Daisy.  Daisy was born with a unilateral cleft lip and palate.

This blog will document our feeding journey with Daisy.   I hope it serves as motivation for mothers and families who hope to have some sort of breastfeeding relationship with their cleft affected newborns.   I hope it also serves as a source of comfort and relatabilty for those of you who are mourning the (potential) loss of breastfeeding, as well as the loss of the sense of normalcy that comes with birthing and raising a “typical” newborn.  I have been there, I *am* there, and you are not alone.

Welcome!  Enjoy!