Cleft Palate- The Referal Process

I mentioned in Emmalyn's birth story that upon initial exam, the pediatrician discovered a cleft palate.  Her cleft palate has been determined by 4 pediatricians to be mild, but will still require repair. 

The first pediatrician, Dr. B., came in to see us.  She's the one that initially told us about Emmalyn's cleft.  She said that at our first office visit, they would set up the referral work for us to go to UAB.  She stated that when checking Emmalyn's sucking reflex, she could feel the malformation, but had to get a flashlight out to see it.  She stated that Emmalyn might have some feeding problems, especially with breastfeeding, and might require speech therapy later.  Good thing I know an abundance of speech therapists, right?

Dr. B. saw us Tuesday, Wednesday, and Thursday in the hospital.  She was able to answer our questions as we came up with them, but really, I didn't have a lot.  The lactation consultant also came to see us several times in the hospital.  She provided us with feeding strategies and special bottles to use with Emmalyn.  The lactation consultant was able to show me Em's cleft palate without a flashlight.  It was much larger than I thought it would be based on Dr. B's description.

Dr. W.  discharged Emmalyn from the hospital, and he also reported that the cleft was very mild.    She was having some feeding issues at the time, but Dr. W stated if we could get an ounce in her every 3 hours, he would be happy with that.  We did manage that.    We called and made an appointment with our pediatrician, Dr. S.  

Before discharge, they gave Emmalyn her newborn hearing screening which she FAILED.  What?  I performed newborn hearing screenings in graduate school.  I know how common it is for babies to fail, especially csection babies, and what do I do?  Panic, of course.  I consulted my favorite doctor of all, Dr. Google, regarding  cleft palate and hearing loss.  For the record, there is a correlation between cleft palates and hearing loss. 

At our first appointment with Dr. S, he told us some great things.  The first was that Em was gaining weight, even if it wasn't as much weight as they wanted.  The second was that he thought we could have her palate repair done closer to home due to the mild nature of it.  The third was that we could keep doing exactly what we were doing, which was significant to me because it meant feeding on demand vs. waking to feed at night.  Don't judge.  I have a 15 month old and a newborn.  I'm in a state of permaexhaustion without waking up every 3 hours if I don't have to.

He also set us up to have Emmalyn's hearing rechecked.

SHE PASSED!! Thank God...

Our second appointment was scheduled to be with Dr. S, but ended up being with Dr. P due to an emergency at the hospital.  I really like Dr. P too, so I was down with this.  Dr.  P explained there had been some bumps in the referral process.  First of all, there is a group of doctors in a city about an hour from us that advertises cleft repairs, but none of the pediatricians in the area use them.  They all refer to Shands- Gainesville.   He then called around in another city about an hour from us.  He found one doctor who said he would, "try it."  Apparently, he's never repaired a cleft palate.  NEXT....

We finally got a referral to Shands Craniofacial Clinic for next Thursday.  

15 Months

After a busy month, and rescheduling 3 times, we finally made it to HC's 15 month appointment.

My girl is...

• 27 pounds and 32 inches tall (2 feet 8 inches)
• Advanced for speech/language milestones.  They asked if she had 3 words.  Last time we counted, she had 18-20.  She's my rockstar.
• These words include: momma, daddy, down, dog, kitty cat, cookie, banana "nana", paw-paw, Nana, and grandpa, Dora, bath, night night, bye bye, hi,  and her new most used word: baby. 
• Follows basic commands such as "bring me your cup"
• Stacks blocks. 
• Walks everywhere.  
• Climbs. 
• Likes to sit in adult chairs. 

• Is into EVERYTHING including but not limited to: cookbooks, mail, the kitchen cabinets, the bathroom, baby stuff, laundry, and the dishwasher. 
• Is very social.  Gives excellent hugs and kisses.  
• Loves being the center of attention. 
• Also loves being around other children her age. 
• Has the ability to take her room from clean to disaster in 4.5 seconds. 
• Is loving. 
• LOVES the cats and dogs.  
• HATES the pediatrician. 

Overall, the pediatrician wasn't overly concerned about any one thing.  He wanted us to try and get more iron in her diet because the last time she had blood work done, her iron levels were low normal.  In addition, she turns her feet in a lot when she walks.  Upon examination, the pediatrician noted that she has too much internal rotation.  We're going to watch it for 3 more months, but we may be looking at an orthopedic consult.

In addition, this has been a very busy month for HC.  First of all, she became a big sister.  She's a rockstar at it.  She checks on "baby" about 100000 times a day, brings us bottles, and pacifiers, and rocks the baby.   Rocking the baby might sound weet and innocent,  but it is actually quite frightening.

She also had 2 shots, but the whole appointment was traumatic for H.   She started crying when they laid her down to measure her, and never really stopped.    She goes back in 3 months for more shots and a re-evaluation of her feet.  

Little baby girl seeks partner in crime....

 

Hi, my name is Emmalyn.  I'm almost 3 weeks old. 

My likes include: 

• Enfamil Gentlease every 1.5-2 hours during the day
• Being fed by my mommy
• Being held by my mommy
• Sleeping on my mommy's chest
• Staying up way later than my older sister 
• Nuk pacifiers

My dislikes include:

• Being held by anyone besides my mommy
• Trying to keep my pacifier in my mouth by myself
• Sleeping

2 Weeks on the Outside

Hi, my name is Emmalyn

• I am 2 weeks old today. 
• My estimated due date is tomorrow. 
• I like to eat.  Sometimes I eat 1.5 to 2 oz in one feeding.  Sometimes I eat .5 oz every hour for several hours. 
• I like to sleep.  I'll sleep for two 4 hour stretches at night.
• I'm spending more time awake. 
• My favorite place to be is on mommy's chest.  I'll tolerate the bouncer and the rock and play.  
• I like to suck my thumb.  Sometimes, I'll use a pacifier.  I have trouble keeping those in my mouth. 
• At my check up yesterday, I was 6lbs 11 oz and 20 and 1/4 inches long.  
• My big sister checks on me lots.  

• No one really thinks my big sister and I look alike.  
• This is what Hadley looked like at 2 weeks old.

Current Obsession: Mint

Carter's Strappy Neon Sandals Available Here | Boppy Organic Blankets 2 Pack- Mint Available Here | Circo® Infant Toddler Girls' Ruffle 1-Piece Swimsuit Available Here | Circo® Newborn 2-Pack Hat & Sock - Andes Green NB Available Here | Essie Nail Polish in Mint Candy Apple Info Here | Merona Tote Handbag - Mint Available Here | Merona Floral Woven Scarf- Mint Available Here
Xhilaration® Women's Round Bracelet Watch - Mint Available Here | Old Navy Rockstar Microdot Skinny Jeans in Green Goddess Available Here 

Mint is my current obsession.  It started when a dear friend pinned a super cute outfit that was mint and navy on pinterest.  Obsession spiral.   These are some of my mint colored finds.  I would be all over those skinny jeans with the exception of 2 things: I don't have the body for skinny jeans AND I don't really have the body for anything right now.  

Our family has grown by two tiny feet....

I should have posted this earlier, but things have been hectic. 

On Monday, January 7, I had my last scheduled OB appointment.  It was 8 days before my scheduled c-section.  I went back to the back, they weighed me (total weight gain: 16 lbs), and took my blood pressure.

The conversation with the nurse went something like this:

Nurse: Your bp is a little elevated.

Me:  What was it?

Nurse: 150/90

Me: Shit. SHIT. 

So they took me to an exam room, and I laid on my left side.  The nurse came back in 10 minutes to re-check my blood pressure, and my doctor, Dr. N., came in.  I cried.  We talked for a minute about how I had been feeling.  I told him I was fine.  I promise.

He said, "You know I have to send you to l&d right?" 

My response came out jumbled and something like this: 

Listen, I mean, I'm sure a trip to l&d would be fun and everything, but I can't have this baby today.  She's scheduled to come next week.  I have to work this week.  I haven't finished all my paper work.  And my Christmas tree is still up.  And I have 1000 sq. feet of wood floors in my living room.  And I have a 15 month old.  She's in the lobby.  With my mom.  I can't take a 15 month old to l&d. And you know, she woke up this morning, and I laid her on the changing table.  I unzipped her pajamas, and there was poop laying inside her pajamas.  My first thought was, OMG, how did the poop get outside of your diaper?  Then my second thought was, OMG, you blew poop out of your diaper, and then finally, I opened the diaper, and there was no poop inside the diaper.  HOW DID YOU POOP OUTSIDE OF YOUR DIAPER? And then we cleaned up, and got dressed, and I can't have a baby today because there are poopy kid pajamas in my sink, and I have to go to work.  Then on the way here, she was starving because they feed her lunch at like 10:00 at daycare.  That's a stupid time for lunch anyways, so I gave her some applesauce in a pouch.  She's been a master at applesauce pouches, but yes, today, I felt applesauce hit me in the back of the head.  And I'm not ready to have a baby today.

 And breathe.....

Dr. N. said

We'll send you over there for a few hours.  You can relax.   Listen to the baby's heart beat.  If your blood pressure goes down, we'll send you home.

What followed was a conversation about going back to work.  I just asked to work a couple of more days.

And off I went to L&D where my BP did not go down.

Dr. M., the on-call doctor,  came in.  He told me to relax a little while longer and we'd see where my BP was.   My BP never ever went down.

The hubs called.  He was leaving work.  He asked me if he needed to go get anything.  I told him no.  I called him back and said, "Maybe you should bring my pajamas."  He called me back, "Do you want me to bring anything for the baby?"  I said, "No, I'm sure we'll go home tomorrow. "

Twenty minutes after hubs left the house, which would make him about halfway to the hospital, Dr. M. came back in and said, "We're going to have this baby tomorrow."  WTF??

I was not prepared for this.  I hadn't made child-care arrangements.  I didn't have anything for baby.  How was this possible??

I spent the night in labor and delivery and the next morning, the nurse woke me up for my c-section.  Our second baby girl, Emmalyn,  was born at 7:49 A.M. on 1/8/13 weighing 7lbs 1 oz. and 21 inches long.

I remember her first cry.  It was kind of nasal and echo-y.  My speech-language pathologist voice came out and said, "Something's wrong," and the hubs said, "No, no.  She's perfect."  She is perfect, and beautiful.  I'm so in love.

But there is a thing.

The pediatrician came in about 2:00 in the afternoon, and said, "Your daughter looks great, and everything's fine.  There's just something we need to talk about."

She told me that Emmalyn has a cleft palate.  She has a very mild cleft of her soft palate.  She will need surgery, but she's amazing, and healthy, and that's what matters.

On the night before you were born...

You're father and I are laid up in labor and delivery waiting.

I'm trying to take in every movement and every wave of heartburn. I don't anticipate having those feeling again until the fairly distant future.

You've been on fetal monitors since about 12-12.30. That's over 15 hours now. You are tired of being monitored and will not stay still.

I'm so excited to meet you, but I'm a little anxious.

I love you, baby girl.

37 Weeks

How far along? 37 Weeks


 THE CSECTION COUNTDOWN

Size of Baby: 

According to the bump.com, your baby's the size of a winter melon!

Yay! Baby has reached full term. She likely measures around 18.9 to 20.9 inches and weighs about 6.2 to 9.2 pounds. He's gaining about 1/2 ounce each day.

According to huggies, baby looks something like this......






Total Weight Gain/Loss:  I had to brave the scale at my anesthesia pre-op.  +23 lbs, but it was right after breakfast!! I will starve myself before my next appointment! That's a lie.  I'm always hungry.

Maternity Clothes: My wardrobe consists of up sized scrub pants, maternity/up-sized old navy tshirts, and a few maternity jeans and shirts.  

Gender: It has to be a girl because her room is now pink and sparkly. 

Belly Button In/Out:  It's still in. It is getting tight though. 

Stretch Marks:  They're here and here to stay. 

Labor Signs: I kind of thought I might have been leaking amniotic fluid today. It's cleared up, but I had a couple of contractions after dinner. 

Movement: I think it's getting uncomfortable for both of us.  It's almost painful when she starts moving.  I still love to feel her move.  That's how I know she's ok. 

Sleep: Is an interesting turn of events these days.  I'm getting up at least 3 times a night to pee, and sometimes I can go back to sleep and sometimes I can't.  I actually fell asleep on the toliet last night for the first time that I can ever remember doing that.

Cravings/Aversions: I think I'm finally getting over this Mexican food thing.  I made the best freakin' chicken nachos for dinner last night, and then today, Mexican food was disgusting to me again.  We'll see what tomorrow brings. 

Symptoms: A giant belly.  With HC, the only morning I ever remember waking up not nauseated was the morning of my scheduled c-section at 37 weeks.  I'm 37 weeks today, and I was NOT nauseated when I woke up this morning.  I haven't been as nauseated this pregnancy anyways though, so it doesn't feel like as big of a deal. 

I'm noticing more swelling and weight gain.  I'm tired.  I'm having back pain.  I'm having trouble getting motivated.  

Also, my bp was elevated at my pre-op appointment.  The nurse didn't really say anything about it, but I've been checking it twice a day at home since Monday.  It's not high enough for concern, but it's definitely gone up since my last OB appointment.

Feeling: My feeling of "over it" isn't getting better.  I'm still over it, but I want baby to be healthy.  If she decided to come tomorrow, I wouldn't be devastated, but I wouldn't be excited about bringing her home because our house is a DISASTER! We're in the middle of a reno project, and ugh.  Stuff everywhere. 

Best Moment this Week:  We're really close to finishing the baby's room, and it looks AMAZING.  It'll be awhile before we get pictures done because we still have to take everything out of HC's room and redo her floors.  We're on kind of a tight timeline because the hubs has to go back to work.  

What I Miss: Still beer.  And Sleep.

What I am Looking Forward To: Meeting another awesome baby girl! 
    
Milestones: We are full-term!


Next Appointment:  January 7.  This is very likely to be my last appointment.