Leah is 1!!

Today, our little Leah turns 1 year old…can you believe it?! We certainly can’t. We didn’t have the easiest first year, but it has most definitely been worth it. Leah is a walking, signing (and occasionally talking), ball of energy. She loves to dance, give kisses and hugs, tear apart bookshelves, see babies, and play with her big brothers and sister. Pat-a-cake and the Itsy Bitsy Spider are her favorite songs and any book with pictures of babies are always a winner, especially Daddy Loves Me. She is a mama’s girl, but loves her daddy, too, and we of course, adore her! This past year has brought us so much joy but a few fears, as well.  We have had several health scares with our little Leah and over the past 8 months, we have been led to what we think are the answers. The rest of this post is long, but I really hope it’s worth the read.

I actually wrote this back in October because October is Dwarfism Awareness Month…but, something held me back from posting it then. I am posting it now in hopes of raising awareness for all little people.

One year ago today, we were blessed with our 4^th child, a beautiful little girl. My pregnancy with Leah was similar to Noah and Emily’s—lots of painful, timeable contractions that led to nothing but a few extra ultrasounds to make sure she wasn’t coming out early. During those ultrasounds, we were able to confirm that she was indeed a girl, had a big noggin with little to no hair, and short legs that would all put her to be about 6.5 pounds on her due date.

Fast forward a few weeks, and 9 days BEFORE her day after Christmas due date, our little Leah decided it was time to make her grand appearance—7 lb 14 oz and a head FULL of dark hair. So much for ultrasound predictions, we thought. 

Leah was born with a skin tag on her ear and a deep sacral dimple at the base of her spine. The skin tag could be indicative of other ear and/or kidney problems since they develop at the same time, but her hearing is fine, so it is most likely just a cosmetic issue. The plastic surgeon would like to remove it now that she is one, but we will probably wait until she is older. The sacral dimple being as deep as it is, could also be indicative of other problems, and was much more of a concern for us. An ultrasound in the hospital ruled out the scariest of these problems—spina bifida. It did, however, point to a possible tethered cord, which would have to be released by a neurosurgeon. After months of worry and a brain and spine MRI, the neurosurgeon gave Leah the all clear—no tethered cord, just a small cyst that will shrink and eventually, disappear on its own. She does have some fluid on her brain, but it will not cause any problems.

When Leah was first born, she was a very sleepy baby and it was almost impossible to keep her awake to nurse well. By her 2 month appointment, her weight and height both had dropped to the 16^th and 17^th percentiles, respectively. Nothing super concerning, aside from being clearly skinny. We managed to get into a good routine and after a week of weighted feeds, she started staying awake and packing on the pounds. By her 4 month appointment, her weight was still only in the 20^th percentile, but she was looking fuller. Her height was still on the decline, though, down to the 4^th percentile. It was at this point, with her head circumference in the 90^th percentile that I remembered back to all of those ultrasounds I had with her and her large head and tiny legs. At my last ultrasound with her, there was a 6-7 week discrepancy between her head and femur measurements, to which my OB said—yep, there is a discrepancy, but there’s nothing we can do about it now. With Leah’s other issues after birth, we really didn’t even think about her head and legs.

By Leah’s 6 month appointment, her weight was on the rise at the 40^th percentile, her head was aTthe 95^th percentile, and her length was now at the 2^nd percentile. Our pediatrician still thought it best to wait and see—so, against our better judgment, that’s what we did. At Leah’s 9 month appointment, her weight was still going up, at the 60^th percentile, head holding steady around the 95^th percentile and her height had now fallen off the charts. After months of worry, we finally got a referral. Leah’s pediatrician wanted to start with an endocrinologist even though she does not believe Leah to have an endocrine issue. When we met with the endo, she agreed that Leah likely does not have an endocrine issue and her disproportionate features are more likely to be a form of dwarfism.

Leah has been referred to a geneticist now, but we were unable to get an appointment with him until January. Our endo has been amazing, though, speaking directly with the geneticist minutes after our appointment. She is ordering tests in collaboration with him while we wait for January. He looked over Leah’s growth chart, medical history, and the notes the endo gave him and believed Leah’s most likely diagnosis would be hypochondroplasia.

Hypochondroplasia is a form of dwarfism similar to, but typically more mild, than achondroplasia (the most common form of dwarfism). Females with hypochondroplasia typically stand between 4 ft 2 in and 4 ft 11 in tall. Children with dwarfism have smaller airways and can have issues with breathing/snoring and sleep apnea. They often have low muscle tone, causing delays in gross motor development and can also have issues with compression of the spinal cord.

We had a skeletal survey done for Leah, which came back normal, so at this point, we are still without an official diagnosis, other than short stature. Hypochondroplasia can sometimes be so mild on x-rays that signs of bone deformities will not show until an older age, so we still feel like this is the most likely culprit given her measurements and physical appearance. We will likely have the chance for a genetic test (which only catches 70% of hypochondroplasia cases) in January, but we will have to wait and see. There are over 200 kinds of dwarfism, some unique to 1 individual. There are also a myriad of endocrine and other genetic issues that have yet to be totally ruled out. Altogether, this means we could realistically go years without a diagnosis for Leah, other than short stature with an unknown cause.

At 1 year old, Leah is wearing 3-6 month clothing, even though she weighs in near 22 pounds. If she weren’t so chunky, she would likely still be in her 0-3 month pants. The rolls are nommable, though! She is short, but she is also happy, healthy, and oh-so-adorable! She still nurses well and eats table food like a pro—no seriously, think NFL player...the girl can pack away some food! She sleeps well (finally!), but she does snore (LOUD!) and may eventually be referred for a sleep study. She was slower than our other kiddos to gain good head control, but she’s been crawling, pulling up, and cruising since just shy of 7 months and has been taking steps for about a month now and fully walking for about 2 weeks, which is AH.MAZ.ING! For now, her gross and fine motor skills are right on track, if not a little ahead. If other health issues arise in the future, we will meet them head on.

Right now, Leah is on target to reach an adult height around 4 ft 9 in. Her growth will likely slow as she gets older, though, so for now there is really no good estimation of her adult height. Leah will be little, regardless of her diagnosis, or lack thereof. She will also be amazing and unique and loved and she will know that she can do anything. We are so blessed to be her parents and wouldn’t change a thing about her!

We never dreamed we’d have reason to know so much about dwarfism and no matter what may or may not be going on with our little girl, we wanted to take this opportunity to share our story and spread awareness. Since learning of Leah’s issues, we have seen a few things here and there that are seemingly harmless, but really hurtful to a little person or a parent of a little person.

Many people probably don’t realize that use of the ‘M’ word is seen as offensive to the little people community. Dwarf or little person are more acceptable ways to refer to someone with a skeletal dysplasia. Really, though, Leah and other little people, don’t need labels. Their names typically work just fine. Afterall, a person’s a person no matter how small (thanks, Dr. Seuss!).

To learn more about dwarfism, visit https://lpa.memberclicks.net/assets/lpa%20d

Fall Pictures

My handsome boys

Silly girl

You'd never believe the amount of work I have to go through to get a good smile out of this girl. It's all worth it, though, with gems like this!

Our sweet family

Just us girls

This pic makes my heart melt!

He's so grown up!

Love these kids!

Black & white beauty

It's been far too long since we took the time to get a good pic of just the two of us. Love this man!

Big girl!

Her, "I'm a pirate" smile. She has the Argh! down, too!

Daddy with his sweet baby girl

Silly monkey

He's got the model poses down

Sweet sisters

My greatest wish for these guys is that they will always put each other first. Brothers, sisters, and best friends for life!

Happy Easter!

Room Mom Stuff

So, I made the not-so-smart decision to be room mom for Kason's class this year. Room mom while pregnant and then, with a newborn, is no easy feat. I plan all of the parties, by supplies, etc., as well as get an item ready for the school dinner auction. Here's what we came up with:

Kyle and I will be spending our first evening away from Leah for the dinner auction this Saturday. It should be a fun night of dinner, dancing, and adult conversation. Here's hoping Leah does well and the older kids behave nicely for Kyle's aunt and Josie.

Leah's Health Scares

Leah was born with a sacral dimple. Kason has one, too, but his is very shallow and was never cause for concern. Leah's dimple is deep and our pedi could not see the bottom. Deep sacral dimples can be an indicator of a spinal cord problem, such as spina bifida or a tethered cord. Because Leah's is so deep, our pedi ordered an ultrasound while we were in the hospital.

Kyle and I were really not concerned at all since Kason also has one and it has never been an issue. After the techs came in to do Leah's ultrasound, though, we got a little worried. The ultrasound seemed to take FOREVER and the techs, of course, refused to tell us anything. Our wonderful nurse knew how worried we were and bugged the techs and our pedi for any info she could get.

Shortly before our pedi called Kyle to tell him what was going on, the nurse came in to tell us she spoke with him and he said that while the ultrasound did rule out spina bifida, it was inconclusive. We later found out the inconclusive part was that Leah might have a tethered cord, which would require spinal surgery to fix.

After our 2-week checkup, Dr. P referred us to a neurosurgeon at the Children's Hopsital. We went in to that appointment a couple of weeks later and were scared, to say the least. We knew that in all likelihood, the neurosurgeon would want an MRI and Leah would need to be sedated.

Imagine our surprise and joy when the neurosurgeon took one look at Leah's sacral dimple and said she was fine. He was not as gentle as the nurses and our pedi. He spread her little butt cheeks apart and said, "see that? There's the bottom of the dimple. Your pedi was just too gentle.". Hallelujah! He does still want to take a peek at the ultrasound images since the radiologist said she had a borderline thickened terminal filum, which is an indicator of tethered cord syndrome. At this point, he is convinced that no further testing will be needed and Leah is 100% okay.

In other news, Leah has a skin tag on her ear, so we have also been referred to a plastic surgeon to have it removed. She ALSO has an umbilical hernia. Her pedi said it will most likely resolve by age 3 and if it hadn't by that point, we would talk surgery. It is already going down, though, and I don't think anyone else would even notice it at this point. I will probably scream, though, if surgery and my baby is mentioned again!

The last health issue we have going on is lack of weight gain. Our little Leah is quite the lazy nurser. We have struggled getting weight on her, but I think I've finally managed to get a system down that is working. Since we have a baby scale at home, I am doing weighed feedings to make sure she gets a minimum of 22 oz, but shooting for 25 oz a day. So far, so good. With nursing 8-10 times a day and following feedings of less than 2 ounces up with a bottle of pumped milk, she has put on 6 ounces in the past 4 days. I am so happy I was able to manage without using formula and hope we can keep the improved weight gain up!

So, after all of our issues, we are thrilled to say that Leah seems to be happy and healthy!

Leah Noelle

The final piece to our puzzle (pending any unforeseen circumstances) is here.

Leah Noelle Ottinger was born December 17, 2013. She came 9 days before her due date and after days and days of excruciating contractions. She had a full head of dark hair and weighed 7 pounds, 14 ounces and was 19.5 inches long. We were SHOCKED at her size because we had been led to believe through many, many ultrasounds that she would be on the small size. We were expecting under 7 pounds at 40 weeks, so an almost 8 pound baby over a week early was unexpected.

The night before Leah was born was similar to the night before both Emily and Noah were born. I went to bed unsure if it was labor. I took some Tylenol PM and tried to sleep. I woke up again around 5:30 still contracting and got in the bath. Contractions didn't get any better, but I still wasn't sure if it was real labor. They had already tricked me a few times in the previous days only to go away after a night of sleep. I was really scared labor would go super fast since it was my 4th baby, so after an hour, I decided it was time to go in.

Grandma O was with the older kids, so we said goodbye and were off to bring baby Leah home. We got to the hospital and were checked in about 8:00 am. At this point the contractions picked up and we knew it was real labor, so when I was checked and only at 3cm, I immediately decided to get the epidural. I had already been in early labor for 12 hours, so it was clear it was going to be slow going.

The hospital we delivered at had a rotation of nurse anesthetists and they were amazing. I got my first working epidural ever and they came back often to check on me. The nurse who put it in even came the next morning to check on me. I can't speak highly enough of them.

Shortly after getting the epidural, my doctor came in and wanted to break my water, but I refused. She wasn't too happy about that, but I needed to rest and I knew that if my water was broken that early, I would likely go very fast and that amazing epidural would have been for nothing.

So, I rested for a while and she came back in around 4:30. At that point, I was 7cm and she broke my water. Shortly after, I progressed enough to push. Leah descended very quickly, which caused some scary moments with her heart rate all but disappearing on the monitors. I saw the nurse worriedly glancing at my OB, but she played it off nicely and said we were good and there was nothing to worry about. After a few pushes, she was born at 5:57 pm and was kind enough to wait until being placed on my stomach to pass her first stool. Yay me!

She was a little blue, but perked up within a minute or so. Her APGARs were 8/8. The hospital experience was the best we've ever had. The nurses were wonderful and Leah never left our side. We have had a few health scares with her, but we are hopefully past those.

Here is our newest princess:

Mommy and Leah

Pretty princess

Noah adores his little sister!

Christmas Eve

Sisters and best friends forever!

Kason meeting his littlest sister - I LOVE this pic!

Cutie all wrapped up

Sleeping beauty

Love her little mouth

Let's see if I can get back into this...

I have always wanted this blog to be my version of a 'baby' book for my kids as they grow up and let's face it--I've fallen down on the job. So, let's see if I can get back in the swing of things. Over the next few days/weeks, I hope to catch up with all of the great things I've missed blogging about, starting with Leah's birth. So, here we go.