Sunday, August 2, 2015

In the Beginning...

I had a relatively normal 2nd pregnancy. We had a couple extra ultrasounds, and everything looked ok. Baby Scarlett was growing at the rate she should, and was born full-term.
And that's where the normalcy ended.

From the moment she was born - the doctor held her up to show her to me - I knew something was wrong. Sure, the baby doesn't usually breathe right away - but she REALLY wasn't breathing. She was the deepest shade of purple/black I've ever seen on a person. I yelled to the doctor, "She isn't breathing!" He insisted she was ok, to just wait a second. But I knew - I could feel something wasn't right. I persisted, again. And before I even knew what happened, they whisked her away to a corner of the room, called in multiple people, and had to resuscitate her. I only caught a glimpse of her for a minute before she was wheeled away into another room. I hadn't even touched my new baby, and here I was, being informed that she was fully on oxygen.
Two hours passed, and just as they were about to life flight her away, she started breathing on her own a little. They cut down her oxygen a bit, and decided to let her stay. When I first met Scarlett, she had two IVs, an oxygen monitor, and bruising all down her back (we never were sure why - I pushed her out in less than 5 minutes, with no help,) but she was beautiful. And I was so happy to be with my little redhead.

Scarlett with her IVs

We ended up having to stay in the hospital about a week. She had low blood sugar constantly, and high jaundice levels.  After being discharged, we were readmitted two other times that month for jaundice.

Under the billi lights - you can see the bruises on her back

A rash from the lights

For the next three months, Scarlett was still extremely orange. She was an incredibly poor nurser, and at three months old, weighed as much as she did at birth. There was also the vomiting. It NEVER stopped. This poor baby would projectile vomit, even when she wasn't eating. Not only that, but my husband and I were worried - she never seemed to look us in the eye. We would take her outside into the sun, and she wouldn't wince. We would flip on a light at night time, and she didn't seem to notice. He and I brought it up a few times, wondering. We even brought it up with our doctor, but were reassured that as a newborn, sometimes they have a hard time focusing on things.

My tiny, orange baby

Regardless, he referred us to a pediatrician for the vomitting (because we had previously tried everything we could think of.) The pediatrician took some blood tests, and as soon as we got home, he called us, sounding panicked, saying she needed to be admitted into the E.R. as soon as possible. She had rocket-high sodium levels - which was deadly. While trying to get an IV in Scarlett, a nurse had flicked on a flashlight and accidentally had the beam go on Scarlett's face - and the nurse noticed that Scarlett did not react. She shined the light back and forth over Scarlett's eyes, and said to the doctor, "I don't think she can see." My heart dropped. I had suspected something like that as well...

IV in head, feeding tube in nose

Getting ready to be lifeflighted

Her heel from all of the blood draws - they
both looked like this

They ordered more blood tests and an MRI, and many more things I'm sure (but can no longer remember.) She eventually had to be lifeflighted 2 1/2 hours away, and assigned 8 different doctors. This is where I was told that Scarlett is completely blind, and that she had a laundry list of diagnoses:

-Septo Optic Dysplasia/Optic Nerve Hypoplasia: the reason she is blind - she is missing a part of her brain, has extremely small optic nerves, and pituitary problems.

-Hypoplasia of the Corpus Callosum: the part of her brain that connects the left and right hemispheres in almost non-existent.

-Diabetes Insipidus: the reason for her high sodium levels. Her body cannot regulate water, and it goes straight through her, leaving her constantly dehydrated.

-Schizencephaly: her brain is malformed (it kind of looks like Pac-Man, if you will.)

     *Adrenal Insufficiency: her body does not produce enough cortisol
     *Sex Hormone Deficiency: she will need to be placed on steriods and medicines later in life that will allow her to grow curves, have a period, have children (if possible,) etc.
     *Growth Hormone Deficiency: her body does not produce enough growth hormone; this is a "curable" type of Dwarfism, with help from medication.
     *Hypothyroidism: Scarlett's body doesn't produce enough thyroid hormone.

-Cerebral Palsy: because of the Schizencephaly, Scarlett has right-sided Hemiplegic Cerebral Palsy, meaning that the right side of her body has stiffness and weakness.

Because of Scarlett's multiple brain conditions, it makes it hard for Scarlett to understand that she needs to eat to live; she does not seem to have that instinct or interest. After much fighting and a lot of weight loss, a G-Tube (feeding tube) was placed in Scarlett's stomach. She now only eats through there, although we are trying to teach her to eat orally now.

Her first G-Tube

She has had 6 surgeries in 2 years - this was
for a Nissen Fundoplication (to stop her vomiting.)

And there you have it. If you're still reading, you're quite the trooper to put up with my medical jargon! I just wanted to give a summarized (believe it or not) version of how we came to find out about Scarlett's conditions, and what she was diagnosed with, as I am asked often.

I hope this may answer any questions you may have, or, if you are a mother to a Special Needs child, maybe you will see some similarities to yours in this story. Let me know!

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