Some of your have already had the pleasure of meeting our newest addition, Emily Paige. For those of you who haven't I hope that you get to meet her soon or at least get to know her through this blog and our pictures. Emily was born on May 5th, 2012. (woohoo cinco de mayo!)
When Emily was born we were very shocked to see a LARGE dark spot on her right side (16 x 9cm). The doctor and the nurses were very good. They didn't act too surprised or whisk her away. They kept her in the room with us and cleaned her up while taking all of her vitals; just as they had done with Ryleigh when she was born. The doctor mentioned something about a 'small' birthmark. I knew that it was something more and was scared stiff. It was obvious that they had never seen anything like this. I didn't say a word and just sat there with eyes wide open, squeezing RG's hand as tightly as I could. RG had to let go when they ask if we wanted to take a picture of her on the scale. Shortly after that they brought her over to me and layed her on my chest, skin to skin. I sat there, holding her, crying. I couldn't bring myself to look at the large spot. As I held her I began to notice more smaller spots all over her body. We would later find out that there were 30 smaller 'satellite' spots.
The doctor suggessted that a neonatologist come look at her. He was there within 15 minutes. He knew what it was, but through his broken English and doctor speak we weren't able to decipher what he was saying. All I heard was brain damage and seizures and that we would need to see a specialist at the Children's Hospital. That didn't really help me feel any better.
My mom and dad were in the waiting room awaiting Emily's arrival and to this point they knew nothing. RG decided to go out and let them know that Emily had a pretty sizeable birthmark so I was a little out of sorts. They came back shortly after and met our bundled up bundle of joy. I was reluctant to show them, or anyone for that matter, her large spot until we knew exactly what it was.
Shortly after their visit we were moved from labor and delivery to our room. Once we were settled in our room I told RG to start 'Googling' giant birth marks. It wasn't long before he found the Nevus Outreach page (www.nevus.org) with a picture of a baby that had a birthmark almost identical to Emily's. It wasn't until the next day that we got confirmation from a dermatologist that Emily has a condition called Congenital Melanacytic Nevus. This basically means a mole or birthmark that is present at birth, similar to a mole that you or I might have, just super-sized. The dermatologist referred us to a pediatric dermatologist at Children's Hospital in Chicago. She also said that Emily would need an MRI to determine whether or not she had NCM (neuroceutaneous melanocytosis). This is where Melanocytes, the same cells that make up the moles on her skin, are present in the central nervous system. This could cause a whole host of issues such as hydrocephalus, unconsciousness, vomiting, and certain reflex and eyesight issues. And to think, up to this point I had just been concerned with her physical appearance. All of those things that the Neonatologist had said the day before were possible. While this was incredibly frightening I tried not to think too much about it. There was no reason to get all worked up until we knew for sure if she had NCM.
Around the same time that the dermatologist stopped by so did RG's parents and my parents with Ryleigh. Ryleigh was very excited to meet her baby sister. I couldn't believe how big Ryleigh was next to Emily! Up to this point she had been my baby. Now she was a BIG girl and a big sister. We had been preparing her for this day for months. It took a week or two to get her to call Emily by her name instead of 'little sister.' We didn't reveal the name to anyone prior to Emily's birth and since Ryleigh can't keep a secret we couldn't tell her either, so little sister it was.
So fast forward to day two and we are taking Emily to the NICU for sedation. It was heart breaking seeing all of the tiny babies in their incubators. This made us feel very lucky knowing that we were able to hold our baby and that she would be coming home with us the next day. The nurse took her for the MRI and she was gone for almost 3 hours. RG & I used this time to read up on CMN and learned that it was not caused by anything that I did or didn't do during my pregnancy. PHEW! This was a load off my shoulders since the thought had been running through my head since she was born. All I could think was that it was my fault and was caused by something that I had done. My pregnancy with Emily wasn't an easy one due to the fact that I wasn't able to eat many things such as whole grains, dairy and certain fruits and vegetables. This made getting the necessary nutrients very difficult! I lived on peanut butter & banana sandwiches and graham crackers. What I would have given for a glass of milk, cottage cheese and ice cream!
After Emily awoke from sedation and was able to eat a little bit we were allowed to take her back to our room. The nurse that was with Emily during the MRI let it slip that everything in the report looked clear, which was great news! We were given a CD with the MRI images to take to the dermatologist at Children's Hospital for further review.
By now it was about 6 pm and we were still scheduled to go home, but we had to wait for the hospital pediatrician to release Emily. We were finally on the road to head home around 8:30 pm. It was so nice to finally be headed home; both RG and I were getting stir crazy being in that tiny hospital room! We were told that someone from the dermatologist's office at Children's Hospital would be contacting us within the next few days to set up an appointment.
There are so many things about this condition that we have yet to learn but we are taking it day by day and are just happy to have our precious Emily home with us! Since she doesn't seem to have CNM and is completely healthy other than her spots we seem to be pretty lucky. I will do my best to update this blog as often as possible so that you are able to follow along with her progress. Stay tuned!
