Diagnosis

My pregnancy was pretty normal, other than the fact that I was oh-so-sick the ENTIRE time! Blech!

On a Friday, I had one of my regular check-ups and my doctor said that the amniotic fluid was low and that if I noticed any decrease in fetal movement, to give her a call... So the next day I worked a late shift at my job setting an ad. This was about 2 1/2 weeks before my due date...

*Let me just add this: London moved CONSTANTLY the entire time I was pregnant. She was non-stop!*

SO, back to the story- that Saturday, I got home from work and sat down on the couch. Times like this were usually when London started really going crazy doing flips and piroutting on my bladder... so when there was NO movement, I was immediately a bit alarmed. My husband was working an even LATER shift and I couldn't get a hold of him. I called my mom then my doctor (do all women call their moms first, or just me? LoL!) So my doctor told me to go to the hospital and be monitored for a while. My mom met me there and later my husband came up.

After being monitored for a while it was decided that I would be started because London's heart rate wasn't quite consistent. Well, Pitocen only made it worse and after about 12 hours after being there, London's heart rate just went nuts. It would drop into the 60s then shoot up into the 200s in a split second.

I was rushed to the O.R. for an emergency C-section. I wasn't scared at all. In my heart, I knew from the moment I found out I was pregnant that it was a girl, and that something was wrong. I also had a strong feeling that I would be getting a C-section, I just didn't think my body would go through the birth of a baby like normal women... So I was calm and I felt ready.

From the point that the nurses ran into my room saying they had to get the baby out NOW to the point that I was back in my room to recover was all but about ten minutes, most of which was time it took to staple the incision and walking time- it only took about a few minute or two to slice me open and get her out.

London was (and is) completely perfect. When she was put into my arms, the first thing I noticed was her perfectly round head, chubby cheeks and the fact that her hair (or more accurately, her fuzz) literally sparkled in those hospital lights. She has the most beautiful lips and skin. She was never even a bit jaundiced and from all outward appearances, she was perfectly normal and healthy.

The first odd thing that I noticed was that she didn't like her hands or feet being touched. And when I say she didn't like it, I mean she would SCREAM when we tried to open her little hands or count her tiny toes. I was told that she would get over that quickly, that it was nothing to worry about, she was just still a bit sensitive to being touched. The second thing that I found concerning was that she never seemed to want to open her eyes and even when she did, it was for just a second or two, and she wouldn't open her eyes very wide. There was always an explanation for this as well- the lights are too bright for her, she's sleepy...

So we went home with our little bundle right on time! Actually, we got to go home about half a day early because I was recovering so well. London did just what a newborn baby does- she ate, pooped, cried, and slept normally. We were your average first-time sleep-deprived parents.

When London was just a few weeks old, she began having these crying fits... At first just a few nights a week but it quickly went to every single night, around the same time, she'd scream for about 2 - 2 1/2 hours straight. It wasn't just crying- it was full-force, blood-curdling screams. It was heartbreaking. To me, it seemed as though she was having abdominal pains because she would hunch forward a bit as she screamed. NOTHING calmed her, and trust me, we TRIED everything. As I mentioned, I knew something was wrong from the moment I found out I was pregnant, and for some reason I had it in my head that it would be something to do with her intestines and would be operable. I thought it would be fixable.

I took her to after-hours doctors many times and I was always sent home after being told it was colic or just gas. One doctor even told me, right to my face, that I was being a paranoid first-time mother. I never really came out and said, "Hey I have this feeling that something is wrong. Can you start doing tests on her?". First, I didn't want to subject her to anything that wasn't neccessary. Second, I didn't want to sound crazy; although, I was beginning to think maybe I WAS...

So on top of the crying, she began roll her eyes DOWNWARD until the entire iris was not visible. She would randomly have these little twitches that could have either been alarming or attributed to the fact that, at her age, her nervous system is still developing.

My patience began to run dry and I was at my wits end with the crying fits so I tried to make an appointment to discuss everything (even my gut instincts) with her pediatrician. He was on vacation. I didn't feel like this was something that could wait, so I went to the next best doctor I knew- that of my nephew and niece.

When we got there, as he was examining her, I began to tell him all about her crying fits. Before I could even GET to my feelings about something being wrong, he looked right at me and said, "I don't know why she's crying so much, but I can tell you that you need to get her in to see a pediatric eye doctor."

Um... ok.... So we did the whole referral thing and had to wait nearly a month before we could see the ophthalmologist at Primary Children's Hospital. In the meantime, London started to occasionally have these almost unnoticeable little jerking movements, and she continued to roll her eyes.

The ophthalmologist took a look at her and ordered a CT scan. I was told they would call with the results.

At our next regular appointment with London's pediatrician, I filled him in on what had been going on. He asked what the CT results were and after hearing that I hadn't been called, he had them faxed immediately to his office. I'll never forget that look on his face when he walked back into the exam room with the results. He said that there were some abnormalities, that because he's not a neurologist he didn't know what exactly it all meant... Here's a little testament to his awesomeness: right then and there, in the middle of the day in the the middle of our appointment, he whipped out his cell phone and said, "But I know who can tell us what to do next". He called a neurologist from Primary Children's on HIS cell phone, in the middle of HIS day and read him the results. He got off the phone and said I was to go, right then, to Primary's for an MRI. This was on a Friday, and I was told there would be an appointment made for us the following Monday to meet the neurologist.

My husband met London and I at the hospital and the MRI went fine. Just before we left, an old man approached us and introduced himself as the MRI something-or-other. He said he couldn't officially tell us the results but that it 'looked like something called lissencephaly'. Stupidly, we went home and Googled it...

Luckily, London's brain is not ENTIRELY affected. Her prognosis is unclear, but we continue to do our best to provide her with as rich a life as we can. We have our share of struggles and frustrations, but London has brought an incredible amount of light into our lives.

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