Pirate Princess

It took almost two months to get Marley's pediatric ophthalmology appointment because there are only five in the entire Charlotte, N.C. area! We had that appointment on Sept. 7, which exactly one year back to the day, was Marley's fetal echocardiogram to ensure everything looked good with her heart following the devastating news of a brain anomaly.

It was an amazing appointment! We are so blessed. Marley's neurosurgeon spoke highly of our new ophthalmologist and has even performed surgeries with her in the past. When she began to assess Marley's eyes, she started speaking an entirely different language to her assistant which made me a little uneasy. As any hydro mom knows, foreign medical language is always a bit unsettling, at least until the dust clears and you're enlightened with a simplified translation. We've always known that Marley's eyes turn inwards, it's quite obvious, but we didn't know she has amblyopia, which is a fancy word for "lazy eye." Marley's inward turning eyes is called strabismus, but more specifially to her, esotropia. Right now we're to use a patch on Marley's left eye for two hours per day to make sure her right eye does some of the heavy work while she's awake. The good thing is that we're treating her super early. If it is caught late, people with amblyopia suffer permanent vision loss in the "bad eye."

This is most likely caused by her hydrocephalus, but so far, it's the only "concern" we've had, which is very small to say the least. Marley's ophthalmologist described her optic nerves as "absolutely beautiful." 

There are extremely cute patches available at http://www.ortopadusa.com/.

On This Day In 2010: Aug 31

On this day in 2010, my Facebook status was:

An update on Marlena's situation: The results from the amniocentesis came back today. Her chromosome structure is normal; which rules out any genetic cause and it also rules out things like Down Syndrome. The infection study also came back negative. So the cause is not genetic or infectious, which is good news!!!!

 

On This Day In 2010: Aug 30

 I really do love how Facebook allows us to see what our status was a year ago each day. I will be posting the interesting ones.

Of course, this one was ten days after diagnosis. I'm surprised I was already talking this way only ten days after.




On this day in 2010, my Facebook status was:



"I'm in the first stages of acceptance. She will come to us how she was intended to."

"Miracle" Marley appears in our local newspaper!

Just click on the pictures to read the story!

August 2010

 August is a very significant month for me because of everything that happened during that month. It was a wonderful month and it was a scary month. I've had August on my mind because it's right around the corner and I've just been reminiscing about the events that took place then.


Our First House


We moved into our first ever bought house together in August. We are very proud of this accomplishment! 1900 sq ft, three rooms, two bathrooms to raise two children in.

August 1, 2010

We took our first family vacation to Myrtle Beach! We had SO much fun. We visited the aquarium, swam in the ocean, and browsed shops. We took walks on the pier and watched as fishermen caught all kinds of things including baby sharks and the awkward looking ribbon fish. I really enjoyed relaxing on the hotel balcony and feeling the sea breeze. I loved the view of the beautiful sea oats and palmetto trees. We had such a wonderful experience. Vincent had a great time, too. I'm sure Marlena was happy as could be, floating around in my tummy.

This is all of us together on our first family vacation.

August 6, 2010

My husband and I have been together for a long, long time. We met in an internet chat room when we were just fifteen and playfully had an "internet" relationship. He was from Michigan and I was living in South Carolina. We didn't take it seriously at all when it first started, but soon it blossomed into something very serious. We had Vincent in 2009. After we became pregnant with Marlena, we both decided it was time to make it official and get married on August 6, 2010. We had already been together for so long, we already felt married! So we made an appointment at the court house with no rings and tied the knot officially. Our "One Year Anniversary" is coming up. How special!

 August 20, 2010

This is the day my husband and I went for our fetal anatomy ultrasound. I had already had an ultrasound at around 11 weeks during my pregnancy because I felt so much anxiety that something wasn't right. The OB gave me a treat by letting me pop into the ultrasound room to see my little one's heart beat and punches and kicks. This reassured me everything was fine.

This was a very scary day. I remember going back out into the waiting room after the ultrasound was done and my husband and I had already blasted all over Facebook, "SHE'S A GIRL!" Then about 10 short minutes later, myself still completely oblivious that anything could be wrong at all, we were called back again and sat with the doctor. "Concerns." That word sticks out the most to me. "Should I be crying right now?" I remember asking that question before I fully understood the situation. "Level II ultrasound is needed, but it's Friday afternoon, so you probably can't be seen until Monday." I was hysterical at this point. Good thing everyone was at lunch by this point, because I was making a scene. "NO. I NEED TO BE SEEN T-O-D-A-Y." Thankfully, there was a cancellation and we made it there in time.

And so set forth the emotional basket case I became over the following months.

Overwhelming Thankfulness

I never expected on the day of our fetal anatomy ultrasound that I would leave my OB's office in tears and not drive home, but to a specialist's office. I never saw it coming.




I never saw it coming.

After the doctors told me what they were "supposed" to tell a mother who's child's brain was smooshed so badly that you would see much more fluid than brain tissue, I didn't expect Marlena to thrive and flourish, but she is. I never saw that coming, either. Life is full of surprises.




I never saw that coming, either.

I sometimes think, you know, I need to get off this high of feeling absolutely euphoric. I need to stop blabbing to the world that I am absolutely exhilarated beyond belief that my child is cooing, smiling, grabbing things, CRAWLING! Marlena still can't sit up on her own unassisted, but I feel that once her body weight catches up to her head size she'll be able to balance a little better.

No one guarantees a tomorrow. No one can guarantee that the rug won't be pulled out from underneath you at any moment. So I will continue to just relish in these moments.

And I am thankful. Oh, am I thankful as ever. As I tuck Marlena into her crib at night and see the shadow of both of us, together against the wall. I am thankful that there is a shadow of us. Together.

I am satisfied in all that you are, little one. It's also bittersweet to me, remembering your brother's milestones and great achievements that I was SO elated for him to do. I even CRIED when he took those first steps. I took for granted that he always would take his first steps, but I cried when you crawled, little one. You have taught me, that nothing in life is guaranteed. I love you and Vincent so much, from the bottom of my heart and all that I am, and your daddy, too.

I asked Marlena's therapist if she thought she'd be in "mainstream" school. Looking back, I don't think I should have asked. I'm so happy with my children and who they are. I'm sure mostly everyone has heard, "What you don't know won't hurt you." Well, I don't want to know!

Her response was, "We'll talk about it when she's three."

I will savor every moment with them both and try to focus more on who they are and not worry about who they will be in the future.

Guess Who's Crawling?

I have already shared this feat with many of my friends on Facebook, who I have no idea where I'd be without through this journey! I believe that having other families to converse with who have children with the same diagnosis, the same daily fears, and the same feeling of absolute euphoria when their baby meets a new milestone that they were otherwise told may not be able to do, can be very therapeutic.

Marlena is "commando crawling!"