Computed Tomography, Reminiscence, and a Divine Appointment

Today was quite an interesting day. So much went on today that I'm just not going to cram it all into one blog post, but I'll talk about a majority of it.


Marlena had a routine CT scan to confirm fusion of her sagittal suture at CMC-Charlotte. The radiology department brought back memories of when I went for the fetal MRI to rule out holoprosencephaly for my baby girl. I was very misinformed about what kind of sedation they were planning to use. It was just a little medicine in Marley's mouth that made her very sleepy. No general anesthesia as I had been informed before. I really did think that was going to be over kill. *rolls eyes*


Everything went really smoothly with her sedation medicine and the actual scan. I got my CD from the film library and started to head home, only I parked in a deck that was pretty far from the radiology department and couldn't remember how to get back to it from within the hospital. CMC-Charlotte is huge. You have Levine's Children Hospital, the main hospital building, and then another building full of specialty centers. In the specialty centers, also includes the maternal-fetal medicine office that followed me during pregnancy. As the nurse was escorting me through the hospital, she asked me if I had come by a Starbucks when I came up to radiology. "No," I said, "I came around on the sidewalk." Then she was confused. She stopped and wanted to know what color my parking ticket was. The hallway was bustling with hospital employees darting to grab lunch. A woman wearing a CMC badge overheard our conversation and she stopped and asked me to show her my parking ticket. I showed it to her and she said, "You're parked where I'm parked, come with me, I'll show you." So then we were on our way.


Marlena was still pretty out of it. Drunk, even. "Sorry, she's still pretty loopy. She had sedation for her CT scan."

"For Sagittal Synostosis?" asked the woman.

Now let me clarify to you all; I never once had any conversation with this woman prior to getting assistance with directions in the hospital as mentioned above.

I was a little shocked. Alright, well, a LOT shocked. Is it really that obvious?

"How did you know that?" 

 "My son is now 17 years old and had surgery by Dr. Hefner at six months old."

Dr. Hefner is a neurosurgeon in the same group of surgeons that Marley sees.

She invited me to her office, which just so happens to be in the same office as my maternal-fetal medicine facility. As I stepped through the door that leads to the patient rooms, memories flooded back in from months before.

The fear. Unknown. Devastation. Helplessness. No control. Tears. Brain damage. Limited quality of life.

Holoprosencephaly. 

TERMINATION?

Isn't it amazing how feelings can flood through you like a waterfall crashing down over your head, almost like that era in life flashing before your eyes in seconds? I shook the feeling as I looked down at Marley. I wanted to go find my "brain specialist" maternal-fetal medicine doctor. I should have walked down that hallway and opened every door until I found him to show him she's worth resuscitation, which is something he suggested that I consider at birth. He was heavily HPE minded at this point. When she was born, I recall her one minute APGAR score being a four. The report read that she was floppy and cyanotic with copious amounts of amniotic fluid in her mouth. I didn't hear her cry. I started to ask pressingly, as I was laying there on the table, waiting for it, "Why isn't she crying?" She was resuscitated. Her five minute APGAR score was a nine. That's my girl.

His profile on the office website reads: "Consultant for you and your OB/GYN with 30 years experience and a special interest in problem pregnancies, especially "planning for next time."

Problem pregnancies? Special interest? Especially planning for next time? Don't make me sick. God doesn't make junk. That's not just a quirky saying. It's the truth.


Regardless, God loves this man, too. I will pray for him.


I've gone way off course. Are you still following me? I have the attention span of a goldfish and my writing isn't great, but at least I get my opinions across.


So back to this lady's office we went. She showed me pictures of her children, and of her son who underwent the cranial surgery. She reached out to me. I am a firm believer that in a hallway of crowded people in the middle of the biggest hospital in our area during lunch rush, that things like this don't "just happen." A cousin of mine calls these "God winks." I've had several of these. It's nice to recognize them.


It gave me a small peace of mind to hear her story face to face. I have her name and her phone number. She's a very lovely, smart woman named Bobbie. If Marley needs surgery, I will have someone there to help me through it who's BTDT.


I'm still unsure of necessity. Necessity is the big question for me. Bobbie suggests that it is always absolutely necessary, as many of the cranio moms I've met on Facebook have. I'm not convinced, though. The idea of necessity is that cranio puts pressure on the brain in all the wrong places and can damage it. Marley's brain is already compromised by pressure, so this is why I'm unsure if cranio that is secondary to ventricular shunt placement is always necessary. Ultimately, I know it's up to me. I just can't imagine myself handing over a happy, smiley Marlena to a surgeon to break her skull open and have a field day in there. Typing that last sentence out just now really helped solidify the reality of the situation for me. It may not be brain surgery, but it is the closest you can get.


I'm just going to hold out on the fact that no one's confirmed that her suture is fused yet. I know in my heart that it probably is, but all of our hydro kids have oddly shaped heads. So if at all possible, I just want to leave her as she is. Her head is beautiful as it is.

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.