"Duck?" You decide!

Neurosurgery Follow-up

Today we had a neurosurgery follow-up just to be sure everything is still well with Marley's shunt. Vincent was miraculously well-behaved during the almost hour long time that we sat in the waiting room!! There was an 8-year-old little boy there to keep him company. People go to neurosurgery for all sorts of reasons, and  congenital hydrocephalus was not one of those reasons that I would assume the 8-year-old was there for, so when I started talking to his mother and she told me he had hydrocephalus discovered at 16 weeks gestation, I was a little surprised!

When I walked up to the seating area, this little boy was reading a children's book aloud. Amazing. I got to talk to his mother for a little over an hour, and learned more about their experiences, including the onset of epilepsy. When I asked her how old he was when that happened, she told me, "You don't want to know," considering it onset close to the age Marley is now. If it does happen to Marley, I will just do my best to handle it with as much grace as my friends have shown me, with unwavering faith. Until then, I'll (do my best) to stick with some of the best advice I've ever been given as a child: "Don't worry about it until it happens."

Anxiety is a tricky thing. I might sound crazy, but I feel like I'm constantly at war with myself in trying to control my thoughts and not let all of the "what ifs" creep in and destroy my day. I'm truly doing my best to take control of my own mind and choose to be happy, whether my body feels like it wants to be or not. This really has nothing to do with what's going on in my life, because I really have too much to be thankful for to let anything get me down. I know it's possible to do and I will!


The actual appointment went great. Marley has been really bashful to people she doesn't recognize straight away, and usually buries her head into my chest, but she reached right out to her doctor. I thought it was so sweet! The relationship with our neuro has changed quite a bit. As he compared Marley's MRI from December to her latest CT scan last month, he said "This is a drastic improvement. I'd say she has six months to a year for more brain growth until we need to turn the flow on her shunt down."

What wonderful news, all the way around! We won't need to be seen again (hopefully!) for three more months. He even gave Vincent a toy car when we left... how sweet!

I am overflowing with thankfulness for how the last 11 months have played out. It almost doesn't seem like reality. I don't want anyone to think I'm skipping along, rosy cheeks and all smiles as if I'm oblivious to some of the experiences others are facing. I'm praying for you and your little ones every day, and I wish I could take it all away from them myself, if only I could.

Playground Infatuation

Today after our O.T. sessions we headed to a beautiful little park close to where my husband works. It's just beautiful. It's very small, but it has two playsets with slides, monkey bars, and also there's a set of swings, which is encircled by a paved jogging/walking track. On one of the play sets there are bells that have different tones when you smack them with bare hands. Vincent and I found that the bells are really loud if you smack them with a stick mallet! Beyond this playground, is a beautiful view of open vegetation followed by forest. The breeze brought loads of little dandelion fluffs floating whimsically into the air. Today was such a beautiful day. The breeze made it a perfect day to go. Vincent and I found two empty snail shells. Poor guys! But, he thought they were pretty interesting to look at. Airplanes sometimes circle over the park and I don't just mean way, way up high. We could see lots of details on the planes as they went overhead. My little boy is in all out train/airplane phase. He waved excitedly to each airplane that flew nearby. We will need to invest in a box of sidewalk chalk for my little artist; as there were masterpieces left behind already. What a great idea!

Vincent climbed on the play sets and slid down the slides. He attempted the monkey bars by himself, but screamed as he just hung there. He's still a bit too small for those yet, but nice try! He absolutely loved running around with three other little boys. I pushed him on the swings for about an entire 20 minutes. Swinging is amazing for his vestibular awareness! It's a sensory thing. I think, perhaps, it was the little girl who was being pushed by her mommy on the swing next to him that kept him so attentive. Every time the two would swing in sync, he looked over to her and giggled and made kissing noises. Sheesh. He's only two and a half! I may add that after swinging time was over, he tried to follow her around and she was not having it! Poor little guy, already being rejected by the ladies.

 And yes, that is a messy cheesy chips face.

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."