"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."

"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!"

Marlena Has Now Met 2 Hydro Friends

Today Marlena and I had the wonderful opportunity to meet another child with a shunt. This is a picture of Marley and her new friend, Kyleigh! Kyleigh was born prematurely and she had a severe brain bleed which led to her hydrocephalus. They tried to get away with just using a VAD (Ventricular Access Device, used to remove CSF manually with a needle,) but that pesky hydro ensued anyhow and Kyleigh had to get a shunt placed as well. Kyleigh and Marlena have the same neurosurgeon, Dr. McLanahan. This is the same surgeon who placed a shunt in a close friend of mine when she was an infant. She graduated with me and we're now in our mid 20's! I'd say he's been in the shunting business for quite a while. Thankfully, Kyleigh and her mommy only live about 20 minutes away. How awesome is it to have someone who fully understands life with shunted baby living so close!? Not that it's awesome to rely on a shunt or anything, because it certainly isn't!

Marlena met her first hydro friend at Duke Hospital during our visit for her second cord blood re-infusion. Michelle is so pleasant and her son is nothing short of amazing. Michelle just held Marley, stroking what little hair she had at the time while she snoozed and swayed back and forth while we chatted. It was an awesome visit, even though we weren't able to meet a few other families who we had planned to because everyone was sick! Hydro friends rock! And who better to become her first hydro friend than none other: The Amazing Owen! :)

P.S. Marley's next neurosurgery follow-up is Aug. 30th. I'm pretty nervous about what they'll have to say about the shape of her little noggin'! There will be no cosmetic chopping on my baby girl!!!

My Backyard Wish List

There's nothing wrong with wanting more, is there? I don't think any of this will be a viable option until the water problem is cleared up, though. (Not to mention that little teensy-weensy financial problem, too, yeah?) This list is all very materialistic and trite, but it has just been in the back of my mind this Summer.

- Chain link fence; It would be so nice to play with Vincent outside within a fence. I really hate living on a main road.

- Some trees; Trees are nice. I would love to plant a couple pecan trees.

- Swing set; I have wonderful childhood memories of playing on a swing set. I long for my children to have similar memories. They were good ones.

- Sand box; I had SO much fun in my turtle sand box as a child! A bad memory with it was getting in it and being attacked by fire ants who had taken over--- It hadn't been played in for months when this happened. The memories are only vague, but I remember running into the house screaming and my mom pouring either peroxide or rubbing alcohol all over my legs.

- Patio/Porch; The back yard isn't readily accessible. We only have a side door. Patios (or porches) are awesome for entertaining and just walking outside to enjoy a little of the outdoors for moments at a time, which is often all I really need.

- Grill; Who doesn't like grilling? It is the heart of Summer, which currently has been mostly spent inside for my family. Our back yard is pretty bland. And floody. My step-dad makes some awesome steaks and grilled onions in a foil concoction. Delish!

- Furniture w/ shade; It gets SO hot here in South Carolina. We do need our shade if we're to spend any time outside.

- Shed; Our pushing lawn mower is currently being stored in our neighbor's shed. I'm so glad they allow us to keep it there, but it does suck to ask them for a key every time my husband decides to mow. It would just be nice in general to be a little more self sufficient.

- Garden patch; I dream of maintaining my own little vegetable garden! Squash, radish, collard greens, green beans, cucumber, tomato... these are all things I remember thoroughly enjoying from our garden growing up as a child. I would bite into a tomato straight off the plant!

- Flower beds; I would love to maintain flowers. They are easy on the eyes and I have such a creative spark for what I would like to do out there.

I can envision it,
but it just isn't there in
reality.
Someday, Hydro Mom.
Someday.

Flip Flop Teething

I sure would like to see how Marlena is doing this, but it seems every time I turn around she's in a different place than she once was. She's not crawling yet, so I think I have a super rolly polly bug on my hands. This time, she found my flip flops.

This is to give an idea of where she was on her play mat.

And here's my wonderfully teethed on shoe. :)

Avery's Shoes

Marlena is now the proud owner of a beautiful little blue flower clip from Avery's Shoes!

Please support this boutique! The boutique is owned by Avery's mom! The proceeds go towards helping Avery, who was born with hydrocephalus and cerebral palsy, receive therapy.

Please "Like" her Facebook page here and check out her Etsy.com shop, too!

Prop Sitting

I am seriously impressed with how well Marlena is trying to sit up with this prop sitting technique we learned at P.T. !

THOUGHTS OF A MOM by: Maureen K. Higgins

A mom from our hydro group on Facebook posted this and it is just so beautiful I had to share it, too.



THOUGHTS OF A MOM
by: Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.
You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right.
Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversity of our child's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose child's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable.
We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry. We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for
the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Lots Of Loops

 

These are some of the things I've been working on lately! I just love working on hats! I am sure once I get tired of making hats, I will try to make other things. It is just so easy to get creative and let your imagination flow through the yarn. I didn't go by a pattern for the white pony at all!

I have opened up an Etsy.com crochet shop! If you would like a custom made item, there is a tab on the side where you can request something to your own taste! I would be more than happy to make something unique just for you as I work on getting the shop up and running and add more things.

Here is the link to my Etsy.com shop:

http://www.etsy.com/shop/lddewar


I am also still making hats for Hats For Hydro! Please click this link to see what that's all about!

 http://www.facebook.com/pages/Hats-For-Hydro/211368058892359

Thank you very much for all of the support and encouragement I've been receiving from all of my friends and family. It really means the world to me!

Yummy!

 Can you guess what I'm having for dinner?

More, please! (She looks like a baby bird!)

Okay, lady, where's the rest? You don't mess with my food!

 

 

Ah, a nice, warm bottle to wash it down. All better!

Rockin' and Rollin'

This is a picture of Marlena earlier today. Originally, she was right next to the couch where you see the teething ring. I walked away to do a couple chores, and when I checked back in on her, this is what I found! She sure is scooting along! I am so thankful, every single day for my beautiful daughter.

Happy Half Birthday, Marlena!

Marlena turned six months old today. It is hard to believe that my little baby girl is already half a year old. Where has the time gone? Why do we always find ourselves asking that question after having kids? It's strange! She weighs a little over 16 lbs. and she's about 26 1/2 inches long. I think she's doing really well! Her head circumference has plateaued at about 46.5 cm. Six months old. Wow.

 I would now like to reminisce about the three days that I considered abortion. I was in my 21st week of pregnancy when I was told that she most likely had holoprosencephaly with severe hydrocephalus. The doctors spoke of nothing but doom and gloom, and about how they weren't sure if Marlena would be able to perform even the simplest of tasks along with the talk of vision and hearing impairment.

I was a complete emotional basket case during my pregnancy. I've always been against abortion, but there I was, considering it. It went against everything I've always believed in. I was such a hypocrite to consider it as heavily as I did, and I might I add that those three days of contemplation were the worst three days of my pregnancy. 

During the night of that third day, I was driving back to my mom's house to pick up Vincent after dropping my husband off to work. I was having such a hard time. I was so lost, in such absolute despair. I saw a church with a lot of cars. I was crying hysterically when I drove up, parked my car, and walked up to the doors where some men were in a group talking. They looked at me, with concerned expressions, and escorted me inside. Tears still stained my face incessantly, one after the other, as if they were racing gravity to get down my face. I was hurting. I was alone. I was crushed. My baby, who we thought for those euphoric fifteen minutes in the waiting room was perfectly healthy, was sick. Her future was uncertain.

I found peace that night, as a woman took me into a room alone. She took both of my hands into both of her hands. As I continued to explain what was going on with my baby's brain, she stopped me mid-sentence and said, "Sweetie, that's called hydrocephalus. I'm a nurse." I was a little bit shocked. Looking back, I view this meeting as a divine appointment. I looked up to her, in the most girlish, painstakingly hoarse voice, "If I abort this baby, is that murder?" She paused for a moment and said,

"God breathed life into your baby."

I felt like these words were being spoken through her by Jesus himself. The conviction in her soft, pleasant voice when she spoke this sentence flowed into my soul. I didn't just hear these words, I felt them. She took me into the main area of the church where they were having a special guest speaker that night. I cried the rest of the night, holding both hands on my big belly, praying for a miracle. My family was pretty angry with me after I got home, because I didn't exactly tell anyone where I was or what I was doing. I just had to go. I had to find out more about the only One I had to turn to. Now I know that He is real. Miracles are still happening. Jesus is still working through people to help us. I am so, so thankful.

Earlier today I saw a girl while I was picking up some groceries who was there at the church that night. I haven't been back to that church since that night. A couple friends encouraged me to try out Renew, a church of a small, but tight knit congregation. I love them so much! So I started to learn more there and embarrassingly, haven't been back to the church I went to that night. The girl that I saw there remembered me. We used to ride the school bus together a while back. As I spoke more with her about everything I've just blogged about, she realized who I was talking about. She gave me her phone number and name and we connected again today after almost 10 months.  It was only for a few hours, but she set the foundation for my state of mind for the rest of my pregnancy. Of course I had days where I'd freak out, but during those harder days, I always knew from that point on that I had Someone to put my faith in and turn to.

I look at my perfect, beautiful girl, now at six months old, and words just can't describe how thankful
I am for her.

 

A Hook and Some Yarn

Over the last few weeks, I have been dabbling in the art of crochet. I think I'm doing well with it and must remind myself that practice and patience will only make me better at it. I've already completed some really cute hats. They are so fun to make! I haven't really had a hobby that I've enjoyed for a while now. I guess a lot of my loss of interest stems from having two babies in diapers and being stuck inside while my husband works. In crochet, you loop yarn over, and over, and over again! With this new found love of crochet, I have been inspired to start a little online shop for the things I intend to create in the future, aptly named "Loop-de-Loop!"  My husband was sweet enough to make me a logo in PSP all from scratch! Our family really needs another form of income. We already can't afford to pay the bills we have on his income alone, so something has to change. Regardless of that, I have a very giving heart. I believe that we should use our skills to serve others, as the Bible tells us to. It just seems so second nature to me. So with this, I've also received an amazing amount of support and positive feedback for my idea of "Hats For Hydro," where I wish to give every new little one who is beginning their lives into the journey of hydrocephalus a hat that does them justice and keeps them warm. I've already made one, albeit slowly, and sent it off today. I've added some pages to my blog for each of these.

In other news, I believe Marley is going on a growth spurt! She ate 7 oz. at 2PM, 7 more oz. at 4 PM, and then another 7 oz. at 6:20PM! She was just getting so angry with me for each bottle, and each time, they soothed her back to her happy self. She has been somehow scooting herself across our family room. She kind of puts her head down on the carpet, and pushes her feet against the floor at an angle to get a little inch forward. She's doing it really slowly, moving perhaps a couple feet over 20-30 minutes. She really, really wants to go! I am thanking the Lord for each miracle after the other. I had a wonderful phone conversation with our minister from church today and I just loved his ideology that "Miracles don't run out." 

Bedside Manners and Miracles

I've met with Marlena's neurosurgeon for now a total of three times. The first two times highly upset me because of the comments I let get to me. This time was a pleasant visit. I was so nervous, but he wasn't too bad this time around. I think perhaps he's caught on to some bedside manner etiquette!

The good news is that her shunt has been working well. He could see about one centimeter of improvement in the measurement of her ventricles since her last cranial ultrasound across the front. I read 33.4 mm on the screen, so, splitting that would give a measurement of around 16 mm per ventricle. Marlena's ventricles are very distended, especially on the left side, which grew alone to around 70 mm by the time she was born, so I would be more interested to understand the big picture, but I'm happy with the information that was available via ultrasound. I know the back of that left ventricle put enough pressure on her brain for the radiologist reviewing her CT to describe "probable encephalomalacia left superlobe," which is basically translating to brain damage. Improvement. That's all that matters, right?

The not so good news, is concerning Marlena's skull. Her surgeon thinks that her sagittal suture has fused, causing craniosynostosis. Her specific head shape is described as scaphocephaly, which is elongated and aerodynamic. He reviewed her last CT and tried to get a good look at the bones in her head, but he couldn't be completely assured that it was fused, although he's telling me that it more than likely is. We are meeting with him and his nurse practitioner in three months at a cranial band clinic to further discuss the issue and schedule more imaging studies. The talk of cranial reconstruction does not sit well with me. He did not mention any medical reasons as to why the reconstruction would be suggested. When I asked how it would affect her, he gave me more of a cosmetic response. I was told that it may affect her around others socially. I am completely aware that this condition could cause issues for her medically, but that is not the path of response her surgeon took. So, until then, we'll just wait and see. All I can say, is that I'm not putting my baby through such a rough surgery purely for cosmetic reasons. I think her head is absolutely beautiful.

So, milestones. Lets talk milestones.

Marlena has been doing exceptionally well. Better than we were ever given hope for. I find it hard to digest being told by the same person to be realistic about her development to finding her head shape worrisome of what some mean kids might say to her when she's older. If she isn't going to develop well, why worry about how she'll respond to ridicule? I'm not understanding this man very well.

 During the follow-up we went through a verbal list of developmental assessment with his nurse. Marlena is currently still on target with her age. She can roll over, smile, coo, laugh, grab toys independently and play with them for periods of time, grab her feet, and keep her head and trunk steady while being supported.

My husband and I are doing our best to live one day at a time. As with pregnancy and a diagnosis of hydrocephalus, we all know there are many unknowns. Will my baby see? Will my baby hear? Walk? Talk? Smile? Form relationships? When the baby is here, many of those unknowns may be revealed right away, but it could take years to understand your child from a developmental perspective. All of our babies are learning things at their own pace. Some need more time to heal. Some have to overcome more obstacles than others. Each case is so unique. We often wonder if we're going to hit a wall with Marlena's development. I feel that I still have a good outlook. If we hit a wall, when we hit a wall, we will support her with every resource available to us for her chance towards her greatest potential. I will not love her any differently than if she didn't have hydrocephalus. I feel justified, however, in saying I am not a stupid person to hope and believe there is a chance she will not be delayed. That's what faith is all about! 

She can do so much and I think I would be a fool to say that I didn't understand why. I do know why. She had almost no visible brain tissue at birth, but she's functioning with her brain. The reason why she's doing so well can't be answered by a doctor or a surgeon. I'm not saying that I am living in Lala Land and can't be realistic. This world is our reality and we are in it to face challenges. I can't say that I always handle these challenges the best, but I do have faith. I believe our Lord is the only one who can answer to the reason she's doing well, and he would say, "Me."

I admit, I've been neglectful of posting.

I haven't made a blog post in so long!

Lately, I've been more worried about Vincent than Marlena. On Tues, April 19th, he started having eye tics. The tics lasted from morning to night, 24/7 for about a week. I took him to an eye doctor, his pediatrician, had blood work drawn, taken him to an allergist, and most recently, a neurologist. Since then, he's had two other episodes where the tics lasted 15-20 seconds in a short outburst, and another time, where they lasted for about 30 minutes. The last time I saw him tic was May 17th.

The neurologist thinks it's best to have an EEG done to rule out him having seizures. That really scares me. No medical professional mentioned before the neurologist threw out the word "seizure." She also had blood work drawn to check his strep levels, to make sure the tics aren't being strep induced, since he has had two strep infections somewhat recently. I was actually supposed to have those results back by today, so I am going to assume the results were normal since I didn't receive a phone call. I will call them tomorrow just to be sure.

I would be happy if the tics never return again. There are so many things that this could be causing them to happen, such as Tourette's Syndrome, ADD, PANDAS, etc. The list goes on and on.

Marlena is also having an EEG done because she kind of scared me a couple months ago with some shaking, but since then, everything has been going smooth as butter. Her next neurosurgery follow up is less than a week from now. I'm kind of nervous about that appointment, because we have to see her unfriendly neurosurgeon, and because of the possible need for another surgery.

Other than that, life has been great. I've seen several little ones who face the hydrocephalus battle enter this world over the last few months. They're all so beautiful and I know they will help make this world a better place. <3

A Christening Preview

I'm so excited that Marlena now fits into her Christening gown.

After the c-section, I was only able to see Marlena for a few seconds before they took her away. Then, I had to lay in my hospital bed, quite out of it, for a long time. All I kept mumbling was, "I want to see my baby." I got a little upset in the operating room, so maybe they gave me something to calm me down. (Marlena didn't cry for what seemed like an eternity. Her "one minute mark" APGAR score was a four. She had to be resuscitated.) I do not remember being that drugged during the first c-section.

After I was moved to the recovery room, my family came to visit me. My mom then laid across me this beautiful gown for my brand new little girl. My mam-maw had a gift for Marlena. She made her a Christening gown, through the pain of her arthritic fingers and ailing back. Such true love.