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.

Possible Predicament Looms in the Future

I'm going to backtrack a story into this blog post, because something really cool happened a couple weeks ago, and something really cool and similar happened today. Vincent had his first dental appointment. I was fussed at by the dentist for giving him too much Juicy Juice. My son is very demanding with his juice and refuses to drink water. It's quite a battle. We've started putting MiO into his water and it's helping a little bit. He still doesn't have any cavities, but most likely will if he keeps up his *cringes* almost 30 oz. of daily juice habit. Well presently, since the dental appointment, he gets usually only one cup, possibly two now a day. With Marlena's early intervention came the optional support group "Family Connections." Being the social butterfly that I am, I accepted and I'm so glad that I did. They partner you with another parent, who usually has a child with the same condition, and you connect via phone/e-mail. My family partner is such a strong woman and I'm so glad I've been able to talk with her and hear her story. Talking to her really helps to reassure me that no matter what happens, it will all be alright in the end. As I was talking to the dental assistant, I casually asked when Marlena should be seen for her first appointment. I mentioned that she had hydrocephalus. Guess what? My family partner heard me say "the word" and recognized us. It turns out she is a dental assistant there! It was so great to meet her.What a small world.


Today was really rainy. I took Marlena to see the neuro's office today to discuss with the nurse practitioner her take on the last CT scan. She wasn't able to compare this scan to her MRI, which was done back in December, because she explained that she doesn't have the capability to do so. Only her neurosurgeon can do that. I will have to wait eight long weeks before I know just what exactly is going on in that pretty little head of my daughter.

What's clear, is that her left ventricle is still pretty enlarged. The nurse practitioner thinks there is a possibility that it may not be communicating properly, or well enough, with the shunt. There could possibly be a membrane blocking it.Our discussion about the possibility of surgery was short, but scary. When Marlena first received her programmable shunt, the setting was at 100. After monitoring her head circumference and observing no plateau, it was decided that it be turned down to 90. Today, it was decided that from a clinical standpoint, that the shunt pressure should be lowered to 80. So now, we're flowing faster than ever before. We did the routine x-ray to make sure the setting was good. I hope changing the pressure gives that left ventricle the jump start that it needs to start cooperating. Some options that were discussed today were that a catheter be inserted into the left ventricle. It's basically like another "straw" that would be hooked up to her shunt. The other option she mentioned was poking holes in the ventricle. (I'm assuming this is something like an ETV.)

On the CT report, I noticed a word that I hadn't been informed of and didn't understand. "Encephalomalacia." This is the softening of the cerebral cortex, and was basically described to me as "brain damage." The way this was worded into the report was "Probable encephalomalacia left super lobe." The nurse practitioner is always very hopeful and told me that it may not stay this way. It's all confusing to me.

I am usually pretty observant where ever I go. When I'm sitting in a waiting room, I look around and check everyone out. I just like to know who's around me. I had to wait almost 40 minutes before Marley and I were called back. Our appointment lasted most likely around 30 minutes. When I came back out, a couple with a baby who was already waiting when I checked in, were still there!! Waiting. On my way out, I asked, "You still haven't been called back!?" "Nope," they replied, and then it hit me. I recognized this beautiful family!! It was so nice to meet them and their beautiful miracle. It was brief, but sweet, as they were called back right after the revelation that I recognized them from Facebook. It's funny that we later found out that our next appointment is also on the same day, which is so strange, considering they have different neurosurgeons. And again, what a small world.

We have a neurology appointment for the end of the month. I'm kind of scared, considering nothing else has happened. I don't want to learn something that I don't want to know yet, if that makes any sense. 

My mother just had shoulder surgery done on Tuesday and she's really sick from the medicine/general anesthesia. I was good to her and brought ginger ale, jello, and picked up her phenergan for the nausea. I hope you feel better soon, Mom. I love you.

Portrait Day

I think they turned out great! This is one of my favorites! She is such a strong baby, she really inspires me!

A small update on how things have been around here:  At her last neurosurgery follow up, her neurosurgeon proved to be, again, the rudest man known to his practice. Apparently, without giving him any inkling of insinuation that I didn't already know she had a condition, he told me I needed to be realistic about her development. She is who she is. I don't need his opinion about her development. His job is to make sure her surgery is still doing well. I'm pretty sure he gets the picture now, that I don't care for or want his opinion concerning that topic.

Second Infusion

Joshua and I left early on March 8th to drive up to Duke University Hospital for Marley's second cord blood infusion. To give a little bit more of an explanation, I am going to refer to what Amy said, because she put it so perfectly well:

"Stem cells are "undifferentiated," meaning they can become any cell in the body. The blood from a baby's umbelical cord contains millions, or sometimes even billions, of stem cells. During pregnancy, babies continuously receive stem cells as they grow. Once a baby is born and the umbelical cord is cut, they stop receiving them and the stem cells die off if they are not preserved. Dr. Kurtzberg has found that by giving babies back their cord blood at various points in time, the stem cells can help "repair" damaged brain cells in babies with hydrocephalus. Dr. Kurtzberg is currently the only doctor in the world offering this treatment, so we feel very fortunate that she is so close by."

Our appointment was actually at 1:15 PM, but we arrived at Duke at around 11 AM, but I had a message from the clinic telling me to come on up if we were early. It's a good thing we did that! We checked into our hotel at around 8 PM after 13 IV sticks on poor Marley. She was obviously not an easy stick. It was very frustrating for everyone, but she got her cells and that's what matters!!! The Duke team are all so awesome and they did their very best job to make the sticking minimal as possible, but Marley's veins just weren't behaving.


We had planned to meet up with other moms who have kids with hydro, but two of the kids became sick and had to cancel their appointments. Get well soon, sweet Elisabeth and Blake!!! I am so sad that we weren't able to meet up with Clair Bear, but we will see each other again soon sweetheart!! We did, however, get to meet up with The AMAZING Owen Higgins and his wonderful mommy, Michele. Owen is such a cutie! He has the cutest facial expressions. He was doing some serious texting when we met, but he was able to take a break for some adorable pics with my sweet Marley. I can't wait for Michele to post them, I just know they turned out awesome. So, everything doesn't turn out how we always plan it. We didn't all get to meet up and have a beautiful reunion with our kids who all have something so special in common. We've learned that well through our respective pregnancies. To which I leave you with this:

P.S.    Marley's breath still smells like creamed corn.   :)

Physical Therapy 101

We had our first physical therapy appointment today. I think it went really well. The physical therapist found more things that Marley needed to work on than I thought she would! She sees things that I never would have thought could be an issue, but I guess that's why she's the physical therapist! I really like our therapist. Her name is Miss Karen and she has been doing her job for 22 years. That makes me feel really, really good. She has a 16 year old son herself and she's the only person who will ever see Marley, unless there's an emergency for her, of course. I think that's just great! It's a great environment that sees only kids. I already spoke with a few parents in the waiting room and it was soooo nice to speak to a parent that didn't have our exact same diagnosis, but just "gets it." Our list of homework is a little overwhelming, in trying to remember exact positioning of how I should be doing her stretches and other exercises:


Home Activities

1. On her stomach, place small blanket roll under her nipple line.

-  Stretch the front of hips

-  Work on lifting head

-  Put weight through elbows

-  Think about putting weight through buttocks and legs


2. On her side, stretch the back and side of the neck. Also stretch the side of the trunk.

3. Lying on your lap with her head in the middle.


-  Tracking eyes

- Focusing on your face

- Work on turning head to the left and turning eyes to the right.




So this is a lot to work on! I think I will know how to be a physical therapist by the time she's three years old!