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