Wednesday, June 1, 2011

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."

1 comment:

  1. That's awesome that she is right on target with her milestones. She certainly is a little miracle!