Cranio Kid

For those that don't already know, we recently found out about another hurdle in our lives at Marley's 6-month doctor's appointment. The moment the pediatrician entered the room, she noticed Marley's forehead, between her still slightly blue eyes, there was a little ridge, convenient description since it's Marley's middle name. We had noticed the spot a few weeks before, but thought absolutely nothing of it as we had come to expect all baby's heads had slight imperfections. However, as the doctor continued to examine her skull, she determined Marley had a "premature closure of the skull" or craniosynostosis.

We still don't know a lot about the condition other than what we've read on about 823 websites, give or take a few. One of the best sites we've visited had the following definition and description, sorry for the length, but if you've read this far, it'll help with understanding the condition:

What is Craniosynostosis? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow room for growth as an infant develops, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth. The result is an abnormally shaped head, or in severe cases, increased pressure on the brain.

The most common treatment is surgery performed by a neurosurgeon and craniofacial surgeon. There are three goals in surgery; open up the fused sutures to allow room for normal skull and brain growth, relieve any pressure that may be on the brain, and give the head a more normal appearance. Some cases may require more than one surgery. The prognosis for a child with craniosynostosis is generally good when treated, but will depend on which sutures and how many are fused. Visit this site for more info: http://www.craniokids.org

Of course, after the string of heartbreaking news and events we've experienced as a family over the past 9 months, this jerked what few tears we still had left for our little Angel Child.

The CT scan is scheduled for Thursday at 7 a.m. at Texas Children's Hospital. We'll have a better understanding of the severity and the next step following the results of the scan. Most likely, we'll have to schedule a time for her surgery. We've been told and read that typically, she would stay in the hospital following the surgery for 6-8 days. It usually takes 3 days for them to be able to open their eyes due to the swelling from the surgery.

I'm not sure how this child can have the difficulties she's had and just keep on rollin with that adorable grin, but she is definitely here for a reason and continues to give our family a joy and determination in our lives. Berkley has already begun her nightly prayers for her little sister and we'll hopefully be back on here Thursday with a positive update. We'll get through this like everything else, with a positive mind, the strength of our family and the blessing of God.

One last thing, Marley had just recently received an invitation from her first Neonatal ICU (The Woman's Hospital of Texas) to attend a "Friends of the NICU" party at the Children's Museum of Houston so of course we joked that she has just decided to try and get an invitation to Texas Children's NICU party next year. Leave it to a lady to figure out a way to have to buy another outfit and "no" the baby outfits are not much cheaper than the adult's version.