Knit Me Together: Precious Life

Our sweet girl has kept us pretty busy- this week was packed, and so is this update! Here goesJ

Wednesday we saw her endocrinologist. He says she will need growth hormone shots, but probably not until closer to 2 or 3. She is growing in length and following her own curve, so we are going to watch her closely to make sure that doesn’t change. We are also scrapping the stimulation test until it becomes “medically imperative”. (Chalk one up for mama bear).

Yesterday we went to the hospital for Meghan’s XRay, MRI and sedated hearing test. Long, long day, but the good news is that there weren’t any unpleasant surprises! Meghan's hearing test showed that she has profound hearing loss in her left ear, and her right ear is normal. This is actually better news than what they initially had thought. The profound loss means that eventually, she will be able to be fitted for a hearing aid and that it will actually work. With auditory neuropathies that is not always the case, so we are considering that good news:) Next, as we knew, Meghan has a Chiari I Malformation:

This is a condition in which a part of the cerebellum is pushed down further than normal through the opening in the base of the skull. It is often found in kids with congenital hydrocephalus. Her MRI showed that although the malformation is present, there is good flow of spinal fluid around the part that is pushed down- good news:) They also imaged her entire spine. Our neurosurgeon is going to send off her pictures to be reviewed by the doctor we saw in Philadelphia. She was fairly certain that we are going to have Meghan fitted for a neck brace for 2 reasons. First to help protect her neck, and second to prevent her hemivertebrae from fusing in their current position. Her head is tilted to the left because of the hemivertebrae causing scoliosis (curvature). The brace will help her maintain neutral alignment and hopefully help her to eventually sit on her own since she won’t have to work as hard at holding her own head up!

Meghan also has an extra vertebrae in her lumbar spine (lower back). This makes it difficult to tell if her cord is truly tethered or if there is just extra fatty tissue at the end (also known as a fatty filum). Dr. R. said she was going to review the films with the radiologist and a spine expert to help determine if she might need surgery to cut or “untether” the spinal cord. This may be a reason why she will not bear weight on her legs. There are usually symptoms associated with a tethered cord, but as Meghan is so little, it is hard to tell if she is having them- which brings me to next week.

Monday, we are going to be admitted to the hospital to have a feeding tube placed. When we met with her GI doctor last week, she had only gained 2 ounces in the last month, despite an exhausting attempt to squeeze in every calorie we could. They recommended going ahead with the feeding tube. For kids like Meghan, an illness or surgery can set them back pretty far, and nutrition is vital to healing, and of course, growing. The tube will hopefully get her on track with weight gain, and provide a safety net for her. This will allow us to focus on feeding her things that are pleasurable, and increasing what she’s able to eat by mouth. While we are in the hospital, we’ll be pretty busy. First she will have a nasogastric tube placed. This is a tube that passes through the nose and into the stomach. We will see if she is able to tolerate the feedings this way, as well as learn how to administer them at home. We are going to work closely with a dietitian, feeding therapist, and meet with the surgeon. Eventually she will have a g-tube placed, which is a tube that is surgically implanted into the stomach, and anchored to the abdominal wall. This will be far more comfortable for her than the NG tube, but it is more invasive. It is reversible, and if and when she is able maintain her own weight, we can take it out. We won’t know the time interval on the surgery until we meet with them next week. While we are in the hospital, we will also see a urologist to discuss testing Meghan’s bladder. This may give us some insight as to whether Meghan is having silent symptoms of a tethered cord. We hope that we are not there longer than 3 days! Hospital life is not exactly ideal when you are on the other side of the bed, and even less when it’s your baby.

We are so thankful to our family and friends who are holding us up physically, emotionally, and in prayer as we help Meghan through these hard days. Her sweet little spirit sure keeps us going. It also helps when we get good news! The last bit of news from this MRI was that her ventricles are much smaller, and there is lots of beautiful brain tissue where there was once a significant amount of fluid. This past 2 weeks, Meghan has started waving, learning to finger feed herself, and we THINK she is trying to say hi. And she does it ALL with crazy hair, a joyful laugh, and a smile that brings the sunshine in. Praise God.

Lastly, her first birthday is coming up in just a few weeks (I can hardly believe this). In honor of her first year of life, we hope to raise enough money to fund one lifesaving surgery for a child with hydrocephalus in a developing country through CURE International. Please visit www.cure.org/my/meghansmiracle to read her story, and join Meghan’s team if you feel led. We hope you find the work they are doing as inspiring as we did. We are incredibly blessed to have access to the care that we do. In other parts of the world children are not nearly as fortunate, but their lives are equally as valuable, and equally as precious in the eyes of Jesus. What greater gift could we give to honor Meghan, than the gift of precious, precious life.

We'll keep you posted next week!