Caleigh’s Corner – An Interview With Holly

I believe as parents of children with severe disabilties, we have all at one time or another beeen completely devastated and overwhelmed. But, it’s at those times we find the real strength we have inside. That is exactly what Holly and her husband, Eric did, and through their example, we can all become a little stronger.

Tell me a little about yourself and your family.

We are the Gray family. I’m Holly, a stay at home mom with a Bachelors of Fine Arts in Photography. My husband, Eric, is a local firefighter and our daughter, Caleigh, is now 18 months old. Our family calls North Texas home.

Tell me more about Caleigh’s disabilities. Did you know when she was born that she had disabilities. If not, how did you feel when you discovered it?

Eric and I had been married for 6 years when we decided to have our first child. We succeeded in getting pregnant the very first month we tried. Just out of curiosity, we decided to do a triple screening, for birth defects, at 15 weeks. Three weeks later we received the call that would change our lives forever.

After an ultrasound, our doctor came in the room with two medical books, pointed at pictures and explained that our unborn baby would be come into this world with Gastroschisis. Gastroschisis is a birth defect that occurs between the 5th and 8th weeks of pregnancy. The baby’s abdominal wall doesn’t close completely causing intestines and other vital organs to grow outside the body. By 28 weeks of pregnancy, I found myself delivering our daughter prematurely.

Due to Caleigh’s slowed growth in-utero, low amniotic fluid and prematurity she was born at 2 pounds and 2 ounces. She was then diagnosed with Short Bowel Syndrome. Still in the NICU three months later, after a routine head ultrasound, Caleigh was diagnosed with Severe Periventicular Luekomalcia (PVL). This is basically a hypoxic brain injury, or lack of oxygen before, during or after birth.

We were devastated and overwhelmed. After six and a half months in the NICU and no real progress, Eric and I decided to take Caleigh home. We brought her home on IV nutrition, not eating anything but a teaspoon of formula an hour. 18 days later, Caleigh stopped breathing on the way home from a doctor’s appointment. Eric resuscitated her with CPR and we later found out that Caleigh was having complex partial seizures or silent seizures. After many surgeries, her intestinal problems are few and she can now eat some by mouth and the rest by g-button.

Caleigh’s brain injury resulted in cerebral palsy and cortical vision impairment. Caleigh has made significant strides with both of these conditions and we continue to work with her daily.

You blog a lot about your Caleigh’s issues. How did you go about making the decision to blog ?

Caleigh’s Corner started out as a way to be able to communicate and educate our family and friends about our unborn baby’s complicated medical conditions. During the 6 and a half months Caleigh was in the hospital, the blog was a means of support for our family and it gave those that care about us a sense of being right there even though they couldn’t be. After a while, I began to receive messages from others going through similar situations and this has been a wonderful aspect of having the blog, supporting others.

Caleigh’s Corner is still about Caleigh and her triumphs thus far. As a special needs parent, I don’t hold anything back and I have no problem sharing my opinions. For me, Caleigh’s blog is a perfect outlet for this.

How have Caleigh’s disabilities affected you as a person and as a mother? What did you do right? What do you wish you had done differently?

I’m definitely not the person I was before I became a mother, but who really is? Everyone always says ‘you’re life changes as soon as you have a baby.’ Well, they are right. Having a child with a difference is what has really affected me. My perspectives and goals in life have changed. Positively, and I’m sure of it. Everything that was important before I had Caleigh doesn’t seem as urgent and necessary.

What do you want other parents to know?

If I could pass on one thing to other parents, it would be to trust your instincts. I’ve learned, that as parents, we are our child’s best advocate. No one knows your child like you and if you feel something is off, you’re probably right. Ask questions, research constantly and if you don’t feel right about the diagnosis or decision, don’t feel bad about asking again or getting a second opinion.

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

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