The Douglas Family

Miss Eliza Kate Douglas.  Photo Credit: Lisa Rowland

Tell me a little bit about Eliza

Jared: Eliza always has a smile on her face. She is feisty and temperamental, yet curious and strong-willed. She loves to follow her brother around and being the center of attention. She is a thumb-sucker and loves her pink blanket.

Kelly: She’s your typical baby girl. She’s very sweet, loving, and dainty. She loves books and her big brother. She doesn’t like to get dirty. She’s strong-willed and very particular about how she likes things. For instance, she will only sleep with a pink blanket. No other color will satisfy. I’m pretty sure that’s the definition of a southern belle.

How and when was Eliza first diagnosed with Cystic Fibrosis?

Jared: January 7th, 2016, was the date Kelly and I found out that something might be wrong with Eliza. What should have been a routine ultrasound turned into the worst day of our lives. On that Thursday morning, the ultrasound tech found an abnormality with Eliza’s bowel. By that afternoon, our OB immediately got us in to see a fetal specialist. The specialist shared with us all the possible outcomes and our hearts broke. CF was one of the possibilities.

April 28th, 2016, was the official date of Eliza’s CF diagnosis. The confirmation came through the sweat test administered at the Pediatric Pulmonary clinic at UF Shands.

Kelly: I had a routine ultrasound sound done and the sonographer noticed that there appeared to be a blockage in her bowel. This is usually an indication of CF or another defect. It wasn’t 100% certain. Jared and I were tested to see if we were carriers and we found out we were. Our hearts were broken. Her diagnosis wasn’t confirmed until her newborn screen and salt test.

What do most people not know or realize about Cystic Fibrosis?

Jared: Most people do not realize that Cystic Fibrosis is a genetic disease. Which means that CF is not contagious. Other children will not get CF by being around Eliza.

Kelly: Most people don’t really know much about it. Only 30,000 people have this disease. They assume it’s a neurological disorder or something wrong with her spine. Some people look at her and think that nothing is wrong with her and it’s nothing serious. But it’s a progressive and complex disease. There are diverse types of severity and it varies from person to person. CF is a genetic disease. A defective gene causes thick mucus to build up in the lungs, pancreas, and other organs. The mucus can clog the airways, create lung infections, and cause lung damage.

How is Eliza’s routine different from Grayson’s or another child’s?

Jared: Eliza’s meal routine is different from Grayson’s. She takes enzymes before every meal or snack. One of the side effects of Eliza’s CF is that her pancreas does not produce enough of the enzyme needed to break down the nutritional fats in her diet. She takes vitamin supplements in the morning and the evening. Eliza’s bed time routine is also different from Grayson’s. Every evening she uses a nebulizer and wears a therapy vest for 30 minutes. Both activities help with her lung health.

Kelly: Eliza has a pretty much normal day to day life with just a few minor adjustments. Before she eats, we give her enzymes to help her body break down the food and retain nutrients from the food. She gets a little extra salt in her food because people with CF have a higher concentration of salt in their sweat. Salt is important for digestion, muscle function, and nerve cell health. Nutrition is very important for her health. Eliza eats high calories and high fat foods. She has chest physiotherapy (CPT) and a saline nebulizer treatment in the morning and at night This helps break up any mucus build up. We do all of her treatments in our living room. We let Grayson help or any member of our family help. We don’t ever want her feeling like she should hide her treatment or that it’s something done in private. We make it normal as possible.

Of course, we wash her hands constantly, because babies love to put their hands in their mouths. We don’t put her in daycare or in the nursery at our church. We limit her contact with people and avoid huge crowds. If Grayson gets sick, we try our best to keep them a little further apart.

What are some of the challenges that are faced day to day?

Jared: The most pressing challenge is keeping Eliza healthy and away from germs. For us, this means that she does not go to daycare or even to our church’s nursery. We avoid large crowds and ask people who are sick or have colds to stay away from Eliza. We try not to let people touch her hands or her face. We are constantly washing her hands.

Kelly: Keeping our house clean, protecting her from germs, and keeping up with normal everyday life is challenging! So pretty much typical of any other family! The biggest challenge we face is probably Jared and I making time for each other. Having a date night when you become parents is not as frequent as when it was just the two of you!

Sometimes the biggest blessings can come out of even some of the most challenging of situations. What are some of the blessings that you have experienced through this?

Jared: I believe the biggest blessing from Eliza’s CF are in the days ahead. Kelly and I look at Eliza’s CF as a platform to share our faith and the power of God in her young life. We believe that children are a blessing from the Lord and that every gift God gives is perfect. We look forward to that day that we can show how God works all things together for His glory.

Kelly: There are several blessings that have come from this. We have a beautiful daughter. She’s captured our hearts and has given us such joy. We can share our faith in Jesus. Without Him, we would not make it through this journey. I think the biggest blessing from CF is being able to relate to people when their life didn’t turn out like you planned or if something heartbreaking happened to you. Before CF, I had no idea how to comfort someone going through a difficult situation. I would try to say things I thought you should say instead of what someone needed to hear. People who are struggling need to hear that sometimes life sucks. It’s ok to not be ok. It’s ok to be angry. Dare I say, that it’s ok to be mad at God?! Shake your fist at him. He’s got big shoulders. He can take it. After all, He’s got the whole world in his hands. Right? Just don’t let the anger turn into bitterness. You’re going to need God to get you through it. I think we go through valleys for two reasons. One, to grow closer to God. Only from our darkest days do we rely on Him more. Two, to help others who will walk through them. How can you ever help someone if you’ve never walked their walk? It may not be the same walk but the pain feels the same.

I tell people who are brokenhearted that it’s ok to feel what you feel. Give yourself that time to feel. No matter how bad it hurts. Eventually, it will get better. You will pick up the pieces and begin to heal. You will get stronger every day.

If you could give any words of encouragement to another parent facing their child’s new CF diagnosis, what would you say?

Jared: One word of encouragement is to accept your new normal. Yes, our new normal has been challenging and at times down right frustrating. But as the days have turned into months, Kelly and I have become much more confident in caring for a child with CF.

Kelly: My words to a parent to their child’s CF diagnosis would be what I wished someone had said to me. Take time to grieve. Take time to pray. Don’t google anything! Allow yourself time to process. Then I would say, I truly believe we are going to witness a miracle. I believe that there will be a cure found for all forms of CF. Drugs and treatments have come so far. I’m confident that in my lifetime there will be a cure.

What information or advice would you give that parent?

Jared: For married couples, CF or in that sense, caring for anyone with special needs is trying and demanding. Kelly and I have had to remind ourselves that we were first husband and wife before we were Mommy and Daddy. My encouragement to these parents is to carve out time for your spouse.

Kelly: Your child may have CF but that doesn’t define them. God has created your child with talents and gifts. They are unique and there is no other child like yours. They will have a wonderful life. They may have to do things a little differently but they won’t miss out on anything this world has to offer.

What are some helpful websites and information sources for parents?

Jared: The Cystic Fibrosis Foundation: https://www.cff.org/

Kelly: The CF Foundation is the only website I would recommend. The CF Foundation was started in the 1950’s by the parents of children with CF.  They were determined to save the lives of their children. This foundation has led to adding decades to people’s lives. Before, CF kids weren’t expected to live to elementary age. Now people are living into their 30’s and 40’s. That number is growing every day. Their fundraising has made nearly every approved CF drug available today. This website is so helpful, informative, and encouraging.