When a Mended Heart Grows Up

I marveled at my daughter's 10 tiny toes and fingers. I touched her soft skin and chubby cheeks. My heart was racing with love for her with that first glimpse after her birth. Little did I know that her heart was beating differently as well. 

During the pregnancy, I had no worries about my daughter's heart, but that was back when black and white grainy fetal ultrasounds were all we had. Nothing was caught before Jaycee was born. After birth, her problems were noticed almost immediately by hospital staff. It was a cold day in February nearly 12 years ago when I found out what an AV canal heart defect was and watched my daughter have her first heart echo. 

I look back on those early years with a mixture of feelings. I was ecstatic to be a new parent of a beautiful little girl, but I was very concerned about her health. I had so many fears and worries at that time of Jaycee's life. Before Jaycee, I never really had experiences with the health care system or life-threatening health problems. It's a world of its own that can be overwhelming for anyone entering it for the first time, especially when it's meet under the circumstances of your first child. 

I was learning how to use a breast pump one minute and learning about my daughter's heart condition the next.
I was washing cute tiny outfits in the laundry and cleaning out medicine syringes in the sink.
I was taking Jaycee to the doctor for her normal shots, and I was making plans for her open heart surgery.
After surgery, I was rubbing baby lotion on her arms and legs and securing her nasal cannula to her face with tape.
I was turning on sweet soothing music for Jaycee while silencing alarms on her pulse ox monitor.

The first two years of Jaycee's life was a learning experience. In those two years, Jaycee had two open heart surgeries, a diagnostic heart cath, and spent three months on oxygen at home. I hoped the worst was behind us.

As a mom who loved her child, I wanted to know back then what the future would hold for Jaycee. After seeing my child's chest scarred twice, handing her off for surgeries, and going through all the emotions these situations brought, I wanted assurances for Jaycee's future.

All these years later, I can tell you what 12 years have been like with my child with a congenital heart defect. Since she was 2, Jaycee hasn't needed any more heart surgeries. She did need two heart ablations for a different heart problem, Wolff-Parkinson White syndrome, that triggered when she was 5 years old. For some time now, she has only needed yearly heart echos and cardiology appointments. Her only restriction in life is that she can't ride intense roller coasters. She's certainly done every other ride at amusement parks without a problem.

Jaycee's health has not been perfect, but she has Down syndrome and several lung issues. It's often hard to determine what diagnosis is responsible for what, but for the most part, her heart has not been the issue that I feared it would be so many years ago.

Since February 14th is Congenital Heart Defect awareness day, I wanted to take a moment to reflect on my daughter's journey with CHD. Hearing your child has a heart defect is a serious and scary thing. I am sure there are many parents out there getting a diagnosis and wondering what life will be like. I was once you. Here we are though, 12 years later. My daughter has a good and full life, and I pray that your little one will too!

How I Save Lives

I'm not a nurse. I'm not a doctor. I'm an ordinary person, yet I may have saved a life.

How?

Through blood donations, I have been able to help those in need. Since today is World Red Cross Day, there is no better day to share how the American Red Cross has touched my family. The Red Cross has many important humanitarian causes, but blood donation is the one that has personally affected me.

My need to do something good for the world led me to give my first blood donation in my twenties. I attended a church that was hosting a blood drive. I was able to speak with people who had given blood several times in order to calm my fears. Needles don't necessarily bother me, but I wasn't excited about that part. I had heard stories of people getting sick or fainting afterwards too. I didn't want to pass out or have a bad reaction after donating. I let those fears keep me from giving blood for many years as I figured there were plenty of other people out there who were donating.

It went better than I thought it would. I felt slightly fatigued the rest of the night, but I was fine by the morning. It went so well, that I gave a couple of more times.

Then, I became pregnant with my daughter, Jaycee. That meant I was no longer able to donate blood until after the pregnancy. When Jaycee was born with a congenital heart defect, she needed open heart surgery at 3 months old. A blood transfusion was part of her recovery. Because someone donated blood, Jaycee was able to receive the blood she needed. It was then that I realized blood donation truly is needed to save lives of people, even tiny babies with a hole in their heart.

After that, I wanted to give blood, and I did a few more times.

Then life happened. I let almost 8 years go by without donating. I had many reasons why I didn't donate. Besides her heart defect, Jaycee had developmental delays associated with Down syndrome. This made life hectic with therapy and doctor's appointments for some time. I had another baby. I worked part time and rarely had a babysitter when the blood drives were taking place. I can give a list of excuses, but I will say that it just wasn't feasible for me in that stage of my life.

As my children got older, I decided I needed to start donating blood once again. It really is an easy process, and not everyone who is able to donate blood does. I have finally gotten to 10 donations!

Blood donations are important, and one day you might have a loved one who has benefited from a donation. If you are able to give blood, don't let your reservations stop you. It is even easier now with features like Rapid Pass, which allows you to do a good chunk of the screening questions on-line prior to going, and donation scheduling, which allows you to pick a time to donate rather than waiting in line for an unknown amount of time. To read through the eligibility requirements, please visit the American Red Cross website.

Hope to see you at the next blood drive!

You can read more about the history of World Red Cross day on this site.

What I Saw in Myself in 'Beauty & the Beast'

A few weeks ago, my family eagerly entered the movie theatre anxious to see the new Beauty and the Beast movie. Well, three of us were eager; my son was sort of forced to go.

Jaycee was so excited to watch her favorite characters come to life on the big screen. Every preview of the new Beauty and the Beast movie Jaycee saw on television would result in her calling to me, "Mama! Belle! Beast!"

She has loved Belle for some time. Jaycee was in hospital's ICU a couple of years ago when I found a VHS copy of 'Beauty and the Beast' in a movie cabinet. The moment Jaycee heard Belle sing the opening song on the cartoon version, she became a true fan. During that hospital stay, we watched the movie several times as it was clear she loved it. When Disney released the movie on DVD recently, you bet I snatched one up for Jaycee.

As the lights went down in the theater and the popcorn flew into our mouths, Jaycee and I joyously anticipated the next couple of hours. We smiled all the way through the movie. It was lovely and simply brilliant. Surprisingly, I felt emotional during a few of the scenes because it made me think of my own journey to find hope and peace in my life. (If you are familiar with the story line but haven't watched the movie yet, there will be no spoilers.)

The day the prince was transformed into a Beast came without warning and so unexpected. He was placed in isolation in his castle with hope growing dimmer everyday. All of his servants were transformed into various living objects or household items. The main difference between the Beast and the other fun loving characters was that they managed to stay positive and find a way to enjoy life despite the form they found themselves in.

When Belle arrived at the castle, she soon found herself in despair too. She felt hopeless and did not want to be in the doomed castle forever. The difference between Belle and Beast was clear though. She allowed the others in the castle to speak into her life and build her up while Beast did not. Belle even asks (in a song, of course) "How in the midst of all this sorrow can so much hope and love endure?" Belle and Beast both find hope and love again all while in the enchanted/cursed castle.

Watching all of this play out on the screen, I connected with the story in a new way.

You see there was a time after I brought Jaycee home from the NICU that I found myself in an unexpected situation. My daughter's birth was no surprise but her Down syndrome, AV canal defect, and congestive heart failure was. That was life changing news for her, my husband, and I. The first year of Jaycee's life was tough. More and more health issues came up in her first year of life. This meant doctors and surgeries. It was overwhelming. As the days passed in that first year, my optimism for a happy future was fading fast and I isolated myself for awhile as I couldn't bear to be around most people with seemingly perfect lives.

I, like the Beast, had no hope for a time in my life. If you want to see what a lack of hope looks like, watch the movie. It makes you grumpy, pessimistic, jealous, and angry. I couldn't see a way out for my daughter's health conditions. I was worried her life was going to end prematurely. Life didn't see fair for her and our family. I didn't want to hear the pep talks from people trying to speak into my life. After all, they didn't really know how I felt it.

As I saw the transformation of Beast play out, I couldn't help but think of my own emotional transformation. It has been 11 years since Jaycee was born. Many of my thoughts have changed thankfully and hope was restored to me years ago. Jaycee's health conditions didn't necessarily resolve. In fact, she is on more medications and sees more specialists now than when she was a baby. Her medical scares haven't stopped. Yet, I'm coping better and have more optimism than when her medical diagnoses first came.

I have learned there are things that are out of my control. I can't predict my daughter's future nor stop the illnesses that threaten her life, but I can trust God in all situations. I can also allow other people of faith to speak into me when I feel myself slipping into some old thought patterns of fear and hopelessness. Not everyone can understand my personal situation, but most everyone can identify with loss or fears related to parenting.

Beast's transformation was made possible by the power of real love. My transformation can be attributed to that too, but the love I felt was from God. With God, we can find redemption. We can find hope even when nothing is changing in our situation. God can give us new eyes to view our situation, and friends along the way to help us in our journey. 

Beast got the ultimate transformation at the end as he became a prince again. After my hope was restored through God, I became myself again too. I was back to my happy and mostly positive self and the darkness faded away.

That is the miracle that God's love can bring. Certainly, I never imagined I would be reminded of this as I watched Beauty and the Beast, but it happened. How can God remind you of the hope and love found in Him?

Congenital Heart Defect Awareness: Jaycee's Story

I remember vividly walking into the NICU to visit my daughter the day after she was born. I was surprised to see there was a flurry of activity around my baby. Several doctors surrounded her tiny bed focused on a screen connected to something I could not see. A nurse showed me to a chair away from the action where I sat wondering what in the world was going on with Jaycee now.

Earlier in the day, several doctors told my husband and I that our baby had Down syndrome. Now, there appeared to be something else concerning. Soon, a female doctor broke from the pack and approached me. The young, blond doctor jumped right into telling me that my daughter had an Atrioventricular heart defect. Essentially, she had a hole in the center of her heart. Half of babies with Down syndrome have a heart condition, but not every heart defect requires surgical intervention.

Within a few days of her birth, she was in congestive heart failure and dealing with pulmonary hypertension. After spending 10 days in the NICU, my husband and I took Jaycee home.

Bringing home a newborn in heart failure meant our lives were a little different. Giving the medications Digoxin, Lasix, and Potassium became part of our daily routine. Getting these medicines down a newborn with an easy gag response and reflux proved difficult. Then there were the feedings, which were exhausting for both of us. Her suck was not strong at all. She tired easily and slept nearly all the time. Jaycee was overall so weak and tired that she literally could not cry. Instead she had a weak little noise that we determined was her version of a cry. At home, we had to find a balance between showing off our newborn while limiting her exposure to germs.

When Jaycee was 3 months old, she had reached 9 pounds which meant she was big enough for her open heart surgery. This was a bittersweet moment for my husband and I. We were ready for Jaycee's heart to be fixed so she could have a better life. But, we were scared of all of the rare but possible side effects from surgery. Handing your tiny baby over to a team of doctors knowing her body would be forever marked from the day was the moment we dreaded since we had gotten her heart diagnosis.

Despite our fears, Jaycee's surgery went absolutely perfect. We were amazed at how a little body can recover from a major surgery. The capabilities of doctors were astounding for us as hospital newbies. The idea that our daughter's chance at life was only due to the ability of these men and women committed to saving the lives of every child was not lost on us.

Jaycee in the hospital after her heart surgery

Today, Jaycee's heart is no longer our biggest concern, but it took awhile to get to that place. She did need another heart surgery at age 2 to fix some of the leaks in her heart left from the first surgery. Jaycee also had two heart ablations for Wolff-Parkinson White syndrome, which caused a tachycardia at age 5. Now, Jaycee has yearly cardiology appointments to monitor her leaks and slightly elevated pulmonary pressures, but the doctors are not anticipating any more surgeries.

Today, being Congenital Heart Defect Awareness Day, my husband and I would like to share our daughter's story of survival. When a heart diagnosis is made, there are many unknowns. We were worried about our daughter’s future and life. We are grateful those days are behind us. Our Jaycee is now a vibrant 11 year old with energy and an ability to scream and cry. For that, we are thankful!

Jaycee at home on oxygen after surgery

Personal note: Jaycee's heart surgeries were performed by Dr. Charles Huddleston. Her cardiologist, Dr. Mark Johnson, has been instrumental in her care as well. All of her heart care has been received at Children's Hospital in St. Louis. We are grateful for this hospital and all those involved.