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!

Diagnosed: Birth -VS- Childhood

I have been doing some thinking (too much probably) about my children and their paths to diagnosis. If you have ever read this blog, then you'll know that my daughter Jaycee was diagnosed with Down syndrome at birth 11 years ago. Just a few months ago, my son was diagnosed with Ehlers-Danlos syndrome at age 7. (If you missed the post on his diagnosis, you can read it here.)

Photo Credit: Short Photography

I responded much differently to each of their diagnoses. After Jaycee was born, I was in complete shock. For 9 months, I thought I was going to have a healthy baby girl. Learning at birth, she had Down syndrome, an AV canal heart defect, and would need an open heart surgery...it was too much! I had a very hard time adjusting to the diagnosis.

With Elijah, the news of a diagnosis was sort of a blessing. I began having some small concerns with him around age 2 when he couldn't run without falling. He ended up in physical therapy and occupational therapy for his low muscle tone for years. There were times when I would be very confused about some of his problems. Why did he have low muscle tone? Why is he "uncomfortable" sitting? Why did his toes bend in funny ways?

I researched some of his problems and ended up with no answers. There were times I was really fixed on finding an answer. There were other times when I would tell myself that whatever was wrong with him must not be too bad. After all, he was age level in academics.

I took him to a few specialists looking to see if there was an underlying reason for his motor delays and muscle issues. The first orthopedic doctor completely blew me off. I mean completely. I was treated like an over-reacting parent. I was told his problems were minor and weren't really impacting him. I disagreed in some respect because he did need both physical and occupational therapy after standardized testing showed severe delays in his motor skills.

The second orthopedic person I took him to a couple years later examined Elijah for less than 2 minutes. He told me he was fine. His gait (the way he walked) was strange, but nothing to worry about.

I was done.

Let me tell you something. There's nothing worse than having some legitimate concerns about your child, and a doctor can't even spend 5 minutes checking into things before he determines there's nothing wrong.

By the time I took Elijah to a podiatrist to look into some shoe inserts, I was not expecting anything earth shattering. This man took an interest in my son. He wanted to hear about some of his problems because he noticed something with him immediately. In less than 5 minutes of watching him walk, run, jump, and move his body, he told me he suspected Ehlers-Danlos syndrome. (We later saw a genetics doctor who confirmed the diagnosis.)

So you see, my son's diagnosis was different. It came after years of questions and second-guessing myself. After knowing what the problem was, so many things made sense. The information was helpful, and it let me finally understand my son.

The future of chronic pain and joint problems in store for Elijah was depressing. That part of the post-diagnosis reaction was similar to learning about Jaycee's Down syndrome and associated intellectual disability. The parts of the diagnosis that are predictive in nature were tough for me for both kids. There are some things about each diagnosis that sounded scary. Unfortunately, time is the only thing that reveals how a diagnosis will manifest in an individual...not information in a book.

I handled Elijah's diagnosis easier in some ways. I had 7 years with my son before he was given a life-long diagnosis. I had time to see my son's personality and strengths. This kid was memorizing sight words at age 3 and begging to sit in his sister's home therapy time with me. He's the kid with a love for presidents, state capitals, and state capital buildings. He loves playing guitar and beating on his drum. Before Ehlers-Danlos syndrome, there was Elijah. I knew that sweet boy well. After his diagnosis, he was the same kid with a different possible future.

It was different for Jaycee. She was born and Down syndrome was there immediately. I had no time to get to know her. Down syndrome was a dark shadow cast over her for so long. I couldn't see past it. Maybe it was because the NICU doctor literally pointing out everything on her body that indicated Down syndrome. I looked at her, and I saw only Down syndrome initially. She was also a baby with a heart defect. She slept and slept and slept those first few months. Her personality, preferences, and opinions became known over time. Jaycee was in there all along, but I knew Down syndrome more than I "knew" Jaycee at first.

Getting a diagnosis for your child at any time is hard. It's an emotional roller coaster, and it changes the life course for the parent and child. But, a diagnosis isn't the totality of a person. There's an individual person with a diagnosis. That person has a personality, attitude, opinion, and my love. That love and bond is stronger than any diagnostic term. I knew after Jaycee that we could get through any present and future diagnoses, because our love was great. By the time Elijah's diagnosis came around, I knew this well. I knew I could face that future with my son, because love has a power to want to conquer all obstacles.

The Caution with Chronic Illness in the Family

After this there was a feast of the Jews, and Jesus went up to Jerusalem. ² Now there is in Jerusalem by the Sheep Gate a pool, which is called in Hebrew, Bethesda,^[a] having five porches. ³ In these lay a great multitude of sick people, blind, lame, paralyzed, waiting for the moving of the water. ⁴ For an angel went down at a certain time into the pool and stirred up the water; then whoever stepped in first, after the stirring of the water, was made well of whatever disease he had.^{[b] 5} Now a certain man was there who had an infirmity thirty-eight years. ⁶ When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, “Do you want to be made well?”

⁷ The sick man answered Him, “Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me.”

⁸ Jesus said to him, “Rise, take up your bed and walk.” ⁹ And immediately the man was made well, took up his bed, and walked.

John 5:1-9 NKJV

Before Jaycee, I had read the story of the man healed at the Pool of Bethesda many times. This man had been an invalid for 38 years. He had spent much time waiting by this pool hoping to be the first to step in when the water was stirred so that he could be made well.

Then Jesus came along. The man told Jesus that he had no one to put him into the pool when it's stirred and that someone steps in front of him preventing his healing. For years, I read this scripture with frustration at the man. He made excuses for why he wasn't healed, but his healing did come in a way he didn't expect.

After I had Jaycee, I got something new from this story. I thought about that man and the other people who stepped out in front of him. He suffered for 38 years, surely the people around him knew it. They never once thought about helping the man into the water first?

No! Instead, those around the water wanted to receive their healing. The passage tells us there was a great multitude of people with all sorts of reasons to want to step into the waters first. If they were first, they received their healing. Their life changed radically. At the same time though, their healing meant that other people (maybe worse off) were not and would have to continue to wait.

Can you imagine having the opportunity to change your life while others still suffer? Did they think about the people around them who would remain there still in their condition?

To me this scripture is a reminder. It is a story about how easy it is for us to be consumed with our own issues and problems and overlook the needs of others.

Early on after having Jaycee, it was very easy for me to become very self-absorbed in the middle of a health crisis. At birth, Jaycee was diagnosed with Down syndrome and a heart defect that would require open heart surgery. When we brought Jaycee home from the NICU, she was in congestive heart failure. After her heart surgery at 3 months of age, she needed oxygen for three months. After that health problem resolved, she started having an issue with her eyes and the beginnings of a very long battle of asthma that would lead to many hospital admissions and bouts of pneumonia. In other words, she moved from health crisis to crisis. Some were harder than others. There were some days of peace mixed in all the chaos, but the first year was extremely rough followed by more years of issues. The world of hospitals, sickness, and health problems was new to me, and I simply didn't know how to navigate it in a healthy way.

When Jaycee had a health issue, it would affect my emotions, thoughts, and attitude towards life. OK, it still affects me but I am armed with knowledge and understanding now. When I would hear about another person's health problem, I literally couldn't take it in. I had my own problems and it was all I could handle. I couldn't deal with anything else. Most likely, there were some people I should have stepped up and supported in times past but I didn't because I felt I couldn't. Not only that, I would get very irritated when someone complained about a health issue that was sooo not a big deal comparatively.

But, I've grown. I understand that everyone is on their own path. What may seem minor to me compared to what my daughter has went through is just the "worst" situation for another person. They need support, and I of all people know that! I have tried to develop patience and understanding for others in their own medical crisis even if I'm in the middle of one myself with my daughter.

This Bible story reminds me and challenges me. No matter how "bad" things are going. No matter what craziness is going on in my life. I need to stop and take a look around at the people I encounter. There may be someone in need whose being ignored by everyone else. Self-pity and self-centeredness only gratifies one person but a life looking outward can reach an unlimited amount of people. This is a lesson I'm challenged by often and hope to have perfected at some point in my life.

This post is written for the 31 for 21 challenge- where bloggers write about Trisomy 21 all 31 days in October. 

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.

A Heart Surgery: Part 1

"I think your baby has a genetic issue, and I hear a heart murmur," stated a pediatrician just a few hours after Jaycee's birth in 2006.

I sat in my hospital bed trying to make the words match my view of my baby. I flash backed to ultrasounds and prenatal appointments. Nothing ever signaled trouble. What was going on?

The next day, I was seated in the NICU when the doctor told me that he was certain Jaycee had Down syndrome. Name an emotion; I felt it. Not only that, Jaycee looked "sick." She was on oxygen, monitors, and IVs.

Hours later, I walked into the NICU room to visit my baby. The cardiologists were in the middle of their testing. I took a seat away from the action and let them proceed. Some poor resident walked over to tell me that my precious baby had a large hole in her heart called a complete AV canal heart defect. There was a picture drawn out and descriptions about blood flowing the wrong way. More words about possible congestive heart failure and heart surgery. I started sobbing. The resident quickly walked away and clearly did not know how to deal with me.

A few days later, the team concluded that Jaycee was indeed in congestive heart failure. Three medications were started. Jaycee spent the first 10 days of her life in the NICU. Then we came home & the work began. I started my new role as a nurse.

At home, Jaycee was being woke up to feed every 2-3 hours around the clock. She NEVER cried for food, ever! She slept nearly all the time. Looking back, she was a sick baby. She was on digoxin, Lasix, and potassium. I remember one medication was 3x a day and one was 2x a day. They weren't all on the same schedule. We kept a book to log all the medications and feedings in order to keep it all straight. There was home nursing visits to monitor her heart. There were lots of doctor's appointments too.

There was so much going on. So many emotions to sort out. And I was completely exhausted. I have never in my life been that exhausted. There was no chance of her "sleeping through a night" because I had to wake her up to feed. Yes, I let a night or two slip when I was at my breaking point or slept through my alarm. But, she had to gain weight for surgery, and that was my only job. Nine pounds was the goal. Even with round the clock feedings, we ended up using higher calorie formula to bulk her up.

When she was 1 month old, we ended up back in the hospital due to dehydration. Jaycee was a poor feeder and the Lasix was making her lose fluids. When the cardiologist put her on an increased dose of Lasix shortly after she was discharged, I was at my wit's end. We sought a second opinion and found a great, new hospital and a different cardiologist, who changed all of her medications.

It's hard to have a baby who needs extra care and facing surgery. We hadn't really had time to get to know Jaycee, and the thought of surgery was scary. The time between her birth and the surgery can only be described as stressful, but that doesn't begin to describe it. There were calm and happy moments too, but lots of things to adjust to.

When she was 3 months old, she got to her goal weight, and surgery was scheduled. We got professional pictures made prior to the surgery, making sure that her chest was photographed. It would be the last pictures without her being scarred for the rest of her life.

We arrived at the hospital 1 day before the surgery for all the pre-operation tests and meetings. We were told all the things that could go wrong. I know why doctors have to tell you those things, but it makes you want to grab your baby and run out of there. On the surgery day, Jaycee was so happy. She was smiling and was so sweet. It made the last few hours with her fun. Then we said our good-byes. We had some tears and joined our friends and family in the waiting room. We've always been blessed with supportive people. We prayed, took communion, and tried to make small talk to pass the time.

Four hours later, the surgery was completed without any complications. A few hours later, we were allowed to go see Jaycee. Forget the NICU, now Jaycee looked "sick." She was hooked up to so many lines, tubes, and monitors. She was sedated and on a ventilator. We tried calmly talking to her but her heart rate went up. We had to simply look and wait.

Over the next few days, things slowly come off of Jaycee. The only thing she couldn't shake was her oxygen. She stayed in the hospital for 6 days. She was sore. We had to pick her up by scooping her (not by picking her up under her arms).

Jaycee came home on oxygen. There's a lot to say about oxygen use but maybe another post. When we got home, we had to clean her stitches on her chest. She couldn't be submerged in water for a short time. My nursing skills grew even though I really didn't want them too!

The first few weeks of recovery, we had to keep Jaycee isolated. But, before we knew it, she was ready to get back out to church and other public places with her oxygen tank in tow for the next three months.

In time, Jaycee's scar healed and it looked like an exclamation point on her chest. I could feel a bony growth on her sternum. You could see the "growth" too. The doctor told us it was calcium deposits that collected there due to the surgery and that we shouldn't be concerned. It did eventually even itself out and there's no longer a weird bump on her chest. Although for some time, it did have me worried.

Subsequent heart checks indicated Jaycee just had mild leaks and that surgery was a success! We were relieved that Jaycee's heart was fine, and this was all behind us. Or so we thought........

To be continued next week.............