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!

Things That Happen Between Skillet Concerts

Time gives the wonderful gift of perspective.

Have you ever looked back and asked yourself why you got so worried or upset over a situation? Maybe you looked back and realize things that felt VERY important at the time didn't really matter at all later.

The passage of time allows us to have a different viewpoint and understand things that can't be comprehended in present circumstances.

Since becoming a parent, there are certain thoughts that have ran through my head at various times:
Will it always be this hard?
Will my daughter live through this present health crisis?
Will my daughter be able to ____ one day?
What will my family look like in the future?

These are questions that can't be answered. Only time will allow me see what these answers will be.

Recently, God used the gift of time to show me something about some of my questions.

Let's go back....

In March 2010, my husband and I went on a date. Our son was 7 months old at the time, and our daughter was 4. In the 4 years of being a parent, our daughter had 2 open heart surgeries and 2 other minor surgeries. She had been in the hospital a few times for respiratory illnesses and required daily medications for her lungs. It had been a very rewarding and challenging 4 years.

My husband and I had been immersed in the world of raising a child with a developmental disability with chronic health problems, so taking this night to ourselves was rare. Our special night out included VIP tickets to see Skillet and Toby Mac. These are two Christian musical artists that we absolutely loved. It was the first time Toby Mac had a concert near us, and I was not going to miss out.

Skillet's part of the night was unforgettable. It was the first time my husband and I had seen fire blazing on stage in tune with music. I was smiling, laughing, and in an awe of what my eyes were seeing.

Then my crummy thoughts came.
Will I ever be able to do something like this with my daughter?
Back then, I never saw it happening. I couldn't take her out in public at the time without her running off or making a scene. I didn't even know with her lung and heart problems if she would be able to live to see double digits. This unanswerable question in my head tried to ruin the concert.

My joy momentarily waivered as I tried to put this question out of my head. As Toby Mac sang and danced, I couldn't help but feel happy. My husband and I had a great time!

Now, it's time to fast-forward to 2017....
Earlier this month, my husband, daughter, son, and I sat on a grassy hill inside a theme park listening to guitars and drums on a large stage. Skillet was performing, and the four of us were equally enthusiastic to hear our favorite songs.

My daughter pointed to the smoke that went off during a song and exclaimed, "Dada!!"

"Yes! That's cool isn't it," my husband told her.

As we sang and jumped and clapped and cheered, God reminded me of a thought that I had forgotten about.

God took me back to my last Skillet concert 7 years prior when I wondered if Jaycee would be able to do this very thing she was doing. For a second, I got a little teary eyed watching my kids enjoy the very loud music. The desire of my heart was fulfilled!

As I said, time gives a gift of perspective. I just have to be more patient to see the good things coming!


Here's Jaycee being amazed by Skillet:

The Story of Down syndrome For Us

It’s just an extra 21st chromosome. One piece of genetic information that seemed at one time to define my daughter. Down syndrome was a huge and overwhelming diagnosis back in 2006 when Jaycee was born and diagnosed.

Time has passed, and my attitude has changed since her birth day. Down syndrome is just part of her story and ours. It is not THE story.

Here are 21 moments from the story of my family's life with Jaycee in honor of World Down syndrome Day.

1.      First ultrasound picture…It was a glimpse of my first-born with knowledge that a daughter was in our future.  

2.       Snuggles after delivery…Before we knew about Jaycee’s Down syndrome and AV canal, there were a few hours when my husband and I just marveled at our new baby without worry. We examined every finger and smiled at every movement and sound.

3.       A doctor's announcement…After waiting 4 long hours during Jaycee’s open heart surgery, I was relieved to hear that the surgery went as planned and all was well with our infant.

4.       First wobbly steps…In a physical therapy session, Jaycee took her first little steps. All those hours in therapy sessions and hard work paid off!

5.       Walking for Down syndrome…Our family teamed up to raise money for our local Down syndrome group and participated in an awareness walk. It would be the first of many times Team Jaycee united.

6.       The Best Word Ever…Is there anything sweeter than hearing a squeaky voice say your name? Nope, there isn’t! "Mama" melted my heart.

7.       First school drop off…Taking Jaycee to pre-school as a little three-year-old resulted in tears from one of us. I’ll let you guess who.

8.       Jaycee becoming a big sister…During my pregnancy with my son, I explained to Jaycee that she was going to have a baby brother soon. Right after Elijah was born, Jaycee came into the hospital room to meet him. She signed “baby” as she peered into his bed while the nurse weighed and measured him. She instantly loved him!

9.       Self-feeding...After months of occupational therapy, hand-over-hand spoon feedings, and trials of many spoons, the day Jaycee fed herself with a spoon was cause for celebration. We could eat together as a family at the same time, and she could be more independent.

10.   Second first steps…After a long and serious stay in ICU when she was in first grade, Jaycee came home depending on a wheelchair. She could not climb steps. She could not even sit up unsupported. When her strength came back slowly and she started walking again all the time, it was a gift to watch. 

11.   Jaycee, the competitor…Jaycee loved participating in the softball throw at the track and field games for our state Special Olympics competition. She kept looking at those of us in her cheering section to make sure we were all paying attention.

12.   The 3 big words…”Love you, mama!” After weeks of breaking up this phrase into simple word approximations, Jaycee one day repeated it back. It sounded like “Uh oo, mama,” but it was the beginning of this beautiful exchange we could have.

13.   School dancer…After some bravery on my part, I signed Jaycee up to participate in the yearly school fundraiser cheer leading and dance group with her peers. Jaycee knew the moves and proved she could do amazing things if I didn’t limit her.

14.   Elsa and Anna…Jaycee was fortunate to receive a trip through Make-A-Wish, which meant she got the royal treatment at Orlando theme parks. She absolutely loved meeting the Frozen cast after a show; her joy was precious.

15.   A lifelong relationship…At a family get together, Jaycee marveled at her cousin dressed up as a deer. From then on, Jaycee fell in love with her cousin, who she referred to as “Deer” ever since.  

16.   A pep rally…Jaycee’s school held an energetic pep rally for the athletes participating in Special Olympics. Jaycee ran through the lines formed by smiling cheerleaders. Instead of bursting through the paper banner at the end of the cheerleaders, Jaycee crawled underneath it. It was such a funny moment!

17.   A friend party...When your elementary school daughter wants to have a birthday party with friends, you make it happen.

18.   A Baptism…After weeks of teaching and preparation, Jaycee went through the water baptism at church like any other child. She came up out of the water smiling, just like all of us who were surrounding her.

19.   My daughter on stage…During a pageant for girls with intellectual disabilities, I saw my little girl transform into a princess and enjoy being in the spotlight. Her abilities were celebrated, and she continues to show off her crown to visitors at our home.

20.   Water coaster Enthusiast…Water coasters exist and my daughter loves them. While I scream my head off wishing for the ride to come to the end, my daughter shows no fear and laughs all the way through.

21.   Home plate with Molina…When Jaycee won an opportunity to meet Yadier Molina during a Cardinal’s game through our Down syndrome Association, there were several seats filled with our friends and family cheering for her. Molina autographed her baseball right after she did.

Our life with Jaycee has set us on a path we did not anticipate. Then again, who could predict some of these moments we have had with Jaycee. Some of them have been extraordinary, a few have been challenging, and others have been gratefully mundane.

Time has shown us that there is a full and good life beyond diagnosis day. Happy World Down syndrome Day!

My Emotional Attachment to Stuffed Animals

I have a problem. It's a strange one.

I have an emotional attached to several of my daughter's stuffed animals.

There. I said it. Now, let me explain.

I was cleaning Jaycee's room recently. I noticed her pile of stuffed animals was seriously getting out of control. The problem was that I couldn't bear to part with any of them for one reason or another.

There's this one.

What's so special about this dog in a pink nightgown? My husband and I "made" this puppy for Jaycee at a store in a mall that allowed you to stuff your own teddy bear. Jaycee was a few days old and in the NICU when we purchased this. We left the hospital to take a much needed break and decided on a whim to build this dog for her. When we picked out a heart to place inside the dog, I remember I wanted to cry. It held such meaning to me because we had just learned Jaycee had a large hole in her heart and was in congestive heart failure. We both said a silent prayer for her heart as we placed it inside. How can I say bye to this dog?

This soft little panda bear is another item Jaycee received as a newborn. A sweet lady of faith named Betty brought this to Jaycee after she got home from the NICU. Betty also had pizza for us which we ate together. Jaycee loved looking at this bear as a baby. This bear has stayed with us all these years. Betty has went on to Heaven, but her gift remains with us. 

And there's this one. Yes, it is a bit on the ugly side, but his body is shaped like the heart. His name is Snerdlihc, which is Children's spelled backwards. Jaycee received this from the hospital when she was 3 months old and having her first open heart surgery. Because it's a reminder of her mended heart, I have not been able to let go of this little guy.

This cute little teddy bear is another one that I just can't part with. Jaycee's grandma Ramona, who passed away a few years ago, bought this for Jaycee during her hospital stay for her first open heart surgery too. I had mixed feelings about this bear at first because it reminded me of the hospital, which I wanted to put behind us. Over the years, there have been so many hospital admissions that this bear became more a tribute to the doctors that have helped Jaycee time and time again.

This little puppy is from one of Jaycee's hospital stays for a respiratory illness. I played Bingo for Jaycee in the hospital to win this green puppy, which is Jaycee's favorite color. I felt so good winning this after having such a crummy day watching Jaycee struggle. And for that reason, this green puppy is still around.

Isn't this praying little lamb sweet? A friend of mine named Brandi came to visit Jaycee while she was in the ICU once. She sat this lamb on Jaycee's bed and explained that her daughter wanted Jaycee to have this lamb. She told how the lamb had been with her daughter when she was in the NICU. Not only that, the lamb had comforted her nephew in the ICU too. This lamb has helped three kids who left the ICU, so I can't let go this special stuffed animal either.

We picked up these two friends during Jaycee's Make-A-Wish trip to Florida. These were gifts to Jaycee while we stayed at Give Kids the World Village. That trip was absolutely amazing!! Mickey represents the Disney portion of our trip while the bunny (Mayor Clayton) reminds me of the village. I have many, many keepsakes from that trip two years ago, and I suspect that these will be around for awhile.

Meet dog and cat. When Jaycee was in the ICU once, she looked really sad. There was absolutely nothing for her to do but lay in bed and watch movies. Since we left for the hospital in a hurry due to her illness, I did not pack anything for her to cuddle. Off I went to the hospital gift shop to buy an animal for her to hug on while in bed. I picked up the cat, since we had cats at home that she loved. Jaycee's grandma Diana came in to visit bringing the dog. I told Jaycee she would have to keep the dog and cat from fighting and pretended to make them fight. Over the next few days, she would have the cat and dog fight each other in her hospital bed. It was super sweet to see her repeat this action. These two fighting animals are still around causing trouble.

I am guessing that I have provided adequate evidence as to why my odd emotional attachment to certain stuffed animals exists. These are just a sampling. Sadly, there are more in our home that have a story or memory tied to them. So, I keep filling drawers, toy boxes, and shelves with these treasures as they represent challenges she has overcome, people who have showed her love, or moments that brought joy. Who knew stuffed animals could do so much?

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.

Down syndrome and Heart Defects

I'll never forget how I helpless I felt when my newborn was diagnosed with a heart defect.

Ten years ago, I sat in the NICU in shock as I found out that my sweet baby Jaycee not only had Down syndrome but an AV canal heart defect. When I was pregnant with Jaycee, the grainy black and white ultrasounds were still the norm. This coupled with the fact that our ultrasound was around 18 weeks in to the pregnancy meant that my daughter's heart defect went unnoticed until she was born.

About 1/2 of babies with Down syndrome are born with a heart defect. Some of these will correct on their own, but others will need heart surgery.

Jaycee's heart defect was one that would not self-correct. A few days after birth, she went into congestive heart failure. Medications were started to help with the complications of heart failure. Jaycee had her first heart surgery at 3 months old. After the heart surgery, she needed oxygen for three months while her heart and lungs recovered. Due to small leaks that remained, Jaycee had to have a second open heart surgery again at age 2.

Jaycee's heart defect was always the scariest diagnosis for us. It was the one that could end her life prematurely and affect the quality of her life. It would also put a scar on her chest for the rest of her life.

At the time leading up to her first open heart surgery, my mind was all over the place. I was scared of so many things. I didn't want to lose her most of all. But, I also looked ahead in the future. I wondered how I would explain the scar on her chest to her. During her time in the hospital, I made sure and took pictures that I could form into a small book for her.

Title page of Jaycee's heart book

A page from her heart book

Fortunately, most of my fears about Jaycee and her heart never came to pass. She is 10 years old now and receives yearly heart echos to monitor her mended heart. She has never questioned her scar but with her limited speech she might not. We have used the book to explain Jaycee's scar to her little brother. This book was also used in a presentation I did at Jaycee's school for the Jump Rope for Heart kick-off.

I feel blessed that we live in a country with access to wonderful medical care and doctors with the abilities to help our children with Down syndrome live longer lives.



For more on Jaycee's heart surgeries, read:
A Heart Surgery: Part 1

A Heart Surgery: Part 2

Faith, Fear, & the Future

In less than a month, the house we are in will belong to someone else. We will be busy decorating our new home and settling in to a new routine. The new owners will be busy making changes to our current house. More than likely, they will see my artwork on Jaycee's bedroom wall and paint over it.

As we are starting to pack up our belongings, this special wall is one thing that cannot go with us. I think back to almost 10 years ago as I traced Jaycee's hands and feet, cut out the pattern, drew the prints out on her bedroom wall, and then painted them.

These hand and foot prints have a special meaning for me. It's true that I traced these when Jaycee was a newborn to mark her time as a baby, but it went beyond that.

When this paint went on the wall, I was in an all out spiritual battle. I was caring for this sweet newborn girl as I adjusting to the news of her Down syndrome, AV canal heart defect, congestive heart failure, and pulmonary hypertension. Her future seemed so uncertain. I was worried about many, many things including if she was going to survive the next year.

When I decided to paint this, it made her nursery more personalized. But, the main reason I did this was to have a permanent marker in her room in case something happened to Jaycee before, during, or after her heart surgery. I was afraid she was going to die. Fear motivated it and a dozen other things I did in case the worst happened. While I had fear, I also had faith. I prayed for Jaycee to be fine and to live. I wanted her to be alright but I wasn't 100% sure she was going to be.

Years later, I now know that my worst fears didn't come true. Time gives us a perspective that we all wished we had sooner. The only way to get through those tough times is to live through them, which thankfully we all did.

In a few weeks, I'll have to say good-bye to the hand and foot prints on the wall as we head to our new house. I have something better than painted prints on a wall for our new house- I have Jaycee!

Moms in My Two Parenting Worlds

I live in two different worlds of parenting. The moms in these worlds are similar in some ways, but extremely different in others.

When my first child, Jaycee, was born, I entered the minority world of parenting a child with special and medical needs. With I was around other moms with children without special needs, I felt so different. I was a mom of a baby with Down syndrome and heart and lung issues. Before Jaycee turned 3 years old, my parenting revolved around doctors, therapy appointments, heart surgeries, minor surgeries, figuring out how to get Jaycee to take her daily medications, and isolating my child from germs. The world I was in was my "normal" even though it was quite different.

When I found myself in public situations around a small or large groups of moms, I was lost. My mothering woes weren't even on their radar. While they were conversing about the difficulty of nursing, I was worrying about Jaycee's congestive heart failure worsening. They were discussing potty training methods when Jaycee was just learning to walk. From the beginning, I just felt out of place.

There wasn't much about my mothering experience with Jaycee that was typical especially those first few years. Consequently, I did not feel comfortable in social situations with most other moms. When they discussed the horrors of an ear infection, I kept my mouth shut. When they bragged about their toddler counting, naming colors, or saying some long sentence, what was I to say? My Jaycee struggled in many areas. The normal mommy bragging and discussion of problems made me feel cut off from other mothers. I felt very out of place in social situations and felt more at ease speaking with other mothers who had children with special or medical needs.

When Elijah was born, I was actually outside my comfort zone when I had a typically developing, healthy child. I felt odd in this new world. I had no emergencies with him or a medical crisis to consume my thoughts. I had no surgeries to plan for or doctor's appointments to fill up our calendar. It felt strange.

When other mothers talked about their child, I now felt I could join in on some of the conversations with other new moms. I could now relate to a child with common issues. But, I had a different perspective than most because of Jaycee. I knew a "big" problem from a "little" problem, and I had trouble at times with moms who discussed things that they described as "the worst." Our "worsts" were still far away from each other.

With my children being 10 and 6 years old now, I have met many, many moms in both of these parenting worlds. There are many moms I can't connect with at all, but I have found a few gems.

I am grateful for the moms from each of the worlds who understand me. I am thankful for the mom who doesn't make fun of me for saying I can't have Jaycee out after 8 pm, because she understands Jaycee needs to be on her bi-pap before she falls asleep. I'm thankful for the mom who doesn't make a comment about my parenting when I ask for their help when Jaycee has thrown herself down and is refusing to move. I'm thankful for the mom who takes the time to say, "No, you're not," when I say that I'm fine. I'm thankful for the mom who asks questions (Why does Jaycee have a hard time talking?) instead of offering assumptions (She could probably talk if she wanted to.). When one of my mommy friends checks with me after an appointment with Jaycee, I'm grateful that they cared.

Navigating these two parenting worlds can be difficult. So to those moms who make it a little easier for me: Thank you!

Why I Give Blood

As a teenager, the idea of giving blood frightened me. Perhaps, it was the needle. Perhaps, it was a few horror stories friends shared with me. Whatever it was, I never, ever considered donating blood.

After Jaycee was born, my mind changed. Like many other people, I became motivated for personal reasons. When Jaycee was just 3 months old, she had her first open heart surgery. After the surgery, she needed a blood transfusion.

Sometime after this, I decided I would try to donate blood at a local drive. I was nervous. I was afraid I would pass out in front of everyone. My mind came up with any excuse not to do it. But, ultimately my need to "pay back" the donation that my daughter received trumped my fears.

I walked in to the church hosting the blood drive. I went through the initial health screenings. I flinched when my finger was poked for the iron check. I answered a large amount of personal questions. Before long, I found myself in the chair, reclined back ready to begin. During the blood donation, I felt slightly nauseous, but it seemed to go by quickly. Then I was led to a table where I received juice and a cookie. Yum! I felt tired afterwards and slightly lightheaded. But, I survived my first donation.

After that first time, I realized that I could easily do it again. So, I did a few more times. Each time, I became more at ease with the donation process.

Caring for two small children limited my ability to donate for a few years. There was a time when Jaycee's medical conditions required all my spare time and energy, so I did not feel I could donate and keep up my responsibilities.

Last year, I started donating blood again. After all, I'm healthy and able to do it. The American Red Cross estimates that 38% of people in the United States are eligible to donate blood but less than 10% do so. One blood donation can save the lives of up to 3 people. The need is real.

Every time I donate, I think of my sweet baby in the hospital who received blood years ago. Fortunately, she never needed blood again. But, I know that there are other children and adults benefiting from blood donation everyday.

To learn more about blood donation, visit the American Red Cross website.

The Story Your Body Tells

My sweet Jaycee,

I'm not sure how much you remember about all of your medical experiences, since you aren't able to tell me. But you can find reminders all over your body.

Your eyes-They are bright and beautiful. When you look closely, you might be able to see the fine scar in the corners of your eyes from your two strabismus surgeries. These scars will go unnoticed by most people, but I see them because I was there when it happened. I remember the short surgery, your recovery, and putting in the drops afterwards. You looked so cute leaving the hospital in your sunglasses after the surgeries. Because of this surgery, your eyes are able to stay straight and don't turn in now.

Your chest- You might notice a scar that looks like an exclamation point. If you look closely, will see that there are actually two of these nearly right on top of each other. These scars are from your open heart surgeries. You were so tiny at 3 months old when you had your first heart surgery to fix the hole in the center of your heart. You were so little and not everything could be fixed perfectly that first time, so you had another surgery when you were 2. It was so hard to see your new scar but I knew it was necessary. Your heart had to be fixed so that you could live and have a better life.

Your neck- There are three noticeable scars on the right side of your neck. Two years ago when you were really sick in the ICU, you had to have a central line in your neck to help monitor your vitals and get medications into your body while you were on the ventilator. You were so sick with septic shock, acute respiratory distress syndrome, pneumonia, and rhinovirus. We weren't sure if you were going to make it through the illness, but you did. Sometimes, people ask me about the scars on your neck. I get to tell them how you were in a fight for your life and you won.

Your wrist- Right now, you might notice the red tiny marks on your wrist that will surely leave a scar. Just a couple of months ago, there was an arterial line stitched into your wrist so the doctors could monitor your blood pressure. You were very sick. You were on the ventilator, had pneumonia and rhinovirus, and were in respiratory failure. Your body was having trouble regulating everything because you were so sick. Being able to monitor your blood pressure accurately was essential when it was dropping so low. These tiny marks show off another victory you had in a health battle.

So Jaycee, the marks on your body are reminders for you. I don't want you to be sad when you see these reminders on your body. Instead, I want you to be proud and thankful. You have overcame so much. You have had to fight for your life. You have endured things that most people will never have too, yet there is a smile on your face. Your story is amazing and is worth telling!

Love-
Mom

 

A Heart Surgery: Part 2

Nothing seemed to be out of the ordinary with Jaycee.

We took Jaycee in for her routine heart echo and waited for the results in a little room. When the cardiologist came in, shut the door, and sat down, we knew automatically that something was wrong. The cardiologist gave us the bad news and feared that another open heart surgery may be necessary. Only a small percentage of kids need a second heart surgery. We were hoping Jaycee wouldn't be in this group.

A diagnostic heart catherization was scheduled to determine precisely if another surgery was needed. We were scared of all of it. The heart cath had its own risks, and we were afraid to find out anything bad. Jaycee was 21 months old and had just started walking. Now, her health was priority number 1 again and developmental issues would have to take a back seat.

Jaycee made it through the actual catherization. Afterwards, she had to keep her legs completely still for six hours to prevent a hemorrhage. Jaycee was groggy but moved around often. My husband and I took turns holding down her legs for the next six long hours, which was something we had not anticipated. Near the end of the six hours, we were preparing to go home. However, Jaycee went into respiratory distress and a blood clot formed in her leg; both of these were potential risks of a catherization. It landed her in the intensive care unit for the night. But, she recovered quickly and responded to treatment.

The next day, she was "better" but the results were not good. Two leaks in her heart and pulmonary hypertension were confirmed. Another heart surgery would take place 6 months later. There was plenty of time to get more photographs of her and of us together and to make necessary preparations.

This time, before the surgery, we took a short family vacation to Branson, Missouri. The vacation helped me relax and I enjoyed getting away from our ordinary life of therapy, medicine, and work. My husband, on the other hand, said it was hard for him to enjoy the vacation and would have rather been home. It's mentally hard when your child is going to have major surgery. Still, we had some neat experiences with Jaycee during that trip. Even my husband would agree with that.

In May 2008, we once again took Jaycee into the hospital for pre-operation tests and meetings. The next day, we arrived early at the hospital. Jaycee was 2 years old. We knew her personality, what her cries meant, and had developed a strong bond. It wasn't that we weren't bonded when she had her first heart surgery, but as a newborn she just didn't do much. Now, we had 2 years into our relationship. It made it difficult to hand her off to the surgical team this time. I didn't want to let go, but I knew I had to.

Jaycee's surgery lasted 4 hours. The valves were repaired. The surgeon felt it went well despite there being some scar tissue. Jaycee spent the rest of the day being sedated in ICU. The next day, Jaycee was moved out of the ICU and was off of oxygen. Her voice was hoarse and she choked on liquids.

After surgery, Jaycee was in pain. She wasn't sleeping well. It was apparent that she was sore. It was hard to find words to comfort Jaycee in her pain, especially because I had consented to it. A couple of days after surgery, the chest tube was removed. We stayed and watched the removal. I was fine but my husband got completely white. The next thing I knew, he was in Jaycee's bathroom vomiting. The doctor told me to attend to him while they finished with Jaycee, but he didn't want my help. We have laughed about his weak stomach for years now.

On day 4, Jaycee was discharged from the hospital. This time, the recovery was quicker, and we didn't have to deal with home oxygen. Some of the after care was easier since we had been through it before. We knew how to clean her chest, to avoid swimming for a few weeks, to avoid large crowds for a few weeks, and to give sponge baths for a short period of time. Unlike the first surgery, Jaycee didn't develop a bump on her chest. Perhaps that only happens to babies? She was back to normal in a short amount of time. She never lost any skills while she recovered; she just picked back up where she left off.

It was a relief to have Jaycee home again with a more efficient heart. Today at age 8, her heart is still monitored yearly and often checked during admissions for illnesses. Currently, Jaycee has some "mild" leaks in her heart that should be fine. The cardiologist does not anticipate any more surgeries. She is not on any heart medications. But, when Jaycee gets sick, her oxygen saturation levels do tend to fall. We have oxygen on stand by at home and generally use it a few times a year. Also, Jaycee cannot take the heat at all. I'm not sure if the heat intolerance is from her heart history or her asthma. I just know it affects our plans all summer long.

So, that is the end of Jaycee's stories of how her heart was mended.

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.............

A Letter to Myself...Back in Time

Have you ever wished that you could go back in time and give yourself advice? I hope I'm not the only one anyway. In honor of Down syndrome awareness month, I have written a letter to myself in the year 2006 from myself in the year 2012.

Dear Evana in the year 2006,

Congratulations on the birth of your baby! I know you are feeling all sorts of emotions due to hormones, stress, and shock. You never expected to have a baby with Down syndrome at age 25, nor did you know it was even a possibility. Your emotions have you questioning lots of things. You wonder if your husband will stay with you (he will) and if Jaycee will live through all these challenges (she's still alive today). Due to the doctor's description of her, you wonder if Jaycee will even look like you or Jason. When she's a toddler, you'll find a mole on her head one day in a similar location to your own and it will change your life. Right now, you are under much stress so here is some advice.

The first thing you need to understand is that you will always, always have times when your emotions get the best of you. Right now, you believe that you haven't fully accepted Jaycee's diagnosis because things are bothering you. It will take you months before you realize that things are always going to come up that will cause you hurt or a sudden emotional reaction. The stares, comments, and cruel behavior aimed at Jaycee will always cause you pain. But, the good news is that the emotions do get less intense as time goes on.

The next thing I'm going to tell you is really important so fully digest this. Your first job is to love and nurture Jaycee,  not to be her developmental specialist. You have a team of people who help care and treat Jaycee's medical conditions and delays. As part of their job, they will offer ideas on how to help her. Don't let it overwhelm you. You are her mother first and foremost. You are not her teacher, nurse, or therapist though at times you have to be all of these things. Because you are trained as a speech-language pathologist, your brain will want to automatically go into therapy mode with Jaycee. You will see areas that need worked on and you'll take it on yourself to do much of it. Whenever you get stressed about things you need to do for her or the skills you need to work on, stop and take a break. This shouldn't be your main focus as her mother because when things happen much later than expected, you blame yourself. Those times of limited success aren't your fault. Six years later you'll still be trying to convince yourself of that.

Finally, take time for yourself. Motherhood brings on much responsibility. Jaycee's heart condition and special needs have multiplied that more than you'd ever imagine. You feel an enormous amount of pressure waiting for Jaycee's first open heart surgery. I'm saying first because unfortunately there will be another one. Don't look at this first heart surgery as the endpoint of her medical problems. There will be many scares and problems coming up. You will give more of yourself than seems humanly possible. Because of that, you need to remember that you need to take care of yourself. Don't make your husband wait for months for a date night. Given your mental state most of the time, you should feel honored that he wants to spend time with you! Time away from your home responsibilities will re-energize you. Don't let yourself get so wore down before you finally submit to a break. Take them preventatively before a mental breakdown occurs.

Every time you get overwhelmed, get this letter out and reread it. Remember to laugh. Enjoy your life. Count each day as a blessing.

Sincerely, The 2012 Evana