Wednesday, April 30, 2014

No More Tears

Sometimes I am a cry baby. I hate when that happens to me. 

If you would ask me to give a detailed recollection of Jaycee's delivery and the moment I got her diagnoses, then I would probably cry or at least fight back the tears.

I have had to publically tell this story on a few occasions, and I had to rehearse the story several times in order to detach from my emotions. Once, I had to give my story spontaneously in a group setting, when the emotions of my story overtook me. I had to pause because I was crying so hard. Yikes!

I was embarrassed that I was crying about something, that at that time, happened 6 years ago. I was also frustrated that I seemed stuck in the despair in that moment. Yes, that moment in my life was sad, unexpected, and emotional. However, I have moved on. I'm not that scared new mom who is upset that her child has Down syndrome and a heart condition. But, I feel like when I cry while retelling the story that I really haven't moved on. I ask myself, "What's wrong with me?"

I've had a similar reaction to Jaycee's serious illness in 2013. She almost died last fall from septic shock and heart and lung failure. It was a scary 4 weeks in the hospital with Jaycee on a ventilator for 3 of those weeks. There were so many scary moments. There were a few times when Jaycee had sudden worsening of breathing or blood pressure drops. The doctors would rush in. Alarms would go off. I looked in horror. My body had a physical reaction to the stressful situation: My heart raced. My body had shakes that I tried to fight off so the medical people wouldn't notice me being so afraid. I would get really hot or really cold. As a parent, this was my worst fear possibly coming true. But, it didn't. After 4 weeks of hell, the story had a happy ending.

Still, there have been times in the past few months when I have thought about the time when she was in the hospital or had something trigger a memory of that illness and I have cried. Sometimes, it has been a soft whimper and sometimes it was sobbing. I taped a video recording of this testimony for church (after rehearsing), but I wouldn't dare talk about this story in public yet. It's too fresh. The memories are too emotionally powerful. When they played the video testimony at church, I needed those Kleenex stuffed in my pocket!

After crying my way through the church viewing of our testimony, I thought again, "What's wrong with me?" The story has a happy ending. Why can't I focus on the happy emotion? Don't get me wrong. I am happy, but the tears seem to erupt out of deep rooted pain in my soul.

I think part of the issue in both situations was that my joy came back over time; it wasn't instant. The fear and the panic was instant and powerful. It was a strong emotion in an unexpected time. Those feelings became associated with those memories. But, those negative feelings are not from God. If they aren't feelings of God, then they are a hindrance to me.

I started praying about my memories. I want to look back on times like with the attitude of, "Wow! That was bad but man we made it! Thank God," with nothing but joy in my heart. I don't want to cry out of the memory of the fear. If someone asks me about these tough situations, I want to share my story of strength and courage, giving God glory instead of some person who appears weak and defeated by the fear from that moment. In other words, I want the tears to stop. I want those fearful and painful feelings from the past to be in the past. I want my current feelings of relief, thankfulness, and joy to be ones coming through.

I have been praying that God would help take away those feelings that aren't of Him and that only Godly feelings of joy and triumph are left. So, that's my new motto: Just say no to tears!

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Wednesday, April 23, 2014

The Power of Love

At church, we often sing about and talk about the love of God. It is described as unconditional. God loves us when we are good, bad, saved, unsaved. His love is always there. It is hard for us to comprehend and grasp this because as humans, we often give love based upon conditions and worthiness.

Sometimes, I think about pregnant women sitting in a doctor's office being told their unborn baby has a problem. Maybe it's Down syndrome, cystic fibrosis, or some other long term, life-altering diagnosis. I think about these women being told this upsetting news by a doctor, who is most likely telling them only negative things about their unborn son or daughter. I feel for these women.

Once in awhile, I will converse on-line or in real life with women who get a prenatal diagnosis. Some are deciding what to do. They want to know what their life will be like, what their child will be like, and if their other children would be hindered from having a sibling with special needs. Of course, it's impossible to predict any child's abilities and weaknesses prenatally with any certainty. If I present 10 kids with Down syndrome to this frightful woman, she would probably get 10 somewhat different pictures.

I try to remember that these are scared women asking reasonable questions instead of feeling insulted that they don't want a child like mine. I feel pressured to share positives about raising my own child who has a number of health issues and downplay any difficulties (i.e. trouble speaking, surgeries, frequent illnesses). I try to find the right words to say in case I can make a difference for that unborn baby.

Lately, I have reconsidered my "selling points." Because, when it all comes down to it, the power of a mother's love is the only thing to tell them: Yes, your child will have bad days, have difficulties, get sick, and sometimes make you feel stressed, but you will love your child so much. You will celebrate their victories and try to make their hurts go away. You will love your child, and you will adjust your life plans and goals as needed because you love them.

I love Jaycee. She's not the greatest athlete or student. Most likely, she's going to need me the rest of her life, but that's ok. I love her. She's my child. Our love and bond has gotten us through some rough patches and seasons. Much like the love of God, this love is hard to explain and describe until you have experienced it.

So, my thoughts about these women who are contemplating what to do with their pregnancy are this: You will be stronger than you ever imagined you could be. And you will learn just how powerful love is.
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Wednesday, April 16, 2014

Fasten Your Seat Belts

A couple of months ago, Jaycee turned 8. Eight was a number that seemed to signify she was not little anymore.

This fall, she'll be in second grade. That seems like a "big girl" age too.

Jaycee is getting older, and she's maturing too. She's listening to me often when I give her a direction. I also don't feel like I have to have a death grip on her hands in public to keep her from running off. Sure, she still has the occasional spontaneous sprint from me in public, but it use to be EVERY time I took her out.

Yes, Jaycee is getting older. And I've been trying to make adjustments for her, allowing her to have more independence and freedom. Sometimes, you just do things for your child and you keep doing them out of habit. Then one day, you realize that maybe it's time to adjust for maturity.

First, we got her a new bookshelf to house her collection of movies. She has several DVDs of Barney, Wonder Pets, Signing Time, and Winnie the Pooh. For the past several years, I have kept her movies locked in her closet to keep them from being destroyed. Jaycee use to put the movies in her mouth and bite them. Then, they wouldn't play or skip, and we would both be frustrated.

Now, Jaycee has all of her movies within reach. She loves it! And she's doing a great job. She's keeping the movies on the shelf and handling them with care. It was a big step for the both of us.

Then, there is the whole bathroom situation. At home, Jaycee needs minor assistance. In public restrooms, I usually go in the stall with her to help her and make sure she doesn't run away from me. Recently, she walked into a public bathroom, went in a stall, and shut the door on me. Message received! I stood outside the stall like a weirdo watching through the cracks in door to make sure she was doing all the necessary steps. She did, and I was proud. From then on, I have been letting her go to the bathroom stall by herself. It's been another big, mature step for her. To think, one day she might be able to go inside the bathroom totally by herself. Wouldn't that be something?

Finally, I decided that Jaycee and Elijah (age 4) needed to try to buckle their own seat belts. We spent several days learning how to pull the seat belt out while holding onto the silver buckle. Elijah did it by himself first. We clapped and cheered. Jaycee was still struggling. She would pull the seat belt out but only make a half-hearted attempt at buckling it. If she didn't get it on the first try, she was done.

A couple of days ago, the kids climbed into the van while I went to get the mail. I thought that maybe if I left, they'd make a better attempt. I came back and both children were buckled in! It was magical!! Elijah didn't know how Jaycee got buckled in, so it was clear that she did it herself. First time ever for her!! I think she's only done it twice so far, so we are still working on it. She is content to let me do it, so I'm trying to take a step back and let her try.

Yes, Jaycee is growing up. There are a thousand little steps like this that we have yet to master. But, she is making steps to independence. It's exciting.

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Wednesday, April 9, 2014

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.

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Wednesday, April 2, 2014

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

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