Thursday, April 24, 2008

I'm Finding Courage Through Sharing

As an avid reader of blogs, I've discovered a gem of a writer in Michelle at In the Life of a Child. She began a blog carnival called Finding Courage Through Sharing. It is aimed at a large community of parents struggling through extreme medical challenges with their children. The purpose of the carnival is to give these parents a voice, a place to connect, to grieve a loss or a setback, to share a concern, a frustration, or to share those rare and wonderful triumphs… and to begin trying to heal. It is meant for any parent who has been through any form of medical challenge with their child, and also for those who are still in the midst of facing those challenges.

This post introduces my fellow participants of that carnival to my story.


At my 20 weeks visit, the ultrasound technician pressed down on my stomach and rolled the wand through the warm jelly. I was excited and straining my eyes to see the grainy images coming across on the monitor. Every so often, I was able to identify my baby's body parts. Colleen, the technician, would say things like, "Here's the heart. That is what we want to see. Nice blood flow. Nice strong beat." My husband, Charlie, looked elated to see our baby growing inside of me. "How big is the baby?"

Colleen replied, "I'll let the doctor go over that with you in just a little while." When it was all finished, she handed me two black and white pictures. We made our way back to Dr. C's office and sat down on the other side of his cherry desk. Charlie inquired, "What do you think?"

I replied, "I'm not sure. I'm nauseous from her pressing on my stomach so much." The pregnancy was really weighing on me. I had always thought that I’d begin to feel better by the midpoint, but it hadn't come yet. I was disappointed. I wanted to be one of those glowing mamas-to-be.

Just then, Dr. C came into his office and sat down behind the desk. He picked up my chart, and began to review the images one-by-one. I noticed that he stopped on one and carefully inspected it, but then moved along to review the others. I was looking for clues to how he felt my baby was doing. His body language revealed something wasn't quite right.

"The baby looks pretty good. Organs are developing appropriately, but the baby's size is small. Also, the overall tummy measurements are too big. You have a low placenta, and we'll need to keep watching this. I'm going to have you come back in eight weeks to recheck the baby's size and the position of your placenta."

I fumbled with my words but finally stuttered, "Oh. Oh. Okay. Is there anything different I should be doing?"

"We've found that women who rest on their left side can improve the blood flow to the placenta. So when you are resting or sleeping, use your left side. Just eat well and take it easy. We'll see what happens in eight weeks."

There it was. It was the beginning of our journey. We had no idea what was about to unfold for our baby.

For the next eight weeks, I did as instructed. I often wondered if I was actually helping my baby to grow. I hoped so. At the next ultrasound, the results again were not great on the baby's growth, but my placenta had grown up and away from my cervix. I also shared that I was now swelling off and on. My hands were chubby. My face was puffy, and, well, I no longer had ankles. Dr. C said, "Lots of women swell when pregnant. Your blood pressure is normal, and you don’t have any protein in your urine."

I'd have to come back in four weeks to recheck the baby's progress. Meanwhile, I began to have headaches off and on. The swelling worsened, but finally I didn't feel nauseous anymore. That was a blessing as all of the rest was unraveling. I prayed and hoped for the best.

At 32 weeks, my stomach had begun to pop out a bit. I waddled a little, and my doctor said that the baby's growth was worse. The baby was approaching falling below the third percentile for weight. "Why do you think this is happening Dr. C?" I inquired.

"Your placenta is not working well. We call this intrauterine growth restriction. This happens sometimes. I’d like you to come back every 3-4 days now. We’re going to do an ultrasound and biophysical profile at each visit."

As I heard this, I wondered when I would really feel what he was telling me. It occurred to me that I should probably feel like crying, but all that I felt was numb. Charlie looked very concerned, but he remained very quiet. I could tell he was pleased with a plan of action to watch the baby. Having grown up with an obstetrical nurse for a mother, I knew what this meant. Dr C just wasn't saying it yet. Our baby was getting into trouble and would likely come early. When I returned home that day, I laid down to my left side and prayed for the health of my baby. I was tired, swollen, hot, and generally uncomfortable.

Within two sets of ultrasounds, I was placed on complete bed rest. The swelling was throughout my body and into my brain. My teeth felt very tight inside my gums, and I could feel my pulse against my teeth. Light was painful to my eyes, and straight lines appeared wavy. At one point, small little fireballs raced across my field of vision. I thought, "What the heck was that?" I blinked in response, but I could see the fireballs even with my eyes closed. As fast as they came, they were gone.

A few times, an uncontrollable twitch jerked my head to the left. I had no idea what had happened, but it stopped. My mom had begun calling me daily from Chicago where she lived. When I told her what happened to my head, she replied, "Jen, I think you are getting preeclamptic. I want you to tell Dr. C what happened. Please hang up now and call him." I argued with her, "Mom, he never said he suspects preeclampsia. My blood pressure is fine, and I have no protein." She calmly replied with love in her voice, "Hon, I know he didn't say those words, but you're having some issues. Tell him. It can't hurt to tell him." My emotions were reminiscent of being a teenager again. I felt rage as my mom's concern became my reality. Why couldn't I just have a normal experience? Why? Why my baby? I didn't understand that my uncontrollable emotions were also a sign of my central nervous system faltering. I didn't get that I had been experiencing small seizures. I couldn't process information as my normal self. I had no inhibitions. Whatever came to mind is whatever came out of my mouth.

As I got sicker, so did my baby. Eventually, it was time to remove the baby from the comfort of my womb to begin the process of ending my preeclampsia. My health was failing. My kidneys were shutting down, and my blood pressures were stroke worthy. I had been hooked up to an IV of magnesium sulfate, was wearing an oxygen saturation monitor on my left index finger, and had an oxygen mask strapped to my face. They were inducing me except that my body wasn't responding well. After nearly 24 hours, I had only dilated to 1 centimeter. Charlie, my mom, and my good friend, Shanna, were with me. Suddenly, my fetal heart monitor began to alarm. My mom instructed me to flip over onto my right side. The alarm kept ringing. I wondered if my baby would die inside of me.

I was wrong. My beautiful Grace Ann was delivered by c-section soon after the alarms began to ring. She was small for 34 weeks gestation but she cried and wailed. I was so relieved to hear her cry. The neonatologist assessed our precious miracle, and briefly allowed my mom and Charlie to bring Grace to my place on the OR table. She was wrapped in a blanket and already had a hat on her head. She squinted under the lamps of the operating room table. As fast as I kissed her forehead, Charlie tucked her inside his arms and rushed off with the team to the NICU.

Nearly three days later, I was finally able to visit Grace for the first time in the NICU. My health status prohibited moving me outside of a dark room and an IV of magnesium sulfate prevented eclamptic seizures. By the time I got to the NICU, Grace’s color was pumpkin orange. She was hooked up to a CPAP machine to help her breathing, and she fretted and squirmed inside her incubator. Unfortunately, I couldn't see her. My vision had been impaired due to hypertensive retinopathy. Essentially, my blood pressure had gotten so high that blood vessels had burst inside my eyes. Disappointed, I held her tiny hand, and tears streamed down my cheeks.

It was just the beginning of our journey as parents of premature babies and of children with a genetic disorder called Alpha-1 Antitrypsin Deficiency. I’ll share more of our journey along the way with you. In the meantime, I'm Jen. I survived severe preeclampsia and temporary blindness twice. I've been a NICU mom twice.

My children are miracles. Their lives are not guaranteed. Their presence in my life reminds me to enjoy life's little interactions. In those spaces is where God's grace shines.

My Grace is now six years old. She has a younger sister, Meghan, who is nearly four. Meghan was born a micropreemie. Both of my daughters have Alpha-1. I'm mom to the Alpha Girls. :)


Ursula said...

Wow Jen. Like Michelle, I am amazed at your strength to persevere and continue on. I couldn't imagine what you've gone through (twice! there's a special place in heaven for you) and I'm honored to have been able to read this.

It's great to know that not only are there all of these miracle kids out there, but their miracle moms as well.

jollyholly said...

Hi, Jen. I enjoyed meeting you through this post. I also really like your blog title. My daughter also has a rare inherited genetic disorder…though not the same one as your girls.
Glad to meet you.


Childlife said...

Every time I hear more details of your story, Jen, I am just overwhelmed by your courage. I had no idea that you had to deal with retinopathy through your births too. I found myself in tears as I read about you standing in the NICU unable to see your baby. I know how hard it was not to be able to hold, my baby, but not to be able to see her either... you are one amazing mommy!

I'm so glad you joined in Jen, you are such an inspirational soul and I know that your experience will mean so much to everyone in the group. I've learned so much from you! Hug your beautiful girls for me :)

Shannon @ Gabi's World said...

How terribly frightening that must have been! So glad your blindness was only temporary and that you and your girls survived!