Little Lu was born in the middle of the night, in mine and my husband’s bed, on July 6th 2010. Two weeks later, she was diagnosed with a Congenital Heart Defect. She would spend a total of 13 nights in the hospital, on 2 different occasions, and have to overcome many other challenges during our 5 month wait for the operation the would change her life forever. During that long 5 months of challenges and milestones, Lu would teach the world to smile, in spite of their struggles and show people how to be strong, no matter what they had to endure.
My husband and I found out that I was pregnant on October 19, 2009, when I was only a few weeks along. We were shocked and elated, to say the least, but we were also nervous and scared. A few months earlier, the company that my husband worked for closed and he was left jobless. He then opened his own business but, after that didn’t work out, we were forced to move into my mother’s house while we tried to get on our feet again. I honestly didn’t even think about finances when I saw that little pink plus sign. Instead, my initial worry was whether or not this pregnancy would stick. I had never had a miscarriage but, for some reason, I found myself worrying that I might be let down if I got my hopes up too much. I tried not to get too excited until we had an ultrasound or reached the second trimester but after a few days, I couldn't help my giddiness. My husband and I started talking about names, started following the growth of my embryo online, and I started taking several vitamins to aid in the development of my unborn baby.
My husband and I decided to try and wait until Christmas to tell our family, just in case, but that didn't exactly work out. My twin sister sent me a text message sometime in early November telling me that she had figured out why she had been feeling so crazy lately. She was pregnant. Needless to say, I was freaking out. She was coming over later that night to pick me up for dinner so, sitting in her car, in my mother’s driveway, I told her that I was also pregnant. Needless to say, she freaked out as well. Come to find out, I was probably about 2-4 weeks farther along than her. We were both so happy to be sharing this experience together.
My mom found out in a more disappointing way; since we lived with my mom, she often went through the mail and piled ours on the counter. One afternoon, I was in the office (now called the offisury or the nurffice) writing an email to an old employer about my pregnancy, when my mom came in and asked me if I was pregnant. A local family resource group had learned of my pregnancy through the health department and sent me a post card congratulating me on the expected arrival of my baby. So the beans were, officially, spilled. She started to cry happily and sat down in a chair as if she were going numb. I almost shed a tear watching her excitement and we talked about how I was feeling and what I wanted to eat.
We waited a few weeks, until Thanksgiving, to tell everyone else. We wrapped my framed ultrasound photo in gold paper and gave it to my mother-in-law, as a gift, right as everyone sat down to eat. We got a friend to capture it all on video and it was priceless. We later posted the video in Facebook to let everyone else know about our little surprise. After about 10 weeks of hiding it, we were finally able to share our excitement with everyone. Facebook would be a great network for me while I was pregnant. I met other pregnant woman and my sister and I created a group called Pregnancy and Motherhood Uncensored where we talked about the pleasures and pains of carrying a child. I posted weekly photos of my growing belly and status updates about my pregnancy. Today I look back at those photos and think about how, in those moments, we were so carefree and unaware of what challenges we would have to overcome in the next few months.
My husband and I decided to try and wait until Christmas to tell our family, just in case, but that didn't exactly work out. My twin sister sent me a text message sometime in early November telling me that she had figured out why she had been feeling so crazy lately. She was pregnant. Needless to say, I was freaking out. She was coming over later that night to pick me up for dinner so, sitting in her car, in my mother’s driveway, I told her that I was also pregnant. Needless to say, she freaked out as well. Come to find out, I was probably about 2-4 weeks farther along than her. We were both so happy to be sharing this experience together.
My mom found out in a more disappointing way; since we lived with my mom, she often went through the mail and piled ours on the counter. One afternoon, I was in the office (now called the offisury or the nurffice) writing an email to an old employer about my pregnancy, when my mom came in and asked me if I was pregnant. A local family resource group had learned of my pregnancy through the health department and sent me a post card congratulating me on the expected arrival of my baby. So the beans were, officially, spilled. She started to cry happily and sat down in a chair as if she were going numb. I almost shed a tear watching her excitement and we talked about how I was feeling and what I wanted to eat.
We waited a few weeks, until Thanksgiving, to tell everyone else. We wrapped my framed ultrasound photo in gold paper and gave it to my mother-in-law, as a gift, right as everyone sat down to eat. We got a friend to capture it all on video and it was priceless. We later posted the video in Facebook to let everyone else know about our little surprise. After about 10 weeks of hiding it, we were finally able to share our excitement with everyone. Facebook would be a great network for me while I was pregnant. I met other pregnant woman and my sister and I created a group called Pregnancy and Motherhood Uncensored where we talked about the pleasures and pains of carrying a child. I posted weekly photos of my growing belly and status updates about my pregnancy. Today I look back at those photos and think about how, in those moments, we were so carefree and unaware of what challenges we would have to overcome in the next few months.
My pregnancy was pretty uneventful, considering the serious heart problem my baby was dealing with since she was the size of a sesame seed. During the 42 weeks of my pregnancy, I scanned the internet daily trying to get information about anything that could help me when the big day arrived and after. I researched products trying to figure out the safest items for my baby and tried to learn about health factors that might affect my baby in utero and after birth. I read about carseats, strollers, cribs, SIDS, vaccines, Downs Syndrome, even cancer. But I never once came across an article or website warning me about how common Congenital Heart Defects were. I may or may not have scanned something that might have mentioned something about CHDs but I don’t recall ever thinking that it was important to research. Being the most common birth defect, affecting 1 in 100 babies born in the U.S., you would think I would have known more about it. You would think that someone would have advised me about it, since it was so common. I mean, I was warned about every other thing that could go wrong, why not heart defects? I would find myself asking this same question, two weeks after I gave birth.
About 26 weeks into my pregnancy, we decided to have a home birth. My sister and her boyfriend suggested we watch a documentary called The Business of Being Born and it encouraged us to look into it. We were on Medicaid and there was one local midwife that performed homebirths for women on Medicaid. We checked her out and fell in love. She was perfect. During the last half of my pregnancy, she was one of my closest friends and helped me in so many ways. I had never felt that with my OB doctor, maybe because I had never met her, even after 5 office visits.
We also decided not to find out the sex of the baby. We had 3 ultrasounds, turning our heads every time the technician brought her wand near the “secret area” of my fetus. During the first ultrasound, being that I was so worried about miscarrying, I asked about the heartbeat. The technician said the heart rate was in the 140’s. I asked if that was good and she replied with a smile, “It’s on the good side of good.” In our later ultrasounds, my husband and I would happily joke around and quote our first technician. “The good side of good.” How deceiving a simple phrase can be. How cruel and hidden a serious problem can become.
It was nine, uncomfortable, days after my due date that Lu would be born. Our homebirth was amazing. I went into labor on July 6th, around midnight, and had a pretty easy labor of only 4 hours, including pushing. During the last part of my pushing, I was in the zone. All I heard was, “The head is huge!” and “Here he comes!” (We all thought she was going to be a boy.) After the last push, my baby was placed on my chest. I was so happy and exhausted that I almost forgot to check the gender. When I saw she was a girl, I was overwhelmed with happiness. It didn’t really make a difference to me before but after I found out, I knew she was perfect and I couldn’t imagine her being any different. She was so beautiful and alert and she looked so healthy. My husband gave me all the credit and complimented me about how well I took care of myself during my pregnancy. She weighed 9 lbs. 4 oz. and you could tell. She was so chubby, especially her cheeks.
Three days later, my sister gave birth, also at her home, to an 8 lb 3 oz. baby girl named Sailor Brielle. For the next few weeks, our families were lost in a world of miracles and exhaustion. We posed the babies together in pictures, always noting their chubby cheeks. We would later find out that Lu 's chubbiness was caused by fluid build up from her heart defect.
Those two weeks between Lu’s birth and her diagnosis are kind of a blur. We had several visitors, everyday, and struggled to keep a normal schedule around naps. Lu and I were champions at breastfeeding. It was a great experience for the both of us. We snuggled every 2-3 hours, watching music videos on VH1 in the middle of the night, and staring at each other during the day, while she gulped down my milk. We loved each other in a way that I could have never imagined and we built a strong bond from the start. She was my girl and I was her mom. It was the greatest feeling ever.
Only hours after Lu was born, I noticed that she was breathing very fast. I was very concerned and it was during my sister’s birth that I brought up Lu’s labored breathing to my midwife. She admitted that it was fast but since Lu was eating so well and her color was good, she advised me to just check with her pediatrician during her first visit. At her appointment, we met with a nurse practitioner. I told her about my worries with Lu’s breathing and she seemed very concerned. After counting Lu’s respiration rate about 4 or 5 times, she told me to monitor it until her next visit in one week. At home, I searched the internet trying to find out what could be causing Lu to have such a hard time breathing and I found nothing about heart defects and the signs and symptoms of CHDs. The only thing that concerned me was her breathing. She did sweat a lot and tire easily but I just thought those were normal occurrences when you have a newborn baby in Florida, during the summer.
A few days later, I decided that I couldn’t just wait and see what happened with her breathing. I was constantly comparing her breathing to her cousin’s and I just couldn’t ignore that it was different, so I took her to the emergency room. With a few tests, they concluded that her blood-oxygen levels were low and took a chest xray, which, to the doctor, didn’t show anything abnormal. The doctor admitted that something was wrong with her breathing but didn’t have any answers. This was the most common birth defect and an ER doctor didn’t have any answers.
Since it was a Saturday, we had to wait until Monday to get a radiologist to look at the x-ray. On Monday, we went to her pediatrician’s office and saw the nurse practitioner again. She sent us home to wait for a phone call with the results from the chest x-ray. It was 4:45pm before we got the call that Lu’s x-ray showed signs of pneumonia. We were told that the doctor who was filling in for Lu’s pediatrician wanted us to come in the next day. I was dumbfounded. My two-week-old baby supposedly had pneumonia and we were supposed to wait for a treatment plan because her doctor was on his way home for the day? I was not waiting while my newborn struggled to breathe. An hour later, we sat in a different ER waiting for test results. We were admitted to the pediatric floor with a diagnosis of pneumonia and, finally, we thought we had an answer. During the night something was telling me that something else was wrong. I remember the ER doctor telling me that her heart looked enlarged in the x-ray but it could have just been her position on the table. That statement haunted me all night and I knew something more was going on.
The next day, the NICU doctor came in to see Lu and hurriedly took her from my breast. Just by looking at her for a few seconds, she could tell something was not right. She told me my baby was very sick and rushed her to the NICU for tests. For once, since her birth, someone saw what I saw. Someone, finally, realized that my worries were real.
That same NICU doctor would be the person who told us that they had found a hole in Lu’s heart. We sat in the family waiting room and watched as she drew a diagram of Lu’s heart next to that of a normal heart. She said that Lu would need a surgery in a few months but that her defect, Atrial Septal Defect (ASD), was one of the more treatable ones. I didn’t say much but I was terrified. After she left, my husband held me as we cried. The doctor’s words made Lu’s condition seem serious and also tried to give us hope that Lu would survive, but all I heard was “heart defect.” Its common knowledge that the heart is one of the most vital organs for living and hers had a giant hole in it, where there wasn’t supposed to be one. For so long, I had pictured the future for my family and dreamed about Lu growing up and living a happy life. I thought that since I had gotten through my pregnancy and delivery that everything was going to be fine. She had ten fingers and ten toes. Everything seemed to be how it was supposed to be, on the outside. As I sat there, in my husbands arms, crying loudly and shaking with every gasp for air, I thought of the possibility of my baby dying. I couldn’t bear the thought of losing my child. Since the day I found out I was pregnant, she was my life.
She spent 11 days in the NICU while they tried to control her heart failure. To this day, saying, typing, or even thinking of the words heart failure, makes me cringe. My newborn baby girl was in heart failure and I had to care for her, without the help of a nurse, while we waited for her to be strong enough for surgery. We brought her home and slowly got into a routine. She would get a lot of medications daily and require a special feeding regime. She struggled with pain and acid reflux but remained a happy, normal looking, baby. She was hospitalized again when she was 2 months old due to severe vomiting and a misdiagnosis of pyloric stenosis. After that was taken care of, with extra meds and a different formula, she started to eat a little better and keep most of it down, but went up and down on the scale. Not only was eating causing her pain but it was also an exhausting exercise for someone whose heart did not function properly.
Lu was originally scheduled for surgery, to repair the hole in heart, right before Christmas but on the day we were supposed to leave for the hospital, a repetitive cough required her surgery to be rescheduled for January 3rd 2011. At first, after having my heart set on having a healthy baby home for the holidays and being all packed and ready to go, the postponement devastated me. I was sick of waiting and wanted to start 2011 in a more normal way, but as the new date got closer I realized that something was not right about the first date. I was so nervous in the days leading up to her original surgery date but in the 3 weeks we had to wait, and through the holidays, something settled in me. I was relaxed. For once, I had faith that we were on the right path. Also, in those 3 weeks, Lu started to eat more and gain weight. We started baby foods and she discovered the joys of eating.
I won’t go into to many of the details of Lu’s surgery here, because it is in her blog, but the operation was a huge success. By day 3, post-op, Lu was almost completely back to normal and by day 4 she was discharged, feeling better than ever before. Since her surgery, she has had so much energy. She was a visibly happy baby before but now she is Lu x 10. She smiles and talks constantly and makes everyone giddy with her glow.
Today, Lu is thriving amazingly and that is all I have ever hoped for. We may have had to take a detour on her path but the journey has made us who we are, as people, and as a family. Through her experience, Lu has been an inspiration for everyone who has learned her story. She has been the face of hope and the symbol of strength. I couldn’t be happier to share her journey through life with a CHD and I couldn’t be more proud of what her smile will give to so many other families dealing with similar challenges. I cherish every milestone, every smile, every whimper, and even every dirty diaper, knowing that I am one of the lucky ones. I get to hold my baby while she sleeps. I get to watch her growing body and get to know her developing personality, everyday, while so many other parents of babies born with fatal CHDs do not. As I write this, I can hear her little voice, on her monitor, moaning in her sleep and I feel for the parents who don’t get to hear that sound. Approximately 4,000 babies die, each year, from a congenital heart defect, before they reach their first birthday. I cherish my daughter for those 4,000 families a year and I will do my best to nurture and guide her, for her entire life, not only for her, but in honor of those 4,000 babies a year. I will also share her story in hopes that it will help other families who have children born with a heart defect and inform pregnant women of this common disorder.
