Our first heart belongs to Chloe

Welcome to the first day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out yesterday's post.

Today's post comes from Kelly

The Story – Chloe June

In February, 2008, I was so excited to finally be pregnant! I couldn’t wait to find out what we were having! I created a birth plan, read a ton of books about sleep schedules and researched local pediatricians. I was able to keep up my daily exercise regime and continued to eat extremely healthy. I followed all of the pregnancy “no-no’s” very strictly, too. I didn’t have any nausea, morning sickness, aches, heartburn, or uncomfortable side effects. If I could be pregnant year round, I would!

After hearing horrible birthing stories from friends and strangers, I admit I was nervous for the big day. But the day Chloe was born was perfect as well! After only five hours of labor and three pushes, I was crying and laughing at the same time!

Chloe June scored 8 and 9 on her APGAR and was finally swaddled her up so I could hold her. I remember trying to breastfeed her immediately. She seemed to be very sleepy, but I assumed that was normal. Then family members came to visit and our room became a joyful revolving door for the next five hours.

After an evening bath, I laid Chloe in her bassinet at 9pm. She was all swaddled up and very still. One may have thought that this was a perfect Kodak moment, but I became very nervous. She looked like she wasn’t breathing. No chest rise and fall. I mentioned this to my husband, but he thought she was fine. I continued to stare at Chloe, trying to convince myself that nothing was wrong. That didn’t work. I decided to ask the nurse. She came in and said Chloe was fine and that I had “new Mommy jitters”. Another fifteen minutes goes by and I’m still staring at Chloe. She was just laying there, hardly moving, and just not looking right. Again I buzzed the nurse. Same answer. Long story short, I ended up buzzing the nurses a total of FOUR times before they took Chloe back to the nursery to keep an eye on her (the hospital did not have a NICU).

Around 11:30pm, I woke up and walked down to the nursery to see Chloe. When I got to the window, I didn’t see Chloe in there. Actually, the nursery was completely empty. For some reason, I wasn’t worried. On my way back to my room, a HUGE rush of doctors and GIANT x-ray machines rushed into the nursery. Again, I wasn’t worried. My daughter was fine. All of my ultrasounds were perfect. Her APGAR results were great. She was fine.

When I got to my room, I buzzed the nurse and asked where Chloe was. She came in and said that they do think something is wrong with Chloe but do not know any details yet. She would keep me posted.

I was shocked. I wanted to yell at the nurse, to tell her I was right and why didn’t she listen to me sooner, but the words didn’t come out. I woke my husband and asked him to crawl into bed with me. For the next three hours, we wondered out loud what could be wrong with her. Did she have a virus? Maybe her lungs are struggling? It can’t be a big deal, right? We would’ve known long before this if something was seriously wrong, right? That’s how we comforted ourselves during those three long hours.

At 3am, a doctor came into the room. We bolted out of bed to meet him. He introduced himself as a Pediatric Cardiologist. “Cardiologist” didn’t register with me. I know a Cardiologist is a heart doctor, but Cardiologists are only for old people who have heart attacks, like my Dad, right? A baby would never need a Cardiologist. So it didn’t “register” that something was wrong with her heart. He sat down and said these exact words “There is something wrong with Chloe’s heart. She was born with a heart defect and she will need open heart surgery”.

I don’t remember the rest of the conversation because I was screaming my head off. I have never felt that way before, so out of control, and thankfully, I haven’t since. I was completely shocked, scared, worried, and angry. I felt like I had been lied to by my doctors, nurses, and ultrasound technicians when they all said I had a healthy baby. The cardiologist continued to talk to my husband, who managed to maintain his composure during that time. The doctor drew pictures of Chloe’s heart and discussed the next steps.

My husband left and followed Chloe to Children’s Mercy while I demanded immediate discharge. Everything happens for a reason, and thank goodness I had a very easy delivery so I could leave soon after and be with Chloe.

Chloe spent two weeks in the NICU. I wanted to know everything about her heart defect. Asking questions was the only thing keeping me sane during those first few days. I learned about the chambers, the way the blood is supposed to flow, the main arteries, the coronary arteries, pulmonary hypertension, etc. I learned about catheterizations, heart/lung bypass, ECMO, pulmonary artery banding and conduits. I learned how to insert an NG tube, about oxygen cannulas, arterial lines, breathing tubes, good/bad heart rates, retractions while breathing, cap refills and much, much more. Research and learning was a way for me to cope.

We took Chloe home on oxygen, a Pulse Oximetry & Heart Rate monitor and an NG feeding tube. She needed to gain weight before she could have her surgery.

By 2 months old, her oxygen sats continued to get worse, so they did a Balloon Atrial Septostomy to increase the size of her ASD. By 4 months, her VSD was closing and the doctors couldn’t wait any longer for Chloe to gain weight. She had to have open heart surgery immediately. Since the surgeons in Kansas City couldn’t operate on Chloe due to her rare coronary artery pattern, we had to find a surgeon who could. Luckily, we found him at Denver Children’s Hospital and made the 13 hour drive a few days later. Chloe sailed through her Arterial Switch Operation with flying colors! We went home eight days later.

Chloe still never really learned to take a bottle, and her GERD was so bad that she still wasn’t really gaining weight. At six months, the GI doctors decided to do the Nissen Fundoplication and G-tube procedure.

Chloe is currently 15 months old and is doing really good! She gets weekly PT, OT and Speech therapy to help with her delays. She is eating better, but still relies on her G-tube. I am so blessed and proud to be a heart mommy!

The Blog – CHD Babies (http://chdbabies.blogspot.com/)

Throughout Chloe’s first six months, all I did on my down time was CHD research (I still do). I wanted to learn everything I possibly could about CHD. I had so many questions. What did I do wrong in my pregnancy? Why did this happen? Will it happen in our next pregnancy? Will she need more surgeries when she gets older? Will she be able to play sports? Will her babies be born with CHD?

I had never heard of CHD before Chloe, let alone knew anyone else who was affected by it. I felt so uninformed and useless, unable to help my daughter. I know I couldn’t have prevented it, but I may have felt better if we were prepared in advance. I doubt it would have been less scary, but I’d like to think I would have handled those first few moments better.

I read somewhere that the majority of heart defects go undetected in pregnancy. I thought of all of the families after me, going through the same shock I did, discovering their child has a CHD. I remember feeling so unorganized during Chloe’s first two weeks in the NICU. I did a lot of research online, in the midnight hours before heading back to the hospital for our 13 hour days. I remember having to go to many different websites to get information. That’s why I decided to create my blog, CHD Babies. I wanted a “one-stop-shop” for new and existing heart families to go to and read all about CHD.

I definitely don’t claim to have everything about CHD on my website! But I do try very hard to put as much info on there as possible, from CHD statistics, definitions and heart medications to miscellaneous CHD research and details on what to expect during your child’s open heart surgery.

There are many different CHD blogs out there making a difference! I think each one is wonderful and unique and we are all fighting for the same thing – raising CHD Awareness!

On February 14, CHD Awareness Day, I will have the great opportunity to be interviewed by a local Fox News reporter about Chloe’s heart defect! I hope this will help raise awareness to others that do not know about CHD, like me…before Chloe was born.

The Bill - Chloe’s Law

When the nurses finally took Chloe back to the nursery to keep an eye on her, they did a Pulse Oximetry Screening. Normal oxygen levels are 97%-100%. Chloe’s was in the 60’s. That result led to the ordering of an echocardiogram and finding her CHD.

I was first introduced to a Pulse Oximeter when Chloe was in the NICU. We took her home on oxygen and a Pulse Oximetry monitor for four months before surgery. We became very familiar with keeping her saturations between a specific range, switching the sensor to the opposite foot multiple times a day, etc.

I later learned that Pulse Oximetry Screenings are not mandatory on newborns. They are only done when a baby is showing signs or symptoms that something is wrong.

After many hours of research, I read that many babies that are born with a CHD are sent home, undetected. (Chloe could have been one of them if it weren’t for her paranoid Mama)! Some of these babies do not show symptoms of congestive heart failure during their 48 hours stay in the hospital. Once they are home, these symptoms soon develop. Sometimes the congestive heart failure is mistaken for a virus. Sometimes the symptoms damage the heart and surgery may not be an option. Sometimes it’s too late.

I believe the Pulse Oximetry Screening should be mandatory on all newborns. It’s preferable that the test be done after the first 24 hours of birth (to lower the risk of a false positive) but before discharge from the health care facility. False positives may be scary, and additional tests may be done to rule out a heart defect, but I’d rather be safe than sorry.

I know the Pulse Oximetry Screening won’t detect all CHDs, but it will detect some, and that’s a first step to saving lives.

If you live in Missouri, or know someone who does, please help get Chloe’s Law passed. Chloe’s Law is a bill that would amend the current newborn screening requirements to include Pulse Oximetry Screening on all newborns before leaving the health care facility. I submitted this bill to my local House Representative in August 2009 and he supports it. Now we need other house members to support it as well. Please write your local Missouri House Representative and ask him to support Chloe’s Law, Bill Number 1604. For more info, go to http://chdbabies.blogspot.com/2009/08/if-you-live-in-missouri-please-help.html