I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Monday, February 13, 2012

CHD Awareness Week--Faces of CHD: Faith's Story

Today's story is about a very sweet little girl who fought HLHS. Faith's story is amazing, this story touches my heart to no end. Kayden's birthday is on December 21. As you guys know his last birthday with us was December 21, 2010. At the end of the story please read more of what I've wrote so you'll understand what I'm saying =].

I am the luckiest Mom ever. Faith was and always will be the most amazing little girl that ever lived and my husband and I consider ourselves to be so blessed to have been her parents. Faith could light up a room with her smile and made it her personal mission to make everyone she came in contact with laugh. She was more compassionate and loving than any other two year old I've ever met and our lives are better for having  known her.

My pregnancy started out blissfully normal. I had no morning sickness, gained very little weight, felt great. When we found out we were having a little girl in May of 2008, we were thrilled. When I went back to my doctor two weeks later, she said they were concerned the baby might have clubbed feet and to go see the high risk specialist but that it was no big deal. The high risk doctor was going to be on vacation for a couple weeks and, since we were told it was no big deal, we scheduled the appointment for about 4 weeks later when I was 26 weeks pregnant. We never, ever thought there would be something wrong with out little girl and saw it as another opportunity to get more pictures of our little princess.

On June 24, 2008 we went to the high risk specialist and our world turned upside down. The ultrasound took forever and then the doctor told us he thought the baby was missing part of her heart. He said in his career, he had only seen one other case like ours, of a woman who had been in a few weeks earlier. The doctor called a friend of his down at Columbia University Medical Center in New York City who set us up to come down the next day to be evaluated by another doctor. The drive to my parents' house from the doctors was horrible. We couldn't stop crying, couldn't believe what was happened. Couldn't believe that the baby that we wanted and loved so much had something so major wrong with her. Telling my family that day was one of the hardest parts of this journey since they too loved her and were so excited over another granddaughter, another niece. It was awful but we remained hopeful that maybe things were no so bad, maybe the doctor was wrong.
My parents went with us to Columbia the next day for the first of many appointments and tests. I kept hoping there was some misunderstanding but when we finally sat down with the doctor and she gave us the news....we were devastated. Our baby was going to be born with Hypoplastic Left Heart Syndrome (HLHS). HLHS affects 1 in 50,000 babies and is the most severe Congenital Heart Defect (CHD). In HLHS, the left side of the heart is either severely underdeveloped or non-existent and is 100% fatal without intervention. In our case, one chamber was completely missing, the other was so tiny it was useless and there was significant narrowing in the veins. We were given three options: late term abortion (only done in 2 states after 24 weeks pregnant--not ever a real option for us); compassionate care (let the baby die of natural causes within the first week of life); or a series of there open heart surgeries designed to redirect the blood flow throughout the body. After having an amniocentisis done to rule out any chromosomal deficiencies that would make the baby ineligible for the surgeries, we decided the only real option for us was the three part surgeries.

The day the baby's heart condition was diagnosed, naming her became our top priority. All the names we had been considering just felt inadequate now. We wanted her to have a name with strength and power to it and decided on Faith Margaret. Faith to give her strength, Margaret after my mother, grandmother, and great-grandmother. It was the perfect name for our little warrior.

Knowing our daughter was going to have a bumpy road ahead of her changed the rest of my pregnancy. I was scared of everything. I would buy an outfit, then panic and not do anything for days after. I was so afraid we were going to lose our little girl before we even got to meet her. I couldn't bring myself to set up a nursery but had a baby shower bother before and after she was born (one before as proof of our belief our little girl was going to be ok, one after her first surgery as a celebration of how well she was doing). I would cry for no reason and wanted to keep her inside of me forever, where she was healthy and thriving. We had to move to New York City two weeks before Faith was scheduled to be induced to ensure that she would be born where we wanted her to be rather than the local hospital. Everything I had planned for went out the window when Faith's heart was discovered.

I was admitted to the hospital on Sunday, September 28 and induced for delivery on Monday. Faith, however, had plans of her own and was ultimately born on Tuesday, September 30, 2008 by c-section. We didn't get to hold her, though they did take pictures of her before whisking her away to the NICU to be hooked up to different machines. My husband got to see her that afternoon but they wouldn't let me go to her until almost 12 hours later. By this point I was in full fledge panic and all I wanted was to see my little girl for the first time.

We didn't get to hold Faith until she was three days old because of all the wires and things she was hooked up to but spent hours at her bedside, talking to her and touching her. She had her first surgery when she was 6 days old (the Norwood). This surgery put in a temporary shunt to hold open the PDA in her heart until she was big enough for the second surgery. The surgery went well but that night, fluid started building up in her chest and Faith's oxygen levels dropped causing her to crash and have her chest reopened. We rushed back to the hospital at 3 AM but by the time we got there, she was stable. Faith's chest was open for the next couple days while her body adjusted. She finally was able to come home after three long weeks in the NICU, just in time for Halloween.
Faith thrived at home. She wouldn't take a bottle and had to be tube fed but was such a happy little baby. She had her second open heart surgery on February 12, 2009 and had no major issues. The Glenn operation removes the shunt and redirects the blood flow in the top half of her body. We were home in 2 weeks and Faith bounced back immediately at home. She continued to thrive, meeting all milestones and making us happier than we have ever been.

On July 21, 2009, Faith went back to Columbia for a catherization. Things did not go well. They found that her right pulmonary veins were very narrow and didn't give us much hope. For the first time in her life, we had to face the very real possibility we would lose our little girl. The doctors were grim, giving her at best 50/50 odds of having the Fontan surgery but they really didn't have a plan as to how to treat the veins other than to pray they grew. We were devastated but were not going to give up on the love of our lives.

With the help of our pediatrician and cardiologist, we found out Boston Children's Hospital had an entire department devoted to kids like Faith. Armed with our parents, my husband and I took Faith up to Boston in December 2009 for a variety of tests. When we met with the doctor, she said Faith had Pulmonary Vein Stenosis. Pulmonary Vein Stenosis is an extremely rare condition with little research done on it. Cells grow within the vein and stop blood from being able to flow from the heart to the lungs. A lung scan showed that Faith was getting less than 1% blood flow to her right lung and there was a very real chance of her losing use of that lung. We were scared but the doctors were very confident that putting Faith on an experimental chemotherapy called Cleevac could stop the stenosis. Like cancer, cells were growing where they shouldn't be and the Gleevac was targeted to destroy these unwanted cells. Faith had a cath done on December 21, 2009 to see if she'd be eligible for a surgery that would restore use of her right lung. We were the only people rooting for Christmas in the ICU because it would mean Faith would be eligible for surgery. The cath was a success and Faith had her third open heart surgery on December 23, 2009. This surgery was successful, we were thrilled! We spent a week and a half in the hospital after this surgery and took Faith home, armed with Gleevac and a plan. We were so confident this medicine was going to save our little girl.
2010 was a year filled with hospital visits for us. Once a month my mom and I would take Faith up to Boston for a sedated echo and lung scan and to evaluate the effectiveness of the Gleevac. Things were overall, positive. Faith was responding to the medicine and her stenosis was becoming manageable. She had two caths during the year, both of which were successful and Faith continued to amaze us in every way. She was such a talker! She had more words than any other two year old I've ever met and LOVED to snuggle. she was a late walker and always preferred to be carried but she could do  it and would get this little devil grin each time she succeeded.

After Halloween, things began to change. Faith began to retain fluid in her face and stomach. We asked all of her doctors about it but no one seemed concerned or have any thoughts on what was causing it. In early December 2010, her doctor decided another cath was in order to see if they could find out what was going on with the fluid. We scheduled the cath for January 3, 2011.

On Saturday, December 18, Faith started randomly screaming and complaining her tummy hurt. Her stomach was very large and distended. She would wake up in the middle of the night screaming but I would go in and giver her a drink and rub her tummy and she'd go back to sleep immediately. On Tuesday, both Faith and I were exhausted so I called the pediatrician, cardiologist, and GI doctors. Her pediatrician finally got back to me late that evening and suggested I take her to the Emergency Room at Yale-New Haven to rule out an intestinal blockage. After a few hours in the ER, we were discharged saying to give her Maalox.
Wednesday, Faith was very sleepy but I thought it was just because she was so exhausted. No one had been getting much sleep so I thought it was just catching up with her. Her pediatrician called around 3 to see how things were going and I said they were the same, Faith was still screaming, still complaining. He suggested I bring her in to see him at 5:15. At 4:45, my mom and I got ready to go. Faith was fine, she was talking, acting like a sleepier version of Faith but nothing major.

Something happened on the ride over to the doctor's office. I don't know what. She was grunting in the car but I couldn't see her because it was dark out. We got into the lobby and she didn't look right. I was so scared. Her eyes were rolled back and she was nonresponsive to me. I though she'd had a stroke and we quickly hurried upstairs to the office. When we got in the office, she seemed to snap out of it a bit and cried when I got her udnressed, sat on the scale on her own. I started to think maybe I'd imagined it. The nurse left us and almost immediately Faith's back gave out and she started turning blue. My mom ran and got the doctor and they came in and started working on her. I was holding her when all of a sudden she stopped breathing and I felt her little soul leave her body. They kicked me out of the room to work on her while they were waiting for the ambulance. I went to my mom but I knew in my heart she was gone. It is a feeling I can't describe other than to say I literally felt her leave me, I knew she wasn't coming back. We were rushed to the ER and they worked on her for over an hour before it was time to let her go.

Our world has been turned upside down since December 22, 2010 when we lost our little princess. Nothing is the same without her here. We are so blessed to call ourselves Faith's parents and consider ourselves lucky to have known and loved her. Being on the CHD roller coaster has had its ups and downs but all in all, we are better people sicne she was here and we wouldn't trade her for the world. We had our second child, a heart healthy baby girl on June 21, 2011. Hope Margaret looks just like her big sister and has so many of Faith's personality traits. We always said that if she has half the personality and spunk of Faith, we will be twice blessed as the luckiest parents there ever were and so far, that's proving true.

Faithy truly loved the world and the world loved Faithy but we know she danced with the angels now and lives forever in our hearts.

Faith's story touches my heart, she went to live with the Angels the day after Kayden's last birthday on Earth. As I was celebrating my baby's birthday praying he'd still be here a year later, another family had no idea they were going to have to let there baby go the following day. Although I knew in 2010 the possibilities, I knew there were families out there who were in the position. This just makes me so sad! Faith had to of been Kayden's little Angel while he continued his fight to July 2011 ♥

1 comment:

  1. Awwww This Is So Sad :( RIP Little Angel :( Fly High & Have Fun With Kayden :(