Charley's Angels

From Charlotte's Mommy, Jessica:

"2017 was a rollercoaster full of highs and lows, and knots in our stomach.  Not many know all the details as it was a scarier time for us than we would have liked, but we are on to 2018 with hope in our hearts and an immense love for our daughter, Charlotte. Our journey, however, is not over. It has just barely begun... 

In early 2017 we began trying to get pregnant. We were fortunate enough to be successful and then, by complete surprise, found out we were expecting identical twin girls. They were due to be born around November 13, 2017. This was scary, and exciting, at the same time. 

However, at about 4 months pregnant, we found out that one of our girls had a severe heart defect that would require multiple open-heart surgeries upon birth. This condition is known as Hypoplastic Left Heart Syndrome (HLHS). First, however, we needed her to make it to her birth as she also had a little passageway in her heart, known as the ASD,  that needed to stay open in order for her to grow and to live. It was much smaller than it should have been and there was a fear that it would close as time went on. 

This issue alone made it a scary pregnancy littered with multiple doctor appointments with several different doctors. Every appointment we hoped and prayed that “Baby B” as we fondly called her still had that little passageway open to help her to live to birth. 

“Baby A”, on the other hand, appeared to be a healthy baby but she, being an identical twin, shared a placenta with her sister. This too was a concern as we were told that if one twin passed away, it may affect the other.  

Luckily, our “Baby B” who we now know as Charlotte, was a strong little fighter and kept that passage way open to make it to birth. However, on September 13, 2017, for a reason that is still unknown, our “Baby A” didn’t have a heartbeat. We don’t know why and we don’t know when, but she passed away. 

Five days later, I went into labor; approximately two months early. While we had anticipated the twins would come early (as twins usually do), this was clearly much earlier than expected. Both girls had to be delivered, but Charlotte came out like a champ. 

Our surviving daughter Charlotte was born on September 18, 2017; at 32 weeks old. 

This made her already severe heart condition all the more serious, complicated, and dangerous to try to fix. 

So what is HLHS? This is important as most people have never heard of it as we had not until we had no choice but to know what it was. In layman terms, only half of Charlotte's heart is functioning. While the normal heart has two functioning ventricles (the left and the right), Charlotte’s left ventricle never formed.  Each ventricle has a purpose and the left is used to pump oxygenated blood through the body. Without it, you cannot live.

This condition was once inoperable  as modern medicine  did not have a remedy. However, in the past 40 years they have continued to work towards remedying this problem the best they can.  It is the most severe heart defect there is, and the “remedy” is complicated and not always successful. But we are grateful that a possible remedy exists to try and save our little girl. 

The typical plan of care includes three major open-heart surgeries. The first takes place the first week of life (the Norwood surgery), the second takes place at six months of age (the Glenn surgery) and the last is set to take place at 3-4 years of age (the Fontan surgery). Each surgery is meant to “rig” the heart in a way where half of the heart is able to do the work of a normal fully functioning heart. This is a huge change in the body's physiology, and thus the surgeries must be done in stages. 

Since Charlotte was born two full months early, at just a mere 3.1 pounds, she could not immediately have the Norwood surgery as she was much too small and underdeveloped for such a large and dangerous operation. Instead, she was to undergo an open-chest surgery to place bands on her pulmonary arteries to help control the blood flow to her lungs. 

This was meant to "hold her over" until she was big enough for her Norwood surgery. With this also came the need for a life saving medication, Prostaglandin, to be constantly pumped into her body at all times.  This medicine would keep a different passageway in her heart, known as the "PDA" open so blood could flow to her lungs. 

 Her surgeon, Dr. Redmond Burke,  performed this open-chest surgery when she was just 3 days old, on September 21, 2018. He took his magical hands and opened up our 3.1 pound little Charlotte and helped keep her heart pumping. It was then time to wait and pray that Charlotte remained stable and free of complication while she got big enough for the real surgery she needed to save her life. 

However, complicating the matter, while waiting to gain weight over the past five months, that little passageway that was a concern in utero (the ASD) was continuously  trying to close and required multiple serious procedures to keep it open. The most serious taking place when Charlotte was just two weeks old. This was her next big hurdle. At just two weeks old, Charlotte underwent a septostomy to open up this little passageway in her heart. This passageway, known as the atrial septum or "ASD", also needed to be kept open in order for her blood to have a way to get to where it needs to go.  

This procedure was a success. However, unfortuantely, just two months later, on November 28, 2018 she had to undergo an angioplasty of the heart to open up this passageway again. It had once again begun to close. Despite this second procedure also having been successful, it did not last. Thus, this angioplasty procedure had to be done again for a third time in late February of 2018.

At this time, Charlotte is now almost 6 months old. She is a little over 8 and a 1/2 pounds and has never lived anywhere other than the Cardiac Intensive Care unit at Nicklaus Children's Hospital. She went directly from birth to this hospital and we have lived here with her ever since. 

However, we have just recently met a milestone in this long journey. On March 8, 2018, Charlotte underwent her first open-heart surgery; the Norwood surgery. She is still newly in recovery with a mountain of medications, sedation, intubation and a bunch of chest tubes but the Doctors think she is doing great so far. While there is a long recovery to go we believe strongly in our fierce and feisty Charlotte. Throughout this entire process she has behaved like an absolute rock star and is truly amazing! 

Our journey however is far from over. We now have to wait for her to fully recover from the Norwood surgery, continue to gain weight, and successfully eat by mouth (as she has been tube fed most of the time here in the hospital). Only then will we go home for what they call the "interstage" period until her next surgery. 

We are hopeful that we will be able to have a home health nurse with us throughout this period as it can be a very dangerous and potentially unstable time due to the shunt placed in Charlotte's heart during the Norwood surgery. This instability should subside after she undergoes her second open-heart surgery (the Glenn) when that shunt is no longer needed. 

The Surgeon and his Team are hopeful that Charlotte can have that second open heart surgery sometime between July-September 2018, with Charotte's  third open heart surgery (the Fontan)  to be necessary when she is between 3-4 years of age. 

While Marc has broken himself into two in order to work and sleep most nights at the hospital, I have not been able to work as I have never left Charlotte alone.  My unpaid maternity leave has long expired and Nicklaus Children’s Hospital is, has been and continues to be our home.  

While we are grateful that we are at a Hospital that provides us the opportunity to live in the same room as our Daughter, this has unfortunately created and will continue to create an enromous financial burden for us.  Just in the first five months of this long journey, we have already received hefty medical bills from numerous doctors as Charlotte has to be seen by several different specialists on a constant basis. These bills have already proven to be unmanageable, even with insurance. 

My inability to work for the indefinite future, coupled with medical bills that have already begun to pile up, and  our need for a home health nurse during Charlotte's  dangerous "interstage" period at home; are all concerns that place us in the position to ask for your help. 

This page has been set up to raise funding to aid with the cost of that home health nurse to assist with Charlotte's interstage care and to aid with Charlotte’s medical and health care expenses that are mounting and will continue to mount. 

We so much appreciate everyone’s love, prayers and support. We could not do this without you! 

Thank you for riding this rollercoaster with us and being one of #CharleysAngels.   We love you all."