We're fundraising on behalf of Boston Children's Hospital because they have completed our family in a way no one else could. We received a call 8 days after our 20 week ultrasound that the doctor thought there was something was wrong with the baby’s heart. We were told that we needed to be seen at a Hospital in Boston ASAP for a level 2 ultrasound. We had an appointment in Boston within days. An ultrasound was performed and a heart defect was detected. The type of defect is often associated with Downs Syndrome and an amniocentisis was recommended. We went ahead with it and met with a geneticist. We were sent out to wait for a call with the results of the amnio. We received a call a few days before Christmas that the baby did not have Downs. Fetal echoes, second opinions, ultrasounds took place over the next few months. We were trying to put the pieces of this complex puzzle together. Little by little we would get more information as time went on. Each time we had an appointment they would find something else wrong with her heart. During a second opinion at Mass General it was suggested that the baby may have Heterotaxy Syndrome. The dr had found an interrupted IVC which usually goes hand in hand with Heterotaxy. We were sent back to the original hospital and they assured us she did not have Heterotaxy. Around our 7 month ultrasound the doctor said everything looks like it’s in the right place but wanted to get the other doctor for a 2nd opinion. Finally…good news. The other doctor came in and said “everything is on the right side”. We asked “right as in correct?” and she said, “no. right as on the right side of her body”. We had no idea what that would mean for our baby. The rest of the pregnancy was weekly ultrasounds, non stress tests and more testing. The plan was that she would be born and go home and grow for 3-4 months before she would have her first heart surgery.
We had a c-section planned for May 4, 2010 at 10:30am. The OR was filled with all of the help that Molly would need. She was born at 10:35 weight 10 lbs 5 oz and was 21” long, and was screaming which was great. We had time for one picture before they took her to the NICU to stabilize her. She was intubated immediately because she wasn’t able to breathe on her own. It was decided that she was too sick and needed to be transferred to Boston Children’s Hospital the next day. The following days were filled with tests to determine the structure of her heart and her anatomy. Her complete diagnosis was an ASD, VSD, Common AV Canal Defect, Interrupted IVC, Dextrocardia, TAPVR. Her liver is midline, stomach is on the right side, Polysplenia, malrotated intestines & Heterotaxy Syndrome. They also tried to find the right mix of medications that she would need to remain stable. When she was a few days old they tried to remove her breathing tube but she didn’t tolerate it and it had to go back in. It was then determined that she needed her first heart surgery sooner rather than later. When she was 8 days old she had her first heart surgery that would hopefully buy us time before her big repair. That was not the case. It didn’t do anything for her. She was still really sick. Over the next 6 weeks we tried to get her to gain weight while remaining stable. This was a huge challenge because she was so delicate. When she was 6 weeks old she had her first open heart surgery. It was an 8 hour procedure and she had to be placed on bypass early because she was sick and wasn’t tolerating the procedure. The next week was awful. Her chest was left open for 8 days because of swelling. She was even more sick after the procedure than she was before. Two weeks later she had to go back to the OR to have her mitral valve fixed because one of the sutures had given way. She also had a pacemaker implanted. This time she was able to come up from the OR with her chest closed but was still intubated. She had chest tubes for 6 weeks because she developed chylous effusions. The chest tubes would dump out 500 ccs of fluid per day and they couldn’t figure out why. During this time she also developed a blood infection and everyone was afraid we were going to lose her. During the majority of this time she was in a medically induced coma. By the time she was 5 months old she had never been able to breathe on her own and we had to make the decision to have a trach placed. This would allow her to come off of the ventilator and come home. Before she was going to be discharged we had one more surgery to take care of for her intestines. We had made the decision with her medical team that she needed to be home and needed to be given the chance to be a baby. We knew the risks and warning signs so we decided to have a g tube placed since she had never eaten by mouth. For the last month that she was in the hospital we had learned to care for her…how to do trach care, g tube care, work her ventilator and oxygen, order her supplies, how to administer her 22 different medications.
On January 4, 2011, we were finally bringing our baby home for the first time after 8 months in the cardiac ICU. This isn’t how we imagined taking our baby home but it didn’t matter. We were so excited to finally be a family. Our front door had become like a revolving door with home care nursing, supplies, homecare respiratory doctor, early intervention, weekly appointments. Three months after being home it was determined that she no longer needed the ventilator or oxygen and 5 months after that her trach was removed. The hole in her neck was supposed to close up on it’s own and it did. One day she coughed and it opened again so she had to have it surgically closed. Any procedure is risky for her, no matter how big or small but she handled it well. When she was 3 years old her g tube was removed. Eating by mouth has always been a challenge or her but we were able to transition from tube feeds to oral feeds and hadn’t used her tube for a year so it was time for it to come out.
Over the last almost 8 years she has worked so hard. She has overcome withdrawals from all of the medication she was on. She learned to eat by mouth and finally started gaining weight and growing. She still has a pacemaker but that doesn’t stop her and most days we don’t even realize it’s there until it’s time for a cardiology appointment. She has successfully weaned off all of her 22 medications. We only see cardiology once a year now and her heart has been stable for a long time. She does still have some mild leaking on one of her valves but she tolerates it and we just monitor it with annual echocardiograms. She also has an eye condition called A Pattern Esotropia and wears glasses. None of that matters to her because she loves doctors appointments, espeically if they are going to take her blood pressure. If they don't she usually convinces them to do it anyway. Doesn't matter if it is just for an eye exam! She has developmental delays from her hospitalizations and has been in speech, OT & PT since she was 10 months old but she loves it. She loves music, dancing, reading, shopping, Disney World and Target is her favorite store. She is in the 2nd grade and loves it. She is just like any other kid her age and enjoys all of the things they do. Not much comes easy to her but that doesn't stop her from trying her best at everything she does. There was a time when we didn’t know if she would ever have the opportunity to work towards anything and we couldn’t be happier with where she is today. She is living proof that miracles do happen. On May 4th we will celebrate her 9th birthday and she is very excited!