Sarah wakes up with a runny nose. Daniel and I decide to cancel all plans to go outside today. We were going to take Sarah to the library and aquarium for her birthday. Instead we decide to eat lunch in the hotel and spend the afternoon watching movies.
I email Dr. Del Nido and Dr. Newburger to let them know Sarah is excreting clear mucous. I ask if we need to discuss a back up plan in the event the repair doesn’t work. Something I hadn’t really considered, until Jeff ( a man who found us through the blog) shared his daughter Olivia’s story with me.
Dr. Del Nido gets right back to me. He promises, tomorrow, we will discuss the surgery in detail as well as all back up plans.
Sarah and Daniel cozy up on the couch to watch Dragon Heart.
7:00 am - Daniel wakes up early to decorate the room with Happy Birthday balloons and streamers the way he does every year on the girls' birthdays. It's a tradition.
The hotel slides a note under the door letting us know they've made special arrangements for Sarah to decorate her own cupcakes and have the ice cream man visit this afternoon. (Usually this is only offered on the weekends but they want to make every minute special for Sarah before her surgery) I am touched beyond words.
From the minute Sarah wakes up all I hear is, “Mommy when are we going to be there?” She’s talking about the hotel. The Four Seasons. Her favorite place in the world. Two years ago I worked on a film in Boston called “Mall Cop.” I lived at The Four Seasons for seven months. It was our home. “The Suite Life of Rachel and Sarah.”
The plan is to leave New York at 1:00 pm.
11:00 am. My sister Danielle comes over with matching good luck bracelets and a bottle of xanax. I never took xanax in my life. Until 4 weeks ago. The bracelets are ruby red beads with a gold hand of god. Sarah wears hers for less then a minute. Danielle and I spend the next hour combing the apartment looking for it.
12 Noon Daniel pulls out a small carry on bag. The same small carry on bag he pulls out for every trip no matter where we’re going and how long we’re staying. “You’re going to pack light. Right?”
By 2:00 pm Daniel is schlepping the same four large suitcases down the elevator he schleps on every trip – no matter where we’re going and how long we’re staying.
“Mommy, when are we going to be there?’
We stop at Nana’s in Connecticut for lunch. Sarah is in heaven. Nana makes her a beautiful pink Barbie cake. Sarah blows out the candles on what she calls her “fake birthday.” Tomorrow is the real celebration.
We get back in the car at 7:00 pm. Sarah is the happiest I’ve ever seen her. She loves the one on one attention. Rachel is in New York with Aunt DeeAnn. Sarah wears Rachel's clothes, sits in Rachel’s car seat and plays with Rachel’s things.
Every thirty minutes Sarah tells Daniel and I she loves us.
“When are we going to be there.”
Sarah knows she’s going to Boston to have surgery.
She knows her heart beats too fast.
She knows she has to have it fixed.
No matter how many times we explain it to her:
Sarah has NO idea what that means.
We arrive at The Four Seasons. Sarah races into the lobby. She is so happy to be here!!!!
It’s a crapshoot. To quarantine or not to quarantine. Monday – 10 days out - I write Dr. Newbuger. She gets back to me immediately.
The answer to your question boils down to a risk/benefit question. The chances of Sarah’s catching a new cold right now are quite low, since her immunity is likely to be higher after having just recovered from a respiratory infection. If your absence would be a stress to your husband and to Rachel, I would probably stay in NYC. If it isn’t a stress to be away at Sag Harbor, the proposed “quarantine” adds a small amount of protection against new infections.
So….my answer is a definite maybe, as we say in my family – a tiny advantage re: infections to be in quarantine, but not worth it if it creates too much tumult in the family.
Daniel and I go back and forth. His instinct is to err on the side of caution. He leaves the decision up to me. I roll the dice. We stay in the city.
Friday – 5 days out. Sarah’s nose looks clean for the first time in months. I breathe a sigh of relief. I tell myself. It’s going to be ok. After going through the five stages – denial, anger, bargaining, depression…. I arrive at acceptance. I think about the teenage athletes who died last week. My fear of sending Sarah into surgery has been replaced by a bigger FEAR: The fear of Sarah NOT having surgery.
Boston Children’s posts a chart on their web site with success/survival rates for each cardiac procedure. From 2006 – 2008 they preformed 91 mitral valve plastys with a 99% survival rate. In 2009 they performed 51 mitral plastys with a 98% survival rate. On February 15, I ask Dr. Del Nido… “Why isn’t it a hundred percent? Why did those children die?”
Dr. Del Nido’s voice is calm and patient. “They went into surgery with issues… the heart muscle was damaged… Sarah’s heart is strong… She is healthy… she has no genetic disorders.”
I flash on the article I read in New York magazine. Sometimes the heart doesn’t start back up after bypass. There are tricks they can do to get it started. Sometimes they have to cut their losses.
I persist. “You’re telling me Sarah’s heart will definitely start back up.” Dr. Del Nido doesn’t hesitate. “Yes.”
The last question before leaving Dr. Del Nido’s office is WHEN to schedule the surgery. Based on previous consultations, Daniel and I were operating under the assumption this is an elective procedure. We could schedule at our convenience in the next 6 months.
I am a freelance Producer/Production manager. I work on movies and TV shows. I haven’t worked since May 2010. I turned a job down last June, for the first time in my career, to spend the summer with Rachel and Sarah in Sag Harbor. We had a wonderful summer.
By November I am desperate to go back to work. I reach out to my contacts. I want a TV Pilot. They assure me something will come up.
I get the call from NBC – one of my favorite companies – on February 10. They have a pilot coming to New York. Am I available? Feb 21 - beginning of May.
Daniel and I discuss it. It’s perfect. I do the Pilot. We schedule Sarah’s surgery in May giving Sarah enough time to recuperate that if the show gets picked up (I know it will get picked up – It’s an amazing script) I’m available to work on the series.
February 17 - I check back with Dr Newburger and. Dr. Del Nido to officially get the green light to take the job. I am shocked and surprised by what I hear back.
There is a small RISK to waiting. They want to send Sarah into surgery under optimal conditions. NOW.
Friday 8:00 am – 5 days out. To quarantine or not to quarantine. It’s a crap shoot. I rolled the dice. Sarah is healthy. I breathe a sigh of relief.
We plan to celebrate Sarah’s birthday on Sunday with immediate family. Grandma, Nana, Aunt DeeAnn and Aunt Danielle. Sarah wakes up every day asking, “Mommy, is today my special day?”
Friday 5:30 pm. I pick Rachel up from hip-hop dance. We ride down the elevator. She sneezes. She sneezes again. I ask her if she is ok. No. Mommy I have a cold. A cold. When did you get a cold? Today at school.
I rolled the dice. It was a crap shoot.
My Mom lives 45 minutes away on Long Island. It’s Friday night. Rush hour. I call Daniel. He was up at 5 and at a business lunch all afternoon. He’s too exhausted to drive.
I tell Rachel to pack her things. I’m taking her to Grandmas.
Daniel and I have a quick conversation before I leave. This is the last time the girls will see each other before the surgery. Should we make a big deal? We decide not. They say a quick and hurried goodbye. No hugs. No kisses. Rachel is contagious. Have to get her out of there.
It was a crapshoot. To quarantine or not to quarantine. I rolled the dice.
We cancel Sunday’s party. We decide to drive up to Boston on Sunday. We’ll stop at Nana’s on the way. Nana will make it a special day special for Sarah.
SATURDAY MORNING – 4 days out. Sarah wakes up OK. Maybe we’ll get lucky.
I heard today on Good Morning America that a third young athlete collapsed and died this week. My heart goes out to the parents of those beautiful teenagers. I can't imagine what they are going through... Like those athletes, Sarah looks perfect. So PERFECT that when I was told, last June, by the Doctor that she heard a slight murmur, I dismissed it. Rachel had a murmur. It was nothing. Daniel and I agreed we would get it checked but we were pretty certain it was nothing.
At her regular physical, Sarah barely let the stethoscope touch her chest before karate kicking the pediatrician across the room. Sarah had been phobic about Doctors her whole life. Daniel suggested he take her to the cardiologist alone. He stood a much better chance of getting her to play the "tough chic" if I wasn't around. I agreed.
"What happened? How did it go?" I said. "She refused to let him touch her. Doctor tried everything. " Daniel said. "They're going to have to sedate her in the hospital order to do the echo." I remember thinking, shit, we're leaving in a few days to spend the summer in the Hamptons. She's PERFECT. We'll get her tested when I get back in September.
The bills started to come mid September. Village Cardiologists. Insurance covered 80 percent of Sarah's June visit. We owed $20. For some reason I didn't pay it. I always pay the bills on time. I have a phobia about late payments. But every month another bill would come from Village Cardiologists and every month I would look at it and put it aside. We were so over due that by December they started coming in red ink.
We never took Sarah back for that check-up. I paid the bill in January.
Two weeks later, Sarah told us her heart was beating too fast. She was perfect. We didn't think much of it.
One week after that, Sarah said her heart was beating fast again. Daniel put his hand on her chest. It felt like a jackhammer pounding away at the inside of her chest. We were concerned. We had her sleep with us that night.
She woke up the next morning and seemed PERFECT. We went on with our lives.
The following week Rachel got annoyed. Sarah was pulling the "my heart's beating too fast" routine pretty regularly now and it was working. She slept in our bed most nights.
Next morning Daniel looked at me and said. Make the appointment. I'll take her.
The morning of Sarah's appointment, Rachel, Sarah and I had been up the night before with a stomach flu. Daniel texted me at 2:00 PM.
How is she?
She seems ok.
Are you positive? I need her in a good place for this.
She isn’t complaining.
Ask her if she is up for it?
She got excited when I told her you were taking her for a special day- first the doctor and then for a little toy.
Something inside Sarah had changed. She couldn't wait for Daniel to take her to the Doctor.
We decided to keep Sarah home from school this week. I guess we needed to feel like we were doing something to prevent her from getting sick. Last night I bought hand sanitizer and baby wipes and placed them all over the apartment. Rachel looked at me like I was crazy. Of course, Sarah's nose started running this morning.
I just received this beautiful note from one of the Mom's in Sarah's class...
I picked D... up from school today, and he said that Sarah was not there again, and he misses her. (he has told me everyday since monday that she is out). I Hope everything is ok with Sarah. D... also did say something about surgery last week that Sarah was talking about. I am very concerned for our friend Sarah, and D... misses her dearly. I hope everything is ok with you and your family. Please let me know if there is anything I can do. I truly hope Sarah is ok, and whatever surgery she is having, I hope her bright smile and infectious spirit makes everything all better. Sarah is always a big joy to see when I go to the classroom for "class mom" activities. Again, I hope everything is ok, and Sarah feels better soon.
Surgery is one week from tomorrow. Everything matters now. Sarah must be in perfect health with no issues. How does one keep a five year old in perfect health? For a minute we considered quarantining her in Sag Harbor with me, but decided the emotional toll of being away from Daniel and Rachel was too much. Rachel is starting to ask about the surgery. She wants to know exactly WHAT they plan to do to her sister. Child Life Specialist says be as truthful as possible. Worse mistake parents can make is lie. Kids should never feel tricked or betrayed. It seems obvious... yet... Sarah felt betrayed by a throat culture yesterday... xxxxooo
When Sarah was diagnosed I was instantly flooded with memories of father. For the last 6 weeks, I was back in that hospital room reliving the Doctor telling me "He didn't make it."
I was sixteen, in my parents’ bathroom getting ready for school. My parent’s were in their bedroom, talking, just outside the door. My father was trying on a suit he hadn’t been able to fit into for years. He had recently gone on a diet and lost twenty pounds. I remember applying eyeliner, thinking: SAY SOMETHING. SAY SOMETHING. TELL HIM HE LOOKS GOOD. I started to shake. Every fiber in my being resisted that voice in my head.
Apparently it's common not being able to tell those closest to you how you feel. I recently saw Oprah give an interview to Barbara Walters. The topic turned to her best friend Gail King. Oprah said: She is the mother she never had. The sister she always wanted. The best friend everyone deserves. Then Oprah started crying. Damn. She swore to herself she wasn’t going to cry. Barbara asked, “Why are you crying?” Oprah said: “Probably because I never told her that.”
I was angry. All my friends were going on a school ski trip that weeeknd. It cost one hundred dollars. I begged my father to let me go. He said no. We couldn’t afford it. That night at dinner I told my father I HATED him. He sent me straight to bed. I cried myself to sleep.
The next morning my father came into my room and took a crumpled five dollar bill out of his pocket. He reached his hand towards me. I crossed my arms and refused to look at him. He told me he loved me. I said nothing. He waited a minute and said it again. I LOVE YOU. I turned away. He walked out of my room.
I never saw my father again. He died of a massive coronary later that afternoon. Today is the anniversary of his death.
We spent the afternoon with one of Sarah's best girlfriends, Eden today. Alice and I took the girls to paint pottery at Color Me Mine. Sarah painted a butterfly for me and a Lizard for Daniel. Eden painted two Ariel sculptures: one for Sarah, for her birthday. The girls were were born 6 days apart. I gave birth to Sarah four weeks early, on Eden's due date, March 14. They've spent every birthday together since. This year Sarah will be traveling to Boston on her birthday. Eden will most likely have her party while Sarah is in the hospital. Everything about today was significant to me. It is the anniversary of my father's death. He died of a massive heart attack 30 years ago. Sarah and Eden said goodbye the way they always do. They hugged each other. It was pouring rain. I knew it would be the last time they saw each other before the surgery. My heart sank and my eyes filled with tears. Thank god it was raining.
Up all night. I seemed to have lost my confidence again. The excitement and relief I felt on Friday has faded. I’m back to being scared. Powerless. Disbelieving. In six days the entire focus of my life has changed. I seem to be able to think of nothing else. All I want is to be with Sarah. Hold her. Kiss her. Make her ok.
I’ve slept with Sarah every night since Wednesday. She’s getting used to it. So am I. There’s a part of my brain hoping there’s been a mistake and surgery isn’t going to be necessary. 8:50 am. I call the Cardiologist who diagnosed her last Wednesday, Dr. Matthew Martinez. I want to let him know about my meeting with Mt. Sinai’s Director of Mitral Valver repair, Dr. David Adams. I tell him Dr. Adams was 100 percent confident Sarah’s valve can be repaired. It was an extraordinary meeting. I describe it as a religious experience. He tells me that is the passion I should be looking for when Daniel and I finally make our decision about who will perform Sarah’s surgery. Dr. Martinez spends 30 minutes on the phone with me. His voice is soothing. Calm. Patient. He understands what I am going through and he does his best to reassure me. He’s going to help us find the best possible fit for Sarah. He is unfamiliar with the Mt. Sinai surgical team, but he knows Dr. Ira Parness, who he says, is an excellent Pediatric Cardiologist. We agree it’s best to focus on the good news. Sarah’s systolic function is good. She is asymptomatic. She is otherwise healthy. I brace for the next question. What if… is there a possibility… can something can go wrong? Dr. Martinez is quick to tell me that while the risks are low, this is major surgery. I think back to my Google search last night. Dr. Parness, referring to another little girl, was quoted as saying “if three in one hundred patients die…. we better be damn sure sending her into surgery is the right thing. If something happens will any of us be able to live with the choice we made…” My mind races. Three in one hundred, Three in one hundred…. All of a sudden, three in one hundred, sounds high to me. I’m stuck on the number three. Is three “ low risk?” I remember when I found out I was pregnant with Sarah. Dr. Abramson lead me into his office and pulled out the “old lady” literature. Now that you are over…, (he almost couldn’t say 40)… well the chances of having a baby with down syndrome are one in Fifty. One in Fifty. Is that high? Rest assured, he said, everyone in Vegas would take the bet.
I ask Dr. Martinez, how on earth do we weigh the risks. He said they weigh the risk of damage to the heart against the risk of surgery. If they have a high level of confidence that surgery will fix the problem they will suggest we go ahead sometime within the year. But, because they have no reference for how fast this disease has progressed, it’s hard to know if her heart has been functioning this way for the last 4 years, or whether it has gotten progressively worse over the last 6 months. If in three months the electrocardiogram shows further damage, the need for surgery would become immediate.
My need to find the right surgeon, the one who is perfect for Sarah, starts to consume me. How many valve repairs has Dr. Mosca performed? Dr. Mosca is the surgeon Dr. Martinez refers his patients to. He is the head of Pediatric Cardiology at NYU. Tonight Martinez will meet with Mosca at a medical conference to present Sarah’s case. Martinez says he said he doesn’t know how many valve repairs Mosca has performed. I remind him Dr. Adams performs twelve a week. We talk about getting three opinions. He tells me I should also see Dr. Emile Bacha at Columbia Prsebytarian. He is going to call me tonight after he meets Mosca.