Sarah is not happy at her first post op visit. No more poking and prodding. They have to remove a string from the bottom of her scar. Sarah won’t let them near her. Dr. Newburger looks at me. I’m close to collapse. She wants to speak with me alone.
She asks if I am OK. I’m not sure what’s happening. Tony Soprano and the ducks. Dr. Newburger says, “This is common. Triggered by being back in the hospital. The strength that got you through the past few months is gone.”
Sarah is given a clean bill of health.
Rachel asks Daniel if we can get back to our normal routine. He says, “You bet. “
We head back to New York.
Rachel and Sarah fight in the back seat of the car. Rachel’s had enough. Sarah gets more attention. Rachel cries. We love Sarah more then her.
Daniel plans a special father daughter day with Rachel.
Daniel tells Rachel to get dressed up. Rachel is thrilled. Where are we going? It’s a surprise!!!
Right before they leave Sarah starts throwing up. She lies on the floor in agony. Screaming. Her head hurts.
Rachel can’t wait to have her special day. She doesn’t know it but they are going to a Broadway show.
Sarah doesn’t stop throwing up. She is in terrible pain. She can’t hold liquids down. She’s limp as a noodle.
I call the pediatrician. We need to get Sarah to the ER immediately. She’s on diuretic medication and at risk for dehydration. Her electrolytes need to be checked. Needs a chest x-ray. It could be an infection due to surgery.
Daniel and Rachel are heading into the theater when Daniel sees my text. Instead of enjoying the show they jump in a cab and come home.
I email Dr. Adams. We are heading up to Mt. Sinai ER. Dr. Adams gets in touch with Mt. Sinai Pediatric Cardiac ICU team.
Sarah is given a shot of Zofran. She is so sick she barely protests. The Zofran works. She slowly tolerates liquids and miraculously comes to life.
They take wonderful care of Sarah.
Rachel spends her special day watching 6 hours of Barbie movies in MT. Sinai Emergency Room.
We spend the week recovering in Boston. Daniel’s phone never stops. He goes back to New York for a few days to work. My girlfriend Lindsay comes up with her son Teddy. Sarah (5) adores Teddy (8). Teddy, of course, is mesmerized by Rachel (9). Sarah’s desperate to keep up with the big kids. Run, dance, swim. It’s torture holding her back. She stamps her foot. Cries. STOP treating me like a baby!!!
Enormous relief morphs into a touch of PTSD. I flash on the scene in the grocery store in the “The Hurt Locker.” How do you shop for cheerios when you’ve spent the last two years dismantling bombs in Iraq?
I am jumpy. Nervous. Stressed. Will Sarah fall and hurt her chest? Did I get the meds right last night? Did I over-dose her? Her scar got wet during yesterday’s bath. She has dark circles under her eyes. Is she eating enough healthy food?
I am grateful for simple moments. Cuddling on the bed with my two beautiful girls. Watching cartoons. Ordering Room service. Shopping for Hats on Newbury Street. Being WELL taken care of at the Hotel.
Today is Sarah’s first Post Op visit. Dr. Newburger told me it’s normal to feel anxious re-entering the hospital. I have butterflies in my stomach.
Tomorrow we go home, back to New York. We are leaving our cocoon. I have butterflies in my stomach.
I think back over the last two months. I am struck by the responses we got from people all over the world. Spain, Canada, Peru…. I am struck by the willingness of strangers to share intimate feelings. To share their own stories. To care so much about ours.
We received a beautiful letter from a father whose young daughter had open heart surgery too. He will also need valve surgery.
He writes, “ You have made it through the two darkest months of your lives. We know the stress. Things will improve in the coming weeks, months and years and the overpowering anxiety will fade… and so too will Sarah’s memories. There will be flashbacks and moments of worry in the future, however rest assured… the worst is behind you! I now have two warrior heroes to inspire me when the time comes for my valve surgery and I can only hope that I am half as brave as Olivia and Sarah!”
The hospital was triggering something in me I didn’t have hold of. I was anxious. Tense. Falling apart. Sarah wanted me to spend the night again. I couldn’t.
I went back to The Hotel with Rachel. It was the first time Rachel and I were alone in over a week. We ordered room service. Changed into our pajamas. Watched TV. HEAVEN!!!!
Sarah woke up Monday morning at 6:00 am. If her echo and x-ray looked good she could go home. She was so excited. She ate oreos for breakfast!!!!
The Doctors were amazed. Daniel was amazed. The long stringy leaflets, the abnormal gap, the thrush of blood running backwards…. Gone!
The repair was a success!
The x-ray looked great!
We went downstairs to the clinic so Dr. Newburger could officially release her. We had come full circle. On February 15 Sarah came to Boston Children’s Hospital with a very sick heart. On March 21 she said goodbye to the Doctors who saved her life.
Sarah was discharged at 1:00 PM.
It was snowing. Sarah didn’t want an umbrella. She stuck her tongue out to catch the big, wet flakes.
I just woke up! Could have slept two solid days. Had to force myself out of bed. Daniel stayed with Sarah again last night! All those years of working the graveyard shift at The Pierre Hotel, putting himself through law school, gave him super human stamina. Sarah's being stubborn again. Refusing to take her medicine... Rachel is on her way up with Aunt DeeAnn. Sarah's boyfriend Cyrus- on his way up as well. Sarah is concerned about her bandages - doesn't want Cyrus to see her this way. Yesterday she asked what happened to her. Why are there bandages on her chest and stomach. She listened carefully and thoughtfully. She understood.
We are sooo lucky to have a private room! Daniel and I are in awe over the care at Boston Children's Hospital. Best place on earth - if you have to be sick.
Dr. Del Nido instructs the nurses to remove the main draining tube – the tube that prevents liquid from swelling around Sarah’s heart. It extends through the muscle into her chest cavity. Removing it causes enormous pain. The nurse tries to give her Tylenol. Sarah clamps her mouth shut. Doesn’t want medicine. Wants the nurse to go away. Her voice is hoarse from the ventilator. She screams. Mommy why did you bring me here? Why did you bring me here to hurt me? Everyone keeps hurting me.
It doesn’t matter how many times we explain it. Doesn’t matter how often we reassure her. It doesn’t matter. It doesn’t matter.
The “miracle” – to Sarah – was a violation.
Sarah’s heart is very enlarged. It’s been working overtime her entire life. It no longer needs to pump that hard. Dr. Del Nido did an excellent repair. The muscle doesn’t know that yet. It wants to do what it always did. Medication is the only way to slow the pump down. The valve needs to heal. The sutures must take hold.
Blood pressure medication must be taken orally. Sarah clamps her mouth shut and hides under her blanket. Daniel and I talk to her. Softly. We make promises. Explain. Give her choices. Some control. It doesn’t matter. It doesn’t matter.
The “miracle” – to Sarah – was a violation.
We hold her down and force the syringe into her mouth. We have no choice. She screams, “Why did you bring me here? Everyone keeps hurting me.”
Daniel and I stare at Sarah. She sleeps peacefully. The swelling is gone. She looks incredibly beautiful.
Daniel walks me out of ICU. He offered to do the night shift again. I am extremely grateful.
After a rough night, Daniel slept about two hours - Sarah is OFF the ventilator. Awake and talking. It's important for her to move so her lungs stay healthy. Everything hurts but the pain in her chest is especially excruciating. She asks a lot of questions. Wants to know what they're doing and why? She's feisty. Dr. Newburger calls her a "wild woman." She's pumped full of diuretics so her next big job is to pee on the toilet.
I'm watching her sleep peacefully in a chair. The swelling in her face is going down. She looks like an angel.
Dr. Del Nido speaks with us immediately after surgery. He is confident. The valve is repaired. The echo looks great. I cry. The weight of the world lifts off my shoulders.
Daniel and I have lunch across the street. We have an hour to kill before Sarah is taken to ICU. We eat pizza and drink wine. For a split second we are ourselves. The unbearable stress of the last eight weeks is gone. We are normal. Normal parents with normal lives.
We head up to the 8th floor. Cardiac ICU. I’m excited. I can’t wait to see Sarah. Daniel warns me. Be careful. Don’t get your hopes up. I think I can handle it.
Sarah is sedated. On a ventilator. Swollen. Tubes everywhere. Blood drips out her nose and down her mouth. Her blood pressure is high. She has a fever.
Attending Doctors try to stabilize her. She fights the sedation. She struggles to breathe on her own. SHE DOESN”T WANT TO SLEEP. They increase the morphine.
Dr. Del Nido takes charge. More Doctors come in. Daniel and I leave the room. They work hard. Her pressure comes down. She cools on a mechanical blanket. Her heart rate lowers. Dr. Del Nido gets her exactly where he wants her to be.
I’m back at the hotel. Daniel is with Sarah in ICU sitting by her side.
I'm praying for my baby. Sleep my sweet baby. Sleep.
We are at the hospital. Sarah is wearing the pink sparkly Hannah Montana dress Nana gave her for her birthday. The nurses present her with hospital pajamas. She takes one look at them and says "NO WAY!" Not putting those ugly things on. They agree to let her wear her sparkly dress into the OR. They will change her there.
Sarah is happy. Cheerful. Playing with her beloved Seraphina - We take pictures.
The anesthesiologist comes in with sleep medicine. It's time for Sarah to drink the purple liquid. Sarah Screams NO. She doesn't want to go to sleep. We do everything we can to talk her into drinking it. Her fear intensifies. She screams over and over. I DON'T WANT TO GO TO SLEEP.
Dr. Del Nido comes in while Sarah is screaming. Sarah looks at him. Screams louder. Dr. Del Nido asks how we are doing? Daniel says "We're Fine - more importantly - HOW ARE YOU DOING?" Dr. Del Nido laughs.
Sarah is still screaming - Refuses to drink the medicine. The anesthesiologist pulls me outside the curtain. They're going to have to give her a shot.
I hold Sarah in my arms. She clings to me. Pleading. Begging. Please don't let them give me a shot Mommy. I DON"T WANT TO GO TO SLEEP. She looks at Daniel. PLEASE DADDY.... PLEASE.....
The shot goes into her arm....
Sarah is angry, devastated, scared... She looks at Daniel and I. Why did you let them do that to me? WHY? WHY?...
The anesthesiologist explains Sarah will be asleep within 60 seconds. I hold her tightly in my arms. Daniel whispers to her. We love you sweetheart. We love you. Go to sleep. Everything's going to be OK. We love you. I hold Sarah tighter. I feel her go limp. Her head falls back. The nurse takes her from me and lays her on the gurney. They cover her with her pink blanky and lay Seraphina by her side. I am sobbing. Uncontrollable. The tears won't stop. They ask if I want to give her a kiss before wheeling her away. I lean over and kiss her forehead.
I cry in Daniel's arms. We hold each other tight.
Sarah is in the bath - she asks why she needs to be scrubbed with special germ removing soap... We tell her she needs to be extra clean for her surgery tomorrow. She holds up her arm - points to the pin point bruise where they took blood today and says, " I already had my surgery..." Daniel and I don't know whether to laugh or cry.... xxxxoooo
We are led into a private consulting room to meet with Dr. Del Nido. Dr. Del Nido says a warm hello to Sarah. Sarah stares at a Barbie Fairy Movie on my I Pad. Dr. Del Nido tries again. “Hello Sarah.” Sarah turns the volume higher. WON’T look at him.
Dr. Del Nido tells us Sarah is first up tomorrow, provided the blood work comes back OK. We go over the plan. We are to arrive at 7:00 am. We will be led into a small waiting room. Sarah will be given sleep medicine. Within fifteen minutes she’ll look drunk and eventually pass out. Her last memory will be of us before being wheeled away. It will take approximately one hour to prep her before surgery begins. Daniel and I will be led into a large holding pen – We will spend the next six hours of our life – WAITING – WAITING – WAITING - with other parents of children who are also having surgery.
Daniel and I brace for the toughest part of the day. We are led down a long corridor into another packed waiting room. Dozens of children cower in their parent’s arms. Loud screams can be heard from behind closed doors. I flash on Dustin Hoffman getting his teeth extracted by Sir Laurence Olivier in Marathon Man. A little boy hides under a chair, as a parent marches her screaming three year old past him. He yells at his mother – “No way I’m going back there.” Daniel and I look at Sarah. She’s staring at the I Pad. No connection to what’s happening around her.
They call our name. We enter a tiny room. Sarah hops on my lap. They ask her to hold out her arm. Daniel’s ready to step in and hold her down. I keep a firm grip on her belly in case she bolts.
The needle enters her arm. We hold our breath. Sarah she sits perfectly still like a junkie contemplating the “high.” Long enough to fill two viles.
Sarah proudly exits the room, walks up to the little boy who is hiding under the chair and thrusts her pink band aide in his face. She bounces out!
Blood work comes back OK. Surgery is on - as long as the symptoms of her cold don't get worse overnight.
We arrive at surgery pre-op. A large waiting room filled with children and parents. A dry erase board behind the receptionist’s desk, lists in alphabetical order the surgical pre - op patients for the day. Sarah’s listed last. Weir.
Sarah’s nose starts to run.
Chest x-ray. Technician instructs Sarah to remove her shirt and necklace. Sarah is not happy. She wants to go home. The technician tells Sarah she can pick one parent to hold her hand. Sarah picks me. We go in the room. Sarah refuses to take off her necklace.
Aunt Danielle gave her the necklace on Sunday for her birthday. Sarah begs the technician to let her keep it on. She says it’s for good luck. If she takes the necklace off she won’t have good luck.
Devastated - Sarah eventually gives in.
Sarah’s had it. She’s done. We have blood work, vitals, a meeting with Dr. Del Nido and the anesthesiologist to go. Child life specialist comes up with stickers, toys, books, and diagrams. Sarah refuses to look at her. There's no distracting. No friend making.
Consent forms need to be signed. Daniel and I are asked to meet in a private room with a Doctor. Sarah refuses to let me leave her side. I ask if Daniel can sign without me. They say yes. I’m secretly relieved.
Dr. Newburger examines Sarah. Her nose is running clear. Sarah snifflles every 30 seconds. She has a temperature of 99.0. Could be a sign of infection. We will know more after the blood work.
Drive to the hospital is quiet. Peaceful. Daniel puts a comedy channel on the radio. We laugh. Sarah watches tweedy bird on the DVD player. We pull into the parking lot. Sarah's face drains of color. She cries. She doesn't want to go to the hospital. We tell her today isn't her surgery. She calms down.
Slept holding Sarah in my arms last night. She woke up and asked, "Mommy is today still my birthday?" I said no and she cried, "All my friends missed it." I promised her we would have a HUGE celebration when we get back to New York with everyone. We are off to the Hospital now.... Will update throughout the day.... xxxoo
Getting ready for bed. Tomorrow's a big day. Have to be at the Hospital by 7:00 am. After a day of cupcakes, birthday presents and a special dinner, we told Sarah what's in store for tomorrow. She's not thrilled about the blood work. Who would be? After watching Dragon Heart, Sarah is curious about scars. Daniel told her "Scars are cool!" They're proof you've been through something... I showed her the scar from my C-section. She looked at me and said "That's disgusting..."