Is there no other choice?

I have an entire other blog post completed and saved – I was ready to post it when Genevieve came out of her room, unable to sleep and said the words that break my heart every time, “I am worried about my surgery.”  No matter what time it is, these 6 words make my world stop.  Al and I talk to her until she feels a little better.  We cannot eliminate the worry, all we can do is help her to find enough peace to go back to sleep, to rest and to continue on being a child until the next time she is overwhelmed with the worry.

“Why do I have to have surgery?  I know the good choice is surgery and the bad choice is to be ill, but is there no other choice?”

My Genevieve, I wish there was another choice.  Trust us, we would not ask you to do this – we would not ask you to have to go through something so big if there was another choice.  We have turned to the team at Boston Children’s Hospital – some of the very best doctors and nurses in the world – and everyone we know and so many people that we don’t are praying for you.

You are my daughter – an obsessive researcher.  I found sanctuary in a card catalog, books and spent a decade working in a library.  You have made friends with Siri.  We are here for you and we will help you to learn more about your diagnosis, about your own heart.  Then we will help you to understand that you are not Aortic Valve Stenosis and Aortic Valve Regurgitation.  You are 7 years old, in the second grade. you are a twin (yes, the older twin), you love to dance, write and spend time with your friends.  You are our Genevieve – beautiful, strong, and confident.  Multiple friends have told me that you sparkle – to me, you are magic.

There is an army that stands beside you – so while this is big, you will not go through this alone – Team Genevieve.

 

 

 

 

Why, why, why? (The F Word Part 2)

This fucking sucks – yes – there is that F word again.

Genevieve has overheard bits and pieces of conversations lately – with the school, between Al and I, with my parents, with the dance teacher, with the doctors and nurses in the recovery room post catherization.  While you do your best to protect them and to focus on the holiday season, little eyes are always watching and little ears are always listening.  Tonight, she came to us with her questions.  While I am thankful that she feels comfortable enough to talk to us . . . it still sucks.

Tonight, she came to us with all of the “why” questions and we once again entered into a conversation that we were unprepared for.  While I prefer to be the planner, I think in this situation, we are better being real with her.  Even if I could script out the conversation like one of the Call Guides that I teach at work, she would take me off course into unchartered areas throwing objections that would require me to answer honestly and to think on my feet.  Nothing prepares you for these conversations.

My heart feels as if it is breaking as I do my best to answer my daughter’s questions on her own “broken” heart.  We do this because we want you to be well, to be able to keep playing, dancing, swimming, Little League and whatever else you want to do.  I don’t know why you were born with a heart defect – sometimes things like this just happen.  I do not know why God made you this way, I just know that God put you with parents and family that love you so much and made it possible for you to be treated by the best doctors in the world at Boston Children’s Hospital.  You will never be alone for you are surrounded by people that love you.

Why does it have to be so soon?  Why January?  Why not April or May?   Because January is a good month, it is after the holidays and you will be recovered in plenty of time to get back to your dance recital and First Communion.  It is a good time to snuggle up in a warm house and rest.

What if they make a mistake?  They won’t.  Your doctors are the best in the world.  People come from all over to be treated here.

I am scared, I am worried.  To this I have no answers – truthfully, she is making a statement so perhaps it doesn’t require an answer.  I am scared and worried, too.  So my baby G, you are not alone.  I am here when you need to talk.  I will do my best to answer your questions and to find you the help and support you need as we go through this.

And then there is my son, he thinks before he speaks and his questions tend to be very direct.  He turns to his twin sister, “I don’t want to scare you more but . . . ” and then mother’s intuition kicks in as I know what he is going to say.  Harry, you talk to me.  I pull him close so that he can whisper his question to me, to just me.  Can you die in open heart surgery?  There is only one answer to that question – right or wrong – they are 7 years old.  NO!  No no no, Genevieve is going to be fine.  We’ve got this.

After an hour of talking, watching YouTube videos of her surgeon, some extra TV time to try to distract her from her fear and worries, we finally get them tucked back into bed.  Pray for a good night’s sleep and peaceful dreams – she needs it.

And now that they are back in bed, I am wrecked.  I am crying as I type this out – it is not fair, nothing about this is fair.  I am physically, emotionally, mentally and spiritually drained from the conversation.  I am worried, I am scared and I am struggling.  I am angry at the universe and I am hoping that in writing, I will find a moment of peace as I, too, need to sleep.  My children need me and I need rest to find the strength to be present.

We’ve got this – there are no other options.  We will because we must.

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Here is my Harry & Genevieve, we knew this day would come.  Years ago, I ordered Healing Helpers.  These teddy bears have been modified to include a zipper pouch in it’s chest and a heart.  Gen’s has her initials and stitches to represent heart surgery. Harry’s has his initials.  My hope is that this will help them to feel connected when they are apart.  Twin bears for my twin babies.

 

Have you met my daughter Genevieve?

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Since I have started writing, I have had a few people ask me to tell them more about Genevieve – what is her diagnosis?  What is her story?   Let me start by saying that Genevieve is magic.  She is beautiful, confident and full of sass.  She owns her story and lives each day to the fullest.

I have shared much of this before, so if you are friends with me on Facebook, you may have already read this a few years back – many of you were there by my side for much of this and may have followed the updates during her first surgery.

“We see something with your daughter’s heart – it is probably nothing, but we would like to refer you to Boston Children’s Hospital (BCH) for an echocardiogram”

I can still hear those words over and over again.  After struggling to conceive, we were blessed with our twins and now there is potentially something wrong with them.  What does this mean?  Did we do something wrong?  Did we cause this?   It is probably nothing, right?

We called the Advanced Fetal Care Center to schedule an echocardiogram.  The appointment seemed to go on forever – an in-depth ultrasound of the heart, watching the colors dancing on the screen that represented the blood flow.  Scanning both hearts –that of my son and my daughter, just in case.  Looking at the face of the ultrasound technician hoping to see a glimpse of whether this is good or bad.  Holding the hand of my husband, we were both waiting for them to say that it was nothing.

We then went to another room to wait for the doctor.  Dr. Ronald Lacro came in to talk to us.  He brought with him a book from the American Heart Association called If your Child has a Congenital Heart Defect.  He showed us pictures and went over her diagnosis – Aortic Stenosis.   He took the time to explain the diagnosis and did his best to answer our questions but a lot of it would remain unknown until after she was born.  My husband, Al,  liked his direct, honest approach . . . while I was in tears and nothing that he could have said with the exception of “everything looks perfect” would have been a comfort to me.  Dr. Lacro left us with the book and his card with an invitation to call or email with anything that we wanted to discuss further.  He knew that we were overwhelmed and that a lot of the questions would not come to mind until we had left the hospital.

The recommendation was to schedule a follow-up echocardiogram so they could monitor her as she got bigger.   Wait and see.  I was a wreck – what did this mean?   What does this mean for her twin brother?  We didn’t have just her to worry about – we had her twin to factor in, too.

For the rest of the pregnancy, we had regular appointments at the Advanced Fetal Care Center.  Being a twin pregnancy, we also had regular appointments with our OB, Dr. Katherine Economy at Brigham & Women’s Hospital (BWH).  She seemed genuinely surprised that the spot they had seen at our anatomy scan had turned out to be “something” and worked hard to be reassuring and supportive.  It was stressful, but uneventful.  No major change with her heart, no complications with the pregnancy.

In the last month of the pregnancy, we were appreciative to have made it that far and it was time to start talking about what all of this means.  Thankfully, we did not require intervention during the pregnancy, but it looked like she would require surgery shortly after birth – a catheter procedure to widen the narrowed valve.

We scheduled appointments to tour the Cardiac NICU at BCH and the NICU at BWH.  It was heart breaking and inspiring all at the same time.  The most beautiful tiny children hooked up to machines and monitors while the most dedicated and positive doctors and nurses do all they can to support life.  It was amazing and gave us a bit of hope for what was to come.

We scheduled our c-section for August, 26, 2008.  There was comfort in having a scheduled date.  Our families could be there to support us.  The Cardiac Team at Children’s Hospital was ready and knew that our twins were going to be delivered that day.   During the entire pregnancy, our son was presenting as Twin A and our daughter was Twin B.  Even during a quick ultrasound right before we went to surgery . . . our son was Twin A.  At 8:11AM, Genevieve came into the world.   She was determined to be born first and slipped right past her brother – a sign of things to come with our little girl.  At 8:12AM, Harry made his appearance – now the second born and little brother.

The first few days were a blur.  I saw Genevieve for a moment and then she was gone, transferred to 8 South at BCH.  My son Harry and I were recovering at BWH.  Al was running back and forth trying to be there for everyone.  He was amazing – so strong for his newly born children during all of this.  While time seemed to slow for me, he felt like he was in constant movement.  At my bedside, holding his son and watching the Red Sox game, then back on his feet running over to BCH to check on Genevieve and meet with her doctors and then back again.

At just a day old, Genevieve underwent her first catheter procedure.  They had been able to open the valve more and she was recovering.  Every day, I am so thankful to the team at both Boston Children’s Hospital and Brigham & Women’s Hospital.  Dr. Lacro would call me to let me know how Genevieve was doing, the staff at 8 South made sure that my mom, my father-in-law and anyone else who sat at my daughter’s bedside was comfortable and the team at BWH always happily took Harry to the nursery and ordered a wheelchair so that my husband could take me through the tunnel that connects the two hospitals to see Genevieve.

I was discharged with Harry from the hospital on Saturday, August 30th and Genevieve joined us at home the following Thursday.  That first year was tough – a couple of hospitalizations for non-RSV bronchiolitis, but we got through it.

So begins the rollercoaster that was Genevieve’s 2nd year . . . we had regular check-ups and lots of wait and see, wait and see.  At 14 months old, Dr. Lacro ordered a heart catheter.   He felt that surgery was coming sooner than expected – much sooner as we had age 3 – 5 years in our heads –  it was time to check the pressures across her valve.   On November 5, 2009, she was admitted as an out-patient and had her second catheter procedure.   It was decided that Dr. Lacro would review the results with Dr. Pedro Del Nido, head of Pediatric Cardiac Surgery and get back to us the following week.   We took home our medicated little girl – she moved like she was drunk, completely off balance . . . and wouldn’t you know, that was the night she decided to start walking on her own!

We got the call about 10 days later, things looked “ok”, her heart was holding its own so we would continue to “wait and see”.  I think this is something that every heart parent can relate to.  May 2010, we had her next follow up appointment, EKG and echo-cardiogram.    This was the first appointment that I personally went into feeling strong.  She was doing great just 6 months prior so this should be a routine appointment.   She was a busy toddler, always on the go and no signs of anything amiss with her heart.  Boy, was I wrong!  Dr. Lacro came to us and said that he wanted to consult with Dr. Del Nido again.  That Genevieve’s heart was 3 times the size of a 2 year old – a clear sign that it was showing the stress from the severe regurgitation.   He couldn’t say for sure, but his feeling was that we would either need to do another heart catheter or we would be scheduling open heart surgery to repair her valve before the end of the summer.

I always said that I felt like surgery was hanging over our heads . . . we knew it was coming, so let’s get it over with.  That is what I said, but when we got the word that they did not consider a catheter necessary and wanted to go ahead and schedule surgery, I was devastated.  August 3, 2010 – Open Heart Surgery.  How could this be? Genevieve looked fine, she didn’t act sick, and you couldn’t “see” that there was anything wrong with her heart.  Despite my disbelief, the date was marked on the calendar, FMLA paperwork was done and we had made arrangements for my mom to move in and support us during this time.  We needed someone to be there for Harry and there is no one better than Grandma to spoil him and make sure that he felt loved while his twin sister was in the hospital.

Friday, July 30 – just days before surgery, we got a call from Dr. Lacro.  Dr. Del Nido had a more critical case come up and could not do Genevieve’s surgery on the following Tuesday.  It might be a month or more before she could be rescheduled.  We had a choice to make – reschedule or go forward with a surgeon named Dr. Christopher Baird and they needed our decision soon.   Dr. Del Nido is a rock star in the world of pediatric cardiac surgery.  We had done all of our research and felt we were in the best of hands.  Dr. Baird?  Who is he?  He wasn’t even on the Children’s Hospital website as part of the staff!  Dr. Lacro assured us that either decision would be fine.  Dr. Baird was new to BCH, an extraordinary surgeon recently hired to head up their Congenital Heart Valve Center.  Valve repairs – that is what he “did”.  We decided to go ahead with a pre-op appointment on Monday, August 2nd, meet Dr. Baird in person and go from there.   We did not cancel, but if I was not comfortable after meeting him . . . we would most definitely be rescheduling last minute.  This was my little girl’s heart we were talking about.

Dr. Baird was AMAZING.  We liked him immediately.  He appealed to the car-gal in me.  Genevieve’s unicommissural aortic valve was nothing more than a flap going back and forth.  He intended to rebuild it and make it look more like the “Mercedes-Benz” symbol that a normal aortic valve resembles.  He was so friendly, so charismatic, so confident . . . we were moving forward the next morning.

Reprieve – August 3 – just an hour before we were about to leave for the hospital we got the call.  Genevieve’s surgery was being postponed.  A heart transplant had become available for another child and they needed our operating room.   I was overwhelmed, disappointed . . . and then relieved that our daughter was not that critical.  Our thoughts and prayers turned to this other child who was in much greater need then our Genevieve.  We could wait a few days; we could wait a few months if necessary.

August 5th – open heart surgery – no more reprieves, we were moving forward.   We were scheduled to be the second surgery of the day.  They estimated that she would be brought to the operating room around noon.  Tick tock, noon came and went, along with 1, 2 and 3PM.  The first surgery had gone long.  As the day went on, my anxiety increased. Would they still be able to fit us in?  Would the nurses and doctors be in any condition to do another surgery after the first one?  At 3:30PM, we were finally brought down to the pre-op room and Genevieve took her oral sedation medication.  We stayed with her coloring, playing, hugging and reminding her that we loved her over and over again.  At 4:30PM, I was allowed to carry my sleeping daughter to the operating room and sit with her as they put her under anesthesia.  One last kiss on the forehead and off to the waiting room to meet up with Al.

My Facebook status updates tell the story of that night:

4:35PM “Just left the OR, Genevieve is under anesthesia and they will be getting started”

6:58PM “Vivi went on bypass at 6:15PM, they say she is doing well”

Thankfully, my brother-in-law Walter showed up at that moment.  He convinced us to go across the street to Bertuccis and have something to eat.  The nurse had both of our cell phone numbers, there was nothing we could do at that moment and it would be hours before we would know how things were with Genevieve.  We were in and out in less than an hour, but it was good to have a little something in our stomachs as it was going to be a long night.  On our way back up to the waiting area, we bumped into Dr. Lacro at the elevators.  He told us that he was the cardiologist on call that night and he would be doing her echocardiogram once they had completed the repair.  I was never so glad to see him – he knew her heart better than anyone and he would be there to assist.

More Facebook updates:

9:51PM “First repair still not as good as they hoped. She is back on bypass and they are reworking the valve repair. This has to be the longest day of my life.”

11:10PM “Off bypass. Second echocardiogram was better. Hope to see her in an hour or so and to talk to the doctors. Thanks for all of your support and prayers.”

Al and I sat in the waiting room until just after midnight, updating Facebook, reading all the messages of love and support from our family and friends . . . and watching Boston Med!  There is something really surreal about being at Children’s Hospital seeing the very hallways you just walked on TV.  Dr. Baird found us around midnight at which point he told us that the surgery went well – it went very well!  The first repair was probably ok, but he wanted to give her a better repair that would hold for as long as possible.  There was that confidence that made us trust him with our daughter’s heart – he seemed very proud of his work and I was thrilled to hear it.

All my friends from Babycenter and Facebook who have already been through this warned me.  She would look a mess when we saw her after surgery.  All cords, wires, monitors, blood, bandages and more.  It would be like she had gone through a war.  Nothing can prepare you to see multiple IVs, a central line in her neck, breathing tube and chest tube.  I know they tried but having lived through it; I don’t think that there is anything that anyone could have said to truly make us understand.  It is something that you just have to experience.  Actually, it is something that I wish we didn’t have to experience!

Over the next 5 days, Facebook was the place to look if you wanted updates on her progress:

August 6, 9:59AM “Genevieve did well last night- still sedated but ok. Chest tube is out and they will be working on getting her awake and off the breathing tube today. Thanks all!”

August 6, 4:26PM “Vivi is continuing to do well. Breathing tube is out, throat is sore but she is sleeping comfortably. Hope to be out of the ICU by end of weekend and into a regular room. Then home after that.”

August 7, 9:31 AM “Vivi continues to do well. Central line in her neck has been removed. Down to just an IV in each hand, heart monitors, blood pressure cuff and oxygen monitor. She had some cheerios and apple juice for breakfast. They might even move her out of the ICU into a regular cardiac room today. YEA VIVI!”

August 7, 4:56PM “Another night in the ICU – but only because there is not a room available in the step-down cardiac floor. At this rate, she could be home early to mid next week.”

August 8, 10:22AM “Vivi continues to bounce back quickly. She has gotten out of bed and walked the hallways a couple times. With the exception of the bandages, pace maker cords and heart monitors, you would never know she had open heart surgery just days ago.”

August 9, 2:10PM “All continues to go well – sedated echo cardiogram tomorrow and if the heart looks good . . . Vivi might be on her way home tomorrow!!!! YEA!!!”

August 9, 9:47PM “watching Sid the Science Kid with Vivi on what will hopefully be our last night at Childrens Hospital Boston for a very long time.”

August 10, 3:15PM “Genevieve is home!!!! Amazing! Just 5 days ago she had open heart surgery and now she is playing in the living room like she had never left!”

It was five short days and Genevieve was home.  A friend who went through aortic valve replacement surgery in his 40’s told me that children are made of rubber, they bounce back.  He was laid up for weeks recovering from virtually the same surgery.  In less than a month, Genevieve would be off of all medications except a low-dose aspirin a day . . . and in 3 months time, she would be off that, too!

Seeing Genevieve reunited with Harry, her twin, is a moment that I will never forget.  While in the hospital, she used to look at the photo of Harry and Genevieve sitting in the wagon that we kept at her bedside.  Every night, we both kissed that picture good night as we settled down.

In the 5+ years since her surgery, she has had regular appointments with her cardiologist and has lived a “normal life”.  She is currently in the 2nd grade, takes dance lessons, played Little League and is learning to ice skate.  She still talks non-stop about going to Disney World over the summer and is in constant motion.  Always singing, dancing and making memories!

This is Genevieve and a small part of her story – she is magic, my warrior.  As we prepare for her 2nd open heart surgery in the very near future, I know that we have got this!

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Just spinning . . .

Right now, my world is just spinning round and round on its axis.  I do not move forward and I cannot move back.   Those that know me, know that I am a planner.  I love to-do lists and the satisfaction of crossing things off and moving on to the next, calendar and E-Mail perfectly synced from my iPhone to my iPad and laptop.  We have plans for next week?  Send me a calendar reminder, I will be there and I won’t be late because my phone will let me know when I need to depart taking into account current traffic patterns.

Except now – now I am unable to plan.  Waiting for someone to call me from Boston  Children’s Hospital to schedule Genevieve’s surgery.   Work summit for January, okay – let’s schedule it, I hope that I will be there, dinner & drinks in December, okay – let’s do it – just make sure you write in pencil or we can meet in the lobby of the hospital and have Au Bon Pain . . .

Just spinning, each day spinning a little bit faster – as my life seems to spin further out of control.  While I am not ready to place Genevieve’s heart in the hands of her surgeon – I know it is coming and no amount of wishing and praying will change that.   I believe and pray that God will guide his hands and that my baby girl will have a successful surgery and recovery but I don’t believe that there will be a miracle making this next step unnecessary.

I need a date – I need to put it on the calendar.  Then I can throw myself into the details that I can control – call the pediatrician to check referrals, call the insurance company to check approvals, contact Child Life to help us have these conversations, FMLA paperwork, notify work, contact the school to go over tutoring options for her recovery and most of all set up our support network to make sure that both Genevieve and Harry are loved and cared for.  This is the start of my to-do list and while I can write it down, I cannot check off anything without a date.

While working on this post, I just got “a call” – not “the call”.  Caller ID – 617-355 – some extension at the hospital.  A number that has become too familiar.  The details have been confirmed as our surgeon and cardiologist have had a chance to review her case.  She will have surgery and they are hoping to be able to use a newer technique from Japan to repair her aortic valve using her own heart tissue and possibly bovine tissue to rebuild.  Delaying a Ross Procedure to replace the valve until she is older and bigger.  Paperwork is being submitted and someone from Dr. Baird’s office will contact me to schedule.  It could be between Thanksgiving and Christmas, it could be after the holidays.

More waiting, still no date on the calendar.  Spinning, spinning, spinning – hopefully not for too much longer.  I can’t wait for much longer.

 

 

 

 

The F Word

Here is the Facebook post that inspired the need to write – to vent, to pour my thoughts out before they consumed me alive:  “Please excuse the language – this fucking sucks (and no auto correct – I do not mean ducking). When your child asks why she has to do this ….”

It was in the minutes before they would take Genevieve away for her catherization.  We were in what would be our recovery room for the day, she had her hospital gown – even Gabrielle, her American Girl doll was dressed in a gown complete with a hospital bracelet ready to follow her into the OR.  It was then that my little girl looked at me and her father and asked the question that I have been dreading . . .”why do I have to do this?”.

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Time was not on our side to have a long conversation – that might have been a blessing as neither of us had a good answer.  We stumbled through it, because we love you, because they need to check your heart, because we want you to be well.  She looked at us and replied, “but this is big.”  Once again, we could not seem to find the words – yes, this is big.   We love you Genevieve, you will do great.

Then it was time for a kiss on the forehead as they rolled her away.  Like a similar day, just over 5 years ago, I walked the hallway in tears towards the waiting area, towards the cafeteria, towards anywhere that I could get lost in the chaos of people.

A cardiac catherization is big – they put you under anesthesia and send a tube up your leg and into your heart to check the pressures.  We completed the consent forms and listened to all the risks from stroke to more serious and rare complications that could result in needing to be immediately put on heart lung bypass.  Genevieve was spared the details with her headphones and iPad while we spoke to the cardiac fellow the day before.

Sitting in the cafeteria, one thought kept running through my mind – yes, this is big . . . and what I may ask of you next will be bigger.  Open heart surgery, placing her in the hands of Dr. Baird and his team at Boston Children’s Hospital to stop her heart for a third time and to rebuild or replace her aortic valve.

As the day went on and Genevieve bounced back from the catherization in typical fashion – all sass and annoyance that they really did expect her to lay still for 6 hours so that the incision area could clot after the blood thinners, my fear became a reality.  Dr. Lacro, our cardiologist, the man that has been on this journey with us since her heart defect was discovered during pregnancy delivered the news.  It is time, the catherization results were even worse than they had predicted based on recent echocardiograms.

So to my baby girl, what I am going to ask you to do next is even bigger and it still fucking sucks.  It is not fair and I am sorry.  All I can promise is that you will not be alone.  You will never be alone – you will always be surrounded by those that love you.