Will I be okay? And Death

What a day!  Consent is among the most hellish experiences ever.  Everything ends with “and death” – let’s talk about all the possible complications of cardiac surgery . . . stroke, infection, blood clots . . . and death.  Now it’s time to meet with the anesthesiologist . . . complications could include nausea, vomiting, headache . . .oh and death.  Going through it in a room with Genevieve sitting a few feet away completely engrossed in her iPad with headphones firmly over her ears was difficult.  I know that she could not hear any of this – at the same time I needed to keep one eye on her and try to keep it together myself.  All I wanted to do was put my own headphones on and tune out the Cardiac Fellow.  That or run from the room screaming.  She needs me to not be a sobbing puddle on the floor.  It was just misery.

It wasn’t all “and death” – there were other fabulous moments such as “too complicated for a simple repair”, won’t know for sure until we get in there, aortic dilation, we’ve done this new procedure from Japan about 20 times (ugh, that’s it??? 20 doesn’t seem like all that many) – and I can’t tell you how many Dr. Baird has performed, while we do the best we can with the repair sometimes you need to bring them out and not risk another round on bypass so we might not be able to repair everything that we intended . . .

Thank God for Dr. Lacro who connects so well with Genevieve and was able to reassure us that while a new procedure, it is based on and very similar to so many other techniques they do all the time – including Genevieve’s last repair about 5 1/2 years ago.  He will see us tomorrow after she is moved to the Cardiac ICU and I am comforted knowing that he will be in the building.  He has been looking at my baby’s heart since I carried her inside of me.

So – tonight is the night before surgery.  Less than 12 hours to admission.  Used our antibacterial surgical soap, removed the nail polish from her nails and tucked her into bed.  Like a gremlin, she is allowed no food after midnight . . . and as we have used the antibacterial soap and let her air dry, I probably shouldn’t get her wet again either.

Genevieve’s questions are breaking my heart.  In addition to the usual statements that she doesn’t want to go to the hospital tomorrow, that she doesn’t want to have surgery . . . tonight’s question was “Am I going to be okay?”  So, yes, you will be okay – you are the strongest person I know and you are strong enough to do this.  I have to believe that and I have to put the “d-word” out of my head.  She can do this – she has to do this.

So remind me of that tomorrow . . . as I am not great at waiting and 6+ hours of it while she is out of my sight in the OR is going to be difficult.

 

 

 

 

 

Do I have to?!?!?!

So much of this is about how I have been feeling and coping . . . today is about Genevieve.  She is traveling on that same rollercoaster of emotion.

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This picture is about 2 years old – one of my favorites of Genevieve.  Harry took this one.

We had an amazing day.  Al and I visited the school to read a book called ZipLine (Find it on Amazon) to Genevieve’s class.  It is about a little girl that has open heart surgery just like our baby.  We also shared the Team Genevieve (slide show) video with her class.  Her teacher and the school psychologist helped us to have the conversation about why she would not be in school for the next month and how they could support both her and her twin brother Harry.  At the end, everyone was on Team Genevieve.   As we left the school, her kindergarten teacher stopped us to give her a card and stickers that she rushed out to pick up on lunch, her first grade teacher told us that she was planning a visit and the amazing women who run the before and after school program are planning a trip to the bowling alley for both Genevieve and Harry after her recovery.   After so many hugs, she skipped out of school surrounded by love.  The Philbrick Elementary School is the best choice for our family – the small community feel and support is just what our family needs.

My parents arrived at the blue house to help us get through this week.  Harry and Genevieve were overjoyed to see their grandparents and to have dinner out on a school night.  She shared her video and Team Genevieve poster with them and Harry had the security of knowing that he would be well cared for while we focused on getting her through pre-op and her surgery.

We packed her backpack for tomorrow – Emma, her American Girl doll, a magazine, a book, a coloring book and crayons, her journal with questions for the doctor and her iPad and headphones because there are some things that little ears just do not need to hear during consent.

It was a good night.  Then like her mother, the quiet got to Genevieve.  She doesn’t want to go to sleep because time goes by too fast when she is sleeping, she doesn’t want to go to the hospital tomorrow . . . she doesn’t want to have surgery.

DO I HAVE TO?!?!?!?

So, we curled up on the couch and watched a little more television.  Leaning against me, my hand on her chest . . . I can feel her heart murmur through her pajamas.  The tears are rolling down my cheeks.  Oh, Genevieve . . . yes, you have to.  I need you to do this.  You are strong and I know that you can do this.  Princess G, I hope you sleep tonight and if you can’t . . . come see mommy.  I am sure I will be awake.

Beyond my control . . .

Unless we encounter another delay, Genevieve’s surgery is just days away at this point.  I am not sure how I am feeling . . . numb?  Is that better than wrecked?  There are moments where I feel as if I am watching myself go through the motions of life from outside of my body.

It all feels just beyond my control.  Those who know me well can attest to the fact that I may be a bit of a control freak.  In my head, I know how things should be done and my world would be so much better if everyone just listened and followed my plan.  I can hear my friends laughing as they read this.  So, I may be more than a “bit of a control freak”.

With Genevieve’s surgery, I have reached that point where I have handled most of what I could control – arranged things with the school, referrals and approvals with the insurance company, FMLA for work, built my support network . . . All that seems to be left is to get her through pre-op, sign the consent forms and bring her to Boston Children’s Hospital instead of jumping on a plane and running far far away.

Now, I feel like I am left with luck and faith – a difficult place for me to be.  From her diagnosis at 26 weeks in-utero, we have been lucky.  She tolerated the Aortic Stenosis and did not require fetal intervention, at just 5 lbs, she breezed through her first catherization and was home off the feeding tube in 10 days and she was in and out for open heart surgery in just 5 days at nearly two years old.

Over the past year, it has felt like her luck has turned.  From swallowing a plastic quarter leading to a two night hospital stay and worried looks from the Cardiac team as they focused on the size of her heart leaving the quarter in the hands of GI to her cardiologist saying see you in 6 months only to call back a few weeks later to say that the surgeon wanted her to do a catherization to measure more than what was visible on her echocardiogram.  For hours after the procedure, Genevieve had to lay still so that the incision site would clot and we waited and waited for someone to come talk to us about the results.  The nurse was surprised that no one had been in to see us yet.  The moment that Dr. Lacro, her cardiologist, entered the room . . . I knew.  He has a knack for delivering the hard news – from the diagnosis to worried soon-to-be first time parents to the need for open heart surgery.  It was worse than they had predicted based on her echocardiogram.  Her luck had run out – it was a good 5 year span – now it was time to schedule her next aortic valve repair.  I fear we are in a tailspin – I need her luck to turn back around – I need the surgery to go well.

Then there is faith.  Trust or confidence in something or someone . . . all beyond that which I can control.  I want to believe that she can do it again – that she has the strength to bounce back from this and quickly return to life as a 7 year old.  I just feel powerless – I can’t personally take it away and make it better – I must put my faith into God and her amazing team of doctors and nurses.  Despite having the symbols for faith, hope and love permanently marked on the back of my neck, I am still having trouble believing.  I have grieved with too many other parents to feel comfort here.

I don’t like having so much beyond my control.

 

 

Hello, my old friend, guilt . . .

I really thought that I was past this point – the point where you wonder what you did to cause this.  I believe that every mother who is told that her child has some sort of birth defect goes through it . . .what did I do wrong?  Since Genevieve’s diagnosis, I have spoke to countless other women and told them all the same thing . . . this is NOT your fault!

I am overwhelmed as we approach her surgery date.  Today, an article from Boston Children’s Hospital has been floating around the heart groups on Facebook and was shared with me from other parents.   If you want to read it – here is a link:

Cardiac RESTORE: Decreasing medication dependency in the cardiac intensive care unit

It is about weaning Cardiac patients from pain and sedation medications.

I am not sure that I have made it to the end of the article.  The tears blur the words on the screen.  We are putting Genevieve’s little body through so much trauma that she will potentially go through withdrawal to come off the medications.

Then I am back there – just over five years ago . . . Genevieve was a few weeks shy of her 2nd birthday and not speaking in words yet.  They were bringing her out of sedation after her open heart surgery and had removed her breathing tube.   I can still hear that sound – she laid on the bed and just moaned for hours.  While the cardiac team managed her pain and read her body’s cues as to how she was feeling . . . it still haunts me.

This is big – I hate the thought of her being in pain and I know that there is no such thing as pain free surgery – let alone cardiac surgery.  It is just not fair and I am sad, angry, exhausted, broken, shattered, destroyed and so many other words.  I can’t do this . . . yet, we all know that I will.  Somehow, we will find a way to get through this.

What choice do we have?

But but but . . .

Tomorrow is the one week point – I will spare you the breakdown of everything between now and then.  Let’s just say that it is not enough time.

I am not ready.  I cannot do this.

Despite the seemingly unlimited support for Team Genevieve – I am feeling really alone right now.  It is tiring pretending to be strong, smiling and reassuring others that I believe it will be okay . . . when I am not so sure.   It takes all my energy to get through the day and to support Genevieve on this journey.   It is now – when all is quiet and they are sleeping that it becomes too much.  I want to believe – I want to have faith – but (and yes, I know that “but” negates everything that was said before it) sometimes the darkness does win and the terror takes over.

I am tired.  I know what I do when I am in pain … I just don’t know how to stop it.  I wonder if I will have any friends left if I make it to the other side of January 27th.

This fucking sucks.

 

 

 

Single Digits

Yesterday was a good day – spent some quality time with my son Harry.  We saw Star Wars: The Force Awakens for the second time . . . this time in 3D and had fun sitting in the back row giggling as we reached out to see if we could touch the Millennium Falcon.   It is nice to spend time with my twins individually.

Today is a new day.  Last night, Genevieve said she didn’t want to go to sleep because when she woke up . . . she would be a day closer to surgery.  Unfortunately, we cannot control time and while it does seem to pass faster when we are having fun or sleeping . . . it still goes by without pause.  I slept terrible last night and climbed out of bed to single digits . . . 9 days to her surgery.

9 short days, 6 more days of work, 5 more days of school, one more weekend, one more CCD class, one more dance class . . . and on and on.  The countdown ticks past in my head – there is not that much time left – one more Monday after today, 2 more Tuesdays . . . my head spins as I go through various combinations of the time that is left between now and her pre-op on January 26th and the surgery on the 27th.

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This is me – today I am caught between what is going on in my brain and my heart.  I don’t know what I am feeling or thinking, I believe the best description is lost.  I have to imagine that my friends and family are tired of listening to my rollercoaster of emotions.  I may be getting tired of sharing it as the words even sound repetitive to my own ears at this point.

Both my heart and my head hurt and sometimes the dark thoughts win.

 

I HATE MY LIFE!

12410536_10206771835752779_6846866060274433064_nGenevieve, Genevieve, Genevieve . . . being Genevieve.  I think she was born with a flair for the dramatic.   You can regularly find her making her own mock YouTube videos.

Having her climb into my lap, throw her arms around my neck, bury her head into my neck and state, “I don’t want to do it.  I hate my life” was difficult.  Yet another statement that I don’t have a good answer for . . . Guess what?  I hate it, too, I wish that she didn’t have to go through this and it is most definitely not fair.  Being the parent, it would probably be inappropriate for me to stomp my feet and throw a tantrum right along with her so instead, I just agree.  Yes, it is not fair.  Genevieve, I know that you can do this – you are strong and you won’t do this alone.

She bounced back from the conversation as if she had never said a word about hating her life and I was left feeling destroyed.  A dear friend from college reminded me that all children say this at some point – while they don’t all face the same challenges, they all seem to have that moment where they make this exclamation.  Truthfully, as an adult, I may have made the same statement over much less than what I am asking Genevieve to face next.

So life continues on in the Blue House.  Still making memories and trying to cram as much fun and distraction as possible into the days before her pre-op appointment.  It is a rollercoaster and I would be lying if I said that I was sleeping well and not crying daily – more like multiple times a day.  Just know that we are also smiling, laughing and finding more moments of joy than sadness. Tomorrow, Genevieve has a date with her daddy at the American Girl Bistro and I will have some much needed time with my Harry at the movies and wandering around Legacy Place.

She is so strong – stronger than I am and stronger than she should have to be . . . I hate that this is her life, too.

Snap out of it!

The past 24 hours have been difficult.  Last night, I typed the words “I am scared that I could lose her” – I am still terrified, that has not changed.  This morning, I saw that the amazing Alan Rickman died of cancer.  For me, he will always be the wayward husband who failed to see his wife in Love Actually and the man who brought Professor Snape to life in the Harry Potter series.  In an earlier post, I shared that my Harry is named for J.K. Rowling’s character.  When I heard the news, all I could think was whether or not Genevieve will have the chance to find the magic in the Harry Potter books followed by the wonder of it coming alive before her eyes on the screen.   She is only 7 – there are so many experiences that I still need to share with my girl.  I cannot lose her.

Today, I wanted to give in to the darkness.  It was painful to turn off the ignition and leave the comfort of my heated seats for work.  My focus was gone and I wanted nothing more than to return home, crawl into bed and pull the covers over my head.  I didn’t want to talk, I didn’t want to text, I didn’t want to communicate – all I wanted to do was hide.  Somehow I got through the day including working with a new employee, finalizing the headcount for a workshop next week and analyzing pages of reporting on internet, phone and floor leads for 34 different locations.  If bed was not an option, work made for an excellent distraction.

Friends and family made it difficult to give in to the pain as my email and FB page was flooded with Team Genevieve pictures.  From as far away as family in Taiwan to the beautiful smiling faces of the girls from Harry & Genevieve’s dance class and past co-workers that became friends joining in.

So tonight – a bit more hiding from the world in a hot bath, with a book and maybe a glass of wine.  Tomorrow, I will snap out of it.  I have a to-do list at work that is a mile long and a weekend of making memories planned.  While still scared, I cannot let the fear paralyze me and prevent me from making the most of every minute.

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Team Genevieve – since 2008

 

 

 

 

Two Weeks

Genevieve’s surgery is two weeks from today.  As I look at the clock, I wonder if she will be out of the operating room at this point . . . last time, we did not see her until nearly midnight and her poor body looked like it had been through a war.  The image is still burned in my mind.  I am in the dreaded countdown – two weeks, two more weekends, 7 more days of school for Genevieve, 8 more days of work in the office for me . . .

Tonight, I finished watching the first draft of the “Team Genevieve” video – I am teary with all the love and support for my family – most of all for my baby girl.  She is most definitely not alone.   While I am thankful and yes, blessed . . . I am also . . . you guessed it, struggling.

My days are filled with encouraging words, support, hugs and care packages including lovely hand knit socks that are currently keeping my toes warm as winter has arrived in Boston.   I want to be positive – I want to smile – I want to nod and agree that everything will be great.

Two weeks and I am not feeling strong, I am not feeling confident and while I may smile, the tears are always there.   According to the stats for this blog, I know that some of you do read this as there are many more views than mine.  Now may be a good time for you to click the X and stop reading this particular post as I am about to say what many people “shush” me about and tell me to stop talking.

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True confession – I am scared that I could lose her.

May you find peace in writing. . .

 

BsIdtgyCYAItZq5    Like mother, like daughter?

Hearing from your child’s teacher that “she was pretty effected by the news” of her surgery date is difficult.  15 days still to go and we are both clearly struggling.  Genevieve is working on a book about it at school and I pour out my thoughts here.

While I want to continue to encourage her to come to us with her questions, I do not want to push her into stressful conversations that she is not up to having.  Walking that tightrope, letting her take the lead and reaching out to her now and then to see if there is something on her mind.

Today was a day that I decided to push her a little . . .

M:  “So, what are you writing in school?  Does Mr. Berg have you working on a new book?”

G:  “How do you know?  I am writing about me!  I am writing about November.”

M:  “So, Genevieve, you are writing about your cardiac catherization?”

G:  “Yes”

M: “That’s great, do you want to tell me about it?”

G: “Not now, I want to know how you know?  How do you know what I am doing?” said with that curious smile.

I am going to let her think it is magic – moms just know.

All that matters to me tonight is that she is smiling and happy.  I am thankful that her teachers are encouraging her to pour her feelings out on paper.  My hope is that she finds the same peace in writing that I do.