Angry Girl Walking & Other Memories

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If looks could kill . . .

While it was a long 6 days and 5 nights in the hospital, there were some smiles.

I clearly remember the relief of seeing her in the Cardiac ICU and watching her breathe – my favorite moment in those first hours after open heart surgery was when the room was filled with the Cardiac fellow, her nurse and a pulmonary specialist as they brought her out of sedation and removed the breathing tube.  It was 2:AM and I was exhausted.  Genevieve looked at me and said her first post-surgery words . . . “I love you”, “where is daddy?” and “where did you sleep?”  I promised her that she would not spend a night alone in the hospital so she wanted to know exactly where I had been sleeping.  Being in the CICU, there was a small sleep space behind her by the window.  While comforted to know that I was there, she didn’t like that I was out of sight.  It was a happy day when she moved to a large private room on the floor where she could see me sleeping on the couch.

The next smile is a memory that belongs to Al.  He was with her when it was time to get her out of bed and up on her feet.  In only a hospital gown, she refused to put on underwear to walk the halls.  She just wanted to get it over with and then back to the comfort of her bed.  She speed walked those halls with a scowl on her face.  My angry girl walking.  For the next couple of days, chest tubes still in – this was the routine.  It felt like I had to skip at times to keep up with her as she walked the minimum with the goal of getting back to her room as soon as possible.

Taking her various medications was a challenge – anti-nausea, various pain killers, blood pressure, laxatives and more.  Every time they asked her to take something, she would question the nurse as to what it tasted like.  Sometimes they would try to answer, sometimes they would tell her that they didn’t know and that she should take it and then tell them what it tasted like.  One day, Genevieve tired of the game and flat out refused to take her medicine.  She pointed at the IV in her neck and told her nurse Alex to “just put it in there”.  When told that it was not that type of medicine, she continued to refuse and told them to get that kind of medicine.

We were fortunate that we had a large private room in the new section of 8 East.  It was perfect as Genevieve had many visitors over her last 2 days in the hospital.  At times, it seemed like a party with her friends from West Roxbury School of Dance.  Despite the patient “fall hazard” warnings on the door, my daughter ruled that room jumping around, dancing with her bouquet of balloons and filling the space with laughter.  She refused to nap and would be up all hours of the night.  I cannot imagine her with a roommate – they either would have joined in or would have been requesting a room change far from our little social butterfly.

Once her chest tubes were out and she no longer required us to carry them around behind her.  Genevieve started to assert her independence.  The first time she decided to get out of bed on her own, resulted in a nurse flying in to see what was going on.  My baby decided to unplug all of her heart monitors setting off the alarms in her room and at the nurses’ station.   The nursing team learned to let Genevieve be.  She wasn’t going to buzz and wait for them every time she wanted to use the bathroom.  So she would unplug all the monitors, get out of bed and when she was done . . . she would climb back in and plug everything back in on her own.  What it must have been like to see Genevieve go off line and then come back a few minutes later!

These are some of my happy memories from a truly difficult time.

 

 

 

 

 

Calming the Hornet’s Nest

Prior to her open heart surgery, Genevieve had a very pronounced heart murmur.  It was so turbulent that I could place my hand on her chest and feel the vibration, it was audible when you put your ear close.  To compare, I would put my hand on my son’s chest and I could faintly feel the steady even beat of his heart.  If Harry’s heart beat is a constant steady rhythm then Genevieve’s was an angry hornet’s nest before her aortic valve repair.

There has been a lot of snuggling on the couch during Genevieve’s recovery.  I feel my hand drawn to rest on her chest – seeing if I can still feel the turbulence.  I cannot.  I used to be able to close my eyes and know which heart beat belonged to which child.  Now her heart still feels louder and closer to the surface then Harry’s but the buzz is gone.

Yesterday, I asked her about it.  Genevieve, does your heart feel different?

I expected her to look at me like I was crazy.  I think of myself, even when I focus on it, I am not sure that I have an awareness of my own heartbeat – especially when at rest curled up on the couch with my daughter.  She stopped for a moment to think about the question before answering.

“Yes, it feels different.  It feels slower and instead of going bump-zzz-bump-zzz-bump, it goes bump (pause) bump (pause) bump”, she replied before turning her attention back to the Disney channel.

How odd it must be to have your heart beat change.

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We’ve been strong for too long..

I know I am blessed – my baby is home recovering from open heart surgery, released after just 5 days post op.   I feel the need to say this as what comes next may sound ungrateful.

Genevieve’s follow up appointment was uneventful.  She looks good – incision is healing well, we have taken her off the Lasix and will be working on getting her off the blood pressure medication.  Chest x-ray looks good showing that her partially collapsed lung has come back and everything seems to be on schedule.

So why am I feeling disappointed?   I used to believe that I was a patient person but this entire experience has made me feel otherwise.  We made it through the wait while she was in surgery, we made it through the initial recovery in the hospital and her release.  She made amazing strides and she seems to be back to her old self in so many ways.  All sass and attitude, dressing up in her favorite costumes, playing dolls and fighting us when it is time to do her homework.  She races Harry through the house and as much as we yell for him to be gentle with her . . . she is the instigator.  She climbs on the furniture, jumps from the couch and shows no sign of pain.

We have been strong for so long and we are ready to end this chapter.  We are ready for life to return to normal.  Unfortunately, Genevieve is not quite there yet.  At her follow up appointment, her cardiologist said she looked great, she was such a “trooper”.  With a smile, he said that she is on schedule to return to school on March 7th – that this date sounded “right”.

I believe that both Genevieve and I thought that her recovery was going so well that he would say that she could think about returning to school after February vacation.  That she could get back to working on her group report on dolphins and seeing her friends in the classroom.  I love my parents and am thankful to have them here to help.  At the same time, I am ready for my house to be a little less crowded and to stop worrying about scheduling her school tutor and what activities to plan to keep her busy during the seemingly endless hours that she will be trapped in the blue house.

It will be 3 weeks from tonight before she will be packing her back pack and setting out her school uniform.  There will be 10 more school days of her watching Harry head off to school while she is home.   There will be countless more conversations about how it is not fair, how she is tired of being different . . .

She is ready now and to continue to wait doesn’t seem fair.  It is all that which we cannot see – the germs that her immune system may not yet be strong enough to fight off.  The importance of protecting all the work they have done to rebuild her aortic valve.

I also feel like I have reached my limit.  I do feel as if I have been strong for too long and now I am just done.  While this is not a set-back in any way . . . it feels like one and I have reached my breaking point.  I just want to pull the covers over my head and cry – for both of us.

It continues to be a lot to ask of a 7 year old.

 

This chapter has not ended . . .

Genevieve was released from the hospital just 5 days post surgery.  She sleeps in her own bed, wears her own clothes, is not connected to any machines and is working on her recovery so she can continue to get back to school and her normal routine.  Two weeks ago today, we sat in the surgical waiting area receiving reports on the surgeon’s progress.

So, why am I still up at 3 am?  While the hardest part of this time may be over, the actual surgery, this chapter in Genevieve’s story has not yet ended.  Her heart will never be fixed – at some point she will transition from being a pediatric heart patient to an adult heart patient.  Studies indicate that there are more adults living with CHD at this point in time than there are children so there is a lot of hope for more advances to support them as hearts repaired at a young age have unique challenges not met by doctors who are focused on acquired heart disease.  So while her story will last her lifetime, I am waiting for this specific chapter in her journey to end.

Friday is her follow up at Boston Children’s Hospital.  She will go through all the testing – EKG, echocardiogram and chest x-ray.   She will have her vital signs checked and we will meet with her cardiologist to discuss just how things are going.  I am hoping that I will find my peace and perhaps a full night’s sleep after that appointment.

My friends and family tell me just how great Genevieve looks.  Her sparkle is back – as she dances around the house always smiling.  Her incision is healing well with no signs of infection.  It all seems to be going perfect.  She is having an amazing recovery.  It is all that I cannot see that keeps me awake at night.

I can’t see if the repair is truly holding, I cannot see if her heart is functioning well or if her partially collapsed lung has recovered.  Ask anyone that knows my girl, she had boundless energy frequently outpacing her brother and other children without any health concerns.  From outward appearances, I handed over a perfectly healthy child and allowed a surgeon to open her chest, stop her heart and rebuild her aortic valve.

If you are the praying type, we could use some positive thoughts for Friday’s appointments.  We are all ready for this chapter to come to a happy end and to get back to life.  Less about the heart surgery survivor and more about a 7 year old who loves to sing, dance and play.

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Life is still fragile . . .

You are at one of the best hospitals in the world . . . her surgeon heads up the Congenital Heart Valve program – who better to rebuild her valve?  Have you seen the US News & World Report standings?  Boston Children’s Hospital is ranked #1 in Cardiology and Heart Surgery.  People come from all over the world to be seen by the doctors in your backyard.

I cannot tell you the number of times that I have said these phrases . . . it would be second only to the number of times that I had someone tell me this leading up to Genevieve’s surgery.  At some point, I found myself becoming annoyed when people would “remind” me of what I already knew.  Sometimes people don’t know what to say and they want to be supportive and positive.  So I would smile, nod and reassure them that I was aware of just how lucky we are to call Boston home.  Of course, Genevieve would be fine.

Even for me, it is very easy to say when you are not the one hugging your child and watching them being wheeled away to the operating room.  When you are not the one sitting on the third floor as the liaison brings you updates as to when the first incision was made, when your child went onto bypass . . .

Despite just how amazing their doctors and nurses are . . . the success rate is below  100%.  There are no guarantees so we hope and pray for the best possible outcomes.  We are lucky and we are so very very blessed.   Genevieve has made an amazing recovery and continues to work towards going back to being a 7 year old – school, dance, homework and playdates instead of blood pressure medications, Lasix, chest x-rays and echocardiograms.

As strong as our children are – Fierce Pierce, Ethan, Savannah, Cora, Shakirah Ariana, Mila and so many others . . . life is fragile.

So tonight, I will hold both Harry & Genevieve a little tighter.

 

 

January 27th – Heart Day #2

I haven’t blogged for a few days – seeing Genevieve through her 2nd open heart surgery took more out of me than I had expected.  Back in 2010, she was among the last cases of the day and we did not see her in the Cardiac ICU until nearly midnight.  She remained sedated and I crashed on the sleep bench in the corner of her room.  This time, she was one of the first cases . . . which meant that we were able to see her closer to 6PM and instead of being able to finally give in to the exhaustion, she had a 1:00AM removal of the sedation and breathing tube.   Somehow, we powered through.

Much like her first, Facebook was the place to be for updates on Genevieve’s surgery – with all of the love and support from family and friends all over the world, this was the easiest way for us to keep everyone posted.  It was also easier for me to type than to speak to people without completely breaking down.

9:04AM – Having to say goodbye to G as they took her to the OR was so difficult. It took everything to let her go ….I could feel her patting my shoulder as if to say, enough already Mom!!! Clearly she is stronger than I am.

10:34AM – First incision was made ….and so it begins. Prayers welcome.

10:44AM – My symbols of faith, hope and healing. Trying to stay positive and to find peace in the wait.

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12:17PM – Genevieve is on bypass. Praying for a successful valve rebuild / replacement and that she comes off bypass smoothly. I hate this.

1:38PM – No update. Keeping busy and trying to remember to take care of myself, too (with a photo of a cup of soup from Au Bon Pain – anyone that has stayed at Boston Children’s Hospital has a love/hate relationship with the 24 hour location in the lobby)

1:48PM – Small update – they are starting to take Genevieve off bypass. She is not off yet and we don’t know how successful the surgery was …but we are getting closer to being done.

3:13PM – She is off bypass, heart function looks good – no regurgitation (leaking) and no stenosis (narrowing). Dr Baird is happy and we hope to be able to see her in an hour or so. Feeling a bit overwhelmed, teary and thankful.

4:14PM -Arghhhhh. I just want to see my baby!!!!! This waiting is making me crazy.

6:17PM – With my Genevieve now in the Cardiac ICU. She looks like she has been through a war and is still fighting. Hoping to bring her out of sedation and get the breathing tube out sometime tonight.

8:14 PM – Al’s post when Genevieve battled through the sedation with the breathing tube still in: Even while swimming through a haze of medications, my little girl still makes two fists as she opens her eyes.

My response to him: And had her sedation upped twice to get her back under. I don’t like seeing the terror in her eyes like that.

January 28th at 2:16AM – Update on my princess G. The breathing tube is out. She squeezed my hand and spoke to me a little. I got an “I love you”, “where’s daddy?” and a stern “where did you sleep?” – as I had promised her that I would sleep in her room all the nights that she was here. And I will. She’s got this.

There are many blog posts swimming around in my head from the past 6 days, I am going to end this one with my most recent Facebook post on February 1st . . .

February is Heart Month and we celebrated the first day of it by taking our daughter, Genevieve, home just 5 days post open heart surgery. Her strength inspires me. It will carry her through when others try to diminish and claim her power. Her magic is all her own and comes from within. She has got this – always.

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