3 Months!

Titanium

With tear filled eyes, three months ago I said goodbye to my sleeping daughter.  I was about to undergo Open Heart Surgery and I was convinced this was the last time I was going to see that precious little girl.

The night before, Matt, my parents, Lee, Grace and myself had tried to have a calming evening with pizza and a dance party.  I knew everybody was on edge, but as always, my family rises to the occassion, and we turned a stressful event into a fun one.  As the evening progressed and everybody started to wind down, I was struck with an enormous mount of fear...no sh*t!  I was restless - Grace, Matt, my parents had gone to bed.  But Lee was up - so we started talking and talked and talked.  I think we talked until 1 or 2 in the morning and I had to be up by 5am.  I honestly can't remember exactly what we talked about but I remember feeling how great it was to connect with my sister.  We've always been close but over the years life has happened and really hasn't been much time for the two of us to connect, so in that moment I had my big sister to lean on and I loved it.  

Before I knew it, my alarm was going off and I had to "get ready" for surgery, meaning, I brushed my teeth and put a bra on, which would have to be taken off in 30 minutes anyway.  Lee was staying behind in the hotel room with Grace so Rita, my mother in law, could come and get her around 8am. That's when I had to say goodbye to Grace.  'Will this baby remmber me?'  'Will she know how much I loved her?'  All these existential life questions popping in my head and I just broke down.  I remember looking at her face, kissing her cheeks, holding her hands never wanting to let go.  I whispered in her ear how much I loved her, how proud I am of her, and how I'd always be with her - remember I was certain I was dying today. When I got up from kissing her for the last time I lost it. That's when I started to cry and didn't stop until they sedated me.  Not sobbing uncontrollably for two hours, but consistently on and off for the whole time.  In the elevator down, in the elevator up, seeing other children coming in for surgery, going into the hospital chapel, changing into my hospital gown, peeing, you name it - it brought me to tears.

Only two people could come back to the 'holding area' - you know the area that they make you anxiously await pre-surgery.  They stick you with big ass needles, try to comfort you but your body is already in flight mode.  I remember the surgeon coming in and asking me 'How are you feeling?' and what do you think happened??... I broke down crying i'm sniff sniff okay.  He took my hand and I remember him gentle rubbing my hand -- in a very approrpriate doctor bedside manner type of way. These hands that were comforting me where soon going to be cracking open my sternum and literally touching my heart.  

Next up was anesthesia - 'my best friends.' Nice guys, nice drugs, don't remember much of them, but I loved them.  Before I knew it, they were telling me they were taking me back.  I tearfully kissed Matt and my mom goodbye.  My mom whispered something I had told her my friend Isabel had said to me.... "The Universe Has You, We Got You."  I can't imagine being my mother - first, seeing me go through Cancer as a child, and now Open Heart Surgery as an adult.  Imagining myself in her shoes always make me tear up.  They injected me with a sedative, beacuse I remember I was sitting up and the second they put that into my IV, I felt dizzy and was groggy, I had to put my head down.  They started to wheel me away  and I remember taking one last glance back at Matt and my mom.  They were standing there strong but I knew the minute I was out of sight, that's when they could let go.

Wish I could say I remember going back to the OR, but I don't.  I think I remember them asking me to switch from the bed to the operating table, but I could've been dreaming that.  Next thing I knew I was waking up in the CVICU and Lee and Matt were coming in to see me.  Don't have much recollection of the next couple of hours, I was awake and talking but god knows what I said.  And apparently I was telling the nurses, I was the "party room."

Me shortly after surgery!

The first night was rough - the chest tube was horrendous.  I couldn't take a deep breath.  I couldn't sleep.  I was on fluid restrictions, so I think I got 200 ML for the first 24 hrs. My mom and Matt went to get some rest and Lee was already on her way back to Austin, and my dad wanted to stay with me.  I'm soo glad he did.  He was attentive, nuturing, sweet, gentle, everything my father isn't normally ( just kidding), but now in hindsight - I truly wouldn't have wanted anybody else taking care of me that first night.

The rest of the hospital stay was uneventful - and dare I say, a little enjoyable.  I was released 4 days after my surgery... 4 days!!!  Modern medicine is a beautiful thing.  Matt and I stayed close to Houston for about a week at Pat and Rita's and I absolutely loved staying with them.  They took care of me, they made sure I was comfortable.  I'm so lucky to have married into such a wonderful family.    I got cleared to head back to Austin a week postop.  I walked, rested and watched a lot of trashy T.V during my recovery.  It was glorious.    This morning I went to the gym before work and I did an hour of circuit training -- 12 weeks ago I was laying heartbeatless on an operating table and today I'm here!

Me Recovering at the Casserly's

All of your love, support, well wishes, prayers, cards, flowers, gifts, etc....have been so appreciated.  I've been told that i'm a strong person, but the only reason why I'm strong is because I have you all behind me.

From the bottom of my mended heart

Thank you xoxox
Allie

It's Time Like These

It's Time Like These

It's been two months since I last wrote.  Soo little and soo much has happened in that time.  Summer has come and gone --- well the heat is still here in Texas, but the kiddos are back to school, traffic is abundant and college football starts this weekend!  Always such a great time here in Austin.  But the traffic nor weather has not been my central focus this past summer.  I want to tell you about my journey.....

So let me pick up where I left off..... They found a hole in my heart.  Awesome.  Solution - easy, go for a less invasive procedure where they thread a small device (metal/titanium) from your groin into your beating heart - plug up the hole, Voila!  You're good to go.  SCREECH (record stopping noise). Nothing in my life has been that easy, call me a pessimist, I doubted this all-too-easy-procedure.  I can't tell what it was but something in my gut said "Allie, research more and think before you leap." Believe me when the doctor first said they could fix this without surgery I was admitting myself into the hospital to get the procedure done.  But, something stopped me.  Maybe intuition, maybe timing... Matt and I were scheduled to go to Mexico for a friend's wedding three weeks after I found out about my condition, whatever it was, it stopped me from going through with the procedure which gave me more time to do research.   What I found out, scared me.  Maybe  it wouldn't scare others.  But this metal device that would plug up my heart has only been around for 20 years -- I know that's a long time in medicine.  But reports that I read, not internet forums, but published researched articles that I read kept giving me doubt about this "easy" procedure.  I thought short term versus long term.   I weighed risks of device versus surgery.  I prayed, cried and even went to a psychic to guide me on a choice to make.  haha I know silly to some, helpful to others. Throughout the process, I realized, I will never come from a place from judgement again,, er, I'll try not to!  Whatever helps you get through your situation - do it!

I have gotten endless amounts of love and support throughout the journey,  it honestly makes everyday a little bit more bearable.  One support system has been this online group that I joined.  My wonderful friend from college, put me in touch with a friend of hers that has a CHD (congenital heart defect), and this wonderful soul took time to speak to me, she informed me of a facebook group called the "The Zipper Sisters"  - and although I don't technically have a zipper scar, I don't feel judged, I don't feel silly asking millions of questions, and most of all I'm inspired with what these women face on a basis. After many questions and conversations later I found that I needed to get out of Austin to get a second opinion. .  I contacted Cleveland Clinic, Mayo Clinic, University of Chicago - they do robotic surgery, and lastly on a whim I emailed the Surgeon-in-Chief at Texas Children's Hospital in Houston.

I got a call from the surgeon that night,  I emailed him in the morning and that evening while I was playing with Grace, he called my cell.  Like we were old buddies.  He told me he would see me when I came to Houston and we could speak more about options.  For once in this journey, I felt happy.

Two weeks ago, I walked into Texas Children's Hospital, by far the oldest patient there,  Matt and I spent the entire day at the hospital while they administered an ECHO, EKG, XRAY and hooked me up to a holter monitor.  I sat in rooms with themes of Mickey Mouse, Goofy, Dora the Explorer.  Matt was giggling the whole time -- to be me it felt like home.  Remember, I spent many days/weeks in hospitals and cheerfully decorated examination rooms when I had Leukemia.  At 4 it was normal, at 16, it was a little odd, now at 32, it was comforting.   I was set to meet with the assistant director of the adult congenital heart program and Surgeon-in-Chief. (my old pen pal),  I honestly was prepared for them reiterate what the doctors in Austin told me.  Maybe getting the device would be the best option.  What the told me was not only did I have a sizable hole in my heart, but that I had two "leaky" valves that the surgeon was certain would be needing repair down the road....so weeks and weeks of wondering of how to correct this defect, device closure or surgery, vanished.   I was now told that surgery was my best option.  I've gone through every emotion you could imagine, but the shit storm of emotions have subsided a bit and I am feeling a little peace.



While I wait to confirm the date of my surgery, I thank you all for your continued support.