The Gift Of Life: 10 Years In The Rearview Mirror

Ten years ago today was undoubtedly the longest day of my life. It didn't help that the night before was riddled with interruptions galore by several groups of medical staff trying to get an IV into a baby - causing her to cry and scream throughout the night. A night I felt so incredibly powerless to help soothe my baby, nor felt strong enough to tell them where to take their IV and shove it.  At that juncture, I didn't yet know I could dictate action, or tell them to stop. Ten years ago today, our Cardiothoracic surgeon/hero, Dr. Stephen Langley and his team, worked to fix the defects in my 13 week old baby's heart. It was her fourth surgery and absolutely her most critical.

Andi was enduring congestive heart failure pretty much since birth.  Her heart was working so hard, and yet causing so many problems, that she would've died had they not gone in at such a small, frail time to make the necessary repairs. Andi needed a Complete AV Canal - a complicated repair.  

Complete Atrioventricular Canal defect (CAVC)

A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.

Andi had a hole in her upper chamber, a hole in her lower chamber, and one large valve that needed to be turned into two small valves. The surgery would take all day and she would be on ECMO - a machine that sustained life, while they repaired her heart.

Our favorite nurse from the hospital floor we spent most of the previous four months stopped by to wish us luck the morning of surgery, Misti.  Since we hated our night nurse who insisted on torturing Andi the night before, we asked her if she would escort Andi to pre-op.  One of the first times we as parents, learned we could call the shots.  Misti whole-heartedly obliged and said not to worry, that she would take care of it.  We felt much more comfortable having her walk with us behind Andi's crib as they rolled her through several white-walled hallways, under what felt like severe bright lights. A labyrinth of white on white.

When we got into the pre-op room, we were met by her anesthesiologist, Dr. Woodward. This was his second time working on Andi, as he also handled her on her first surgery - bilateral choanal atresia. He asked how she was doing and we said that she was exhausted from being tortured all night as they tried to get an IV in her. He slammed his hand down on the counter and begged, 'why do they do that?' He continued to admit that he could give her something and get that IV without issue and all of us could've headed into this big surgery more rested.  This was a big deal to me, because it further showed me that I needed to use my voice and advocate for Andi.  Here it is ten years later, and I can still envision Dr. Woodward, and hear his voice. 

As we said our goodbyes, Misti walked us to the cardiology unit waiting room.  Thankfully, they did not put us in the usual waiting room, but in a private area, so we didn't have to endure the sounds of other people. They gave me a poster board, some pens, stickers, and had me capture some things about Andi.  A crafty distraction, and one I appreciated.  I remember my whole body just seemed to vibrate all day - as if I had too much coffee.  Yet, it was caused by fear and a lack of sleep. I was jumpy. I was anxious. I was more afraid than I'd ever been in my life. And despite being surrounded by family, I felt alone.  No one could say or do anything to reach me. I just had to suffer through it.

It was the longest day, and each time the nurse would call with an update, my stomach would churn. She would give an update like, 'she is sedated and intubated now.'  Appreciated, but given the situation, that nearly caused an ulcer.

I want to say they finished around 2 or 3 p.m., but I think it was even later than that, like closer to 5 p.m.  I honestly don't recall, as it was such an incredibly long day.  Dr. Langley came out to give us the update and he said she was doing well considering what she had just endured, and gave us a glimpse of what the next several days would be like... I think we all just professed our love to Dr. Langley for his work, his gift, and his efforts to repair our baby girl's heart.  I'm sure there were many tears.  

Andi would be sedated for days, making it so her body could rest and recover having the least amount of work to do.  She was cold to the touch and had more machines and monitors around her than ever.  Her PICU nurse gave us the rundown of what everything was, what it was doing for Andi, and why.  I remember being completely impressed and overwhelmed by the entire scene.  The room was dedicated to the baby in the crib, and all the machines around her, and little to nothing else. There was one or two chairs off to the side. The rest of the room just worked to sustain life. I have always made a conscious decision not to share pictures of what she looked like, but here it is the tenth anniversary of that incredibly difficult day and I think that stark memory appropriate to share today.

Because as strong as she is, and as much as she's been through - this surgery gifted her life. This surgery was absolutely critical to her.  We are, and forever will be humbly grateful to the many hands that worked hard to give us our baby girl back with a repaired heart that no longer was killing her. And here we are 10 years later, wow.  She just had her every-other-year cardiology check-up, her repaired valve still has a mild-to-moderate leak, but it isn't anything that is going to hurt her. Just something we will continue to monitor.  Like her cardiologist said two years ago, 'Dr. Langley couldn't have done a better job if he tried,'  Therefore, on this extra special ten year anniversary, I shout out a little louder our gratitude to Dr. Langley, Dr. Woodward, and all the other Dr's and Nurses that helped gift Andi life.  We are forever grateful and appreciative of your work and we will never forget you.
Thank you! Thank you!! Thank you!!!

Andi Turns 10!

Here is our yearly tradition, the birthday video. This is the 8th video made, the first one showcasing 0-3, 4, 5, 6, 7, 8, 9, and now 10... so much fun to capture her growth, development, and milestones in a visual that she can always access to buoy her on days she needs inspiration.

Double digits baby!!!  So proud of you! 

Celebrating Milestones: The Making Of A Mini Me.

Even at nine, we still experience the joy of celebrating small milestones.  Sometimes silently.  Sometimes loudly. But, despite the hurdles of years past, we still notice, pause and appreciate each and every little occasion.  We have to.

Almost a year ago, we moved into our house.  This amazing house with a glorious pool in the backyard.  Even today, Andi talks about her house with affection, or rather, appreciation.  Soon after we moved in and the dust settled, we had Andi start private swim lessons in our backyard.  Without the distraction of others around her, she would be better able to hear the instructor, and pay attention to the lesson.  Up until that time, we had never put Andi's head completely under water.  Never.  Not washing her hair in the tub, not by accident, not at all.  Enduring three sets of ear tubes to cease her chronic ear infections, I was a bit too cautious on getting her ears wet.  First and only kid, let alone one with complex medical issues, don't judge.  I was simply sick of all the antibiotics, the Dr's appointments, and that made me hyper-hyper aware of the things I could do to prevent more of the same.  

So,  I believe it was on her second lesson with "Gene-Gene, the swimming machine" where he got her to put her head under the water, with ear plugs!  Sadly, we only had a month of lessons before the pool had become too cold for her to continue through the fall. With her BAHA surgery, we were a bit delayed in starting back lessons while we awaited her abutments to heal and be cleared for water.  Once we started back though, the growth was obvious.  Her maturity, her strength, her determination and her love of the water all seemed to roll into one perfect celebration.

This is the first time Andi has ever actually swam. Filmed last week.

Then this afternoon, while we spent the day in the pool, I filmed this to showcase the monumental (to me) realization of how incredibly far she has come and how she has shattered another milestone.  She seemingly prefers being underwater these days.  Probably one place where her proprioceptive sense is most easily actualized.  

Celebrating Andi Bean is easy to do, but as we get further and further away from those dark days we were forced to endure, it's important for us to pause to celebrate these little milestones -- especially when they also fill her full of joy.  

I see Andi playing around in the pool.  Learning how to swim underwater to collect fish or rings at the bottom of the pool; walking hand over hand along the edge of the pool to deeper water; jumping up and down in the water; and I recognize my youth in these instances.  It instantly flashes me back to my summers spent at the pool with my friends, where we spent all day, every day in the pool.  From Memorial Day to Labor Day, there were few other places to find us.  So, seeing Andi do things I used to do in the pool, just further fills me with joy.  Not only because I see her progressing with her love of the water, but it reminds me of a simpler time in my own life.  I love that we're able to give her a childhood that mirrors one of my own, that is filled with joy, discovery, learning, growth and one incredibly zesty personality that is really starting to blossom.  She's not just a mermaid... she's a mini me. 

BAHA -- The Grande Finale

Last June, we went to see Dr. Steve for Andi's yearly audiogram.  After completing the test, he sat down with me and said he believed he could get Andi hearing a whole lot better than she currently was.  Intrigued, I listened.  Andi has worn an over the ear hearing aid since she was five months old.  Sound would be amplified by the hearing aid and travel through her ear, which was often congested - further diminishing quality sound.  Dr. Steve said, at 8 years old, Andi would definitely benefit from switching from a over-the-ear hearing aid, to a BAHA -- a Bone Anchored Hearing Aid.  These were both on the right side.  Her left ear is considered deaf or profound hearing loss.

He did a hearing comparison between the two devices - putting the BAHA on a soft band (headband).  The audiogram was all the proof we needed.  Andi left with a loaner BAHA on the head band and when we walked out of the office building, she stopped.  She questioned, 'what's that?'  I stopped and listened.  I asked her, 'do you mean the bird singing?' She replied, 'Yes!' So I asked pointedly, you haven't heard that before?  'No.'  Her eyes lit up and she was giddy.  I cried most of the way home.  It's amazing what we all take for granted, and yet, kids like Andi remind us to pause and savor what we have -- because she does not have it.  That day was simply joyful.

When we checked in with Dr. Steve again, he said he believed he could make her hear even better. At this appointment, we went from having a processor on just the right side, to putting a processor on both sides of her head.  With technology, they can program the sounds captured on the deaf side, and send it to the ear that hears.  Thus, possibly giving her a 360 hearing experience.  Andi noticed the change, and for the first time in her life, started hearing things coming from her left side.

At the end of November, we went in for part one of the BAHA surgery.  Dr. Torino drilled two screws into the bone behind both ears.  One screw holds a post, the other is a sleeper screw in case something happens to the other screw. We would wait six months to heal from this, enabling the bone to solidify around the screw. 

In mid-May 2019, we went back in to put the abutment on each post.  The abutment is the 'snap' that sticks out of her head - to which the processor clicks into.

So, yesterday, Andi met with Dr. Steve to have her BAHA processors attached to her new abutments! 

Attaching to abutments:

Andi's commentary:

Andi will 'rock you!'

Booth testing:

The audiogram showed improvement in overall hearing.  Below is audiogram comparison.  On the left is the over-the-ear hearing aid (A) -vs- the single BAHA processor on the soft band (B).  On the right, was yesterday's audiogram with the dual BAHA processors clipped directly to the abutments.

Her audiogram showed an improvement, but he said that she will notice the difference more than her audiogram will show.

But, this is Andi... she wanted to tell you herself:

Dad, I hope you enjoy hearing her use of 'Whatevah!'  I have the feeling that is a word I will likely suffer for quite some time. 

Andi Turns 9!

While we celebrate the birth month (2 weeks before, 2 weeks after the actual birthday) we leave you with this video to enjoy a look back on the incredible year she has enjoyed!

Surgery #11 ... but who's counting?

This morning marks yet another sarcastic celebration, surgery #11.  Oh yeah, cuz when I was pregnant, I just couldn't wait to hand over my kid to not just the surgeon, but the anesthesiologist, eleven separate times.  Oh yeah, it's every parent's dream come true.

Sarcasm aside, I've been awake well before the rooster.  Not out of fear, but the horrid kink in my neck.  Must have been that 15 minutes of working-out I did two whole days ago.  Won't be doing THAT again anytime soon.  *kidding!*  But yeah, surgery days tend to conjure all the emotions and fears that parents like me choke down day after day, stifle with food & beverage, or keep at bay with a series of bad jokes.  Ok, not all the jokes are bad -- but, whatever.  We all have our ways of coping. 

Last night, I stole this picture from someone on Facebook. 

Reading this really resonated with me and our experience.  In fact, I believe I wrote about it in this blog.  Yes, third post in August 2010:  http://amazingandi.blogspot.com/2010/08/kaiser-permanente-rent-baby-program.html  
This is so true.  The real work started when I got home because I had no help.  I had to learn how to place the OG tube, (tube that went down her mouth directly into her stomach -- every 2.5 - 3 hours)... I had to learn how to push her medicines through the OG tube, and later, the G-Tube.  How to take care of a leaking g-tube site.  How to know when her breathing was too fast or too labored - because her diuretic dosages were off.  I remember one of our first days home alone from the hospital like it was yesterday.  Her breathing seemed more labored, and I didn't yet know, nor trust, my gut -- my parent's intuition.  I remember waiting until a respectable hour, either 6 or 7 a.m. to page her pediatrician -- who told me to call day or night, but... I was trying to be considerate... little did I know he was probably already at the hospital making rounds to check on the kids he saw.  When I got him on the phone he said, 'without a doubt, if you suspect something is different... please take her to the ER.  Now.'  So - that we did.  Turns out her diuretic dose was off.  It was a constant battle of "too wet" or "too dry" -- the diuretics helping with the battle between her heart defect, and the pressure that was putting on her lungs.  Blue blood -vs- red blood.  Oh my -- I do not miss those days.
In any case, the picture above speaks volumes to me. The NICU was the easy part.  The rest of the year, was easily the toughest year I've ever endured.  Fast forward to almost our ninth year here... and Andi is thriving.  She's been discharged from PT at school, reduced to a 1/2 hour a month "consult" of OT at school. We had her evaluated for outside OT therapy this week and they deemed her not needing this service anymore.  We've graduated, and writing that fills my throat with emotion that I choke down.  We have been in some sort of therapy since October 2010.  Yes, her early intervention started when she was home from the hospital - post heart surgery.   In two weeks, her Medicaid coverage through the Katie Beckett Deeming Waiver - (secondary insurance that covered easily $1200. a month of therapy services) - will cease to cover her, because she no longer receives 5 hours of therapy services a week.  To all the people that don't want to support social service programs, state provided assistance -- kids like Andi are the gleaming beacon of light that programs like this help.  It's because of the past four years of outside of school services she has been afforded through this program, that helped get her here.  There were many hands at work to help Andi get to where she is.  I often hear, it's because of you - and what great parents you are... and I beg to differ...  I mean, yeah, I'm fabulous and all *insert Cher hair toss here*, but it's really the many hands that have helped guide, steer, strengthen, invested, and taught Andi -- that have got her to this level.  In addition to the Princess herself -- she herself has made it all of it happen.  Without her work, perseverance, strength and downright stubbornness -- none of the others would have such an effect.  So, I yet again say thank you to the many hands that have helped lead us here.  And, to the Georgia Katie Beckett Deeming Waiver program, I say, "thank you, but you are no longer needed!"  Honestly, without that program, Andi would not have had 3 hours of therapy a week to help propel her to her current level of awesomeness.  

So, back to today... surgery #11.  A fairly "minor procedure" but none-the-less, a procedure.  We are going in to have the abutments attached to her BAHA posts.  So, end of November last year, her ENT surgeon, Dr. Torino, put the screws/posts into her skull, behind both ears.  We've waited the 6 months to put in the second part - which is the abutment.  The 'snap' that will stick out of her head - so she can attach her processors to, once the skin heals.  So, when we get there (a few weeks) -- she will lose the ugly tan headband that her processors attach to - and she'll start connecting those directly to her skull. It is likely that her hearing at the higher octaves will improve, due to the direct connection.  Being a girl, she'll easily be able to hide her processors under her hair.  Hopefully, technology will continue to advance, and those processors will grow smaller and smaller.  The process of today's surgery is that she will be put under, and Dr. Torino will press on her skull firmly to locate the posts. Once she determines best location, she will basically take something like a paper hole punch (but for the skin) and open the area to access the post, and screw in the abutment.  Ooh, you're not eating ... are you?!  Sorry - I'm numb to all this shizzle.  She won't be able to wash her hair for a few days, and won't be able to put her head under water in the pool for a few weeks - while we let the skin heal around the abutments. 

So... it's a quick, "minor" procedure - because putting the posts in was the tough part of BAHA (bone-anchored hearing aid)... but, it is still a surgery.   So, put out your good vibes for our lil' Andi Bean - and let's all energize this to remain 'a minor procedure.'  

The Village

Here it is Mother's Day 2019, and I'm saddled with the question, 'What Does Mother's Day Mean To Me?' As we all get older, and we lose people close to us, these Hallmark Holiday's seem to shift meaning.  For me, I lost my Mom less than two months before my wedding in 2005.  While, I'm not that sharp to do the math, I believe that was a long ass time ago.  It doesn't matter.  There isn't a day where I don't think of her, nor catch a glimpse of her in my personality.  She's with me, no matter where I go.  She built into Andi, and Andi never met her.  Regardless, it's fun to watch.  I see my step-Mom in Andi, and am thankful for that.  I see my step-sister in Andi, and am thankful for that.  Our young seem to be comprised of the people they encounter, those people shape them to become the people they are.  In turn, I can hear one of my best girlfriend's say, 'I am not necessarily a product of my family, but a product of the people I've chosen to surround myself by.'  Powerful.

In turn, these "holiday's" force me to pause and remember all the many, many things, many people, that it took us to get us where we are today.  Words like, "I don't know how you do it" flow over my ears on days like this, because I know that none of this was due to one person (well, minus her genius heart surgeon that "couldn't have done a better job!" (current cardiologist)...)  It took a village.  It took people not only supporting Andi, but those that rallied around me.  I think back to those dark days, where Kajsa - Andi's early intervention OT, was essentially my best friend.  Keeping not only Andi's torticollis stretched, but, my sanity in-tact.  Those in-home visits were crucial to home-bound people like us. 

But, again, on days like this - I don't necessarily stop to think of me.  I think of so many of my Mom friends who have lost their babies, their children, who - on days like today are hurting.  In our CHARGE community, it's too much.  So many of these Mom's are the ones my mind gravitates toward on days like today.  So, on that note, I tip my hat to you Momma. You have my heart.  Your children are on my mind.

And to my lady-friends who don't have children... you actually are a major part of it all.  You're a part of a village of women supporting others.  So, keep in mind - and I have specific ladies in mind here...  You were a major part of my village supporting me in crisis... so yes, you too, are celebrated.  With my whole heart, I thank you!

Parenthood isn't one person.  Motherhood isn't one person.  It's an army surrounding the child, the mother, the father, the entire family unit.  In good times, and in bad.  It's the village that holds them all up.  

And on that note, Andi's part two of her BAHA will be this Thursday.  Luckily, Poppa and Ginga will be coming to join me as we sit through a relatively 'easy' procedure.  However, it being her 11th, it still produces a level of PTSD for the previous procedures or surgeries that maybe weren't so easy.  It's again, a part of the village that comes to stabilize the unit.  That is what I celebrate on days like today.