04 November 2014

"Uncovering" Talent

I read an article today on leadership published by Deloitte University’s Leadership Center for Inclusion entitled Uncovering Talent: A New Model of Inclusion.  The paper was written with the corporate world in mind but as I read, I found that their model also applies some to my life as a mother to a son with Down syndrome.  The basic tenant of the article centered on a term called “covering”.  Covering is defined by the concept that individuals with known stigmatized identities made a “great effort to keep the stigma from looming large”.  One of the examples cited by the authors was about how President Franklin Delano Roosevelt ensured he was always seated behind a table before his Cabinet entered.  President Roosevelt was not hiding his disability – everyone knew he was in a wheelchair.  However, he was covering, making sure his disability was in the background of the interaction.

The article made me ponder the concept of “covering” in regards to raising a child with a disability, particularly one with Down syndrome (Ds)… what is it about being “different” that people don’t like?  I often find myself reflecting on what it would have felt like to have had a child with Ds born in an earlier decade… a time when my sweet boy would have been called an ugly term like “mongoloid” or an “imbecile” by those closest to us – our friends and family… a time when our trusted doctors would have suggested that he be segregated from our family and institutionalized so we weren’t “burdened” by his differences… a time when he wouldn’t have had the right to a meaningful education provided by educators, some of whom would have likely been neighbors within our own community.  Just think about how parents during those times were required to “cover” for their children because our society was so incredibly far from the concept of inclusion… I’ve even heard extreme stories about how some families would lock children with Ds in their bedrooms when they’d host friends and family so others wouldn’t have to “deal” with them.  I’m glad I live in a different world today when it comes to raising a child with special needs.   

Recently I had someone tell me… “I applaud you for how you and your husband care for your son [with Down syndrome], it must be a lot of work”… my response was “It is a lot of work, but its no less work than it takes to raise our typically developing son, it’s just that we’ve had to focus on different things.  Regardless of how much work it is to be a parent, raising any child is truly a labor of love and I wouldn’t trade either of my children for the world.”  The joy that I derive from even the most insignificant moments of life with my kids is unlike anything else I’ve ever experienced… both of our kids bring different personalities and strengths to our family and the way they complement one another has been an amazing gift from God that touches my heart each and every day. 

For different reasons over the last few years and on a constantly evolving continuum, I’ve pondered the idea of inclusion for children with special needs amongst one another and also amongst their typically developing peers.  The more I’ve learned, the more I’ve felt moved to share the value of inclusion for children like Luke.  Although I didn’t know there was a defined method to uncovering talent by utilizing the axes mentioned below before today, for quite some time now, I’ve been working in an attempt to improve the environment for inclusion when it comes to Luke and how he’s received by others.   

The concept of “covering” is further defined within the article above along four axes amongst which individuals can cover:

Appearance… early on Dustin and I recognized the fact that Luke having Ds would never be a secret… from the moment that he entered the world, his physical features would always be a tell-tale sign to those who looked at him.  It doesn’t mean that he’s any less beautiful, just that while he closely resembles his brother, he also has some subtleties that align him with others who are affected by Ds.  When it comes to mannerisms, Luke has already displayed a natural tendency for affection, especially when it comes to sharing the most incredible hugs and the kid has a strong preference for music… any and every beat he hears seems to overtake his soul and results in bounces, sways, head bobs, rhythmic claps and any other way he discovers to express his particular groove.  I can see how the intensity he feels towards affection and music could possibly be overwhelming to some and while I think it will be important for us to teach Luke how meaningful it will always be for him to be true to himself, there is also value in managing your own personal space and the personal space of others.   

Affiliation speaks to the desire to hide a true identify and a related attempt to negate associated stereotypes.  What I’ve found interesting about the common stereotypes connected with Ds is that they are just that… stereotypes!  One of the best experiences I’ve had as a mother to a son with Ds is watching him exceed the limits that outdated stereotypes have placed on him and others with an extra 21st chromosome.  There is no doubt that Luke has exhibited delays in many areas, some of which could even be defined as significant delays when you compare his progress to others his age on a typical developmental chart, but Luke is ABLE and in a positive, supportive and inclusive environment, Luke will succeed and will maybe even exceed the limits placed on him by others. 

Advocacy… I’ve been fortunate to have joined the ranks of special needs motherhood behind decades of prior parent advocates… others who have paved the way and stood up for the rights of their loved ones affected by a disability or delay.  It’s important to me to advocate for equality and inclusion and I’ve been incredibly blessed with friends and family who have embraced our efforts… our family even had over 20 people drive to Cleveland this past summer to join us for the annual Buddy Walk to support Down syndrome in our community.  I had a Facebook friend who shared nearly every one of my 31 educational tidbits about Ds recently during “October is Ds Awareness Month” and I can’t tell you the number of people who have told me they have a heightened awareness for Ds now that they’ve met Luke… I pray that their interaction with Luke will inspire them to be his advocates as he grows older. 

Association with others who are parents to young children with Ds or those who are parents to children with other special needs has been, at times, the lifeblood that’s sustained me when the goings been rough.  From a personal perspective, early on in our diagnosis, association with others played a key factor when it came to understanding and accepting the role that Ds would likely play in our lives.  Support from others who have stood in our shoes has been invaluable in knowing that we aren’t alone on this journey!!

03 November 2014

Mommy, that girl looks like my brother, Lukie Dukie

It happened.  Last night, Matthew recognized that his brother looked “different”.   

Over the last few years I’ve become friends with dozens of others mothers across the country to children with Down syndrome (Ds)on Facebook.  I’ve also “liked” and “joined” dozens of pages and groups specific to Ds.  These resources have been invaluable to me as I’ve tackled the learning curve associated with becoming the mother to a child with special needs and an enormous side benefit has been the presence of their beautiful children in my newsfeed every day.  I’ve literally watched them grow, take their first steps, communicate via sign, etc. I know about them as individuals and I’ve enjoyed them immensely!   

Last night Matthew was sitting in my lap as I was scanning my newsfeed while we were watching TV and out of the blue he pointed to the photo of a little girl about Luke’s age with Ds on my phone and said “she looks like my brother”.  I was caught off guard and asked him to repeat what he’d said like I hadn’t heard him the first time… more definitively he told me “mommy, that girl looks like my brother, Lukie Dukie”.  I tried to probe him, to see what he’d identified as looking the same to which he responded, “I don’t know”.  I never was able to get him to tell me how they looked alike… he went back to watching TV while my heart sank a little.  He wasn’t derogatory or negative… he was actually quite matter-of-fact.  Ever since our prenatal diagnosis of Luke having Ds (which happened the week that Matthew turned one year old), I’ve wondered how having a brother with Ds would affect him… obviously I’ve always known that Matthew would recognize his brother was different than him at some point, I just never knew when it would happen…

Dustin and I, our friends and family, and Luke’s doctors and therapists (3 of whom are physically in our home every week) openly talk about Ds, it’s a part of our life now and it’s not common for a day or two to pass without someone mentioning the term.  I know Matthew’s heard it a hundred times or more so I’d always just assumed that he instinctively understood what it meant as he’s overheard so many of our conversations.  I let the conversation pass last night but resolved that the next time Matthew mentions someone “looking like his brother” to specifically talk with him about Luke having Down syndrome.  Considering he just turned 3 a few months ago, I’m not planning to go into great detail about what it means but am hoping that providing a name to explain the commonalities between Luke and his friends with Ds will help Matthew to internalize that our family isn’t alone when it comes to loving someone with Down syndrome.

02 November 2014

Thank You Mr. McKay!

I should have posted this months ago... when we participated in the 2014 Northeast Ohio Buddy Walk back in July, Luke had a very special monetary donation to our team, it was from a generous young man who we know as a Jersey breeder from the dairy world who left this comment along with his donation:

"Luke, You are an inspiration to my everyday life. When I look at things you have overcome and always with a smile on your face, it makes me strive to live life a little happier. You and your family are always in my thoughts and prayers."

Sam McKay, I want you to know that this comment has brought me to tears on more than one occasion (today included) and times when I'm feeling down in the dumps, I've come back to this comment to raise my spirits!  Please know that our family appreciates your support and kindness!  Hope we see you soon!!

05 September 2014

What is Early Intervention?

If someone asked you to define "Early Intervention" off the cuff... what would you say?
  • Stop something before it starts?
  • Take someone's hand early in a process and guide them towards success?
  • Interrupt an act before a potentially negative consequence ensues?
If you would have asked me to define "Early Intervention" a few years ago, I likely would have come up with one of the easy answers above.  If you were to ask me today, however I'm still not exactly sure how I would respond, but it would be be specific to my experience as Luke's mom and would go something like this...

"Early intervention is federally mandated by Part C of legislation entitled Individuals with Disabilities Education Act or IDEA, which was last amended in 2004 and is executed by the US Department of Education, Office of Special Education Programs.  This legislation passes the responsiblity to each of the 50 states and in Ohio, it's called out in our administrative code, where the Ohio Department of Education then passes the buck [literally] to each of our 88 counties.  Part C of IDEA is what mandates an Individualized Family Service Plan (IFSP) to those with disabilities between birth and the age of 3, when they transition to preschool and graduate to a full fledged Individualized Education Plan (IEP).  I've been studying IDEA and Ohio's Administrative Code pretty heavily lately in an attempt to understand what Luke is entitled to when it comes to developmental and educational services and I must say it's a pretty overwhelming task to try to understand and internalize legal mumbo-jumbo.  I'll continue reading and networking with other parents as I continue my quest to learn how to be the best mom I can be and will update with more on early intervention and how they're helping Luke to meet his full potential in the future!"

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Early Intervention Individualized Family Service Plan and Service Delivery.

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Definitions.

25 August 2014

1st Day of Preschool for Matthew

Today was Matthew's first day of preschool... it took some pretty direct questioning on my part, but here is his recap of the afternoon:



"I made a bridge for my truck and trailer.  It fitted.  It was just for me.  I hooked up my truck and tailer and hauled a car over the bridge.  Ms. Ranita read lots and lots of books.  I cried because I missed you.  I rode a 4-wheeler on the playground and it drove me.  I played puzzles, two of them.  They were animal puzzles.  I ate Goldfish and drank all my apple juice.  Me and my friends played with Play-Doh and they drank apple juice too.  That's all we have"



Matthew did cry when we left but his teacher reported that he recovered pretty quickly and he was fine for the rest of the afternoon.  Also, on the way home he got upset because he couldn't see his "pack-pack" (aka backpack) which made him think he left it at school... that also made him cry!  Once he realized it was next to him on the seat he was excited to show us the papers in his folder!  He also shared that he's excited to go back to school later this week!

Way to go Matthew!  You're one awesome little guy! 

19 August 2014

Matthew is 3!

Happy birthday sweet boy!  Meeting you was one of the best days of my entire life and I treasure every moment, kiss, smile and laugh that we share! You are a dream come true!!







01 August 2014

I was born for a purpose


Over the course of the last week I've found myself plumb, smack-dab, right-in-the-middle of a situation I didn't solicit.  As the events have unraveled over the span of about six days, at times I've been left feeling lost, helpless and more or less, mostly just plain confused.  Don't worry, it's not something major with the hubs or our kids, but it will likely affect us all to some degree at some point in our future.

It just feels odd to have been so completely blind-sided and the only thing I know to do is to ask God how he wants me to help make things better under the circumstances.  And even more than that, I know that I have to keep my heart wide open so I'm able to hear Him when he reveals what my role is supposed to be.  Even though I don't know the specifics of how things will play out, I do have faith that God will guide and equip me with knowledge and energy and above all, He will provide everything I need to do His work... whatever that may be!

Dear Lord,  I am your faithful servant...  I want to do Your work and abide by Your will.  I trust You to lovingly care for me, guide me and provide me with the tools I need to accomplish the tasks at hand.  Please help me to maintain an open mind and a willing heart and help me to share Your love, peace and forgiveness with others in my life.  In Your name I pray, Amen.

23 July 2014

First Steps!!

So what if the kid was battling an unknown-at-the-time pneumonia, that sure wasn't going to keep him down!  Luke took four steps unassisted yesterday!

22 July 2014

Song Connected Memories - My Country Playlist

I've been listening to so much music lately and for some reason I've been gravitating to a mix of current and old-timey 80's country.  These are the [very eclectic] "Top 10" songs on my playlist right now.  Weird mix, right?

10. Lettin' The Night Roll - Justin Moore
Aside from being super short, Justin Moore is basically awesome!  His music is just real and pays tribute to growing up in a small town... Good stuff!  I recently read that he moved him family back to his hometown and out of Nashville so his girls could go to the same school he grew up in - how cool is that?

9. Here You Come Again - Dolly Parton
It's Dolly... what else is there to say?  Aside from big hair and pegged pants, good 80's stuff is just good!

8. Like A Wreckin' Ball - Eric Church
So this song may be a bit "um, suggestive" *blushing* but it's one that I find myself playing over and over...

7. Don't It Make My Brown Eyes Blue - Crystal Gayle
So I have brown eyes and have always thought blue and green eyes were so beautiful, maybe I just like this one because sometimes the grass is just greener on the other side of the fence?

6. Swayin' - Cole Swindell
Yea.... so, Cole Swindell... He's opened for Luke Bryan the last two times I've had tickets but both times I missed him opening and now that he has finally released his debut album, I wish I would've seen him (...but have no fear, I have tickets for Luke Bryan - and Cole Swindell - both nights at Blossom next month :) I love that he's a great songwriter and actually pens his own music!  He has some serious talent!

5. She Get Me High - Luke Bryan
Aside from this being sung by my one-and-only, all-time-favorite "Country Man", Luke Bryan... this is just a fun, upbeat song!

4. Dirt - Florida Georgia Line
I love how this song just takes you to this place of appreciation for your roots and community and how there is a really special meaning attached to the dirt beneath your feet.  I've been thinking this is an anthem of sorts...

"You get your hands in it plant your roots in it/Dusty head lights dance with your boots in it (dirt)/You write her name on it spin your tires on it/Build your corn field, whiskey bonfires on it (dirt)/You bet your life on it (yeah)

It's that elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on and when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/her blue eyed summer time smile/Looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt
 
You've mixed some sweat with it taken a shovel to it/You've stuck some crosses and some painted goal posts through it (dirt)/You know you came from it (dirt)/And some day you'll return to it

This elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on/And when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/Her blue eyed summer time smile looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt (dirt, dirt, dirt)
 
You know you came from it (dirt) and some day you'll return to it/This elm shade red rust clay you grew up on/That plowed up ground that your dad damned his luck on/That post game party field you circle up on/And when it rains you get stuck on/Drift a cloud back behind county roads that you run up/The mud on her jeans that she peeled off and hung up/Her blue eyed summer time smile looks so good that it hurts/Makes you wanna build A 10 percent down white picket fence house on this dirt/You know you came from it and some day you'll return to it."

3. I Fell In Love Again Last Night - Forester Sisters
I remember singing along to this on the radio as a young girl....

2. Keep It To Yourself - Kacey Musgraves
I recently downloaded Kacey Musgraves' album, Same Trailer Different Park after watching an episode of CMT Crossroads that featured her and Katy Perry.. from the first time I listened to the album, I've been so in love with her! I don't know why I was such a late adopter of her music, but she's pretty great!

1. I Told You So - Randy Travis
His whole album "Always & Forever" actually has been on repeat for me lately.... there's something nostalgic about Randy Travis and particularly the songs on this album for me... reminds me of when in retrospect, I was really just a kid, but in many ways felt so "grown up" [which is odd since this really isn't music for a young'en] but nonetheless, it's true.  Eric Church actually reminds us of the concept of "song connected memories" in Springsteen and when I hear this music I think of when I used to listen to this album on cassette tape (remember that manual process of "eject","flip" and "re-insert"? ...And God forbid the tape would get stuck...) and I think about driving backroads with this on and I just feel good... and full... and happy about a time when I was "just a kid".  Did you know there is actually a science behind the music memory connection?  Cool stuff, but I digress...

I've also been listening to a lot of Dixie Chicks... hate their politics, love their music and stuff by newer artists Brett Eldredge and Thomas Rhett.  And The Judds... Mama He's Crazy and Why Not Me?  I could go on and on...

I LOVE music... it's such a shame that I can't carry a tune to save my life!

06 July 2014

Please vote for Luke!

I entered Luke into a beautiful baby contest sponsored by one of our local television stations... please consider voting for him if you have a chance!  Vote for Luke!!

22 June 2014

3:39 AM: I can't sleep

3:39 AM: I can't sleep.  I've resigned to do what all crazy people do when they're wide awake in the middle of the night... blog. 

Last night a friend asked me "How are you, really? You seem great, but I wanted to make sure. Are you okay?"  I've been chewing on that question for the last few hours...  By nature I'm someone who generally reflects often and historically I've used the 25 minute commute home from work to consider the day's events...  what went well, what could I have done differently, what needs to be tackled next, mental planning for the evening, review of events upcoming later in the week, etc., etc.  That approach has worked well for me in the past, however considering that I've been off work for a few weeks now caring for Luke, I haven't had that same block of time set aside each day to just think.  My friend's line of questioning was the probing that I needed to spend some time in quiet reflection, even if it did leave me sleepless!


"How are you, really?"
After a few hours of mentally replaying the last few weeks' experiences... my simple response... I'm good!  No doubt, we've been through a roller coaster of emotions the last few years with much anticipation of Luke's heart surgery being the climax.  There was initially so much learning that needed to happen to understand what we were dealing with and then all of the planning to actually get us to Boston was no small feat.  Once we were there though, things took a very natural progression and fortunately everything was orchestrated by the experts in the hospital... the scheduling, the intensive care that Luke required post-op, our housing, etc.  All of the pre-op appointments were scheduled back to back to back the day before surgery so there wasn't much time to think, only time to do.  I recall wondering to myself "is this really happening?", "is tomorrow really the day?"  Luke had been waking multiple times each night in the year leading up to surgery (unfortunately that hasn't changed with the surgery now being complete!) and after a draining and utterly exhausting day of pre-op, I specifically called out to the Lord that night... asking him for a full night's rest for Dustin, Luke and myself.  When we woke the next morning, Dustin's first comment was "wow, can you believe we slept all night?!?"  He gave me a high five after I responded, "I know, wasn't it awesome?  I asked God for that when I prayed last night!"  It's not often that prayers are immediately answered and I took that as a great comfort that morning.  We had to be at the hospital at 6 AM and by 7:30, he'd been taken back and things were set in motion.  There was no turning back.  He needed the surgery to give his body a chance at living a long life, most children who had gone without this repair in prior decades hadn't lived to see ten years old.  As we headed to the cafeteria to grab breakfast and a cup of coffee, I was at peace.  I was comforted by the prayers I knew so many were offering up on our behalf, not just in that moment, but in the weeks and months prior.  On that day in particular, we had no other choice than to "let go, let God".  

The next few days were absolutely exhausting.  Living in a hospital is not fun, sleep doesn't come easy and shared bathrooms are by no means comfortable, but we made it.  The hardest part was seeing Luke uncomfortable during his recovery, he cried out in pain a lot in the days after surgery and when the sedation had been lifted enough that he was more alert, he just wanted to be held... which was cumbersome to do when you had to deal with IV fluid lines, an arterial line, a central line, EKG lines and a pulse ox.  It seemed like just as soon as you'd pick him up and get all the lines untangled so you could sit down, one of the many lines wouldn't be quite long enough, so it'd require working to get situated again and it never failed that as soon as you'd get comfortable, someone would stop in to get vitals, administer meds, etc. and you'd have to start all over.  Additionally, Luke had a very rare post-op complication, Subcutaneous Emphysema.  This is actually so rare that even with Boston being the number one facility for Pediatric Open Heart surgery, where they perform over 1000 open heart surgeries annually, they told us that they see this complication less than one time per year.  Our cardiologist there told us that in her 30-year career, this was her first time to witness this post operatively.  We heard fellows and nurses tell us that it was "perplexing" and "strange".  Fortunately it eventually resolved on it's own, but for the first few days, it was worrysome in that we didn't know where it was coming from (and even after a number of tests, we never definitively learned the source).  

Nine days following surgery we were home from Boston and after a post op check-up in Cleveland went well a few days later, we thought we were home free until we hit another road bump.  Nearly three weeks after Luke's open heart surgery, I noticed his chest didn't look normal when he'd breathe.. he was retracting sub coastally and also jugularly and his incision was protruding about an inch from his chest wall.  When you'd pick him up, you could feel the middle of his sternum grinding... the edges of the bone rubbing together where they'd been separated to allow access to his thoracic cavity during his heart surgery.  We later learned that the medical term is "Sternal Dehiscence", which is often caused by a severe (and can lead to) a life threatening bone infection that becomes septic.  This is a pretty rare complication of open heart surgery and it's said to occur around 2% of the time.  Fortunately, during Luke's emergency sternal reconstruction operation last week, the surgeon didn't find any infection.  He replaced the original heavy gauge sutures with six stainless steel wires to fix the sternum in place.  He's now five days post op and seems to be doing okay aside from being pretty needy. 

As I think back through everything, one concept sticks with me... perseverance in faith even through life's challenges... the more you exercise your faith, the stronger it will become.  This has been so true for me, I cannot imagine how we could have gotten through this otherwise.  Every day, we are witnesses to God's unending love.  Lately, we have felt Him graciously answering our prayers... the big one, getting Luke through a successful heart repair and even helping us through the small stuff like allowing us a full night's sleep the night before surgery.  He has sent so many amazing people into our lives and has re-connected us with others, particularly for me, He has brought one of my favorite childhood friends back into my life and I am overjoyed with the opportunity to get to know her again!  Before we left for Boston, while we were in Boston and even after returning from Boston, we received so many cards and gifts in the mail it was nearly mind boggling.  A friend drive 16 hours round trip to visit us in Boston while family and friends rallied at home to do work around our yard so we could come home to less work.  The way people have surrounded us with love and support has been absolutely overwhelming and has filled me with such an amazing gratitude.  Even on days that life feels kinda tough, I know that I am blessed!

5:42 AM: Signing off and heading back to bed...

15 June 2014

Father's Day 2014

The best father I've ever known in my life.  He shows up.  Participates.  And more than that, he enjoys his children!  Matthew and Luke adore their dad and the list of ways he loves and cares for them is unending!  We love you Dustin!  Happy Father's Day!







04 June 2014

Wednesday Update: Post Op Day 6

Not sure how I've managed to not update this more frequently... That was definitely one of my goals heading into this experience! I'll have to be sure to do a complete report once we're home and I have a solid block of time to dedicate to documenting! We are finally back in Luke's room following his sedated echo this afternoon! He did great with the sedation and we just heard the results of the echo... A "patch margin ASD" remains, but should heal on its own in time and his valve and overall heart function look fine! His surgeon was one of the doctors reviewing the echo today and he was pleased with the results! 

A few fun things have happened for us today... Luke got his official "heart" pillow from the hospital, indicating that he had open heart surgery here, he was chosen for a photoshoot by the hospital's professional photographer and we are hopeful that they will use him on their website and / or Facebook page sometime soon and I was able to make a "Beads Of My Heart" bracelet to represent all of the different procedures and events that we've been through with Luke's heart journey.  I ended up with a string of beads too long for a bracelet so it may become a necklace or a bracelet that I double wrap... not completely sure, but either way, here is a listing of the meanings of each of the beads I was able to pick out...

Hospital Admission (NICU, Observation for Laryngomalacia, RSV, Heart Catheterization, Bronchiolitis, Pneumonia and Open Hear Surgery)
Ambulance Ride
Bath time in the hospital
Chaplaincy Visit
CICU Admission
Clinic Visit
Hospital Discharge
Fluid Restriction
New Diagnosis (Subcutaneous Emphasema)
Pre-op Visit
Starter Bead
Holiday in the Hospital (Christmas in the NICU)
New Baby (with a Congenital Heart Defect)
Visit to the Prouty Garden while admitted to Boston Children's 
Visit to the Playroom while admitted to Boston Children's 
Visit to the Resource Room while admitted to Boston Children's (for parent coffee hour)
Out of Bed!!
Arterial Line
Blood Draw
Catheterization
Central Line
Chest Tube
Chest Tube Removal
Chest X-ray 
Wound Dressing Change
Echocardiogram
EEG (at Cleveland Clinic)
EKG
Intubation
Extubation
IV Line
NG Tube (while in NICU at Cleveland Clinic)
Operating Room / Surgery
Pacing Wires / Lines Removed

31 May 2014

Saturday Morning Update - 2 Days Post Op

Luke had a good night last night, he slept well and woke up around 7AM as a pretty pleasant baby.  The air accumulation doesn't appear to have gotten worse but it also doesn't seem to have gotten better either.  Because it hasn't gotten worse, they have slowed down on the comments about taking him back to the OR and have decided to perform a barium swallow study instead at the point.  It sounds like if there is an esophageal tear, there won't be any intervention necessary as it would be expected to heal on its own... The main concern is that he can't eat until it's healed if that's the issue.  We are just sitting tight for now and don't have much else to report on his condition other than he appears to be doing well aside from the air under his skin.  

We had a super awesome surprise this morning, one of our best friends, Will showed up for a surprise visit!! He over 8 hours one way to get here, from Pennsylvania to see us! We are so blessed to have such awesome people in our lives!!


30 May 2014

Rough Morning

We've had a rough start to the morning. Yesterday's heart repair went great and all is well there. We were told to expect some puffiness throughout Luke's body following him being on bypass. He was extubated last night and afterwards he was doing well so we went out of the hospital, across the street for dinner and a much needed break following a long and stressful day.  When we returned to the hospital, Luke was extremely puffy and his left side was extremely distended, including his chest, neck, back, face and especially his left eye which was swollen shut.  The thought at that point was that it was dependent edema from him sleeping on his left side while we were gone.  The swelling didn't decease and by midnight, they began X-rays to attempt to figure out what was going on.  The X-rays were then repeated at 6:30 and 10:30 AM.  They are showing air under Luke's skin, which indicates that he has subcutaneous emphysema. The emphysema in and of itself apparently isn't very concerning, the real issue is trying to figure out where the air is coming from and why there is a leak.  The plan is to repeat the X-ray this afternoon and if it shows that the amount of air hasn't decreased, he will go back to the operating room under general anesthesia for some exploratory looks inside his esophagus as there is a concern that he may have an esophageal perforation or tear that is allowing air to escape and travel under his skin when he takes a breath. The thought is that damage could have been done to his esophagus during an echocardiogram scope procedure through his esophagus during his heart surgery or possibly when he was extubated last evening.  

With the concern of a tear in his esophagus, he isn't allowed to have anything orally, including medications or food.  Additionally, he has ripped out all of his IVs over the last 18 hours so he was just sedated again and there is an IV tech here now attempting to re-place two IV lines so he can receive medication and fluid to keep him from becoming dehydrated since he can't eat.  He is extremely irritable and "hangry" as we say in our home (hungry and angry) and also seems to be in pain from the heart surgery incision and all of the swelling.  He will likely remain in the ICU through tomorrow, if not longer.  



20 May 2014

Move Outta The Way, PediaSure!

In only 9 more days, Luke's heart will be mended and we will be well on our way to saying goodbye to all this medical formula!!

You know your child's heart condition is becoming serious when you notice that they're no longer gaining weight... that happened for us nearly 6 months ago, just after Christmas.  The temporary solution we came up with was to convert Luke from whole milk, which has 150 calories per 8 ounces to Pediasure, which has 240 calories per 8 ounces.  Today we re-stocked our inventory and now have a very heavy 7 cases of PediaSure lining our shelves. 

When we get home from Boston, hopefully Luke will be transitioning back to whole milk and I'll have more room for canned goods once again!!


13 May 2014

Why We Are Celebrating

The days pass and blur together.  Nervous energy overtakes me at times and I find myself needing to move.  To do something, anything.  Although battling a tough cold, I've still earned substantial satisfaction over the last few days working in the yard and around the exterior of our home... hand scrubbing algae with bleach water from our gray vinyl siding, planting beautiful containers of flowers, digging up, splitting and transplanting perennials, planting 32 asparagus crowns as well as tomatoes and bell peppers, painting lawn furniture and our front door.. I've always wanted a red door...  Last week, I caught myself organizing the items I'd placed on the conveyor belt while checking out at a local big box store - like items together and then by size and color... frantically trying to get it all in order while the belt was moving... the cashier surely thought I was having a major OCD moment!  I had to make a conscious effort at one point during my little episode to place my hands on the handle of the cart so I could resist the urge to keep them busy with pointless filler activity - I'm afraid of how out of control I might be if I didn't have a keen sense of self awareness?  Many of the lists I've made over the last few months have all their items checked off and all I have left to do is pack our bags for Boston.  It's been 21 months since we learned prenatally that Luke would need open heart surgery and over the course of nearly the last two years, I've googled as many combinations of relevant keywords that I could come up with, sometimes repeating the same combinations thinking I just might find something new.  My mind has become so conditioned with a deep need to prepare, to research and to learn about what to expect for this upcoming event that quite honestly I'm a bit afraid of how I'll find enough other things to fill my thoughts once this is all over.  I think back to the days I used to take time to enjoy reading for pleasure and the concept of having strings of hours long enough to pour through an entire series becomes almost mind boggling. 

Soon this season of our lives will be over.  Like most of the things we experience, it will probably become one of those events you reflect on that loses just a little more detail and gains more fuzz with each passing year until it just becomes one small puzzle piece of your past.  That's actually part of why I feel energized and rejuvenated through journaling... it becomes a way to document. A personal way for me to remember so I can grow from experience. A way to force myself to think through the process with logical thoughts.  A way to dig down for organic, self-induced and word inspired peace and hope.  Journaling has also become a way for me to communicate - to what end? I'm not exactly sure...  and surprisingly, it seems that people are actually reading my blog.  I watch the counter continue to tick away and often receive feedback from family and friends about my posts, but sometimes it leaves me feeling awkward.  Exposed.  Even so, I find a need to keep writing.  This experience has blessed our family with such a wonderful opportunity to connect with people in our community we'd never had a reason to get to know in the past.  As I sit in silent reflection about how our lives have been opened to new relationships and concepts, I am overcome with such an intense feeling of love and gratitude... fullness, really.  As I became a mother for the first time, I was awed by the incredible stretching power of the heart to love and that awe was only deepened the second time around.  I didn't know that the heart could expand even further until the last year or so as we welcomed so many new friendships throughout our community.  Even on individual days when there are minutes or sometimes even hours of nervous energy that fills my body, I am comforted by the love and support of our friends - those who have been with us for many of life's adventures and those who are new to our park of many amusements. 

Over the last few weeks, we have been showered with love and support... personal visits, prayers, cards, emails, text messages, facebook messages and care packages have created a sense of celebration in our lives.  After some pondering about what it is we could possibly be celebrating as we stare straight into the face of open heart surgery... it's really pretty simple... FAITH and LOVE are always reasons to celebrate and they fill each day with so much joy!!  Thank you to everyone who has reached out to support our family, we are forever grateful for your kindness!

10 May 2014

Luke's Heart Surgery is Delayed

It's taken me nearly 24 hours to deal with the disappointment we were dealt yesterday, the day before we were set to leave for Boston, when we learned that Luke was battling a cold which would keep him from being a candidate for surgery this coming Tuesday.  Every last detail was ready for us to load up and take off this morning... but instead... we're still here.  I came home from Luke's pediatrician appointment so let down that I crawled into bed at 5 PM yesterday and didn't re-emerge until around 9:30 this morning when I realized that my exhaustion was probably a combination of riding a mental roller coaster full of continual ups and downs, burning the candle at both ends as I attempted to work from home last week while spending the evenings preparing for an extended stay away from home and finally because I too have come down with the same cold that appears to be taking it's toll on our wee little one.  After keeping him in isolation and a near full-out quarrantine for almost one month, it felt so defeating for him to fall ill about 16 hours before we'd leave home to begin our adventure in mending his heart. 

When will his surgery happen, you may be wondering?  Well, we're wondering that same information too...  Apparently his surgeon is currently scheduling into August and September (which sounds about right since we'd had his surgery scheduled since February for May).  We are holding out hope that they will be able to work him in much sooner however, like within the next couple of weeks, althought it won't likely be until sometime next week that we hear from cardiac scheduling with an update.  Until then we just wait and pray for Luke's quick healing from his current illness.

We had friends stop over with a care package for our trip just after we'd returned from the pediatrician yesterday and they reminded us that our plans are not the same as God's plans and we talked about keeping your faith, especially as you face the unknown. We also received a card yesterday in which another friend reminded us of Philippians 4:6-7 "Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God which surpasses all comprehension will guard your hearts and your minds in Christ Jesus".  It's through the peace that only Christ can bring us, that wait for news to reach us of when Luke will be rescheduled for his open heart surgery.  As we seek some fresh perspective and some distance from yesterday's events, Dustin and I are planning to take to the woods for a few hours this afternoon to hunt for the usually elusive morel mushroom.  I've never found one during any of my half hearted scouting attempts in prior years... maybe today will be my day!

08 May 2014

Today Should Have Been "The Day"

Today was supposed to be the day for Luke's open heart surgery, but due to our surgeon having an international trip extended through this week, Luke's operation was moved to next week.  When things were first rescheduled, I was initially irritated with the prospect of having to re-organize all of our arrangements but now that those things have all been completed (again!), it's been nice to have just one more week as a family before our upheaval to Boston.

There is something else on my mind today and it's the conglomeration of people behind "Team Luke" and also the larger effort I've heard referred to as "Team Taylor".  It is the most absolutely wonderful feeling to have so many caring people in our lives.  For nearly the last two and a half weeks, we haven't gone one day without receiving a care package or card (or two or three) in the mail... items have come to us all the way from Canada, Tennessee and even from all the way across our great state of Ohio.  We've been touched by co-workers, friends and family and even acquaintances from Facebook support groups for families of individuals with Down Syndrome.  Emails, text messages and notifications that we're on another church's prayer chain fill our hearts with love, hope and joy.  I've had a few people make comments to me recently about how "strong" we are or how our "positivity" is admirable, but quite honestly... yes, there may be some of that coming from within our own beings, but it's reinforced and strengthened by the outpouring of love we've received from so many special and amazing people each day.  When you experience something like we have over the last two years... a surprise pregnancy well before your first child's first birthday, learning prenatally that the surprise baby was bringing more surprises in the forms of a major congenital heart defect and a diagnosis of Down syndrome and then the subsequent complexities that come along with him being admitted to the hospital four times in the coming year for issues like RSV, a heart cath, bronchiolitis and pneumonia, you learn to rely on faith or you get crushed by the weight of the world.  I recently had a conversation with a friend who lost her young son to cancer and one of her comments really resonated with me, "When you feel like you have nothing else in the world, you can always count on your faith to get you through the unimaginable"... she was so right...

As I try to make sense of life (which is probably pointless as it's impossible to understand the unique complexities of God's plans), I am comforted by the belief that God has orchestrated something wonderful for each of us.  As I reflect each day and pray each night I know that I have been prepared for where my life is headed... with each experience and each relationship formed, I am being guided to where I am supposed to go.. it reminds me of the poem "Footprints in the Sand" by Mary Stevenson.

One night I had a dream--
I dreamed I was walking along the beach with the Lord
and across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints,
one belonged to me and the other to the Lord.
When the last scene of my life flashed before me,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
there was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life.
This really bothered me and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
you would walk with me all the way,
but I have noticed that during the most troublesome times in my life
there is only one set of footprints.
"I don't understand why in times when I needed you most,
you should leave me."
The Lord replied, "My precious, precious child,
I love you and I would never, never leave you
during your times of trial and suffering.
"When you saw only one set of footprints,
it was then that I carried you."

I can't change the reality of Luke's need for open heart surgery.  It is real and it will be happening in just a few short days... I am, however, optimistic towards the prospect of his heart being fixed and for us to eliminate the challenge that his sweet, pudgy, beautiful little body has to overcome with every heartbeat, which happens about 130 times every minute of every day.  The Lord has prepared us for this event and I know He will be with us every step of the way!

07 May 2014

Sedated Echo During Pre-Op

So I didn't realize until this morning when I answered a call from a Boston area code that ended up being a nurse in the hospital's sedation department that Luke would be receiving a sedated echo as part of his pre-op next Monday.  I'm not surprised that sedation is part of the work up, it actually makes complete sense, I was just unprepared for a call from the sedation nurse in advance of next week. 

She and I spent about about 20 minutes discussing Luke's medical history as his diagnosis of laryngomalacia/tracheomalacia will dictate his sedation plan and the medication they will use.  She took the information from our conversation and will use it as she consults with her colleauges to devise a proper plan so they can back into the proper feeding guidelines for Luke prior to the sedation. 

Luke's echo is scheduled for a 10 AM and depending on the sedation plan chosen, the sedation process could start around 9 AM or possibly earlier - regardless of the plan chosen, we are supposed to be reporting at 7:30 am to the cardiac pre-op area. 

The sedated echo will include the following individuals:
  • Echo stenographer
  • Nurse
  • Physician/Cardiologist
I'm waiting from a return call from the nurse today or tomorrow to learn of the feeding guidelines they will be recommending for us to follow to prepare for the procedure.

02 May 2014

Boston Children's Hospital Fact Sheet

I continue to research Boston Children's Hospital... only for reassurance that we've made the right decision if nothing else.  Here is a "Fact Sheet" I recently discovered about their heart center.  It offers a great overview of the facility, but also includes statistics around the procedures they perform as well as the outcomes.  The fact sheet states that in 2013, they completed 860 open heart surgeries with a 98.5% survival rate which seems pretty outstanding! 
 

27 April 2014

The Beauty of Spring

Springtime has arrived in Ohio!

I spent the weekend working outdoors and it was wonderful! We pulled out the deck furniture and after noticing a number of nicks and scratches to the paint of my vintage glider, decided it was time to apply a fresh coat of paint! After it dried, the vibrant cushions were set back in place and wow, it sure did feel good to sit down for a few minutes to rest, relax and enjoy the serenity of nature. Birds chirping. Warm sun shining. A breeze blowing through the trees... rattling our deep, tenor windchime. Mixed with the scent of our freshly mown grass was the smell of smoke from the burn pile wafting through the air, easing the burden and mental clutter of papers collected and ready to be discarded following some intense indoor spring cleaning. And the dirt under my nails.... there isn't much better during early spring than cleaning out the flowerbeds, sitting beside blooming daffodils, making way for the colorful, petite and fragrant blossoms of summer.. impatiens, petunias and snapdragons, watching the ground as some perennials are already beginning to peek out of the soil and reach for the sun... and the earthy smell of fresh black mulch... I just can't imagine there can be a whole lot more inspiring in life than the wonder of mother nature.

Following our recent celebration of Easter, I couldn't help but spend my quiet time in the flowerbeds thinking about the rebirth and inevitable cleansing that comes with the season of spring. Getting rid of the dead, shriveled and brown leaves to make room for the green life of summer. Letting go of mistakes, burdens and wrong-doings, making room in our hearts for forgiveness and love. Choosing to have faith in the good Lord above and thanking Him for the blessings of every day. Today I am thankful for the beauty and purpose of every single living thing in nature!

20 April 2014

Sometimes we all need a gentle reminder of God's Love / Surgery plan update

I haven't written for a while... I've needed some space and have been using much of my free time to think, reflect and to pray.

The last time I wrote, I was feeling anxious about an upcoming conference call with Luke's surgeon.  I felt responsible for making the right decisions and the stress that came with that was a heavy burden.  Shortly after writing here last time, the Lord sent a friend to our home to pray with our family.  During our visit, we read some scripture and he reminded us to trust in the plan that God has for our family.  After our friend left that day, I spent the afternoon reflecting on how we've gotten to this place... how we came to the decision to go to Boston for Luke's repair.  Of the families we'd met throughout the last year who had also traveled from our general geographical vicinity, 11 hours one way, to Boston for open heart surgery.  Those people who came into our lives at different and unexpected times that had brought us their experiences.  Because of their recommendations, we'd been led choosing to go there ourselves.  I truly believe God was guiding our thought process as we learned the complexities of Luke's specific issues and how different facilities were equipped to deal with them in various ways.  Ultimately, I have to give Him credit for leading us to the best place with the surgeon best skilled to make the repair.

With that positive reminder to trust in God's plan, we entered the conference call that evening with our surgeon in good spirits.  He was confident (as you'd expect), yet was still respectful (as you'd certainly hope).  I continue to be amazed at the new things we are still learning each and every time we have a discussion about Luke's heart.  We've talked about many of the same concepts with different people and each time, there seems to be a new twist to how the information is presented.  Considering this was "the guy", "our surgeon", "the man" who will be doing the job, we took his words with high regard and considered them to trump anything else we've heard from other cardio-thorasic surgeons or cardiologists.  Here are the highlights from our discussion:
  •  Currently, the plan will be to use Luke's own pericardium (fatty tissue surrounding the heart) to patch the ASD and VSD holes.  They will shave some of the pericardium off around the heart and because they will be using tissue native to Luke's body, there is no risk of him rejecting a patch made of synthetic material.  Additionally, the risk of him developing an infection from a synthetic is also diminished!!  Finally, because the pericardium is living tissue, it will have the ability to fuse and regenerate, making it a great long term solution for the repair.
  • One of the most severe risks of the surgery is the potential for Luke to need a permanent pacemaker as a result of the operation.  Apparently, there are microscopic or possibly even invisible pathways where the body's natural electricity runs through the heart tissue, creating a natural pacemaker.  Although it can't be seen by the human eye, it generally runs through the same area in every person - as such, the surgeon just avoids making an incision in that general area.  The catch is that it doesn't always run through the normal place and if it's damaged, it's unlikely that it will repair itself.  As a precaution, Luke will have pacemaker wires placed during his surgery.  My understanding is that it could be 24 - 48 hours until we are certain of whether or not his natural pacemaker was damaged.  
  •  The entire operation should take somewhere between 6 and 8 hours although the actual heart procedure will probably only last somewhere between 60 and 90 minutes.  The entire process will include him being fully sedated, the ventilator will be placed and once it's in the airway, Luke will have a small probe inserted down his throat and into his esophagus which they will use to perform an echo cardiogram to take more pictures and video of his heart.  Apparently this will place the probe closer to his heart than a traditional echo and will allow them to get a better idea of what to expect when they enter the heart.  Next his chest will be opened and the lines for the heart lung bypass machine will be inserted into his arteries .  Prior to making any incisions on his heart, the heart will be injected with cardioplegia, a mixture of potassium and nutrients that will cause the heart to stop beating so the surgeon can work in a bloodless environment.  The heart procedure will be completed, his heart will be restarted and they will complete another of the esophageal echos to validate that the repair worked correctly.  Supposing that's the case, they will close him, bring him up from anesthesia and we will finally get to see him!

It's a lot to consider, but we are praying for continued strength to get through the next few weeks!  We have been receiving some wonderful cards of encouragement in the mail over the course of the last week or so and they have been a tremendous help!  I've been putting each of them in a large envelope in our kitchen and have pulled each of them out a few times to read when I've needed encouragement.  I'm also planning to take them along with us on our trip to read in the waiting room and to display in Luke's recovery room!  We've also even received a few gifts for us to use towards and during our trip... we have been so blessed with loving family and friends!  Thank you so much for wrapping us in God's love and helping us during this journey!!

Coloring Easter Eggs

Today is the day that the Lord has risen!  To celebrate, we visited with family today, ate a wonderful meal and colored Easter Eggs! 








13 April 2014

Easter Egg Hunting

Today we spent the day with some of Dustin's family.. one of the highlights for the kids was playing outside and searching for Easter Eggs and then of course, eating the chocolate and candies that were hidden inside!



 


 




02 April 2014

36 Days and Counting...

We have 36 days until surgery.  I wish I could stop time. Suspend it in mid air. Freeze today's frame.

Hold my baby and never let go.

I think I've done well managing our stress... my daily anxieties... although I've begun to feel it catching up with me.  I can hardly sit still.  When I have a moment where I am able to relax, I find myself relishing in busy-ness. To-do lists that never end.  Creating lists reminding myself to make other lists.  Half loads of laundry.  Painting my nails.  Switching clothes in the kids closets and dressers up to the next size.  Cleaning spots on the carpet.  Doing things that could otherwise wait, trying to take my mind off our impending trip and that moment when Luke's heart will be injected with medicine to make it stop beating... that moment when the heart-lung bypass machine will start thumping, pumping and oxygenating Luke's blood on his behalf while his heart is cut and sewn by his surgeon. 

As I read the words I'm writing, inwardly I'm torn between wondering if this is all undue drama or just good-old-fashioned healthy motherly concern.  Maybe it's both.  Regardless, I'm terrified and I'm nearly in complete meltdown mode.  Sometimes I think I could breakdown at any moment and other times I feel strong, hardened by the power of knowledge.   I started crying at my desk last week at work as I looked a photo of sweet Luke on my desk.. envisioning him laying naked on that cold, sterile, steel operating table without a heartbeat.  No wonder I feel anxious... I can't stop my brain from wondering.  When I get to this place, I work hard to pull myself back... while this is a big event for us, these people do this as a profession.  They do it every week of every year.  Our surgeon is an expert with Luke's specific type of defect.  This surgery has a high rate of success. 

He will be okay.  In fact he will be better than okay, he will be better off after the repair than he was before. 

Breathe. 

Let go, let God.  Keep praying and loving.  While not without our earthly challenges, my life is very blessed... now, where did I put that to-do list?

Special Needs Grants

I stumbled across this resource last evening that outlined specific resources who can assist with obtaining educational support for children (and in some cases, adults) with special needs. Many of the grant programs are available for technology like iPads!

Special Needs Educational Funding

28 March 2014

Preschool. Really, Already?

Matthew will be 3 on his birthday later this summer. 

It's hard to believe it's time for him to be starting preschool already!  I just learned today that he made it off the long waiting list and into an afternoon class for the 2014-2015 school year!

The class is "integrated" and each of the morning and afternoon sessions has 12 students.  The morning session is what's considered a special education room and as such is made up of 8 students with IEPs and 4 students without IEPs.  The afternoon session is not considered a special ed class, but still will have 6 students with IEPs and 6 students without.  I'm so excited for Matthew to participate in this classroom and am equally excited that his brother will join him in his preschool class next year when he's aged out of the Help Me Grow program. 

He will attend school for two and a half hours each day four days per week!  I'm so excited for him to participate next year, I'm sure he will love meeting new friends and having an opportunity to play and learn!!

I have an appointment in a few weeks to meet with the folks from the preschool to get all of his paperwork completed!

25 March 2014

A New Blog: This Life I Live

This Life I Live by Rory Feek of the country duo Joey & Rory is an awesome blog written from the perspective of a father to three daughters, the youngest recently diagnosed at birth with Down syndrome.  As a lover of country music, I've heard Joey & Rory on radio, seen their TV show in the past and have also seen them on country music award shows so I was surprised when I learned this morning that they have joined our community of families who love someone with DS.  Welcome to the club Joey & Rory, you are in for a beautiful ride! 

24 March 2014

Cardiac Overview / Update - 45 Days Until Surgery

Today we are exactly 45 days out from Luke's open heart sugery.  I can't believe it, 45 days.  When I started my "countdown" on the calendar a while back I certainly didn't expect the days to roll by so quickly.  When we learned of Luke's heart defect prenatally in August 2012 (which was over a year and a half ago), I was truly a different person.  I knew nothing of cardiac anatomy nor special needs.  My thought process was so much more narrow, although I didn't realize it at the time.  Not to say I'm by any means an expert at this point, but I do feel like I've had an opportunity to learn so much about Luke's various diagnoses and I do at least feel educated for the most part.  Interestingly however, it's surprising to me that following so many appointments and tests and discussions about his heart... I continue to learn more about his specific defect. 

At the highest level, the heart is responsible for moving oxygen poor (blue) blood to the lungs via the right ventricle through the pulmonary artery to the lungs, where capilaries infuse the blood with oxygen (it becomes red) and is then sent through pulmonary veins to the left ventricle where it is pumped through the body.  The body uses the oxygen, the blue blood returns to the right side of the heart, is oxygenated by the lungs, becomes red, pumps to the left side of the heart and so on.  The US Department of Health and Human Services has a great webpage dedicated to "How Your Heart Works" if you're interested in gaining a high level, but still detailed overview of the organ that is in charge of operating the body's circulatory system. 

In Luke's specific defect, Atrioventricular Canal Defect or AV Canal for short, there are a number of structural problems present.  He has a hole between the top two atrial chambers known as an Atrial Septal Defect or ASD.  He also has a second hole between the bottom two ventricular chambers known as a Ventricular Septal Defect or VSD.  Additionally, he has one valve that we refer to as a "common mitral valve" that in a normal heart would be referred to as two separate valves, a Tricuspid Valve that would connect the right ventricle's atrial and ventricular chambers and a Mitral valve that would connect the left ventricle's atrial and ventricular chambers.  In an AV Canal defect, The ASD is placed towards the bottom of the atrial chambers and the VSD is placed towards the top of the ventricular chambers so they end up meeting in the middle to create one large 2D hole in the middle of the heart, which when combined with the common mitral valve creates a 3D hole that connects many various components.  As a result of this anatomical defect, some of the oxygenated or red blood in the left ventricle that has just come from the lungs and is ready to be circulated throughout the body ends up passing across the VSD and mixing with the blue or de-oxygenated blood creating a right to left shunt.  (My understanding is that the left to right shunt creates a loud "wooshing" sound - a murmur that is heard with a stethoscope).  The extra volume or blood pressure in the right ventricle, if left uncorrected - over time cause will cause the ventricle to become enlarged which is considered to be irreversible damage.  Because there is now extra blood in the right ventricle and it has to go somewhere, it passes through the pulmonary artery to the lungs, where pulmonary hypertension is often detected due to the increased volume of blood present there.  Over time, again - left uncorrected, the lungs will become enlarged which is also considered irreversible. 

Individuals with this defect typically undergo open heart surgery to repair the defect between two and six months of age due to failure to thrive/poor weight gain as the body burns more calories than it consumes because the heart has to work so hard to pump blood and / or because of poor oxygenation due to the shunting which causes the skin to be gray, blue or purple.  In Luke's case we are waiting until he is 16.5 months old for the repair based on the findings of a heart catheterization that was performed when he was four months old.  We learned during that procedure that an unusual piece of cardiac tissue grew up to cover a portion of his VSD so blood flowing across that area of the defect is less than you'd expect, which helped us to understand why he wasn't showing the clinical signs of heart failure - failure to thrive and / or poor oxygenation.  To repair the ASD and VSD, our surgeon will patch each of the holes with a synthetic material.  Additionally, Luke's heart isn't equally balanced - typically, the right and left ventricles should be the same size, but his heart has a mild to moderate right ventricle dominance (which for a period of time prenatally had us worried that we'd have to do a single ventricle repair of his AV Canal, which would be much less than ideal).  The right ventricle dominance becomes important when considering the common mitral valve that will be split into two valves as it will have to be split in equal proportion to the sizes of each side of his heart.  I recently learned that this becomes even more complicated for Luke because the papillary muscles that are responsible for contracting during systole to prevent regurgitation of blood into the atria and that line the exterior of the common mitral valve are placed very close together. These are the muscles that will attach the valves to the correct chambers of the heart during the repair and they will have to be separated when the valve is split.  This will require a very steady hand to be done correctly. 

Some other details we have recently learned are included below:
  • Nutrition is key leading up the surgery and we are starting him Pediasure immediately for the calories to help him gain weight and protein for it's vital role in healing muscles.
  • We are planning to be in Boston for 10-14 days for the repair - this is extended from the orignal expectation of 7-10 days because of Luke having laryngomalacia, which complicates the extubation process
  • It is highly likely that there will either be some leakiness or some stenosis or possibly both following the repair - the goal is that it's minor
  • The heart is living tissue that will continue to evolve after the repair. It will likely be years before we are aware of any possible muscle/valve deterioration, including leaky valves or valve stenosis.
  • In general, individuals with DS are at a greater risk of pulmonary hypertension over the course of their lifetime due to the combination of poor muscle tone and anatomically small airways - this can be a major contributor to an increased number of respiratory issues and is something we will always have to monitor very closely. 
  • We expect for surgery to last 6-8 hours, although 8 hours is on the long side - this will include the time it takes to get him under anaesthesia.
  • Following the surgery, the surgeon will come out to talk with us and we can expect to see Luke an hour to an hour and a half afterwards.
  • There are extrordinary precautions taken in the OR and CICU to mitigate infection including sterile environments and repeated handwashing. Infections are a huge quality metric for the hospital and something they take very seriously.
  • We should expect for Luke to come out of the OR with a fever and to have a fever for some period of time following the surgery. This is normal because during the surgery while Luke is on the heart/lung bypass machine, his white blood cells will come in contact with the plastic tubing within the machine and they will tell his body that the plastic is a foreign object - his body will respond as if it's fighting off the foreign object and a fever will ensue.
  • Following the surgery (while still in the hospital or shortly following discharge), minor infections like ear infections and tracheitis are fairly common.  That said, major infections like those of the breastbone and around or in the heart are very rare as a result of the surgery.
  • Luke will receive blood products/transfusion during the operation and we will need to validate that he doesn't become immune to the Hepatitis A vaccination following the repair. If this is the case, he could have an adverse reaction to the vaccination that will be due for him at his 18-month well child checkup with the pediatrician.
  • Average total recovery time is about 8 weeks. Once we are home from Boston, Luke will need to be isolated as much as possible from other people / germs for at least 4 weeks.

15 March 2014

MissionT21: Unexpected

Nearly two years ago, Dustin and I joined a special new community... made up of members spread out across the United States and beyond. 

We were brought together by Down syndrome. 

Although Luke was one of an estimated 220,000 individuals born across the globe each year with Down syndrome, in the moment that I learned of his diagnosis, I felt like I was living alone on an island... one that was primal and devoid of life.  However, as I began to explore my new habitat, I stated to become more comfortable being there.  I learned how to navigate the twisting roads, found fruit to nourish my body and could even feel God guiding me through the foreign place and along the way, I could tell that He was feeding my soul.  I finally discovered other humans living there.  We became friends... the kind of friends who knew what it was like to live away from what used to be their old homes. And the longer I lived there, in my heart, I knew that I could never leave.  The once seemingly deserted island had become the most wonderful home that I never even fathomed could exist on this earth.

Because of that experience and the extreme highs and lows that were a part of the journey, I joined a group of other parents with young children who have Down syndrome to share my story.  Together, we assembled the stories of our diagnoses to help others who are new members of our community.  Our goal is to show them that they are not alone. 

The compilation of our stories is entitled "Unexpected" and it includes stories of confirmed prenatal diagnoses (like ours), experiences from those who had "soft markers" that eventually led to their children being diagnosed at birth as well as what it was like for those who had no prenatal testing or soft markers and learned following their baby's birth that Down syndrome was now a part of their lives. 

This was a grassroots labor of love as the stories were written and shared without a stipend and the wonderful ladies who did the behind the scenes aggregation were not paid for their efforts.  We took on this project with the goal of getting our stories into the hands of as many medical providers as possible who are charged with delivering a diagnosis in the hopes that we could touch the lives of others who are now internalizing what it means to have a child with Down syndrome.

Mission T21: Unexpected

If you'd like to read our story, choose the link for "Prenatal" and then once on the table of contents for that section, scroll to the bottom and click on "Luke".