4 Years And No Regrets

This date: September 28^th is a date I will always remember. September 28, 2009....exactly 4 years ago I was in the Perinatologist's office... lying in a cold, sterile room while the sonographer was performing a level 2 sonogram. It should have been an exciting time in my life. I should have felt overjoyed. However, I didn't feel any of these emotions. I kept trying to look at the sonographer's face for clues that something was “wrong” or “right” as she moved her cold wand over my 17 week pregnant belly. Much to my dismay, she had a good poker face. The only time I managed to crack a smile was when she confirmed that the baby I was carrying was “still a boy.”

I found out 2 weeks prior that I was having a boy at my regular OB's office. Oh, how I wished I could go back time to that moment of pure joy...anything to get me out of this nightmare. The sonographer told me that the Doctor would be in to see me in a moment and left. I closed my eyes and prayed...please God, don't let my baby have Down syndrome.

For those whom aren't familiar, a perinatologist is a “high risk” OB doctor. I was referred to this perinatologist by my regular OB because my Quad screen blood work came back as “high risk” for Down syndrome.

The perinatologist came in and informed me that my baby had what is referred to as a “thick nucal fold.” This is also referred to as a “soft marker” for Down syndrome. There are several soft markers for Down syndrome. However, some fetuses have numerous soft markers and end up being born perfectly healthy and typical. The only way to find out “for sure” would be to have an amniocentesis. Of course, the doctor said “now would be the best time because you still have time and options.” I didn't know this then, but I do know now that 90% of babies with a prenatal diagnosis of Down syndrome are aborted.

“Based on your blood work, which came back as a 1 and 102 chance for Down syndrome and the thick nucal fold, I would say there's a total 2% chance your baby has Down syndrome.”

I told myself a 2% chance was relatively low. I also made the decision that an amniocentesis would NOT change the outcome of my pregnancy. I was also scared. But I knew termination was not an option. How could I terminate this sweet boy that I could not only see moving on a screen, but feel moving in my womb? My choice not to have an amniocentesis was the right choice for ME. Not all women who have a prenatal diagnosis via amniocentesis do so because they plan on aborting. I simply made this choice based on the fact that I was going to continue my pregnancy no matter what.

I'M SO GRATEFUL THAT I DID! The perinatologist's office is next door to Austin's Pediatrician. Every time we pass that office, I have the crazy urge to go in there and tell that doctor how amazing Austin is....and that I wouldn't change ANYTHING about him...how many lives he's touched...how many people look at Down syndrome differently after spending time with him. Most of all, I want to tell him I'm so glad I didn't follow his “expert medical advice.” 

 

 

 

 

Words cannot describe how thankful I am for this little boy. Statistically speaking, Austin is one of the “lucky ones.” While we didn't technically have a prenatal diagnosis- we knew it was a possibility. I don't look at Austin as “lucky” though. In fact, we are the lucky ones...blessed beyond belief by this wonderful little boy who constantly amazes us.

I'm so glad I chose AUSTIN! 

Part 2 November and December

November- I met with the school district's diagnostician to begin the process for Austin to start preschool. Austin and I both caught an awful stomach bug this month. Luckily, we recovered in time to go to Kerrville for Thanksgiving.

December- This month still seems like a bad dream. It was 9:35 in the morning, I was taking a shower-Austin was sitting outside the shower door with his favorite book (of the week), “Corduroy.” I had the Lady Antebellum station on Pandora playing when my phone rang. It was Katie's ringer. Hmm...that's odd. She normally wouldn't call me this early, but maybe she found an awesome “before Christmas sale” that she has to tell me about? I quickly rinsed the conditioner out of my hair, dried off,put my hair up in a towel and called her back. She didn't answer the phone like she normally would. Instead, all I heard were tears and panic. I couldn't make out her words, but I immediately knew something was terribly wrong. I went into panic mode...thinking something had happened to the girls (her daughters) or her dad. My panic turned to disbelief when she uttered the phrase:

“My mom is dead.”

She sobbed louder.

“My mom is dead. I can't believe this happening.”

Katie and I met in 4^th grade. She moved and then moved back in 10^th grade. Our friendship immediately started where it left off. I'm 28 days older than Katie; we have always considered ourselves sisters and best friends. We have always had a “sisterly” connection that cannot be explained unless you've experienced it. It reminds me of the connection that twins have been said to have. We were always in trouble at school for talking or laughing too much. Yes, we would have disagreements and argue like sisters. I think that's the sign of a TRUE friendship...we didn't always agree and sometimes we got on each others' nerves. However, those times never lasted long. We always “got over it” and moved on as if it never happened.

In the almost 20 years of our friendship, I have never heard Katie so distraught. Johnnie Sue( Katie's mom) turned 50 in October. She died of a heart attack on December 12, 2012. Growing up, Johnnie Sue was like a second mom to me....loving and fussing at me just as I was her own. After all, Katie and I were inseparable as teenagers. Katie and her mom were truly best friends. She was so proud of Katie. Most of all, she adored her precious granddaughters: Kiley Faith and Kallie Grace. Johnnie Sue's death was sudden and unexpected. No one should have to bury their mother at such a young age. Johnnie Sue was a Christian- so there is a sense of peace that she's with her Lord and Savior. However, it doesn't ease the pain of wanting her here.

The weeks after Johnnie Sue's death were surreal. I felt like Katie needed space and time to grieve. At the same time, I (selfishly) couldn't help but want to talk to her all the time...just to make sure she was okay- even though I already knew the answer. I came to the conclusion that my job was to simply just be here and know that Katie would reach out when she needed to. If anything it taught me the true meaning of, “IT'S NOT ABOUT YOU.” In other words, don't be selfish. It's paramount to not take anything personal or make it about YOU. There's nothing that can be said to ease the pain of losing your mother. That was the most frustrating part...wanting to help take the pain away and knowing it was impossible. I prayed so hard for Katie. I still pray, And I still wonder WHY?? I don't understand why Johnnie Sue was taken away at such a young age? But I do have faith that God works for the GOOD of those who LOVE him.

More of December- Austin had his testing for the preschool PPCD program. I was worried how it would go because I've heard a lot of “horror stories” from other parents. I was pleasantly surprised. My little guy did great. I will say that the testing could have gone smoother had we stayed with ECI- as ECI helps a lot with the transition to school. Due to the fact that ECI in our area was useless- we dis enrolled and have been in all private therapies since the Spring of 2011. Thankfully, the school district has amazing therapists! We are very blessed.

PART 3 COMING SOON!

Long OVERDUE Update, Part 1

It's been almost a year since I last updated this blog! To say that I've had writer's block would be an understatement.

July, August & September- We moved into our new house! Mommy went on a “You're Fired” spree and fired our Pediatric Cardiologist and ENT. Our Pediatric Cardiologist triple and quadruple booked patients...and while she was a nice person, I wasn't impressed with the way she ran her practice. We also found an awesome ENT who didn't give me the “it's just his facial structure” excuse. Austin had a tonsillectomy, new ear tubes and a second adenoidectomy (apparently they grow back.) He recovered well. My only regret is that we didn't get his tonsils out sooner!

October- I really wish I could fast forward through the last 3 months of 2012...but I'll start with the GOOD first. Austin met with his new Pediatric Cardiologist, Dr. L. He was highly recommended by a fellow mom/friend. Our experience with this PC Doctor was amazing. It was like night and day. The hole in Austin's heart is still large and shows no signs of closing on its own. He will undergo open heart surgery this Summer. We were hoping he would be a good candidate for the surgery that goes through his leg. However, we were very mislead and given incorrect information from our former PC.

The not so good started at the end of October. Ryan came home and had a look of horror and worry on his face. I immediately knew something was terribly wrong. He informed me that he just got off the phone with my mom. My dad had a heart attack. The rest is really blurry. I felt my knees getting weak...I slid to the ground as tears filled my eyes. Ryan assured me that my dad never lost consciousness. My mom didn't want me to be alone when I received the news- so she called Ryan on his way home.

The fact that my dad is still here defies logic. Statistically speaking, he should not be alive. God reminded us (yet again) that he is always in control. I'm constantly amazed by his grace. My mom wanted to go to San Antonio the day prior to his heart attack, but my dad told her, “No. I don't have a good feeling about today. Let's go tomorrow.” And that was it. They decided to go to San Antonio the very next afternoon. As they were entering San Antonio, my dad suddenly grabbed his chest. My mom knew something was terribly wrong, but just as soon as the chest pain started- it went away. A few minutes later the same thing happened and my mom immediately decided to take the first exit. She pulled into the Costco parking lot in San Antonio. To make a long story short, 911 was called. My dad told the paramedics he felt like he was having a panic attack. The paramedics told my mom they were going to take him to Methodist Hospital to get him “checked out.” They knew he was having a heart attack, but did not tell my mom- as she still had to drive to the ER separately in her car.

The ER doctor met my mom in the ER waiting room. He informed my mom that my dad was indeed having a heart attack. They were in the process of saving his life. They placed a stint in his heart to clear the blockage and allow the blood to flow.

Hours later, we learned this was no minor heart attack. It was a full blown widow maker- an ominous term used by those in the medical field. Dad's primary coronary artery was 100% blocked. As it would turn out, my dad had been experiencing symptoms for months- but kept them to himself. It's been said that people “sense” when they're approaching the end of life here on earth. My parents came to visit us a month prior to my dad's major heart attack. My dad and I had a conversation on the deck of my back porch that I will forever cherish and hold on to. It was a profound conversation that only fully made sense after my dad's heart attack. Dad was on the verge of death for months. He felt it. And he knew. HE KNEW IT, yet he didn't tell a soul.

God graciously intervened and let us (and especially dad) know that it wasn't his time yet.

Fate is a beautiful thing...

My parents rarely would've gone to San Antonio together. However, my mom had recently resigned from her job of 13 years to pursue something new. On any other Tuesday she would've been at work. My dad would've been driving alone. But on that particular day they were together and my mom was driving. San Antonio is about an hour from Kerrville. Kerrville is a small(er) town and the hospital there doesn't have the best reputation. The hospital in Kerrville would not have been able to save my dad. As fate would have it, my mom wanted to go to San Antonio the day before- but dad didn't have a good feeling. They went the next day...the day my dad had a heart attack that has approximate 5% survival rate. He was already near a hospital that was more than capable of saving his life. And THANK GOD they did.

Dad has recovered well. However, there is damage to his heart. He's more forgetful these days. He might have to retire earlier than he planned. But he's ALIVE. Thank God!

PART 2 COMING SOON!

Just Another Day in Paradise...

Or just another day in the life of a busy stay at home AND GO GO GO mom. ..

It’s been a busy week and it’s only Tuesday (technically it's almost Wednesday). Austin has been having a difficult time in Physical Therapy. He’s unable to concentrate and appears to be seeking out movement. This is often referred to as “Sensory Seeking Vestibular Sensations.”  Our awesome PT mentioned that his behavior seemed to coincide with some type of sensory issue. THANK GOD she noticed because I was convinced my child had endless energy and no fear.  I emailed our OT to discuss and she gave me some helpful tips that can be implemented in Austin’s daily routine.  I LOVE LOVE LOVE our therapists! I know I've stated this before, but words cannot descrive how awesome they are.

Some of Austin’s behaviors are age appropriate. However, a lot of his behavior coincides with a Vestibular Hyposensitivity.  I was never alarmed because Austin never seemed to shy away from bouncing, being thrown in the air, playing “airplane” or any type of activity that involves vigorous movement.  I thought Austin was “really tough” because he rarely seems to notice when he falls down, runs into something, etc. In fact, he laughs when I think he should be crying.  I also thought he was a “dare devil” because he literally seems to have no fear (yet, he’s careful in his own way when doing these fear filled activities- if that makes sense?)  He also LOVES the therapy swing (the kind where he’s basically wrapped up in a sheet and cannot see anything.)  Apparently, this type of movement calms him down. His OT had him in the swing for 10 minutes this morning and when she took him out he was incredibly calm and much less hyper. It was actually AMAZING to see.

There are other activities that we are going to incorporate into his daily life that will help him with this sensory issue. I believe I read (although I cannot recall where?) that all children with hypotonia (low muscle tone) have some type of sensory issue or issues.  I’m not sure if that statement is entirely true- as I don’t remember the source. It’s interesting to ponder though.

 Here are a few “traits” of a  Vestibular Hyposensitivity:

• Loves amusement park rides (he will when he’s old enough)
• Described as hyperactive – always running, jumping, and hopping (YES! He’s also been described as a “handful.” I prefer the term “hyperactive.”)
• Engages in rocking or rhythmic movements (Not that I’m aware of? At least not on his own? He likes to be rocked…but doesn’t rock himself necessarily.)
• Trouble sitting still or staying seated (Yes! However, would this not describe most 2 year olds?)
• May vigorously shake head or rock rhythmically (Sporadically, at most.)
• Crave intense movement including jumping, upside-down positions (YES!!)
• Enjoy swinging very high (The higher the better!)
• Loves seesaws, teeter totters or trampolines more than other children (YES!!)
• Can’t seem to sit still (Again, this describes most 2 year olds?)
• Likes spinning in circles (I suppose he does? He likes it when I’m holding him and spin in circles.)

I feel like I’m constantly on the GO! Austin goes to bed around 8:30. I can usually muster up enough energy to answer a few emails, fold laundry, take a shower and maybe watch a few shows on the DVR. It doesn’t look like things are going to slow down anytime soon- so we will just take everything in stride and keep on, keepin’ on.

It looks like I had time to update my blog tonight- which is always a plus! Life is good. God is great!  Until next time…

Sweet Summertime

We had a busy and fun 3-day weekend!  While it’s technically not summer, the temperature outside says otherwise.  Austin LOVES to be outside. In fact, I’m pretty sure he’d stay outside all day long if I let him.  We love to swim and go to the park. 

Here are some pictures from our Memorial Day Festivities.