Monday, June 16, 2014

Five Years Later


It seems like a lifetime ago, yet I can recall each and every detail so vividly and clearly.

We weren't expecting it. We certainly didn't ask for it. We never dreamed it would become our reality.

And yet, there we were. We found ourselves in a Perinatologist's office and were awaiting the official results of the high-risk ultrasound we just completed on our unborn baby boy -- our first son -- our sweet Chase.

There are no words to express how it feels to hear the child you are carrying inside you has a heart defect that is fatal without a series of invasive treatments beginning immediately following his birth.

There are no words to express how it feels to have the joy and expectation of your child's healthy future so suddenly ripped from your heart.

There are no words to express how it feels to fear leaving the hospital with empty arms and a broken heart rather than with your new bundle of joy.

There are no words to express how it feels to become a "Heart Mom." But that's exactly what I became that day. And now, exactly five years later, I wouldn't trade a moment of it for the world! Of course I wish my son had been born healthy, but God---in His infinite wisdom---knew that we were the perfect parents for Chase, and we have been blessed beyond measure to see Him working right in front of our eyes! Chase is every bit a living, breathing miracle of the love and blessings of God and I could not be more thankful to be on this journey as his mommy.

But I often think of how our world was turned upside-down that fateful Tuesday morning. I can easily recall those unimaginable emotions I had never before felt in my lifetime. I remember what it felt like to be told my unborn son was not healthy and learn how his future was very much in jeopardy.
On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. G, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the perinatologist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. H. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. H did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

I have never allowed myself to imagine the future and have always taken things one day at a time -- living in the moment as best as I could. I was afraid to believe we would have our boy with us for even 5 days, much less 5 months or 5 years! Or that he would be living and thriving and truly enjoying his life, with just half a heart? It was beyond fathomable.

But as I look back and reflect on the past 5 years, I see that I've learned something incredibly valuable:

 God gives us exactly what we need, right when we need it. 

I never could have made it through the last half of my pregnancy with Chase without God giving me the peace I needed to make it through.

I never could have delivered my son and watch him be whisked away, waiting over two hours to hold him for the first time.

I never could have sat by his bedside for 6 days, patiently waiting for my second opportunity to hold my newborn baby---the night before his first open-heart surgery at 7 days old.

I never could have watched as my tiny baby rolled down the hallway to the OR -- not once, or twice, but a total of SEVEN times so far---three of which were to repair his tiny heart.

I never could have made it through the past five years without God providing me with exactly what I needed, right when I needed it.

His grace. His peace. His love. His mercy. His healing. His faithfulness.

We are so blessed! This boy is absolutely amazing and I praise the Lord for allowing me the privilege of being his mommy!


Sunday, June 15, 2014

Happy Father's Day!

Happy Father's Day to hubs! We've had a pretty good day celebrating so far -- if I may say so! We enjoyed a great service at church this morning with some pretty amazing guest musicians. Then it was home for lunch! I made cranberry chicken, mashed potatoes, corn and biscuits.

Hubs opened his gifts, which included new porcelain cast iron cooking grid grates for our grill, which he's been talking about replacing for years! And my favorite gift that I was most excited about was up next... a major shoutout to my good friend H for the inspiration behind this incredible gift idea!

I purchased the wooden letters D and A from Hobby Lobby and let LO paint the D while Chase painted the A. E just sat and watched patiently without attempting to get into the messy fun. Notsomuch. The next day, it was off to a local park to take pics of the kids with the letters. They came out great! Here are each of the pics of the kids since there's a bit of a glare in the photo above:

In addition to the larger 4x6 photo collage we made to hang on the wall at home, we also did a smaller one with 2x3 photos for him to take to work. E is over a year old and hubs doesn't have a single pic of him at his office! #momfail

After presents it was time for our family's favorite part of any celebration: DESSERT! I created something pretty new and quite spectacular to honor dad!

NOTE: I am not a food photographer. Clearly this is quite obvious.

What we have here is a brownie layer, topped with hot fudge and crushed Reese's Peanut Butter Cups, topped with Reese's Peanut Butter ice cream, topped with more hot fudge sauce, whipped cream and more crushed Reese's as well as Butterfinger. OMGeez. It was DIVINE!!!

Obviously not low-cal, but we don't do low-cal around here on average days, and certainly not on special celebration days!

Happy Father's Day!

Friday, June 6, 2014

Four Weeks

Four weeks ago today. Still so hard to believe what a miracle this child truly is. We are so blessed.

Wednesday, June 4, 2014

Another Big Announcement...

It seems big, crazy things just keep happening here in our world and lately, we've certainly seen no shortage of excitement! First, there was Chase's announcement (YAY!). And now, here's another big announcement, which may come as quite a shock for some:

After months of prayer, thoughtful consideration and seemingly unending research,

I have decided to homeschool LO and Chase this fall.

{{{{{insert gasps of shock & awe here}}}}}

IKR? Do you think I'm insane? Have I truly lost my mind??

I don't think so.

I've literally wrestled with this decision for months -- easily almost a year now -- and it's such a relief to finally admit to myself and to the world that I've made this decision! God put this on my heart and I honestly feel like I've spent the past few months arguing and battling Him on it. But I've finally thrown up my hands and said, in almost the exact words of a fellow (now seasoned and successful) homeschooling mom at the beginning of her journey, "Okay, God, I'll do this homeschooling thing. But if it fails, it's YOUR FAULT!"  ((wink))

This is literally a one-year-at-a-time decision for me. I've promised God and myself that I will commit to this for ONE YEAR, with the hope and prayer, of course, that it is successful. What happens next year, or 5 years from now or 10 years from now, is anyone's guess. God has already figured that out but hasn't chosen to share it with me just yet.

There are several reasons I first started considering homeschooling LO in particular, and I'm sure I'll share some (or all) of those in the weeks and months ahead as I make my preparations. Choosing to homeschool Chase was a no-brainer. He had been attending a K3 program at the same Christian private school where LO completed K3 and K4, but sadly, it just didn't feel like "home" to us over this past year during Chase's 2 day/week enrollment. And saving the several hundred dollars each month on tuition was an added bonus. Add in the fact that he'd be out of a school environment (i.e. illness, germs, etc.) and it's a win-win. I haven't decided which curriculum I will use for him, but I know there are several incredible options out there and eventually God will lead me to the right one. For now, I'm just trusting Him (in a BIG way!).

As for LO, the decision to homeschool her was a bit more involved and much more complicated. She's a VERY bright child. Her 1st Grade assessments put her at a 5th Grade reading level, with her comprehension a close match. She picks up on new concepts, particularly in math, at lightning speed and can easily retain and recall new information, well beyond her rising 2nd Grader status.

And unfortunately, I was less than pleased with her Kindergarten and 1st Grade years at our local public school. The school is nice enough, but when it came to something that would keep her engaged and challenged, it just didn't fit the bill. I inquired about advanced learning opportunities and just kept hitting a wall. I guess they didn't seem to think a super-smart Kindergartener needed any opportunities to enhance her skills beyond that of her fellow peers. Just the basic ABCs and 123s. And I get that, to a degree. But this past year especially she was getting very bored, which would surface as behavioral issues (unable to sit still, constantly talking, etc.) because she already understood a concept that was being repeatedly taught until the rest of, or majority of, her class picked it up. This just didn't seem fair to her.

Add in my frustration with the staff -- not necessarily just at the school, but also at the district level -- and I was just tired of putting up with the "inside the box, one size fits all" approach. They can't possibly provide individualized learning to each student, and I wouldn't expect them to. But I would expect them to try harder. To do right by my child. It's my job as her parent to be sure she's getting the very best when it comes to her education, and they were falling short.

Not to mention, one of the BIGGEST pieces to the education puzzle that we miss with public schooling is, of course, the ability to incorporate Christian teaching and Bible study into our school day. I want my kids to be smart and learn a lot, naturally, but I also want them to have a strong faith with a heart and passion for God. This cannot be taught in the classroom, but it can be taught in the home.

I've made a decision about the curriculum I'll be using with LO, but I'll go into detail on that in a later post. For now, just know that we will be a schooling-at-home family beginning in August, and we would certainly appreciate your prayers for success!

Sunday, June 1, 2014

A Big Announcement...

I didn't want to say anything before it was official, but I received the letter yesterday, so it's official!

Chase has been granted a wish from

I must say, this is a weird, bittersweet, strange feeling. Wishes are granted through MAW for children with life-threatening medical conditions. No one wants to be in that boat, but when you find yourself there, you want to do everything you can to give your child the very best life possible!

And I'll be honest -- we are very encouraged by Chase's amazing strength (and stubbornness) as he's battled his Congenital Heart Defect (CHD) through 3 successful heart surgeries to essentially reroute his body's normal circulation to create an entirely new physiology with only half a heart. Our expectation, hope and prayer is that with God's continued hand of protection on our boy, he will have a very bright, normal, LONG life ahead of him. And for that, we are truly grateful and blessed beyond measure.

But he was dealt a rough hand. He had a very rough start. Open-heart surgery at 7 days old. A second at 4 months. A third at 4 years of age. Not to mention 3 heart catheterizations, countless procedures, echos, EKGs and a daily medication regimen that he will continue for his entire life. Not to mention the very real possibility of a heart transplant at some point during his lifetime.

Those reasons, to me (as well as his cardiologist and the amazing staff at MAW), are more than enough to qualify him for this once-in-a-lifetime opportunity. And I couldn't be more thrilled for him.

Stay tuned for more as we move forward with #MAW4Chase!

But first, here are a few pics of my little goofball learning about his Make-A-Wish opportunity. Naturally, big sis was pretty excited about it, too!