2 Year Happy Heart Day!

Well it's been another year.  I can't believe it's been 2 years since we handed over our sweet Ollie Faith in heart failure over to that team of surgeons.  I have never been so scared or prayed so hard in my life.  I prayed for God to hold her in his arms during the surgery and for a complete correction resulting in no future surgeries and for a swift recovery.

He delivered her back to us with my prayers answered.  We had a rough first day, watching your baby moan in pain that you can't fix or control is beyond difficult, but day by day she got stronger! 

Two years later she is a happy, bubbly, wild, totally typical two year old little girl that makes our hearts sing. Her journey wasn't one I would have ever asked for, but it is one I am ever thankful for.  It gave us faith, it gave us perspective, it showed us that life is never to be taken for granted and that God is good in everything that he does.

Happy Heart Day baby girl!  We love you!!

We are celebrating today at the Down Syndrome Step Up Event in St. Louis - what an awesome way to celebrate!!

Woah! Simply Woah.

I'm terrible at updating you all, but I had the most mind blowing call recently. 

Beachbody has asked me to step on the big stage at the MGM in Vegas on June 20th to share my success story!  This means getting real and vulnerable in front of roughly 8,000 fellow coaches!

If you know my story - then you know it comes with a lot of shed tears but now a ton of joy!

I'm ecstatic & scared!  Public speaking isn't my strong point & well I know without a doubt I will cry.  But I know I'm getting on this stage for a reason.  It's a total God thing & he has a message for me to share.  So pray me up for confidence, strength, and to share his message with my story!!

#summitstage

(the hashtag I have used since October hoping to get on this stage with my weight loss transformation - God has a funny sense of humor!!)

Healthy Heart Party

Today we celebrate a healthy heart!!!  There aren't enough exclamation points in the world to highlight that sentence for me!

It has been one solid year since the day we handed this amazing girl off to her surgical team for her AV Canal repair or as you know it Open Heart Surgery.  She was a tiny girl a day shy of 4 months old.

The emotions flood back of that morning.  Handing her over is by far the hardest thing I've ever had to do.  Fear overwhelmed us as we prayed over her little 10 pound body.

Thank the good lord for his strength, my extreme amount of faith, and a strong husband by my side.

Over four hours of waiting with a full on support group of family and very close friends kept us for the most part occupied.

We finally saw our girl again with all the tubes and wires.  This picture looks good in comparison to what we first walked in on.  It made my heart break time and time again that first day.  She was in pain and that is hard to take.  She had an amazing cardiology team & CICU nurses by her side.  They made sure she was in the best care possible.  I am forever indebted to them.

Each day she was incredibly stronger & her pretty eyes shown with this new glow of health.  Heart failure no longer existed for her.  She wanted out of that bed so badly & we wanted her out too!

The moment we got her out was like holding her for the first time all over again. 

She no longer will rock a flawless chest, however what she wears instead is a badge of courage.  The mark of a truly remarkable girl.

She continues to bless us daily with her bigger than life personality.

Tomorrow we are celebrating.  Our family is coming over for a healthy heart party.  We can't wait for everyone to love on our sweet girl & rejoice on a better year with a completely repaired & perfectly functioning heart.  We have been on a journey, but it is one I never regret because we look at health as the blessing it is and we are stronger, better, more God fearing & God loving people than we ever were before.

And to Dr. Huddleston - we are forever thankful for the miracle you performed on her heart.  You are one hell of a surgeon!  And I truly believe you are one of God's best tools to many more families!

Are you sitting down??

because girlfriend is bringing the cute!

and maybe a little weird too!

Teeny tiny goes back to St. Louis on Valentine's day for a full day of appointments.  Please add her to your prayers as we meet her cardiologist & pray that the small leak has healed up post surgery!  We haven't had an echo since August so God had lots of time to move!  Thanks friends - we heart you much!

6 months

Wow how time flies.  I say that I swear all of the time, but it really does.

6 months ago on this very day - you were all praying like mad for Miss Tiny.

6 months ago Dr. Huddleston took her back to his operating room with a broken heart & God moved through his hands and handed us back a repaired ticker.

Since then Ollie Faith has gotten strong.

She went in at 10 pounds 5 ounces one day shy of her 4 month birthday.  

She struggled the last month before surgery to simply put on 4 ounces. 

Today she nearly weighs 17 pounds!!  The weight comes so easily when your heart and body are not running a constant marathon to survive.

She rolls all over the house, she pushes up, she inch worm crawls, she sits almost independently.

Tomorrow she's 10 months old.

She's vibrant.  She's happy.  She's addictive.  She's hilarious.  She is a tiny diva.  She rules the house.  She lures strangers in with a two teeth grin.  I can't say enough because words can't describe her.

Quite honesty she's unbelievably fantastic.

Some days I wish I knew back then how I would embrace Down Syndrome & how I would grow in so many ways from open heart surgery.  But I'm ever so glad I never knew because this journey has changed my perspective, my life.  

We are truly blessed - God knew what we needed most - the perfect baby for us.

Miss Ollie Faith!

Thank you all for your continued prayers - we appreciate them so much and we will never be able to repay you, but when you need prayers - we are here!

Heart Heroes

I was recently asked, do children with Down Syndrome typically have heart defects?

Well, it is pretty common in children with Down Syndrome. In fact about 50% of these kiddos are heart heroes. In their typical peers, heart defects are present in about 1% of the population.

The most common heart defect seen in infants with Down syndrome is an atrioventrucular septal defect, or AV canal (What Miss O conquered). Other heart defects seen in infants with Down syndrome include ventricular septal defects (VSD), atrial septal defects (ASD), and patent ductus arteriosus (PDA).

Some kiddos may have a heart defect, but it may not require surgery. It's not entirely uncommon for an ASD for a VSD to grow closed & often it's closely monitored by their cardiologist. Sometimes it may take a year, sometimes they don't have surgery until they are older. Some kids may have to have multiple surgeries - fingers crossed that Ollie is done.

Ollie Faith had an AV Canal which means she had a hole between her atriums, a hole between her ventricles, and a common valve - basically a hole in the center of her heart. This type of defect usually always requires open heart surgery. They told us she had a very small chance of these holes growing shut on their own. Of course each kiddos heart and makeup is different. Ollie had a moderate ASD and significant VSD so they were pretty substantial holes.

Ollie went in at 10 pounds 5 ounces at 4 months for her correction. Some kiddos are larger & longer making their anatomy easier to operate on, and some are shorter and smaller making it more difficult, but at the same time their unique anatomy can vary the difficulty of the surgery as well. For Ollie's type of correction, they told us they typically operate between 3-6 months of age. Any longer could potentially damage the babies lungs long term because their heart defect pumps extra blood to their lungs prior to surgery.

What was key for us was finding a cardiologist and hospital we were comfortable with. We went to St. Louis which is closest to our home, and we were very happy with our cardiologist and our surgeon. Since St. Louis has a Down Syndrome clinic the surgery Ollie had wasn't uncommon for them. Our surgeon performs about 15 of them a year - that number wasn't as high as we had hoped - we were hoping it was a weekly operation for him, but he was very confidant in his abilities. Ollie's chances for survival were 99%.

On top of heart defects children with Down Syndrome can face many other health issues...however I'm not going to dump them all out here because honestly that list is depressing & scary - especially to any new parent that may read my blog.

I can tell them that modern day medicine is amazing & to find a hospital and staff that you feel absolutely secure with because it will make the process a little easier to bear.

Heart Failure

When we came home from the hospital on Valentine's day 2011, we were told we were in the "honeymoon" period.

They said she would be in full-blown heart failure within 2 -4 weeks max.

Jade & I got home, got settled in, and I bawled.  The words heart failure are scary.

Real life heart failure isn't as scary as the words sound.  They should rename it really because any Mom that has experienced the words heart failure also probably agrees with me that that label sucks.

For Ollie, heart failure came on slowly.  She tugged when she took a breath - this means her skin around her ribs sucked in really tight every breath she took.  She was a loud mouth breather - I could hear her across the room breathing.  She could out snore our pug.  She struggled to put on weight, every single ounce was precious, and she was pale.

Now I can list all her symptoms.  At the time, I didn't think she had symptoms other than slow weight gain.  I thought everything else was typical Ollie.

Her cardiologist started her on Lasix at 4 weeks of age & every month he bumped her up.  She'd gain weight for about 2 weeks and then plateau until we gave her more heart meds.

At a day shy of 4 months and a mere 10 pounds 5 ounces we went in for open heart surgery.

I can honestly say that was the hardest experience of my life.  At the same time, leaving that hospital 5 days post surgery with a strong heart beat, was the most beautiful experience of my life.  It goes hand in hand I guess.  God hands you your worst so you can appreciate his best.

We went in with so much fear.  I didn't sleep the night before her surgery.  I cry now remembering handing her off that day - it was awful - thank God Jade was by my side.  I felt like I was going to burst waiting to get into her room to see her post surgery.  It was the longest I had been away from her since her birth.  When I could finally hold her & nurse her post surgery was maybe better than the day she was born.  You could see the beaming joy from her face when we finally got to hold her.  It also brings tears to my eyes.  She instantly fell asleep the day her brother and sister came & she got to be around her typical loud background noise.  To her she thought she was home.

It was awful, it was scary, I was terrified that God was going to strip her from my life every.single.day from the day of her birth thru the day of her surgery & the few days following surgery. 

Now that we are on the other side, I feel blessed to have walked this heart journey.  I appreciate so much more in life.  I will never be able to thank her surgeon enough.  I made him a keychain for a gift - seems kind of ridiculous that's all I can do for him when he saved her life...but he knows how many love him.

She still has a very small VSD (hole between her ventricles) by the heart patch & hopefully that will grow shut as she grows older.  For now we don't go back to her cardio until February & 6 months away from the cardio man is just something I have looked forward to for a long time!

Headed To St. Louis

Tomorrow is a big day for us!

We are headed back to St. Louis for Ollie's follow up visit.  It's a day packed full of appointments.  Please pray for us that everything goes smoothly and we get good news all around.

We are starting at the Down Syndrome center for a 6 month followup.  We will also see Dr. Johnson, her cardiologist.  I'm hoping we get an echo and find out about the leakage of her valves.  Last we knew it was mild.  We are praying it doesn't get progressively worse which would mean another surgery at some point.  When he last saw him, he said our next echo would give us a better idea on a future surgery, so this is probably tomorrow so pray for very mild leakage!  Then we are heading to the opthamologist for an eye exam.  She has nystagmus, which means her eyes shake sometimes when she focuses.  It's typical in children with DS and is because of low muscle tone.  However, some children also need glasses and with Aubrie's poor vision it's always a possibility.  I think Ollie would be adorable in glasses, but we really don't want another set of specs if possible!

So pray pray pray & also pray for baby Vada who is in St. Louis now for seizures, and for baby Grace who is having open heart surgery tomorrow for an AV Canal.

Heart Surgery After the Fact

Ollie's heart journey was a scary one.  I have always had faith in God, but Ollie's health tested my faith & made it grow stronger.  You think you have faith until you have a child with a major health issue, and then you realize just how much you need to grow that faith.  I can't even explain the process we have been through.

People often ask me how that experience was, and here it is six weeks post surgery...

I am now thankful for her heart story.  I never thought I'd say open heart surgery was a great experience, but it truly was one of the best, most beautiful experiences in my life.  It sounds so funny to say that, but it's true.

I learned to give it over to God, and for those of you that have done this you know how hard it REALLY is to do.  She was in his hands.  I handed my baby off broken, with a heart that she couldn't survive with.  Through big tears, I told her to be brave and that Jesus and the angels were holding her hands.  Jade & I were more afraid than she was.

A living angel fixed her.  I don't know how he did it so well, but I truly believe God works through that man.  Everytime he spoke to us I would just stare at his hands and think, those hands are truly miracles.  He returned Ollie to our family with a healthy heart!  In a matter of 4 hours it went from broken to beating beautifully!  It is one of the best sounds I have ever heard.

When we left Children's Hospital to head home, Jade said that was one of the worst weeks of his life.  I quickly said, no honey it was the best week of your life.  He then agreed.

You see, for as stressful as it was & for all the tears that led up to that day, it's behind us now and we get this beautiful baby.  No more fears, no more worries, just her huge charming personality.  Aubrie & Everett have a healthy sister that can now play with them.

I also believe I am at a better place because of what Ollie has gone through.  You see, I don't grieve at all about Down Syndrome anymore.  I don't think of what life would be without it or who she would be or how I would change things.  I don't worry about her future.  I think when you have a healthy child with Down Syndrome it's sometimes harder for families to move beyond the Down Syndrome.  I believe they feel broken for a longer period of a time. 

A child like Ollie, with a serious heart defect & Down Syndrome changes that view.  All I have cared about since her birth was her heart.  I didn't want to lose my baby.  Even though I had this strong faith in God, there was that nagging piece of truth in my brain that she could die.  I never spoke of it, but I felt it daily on my shoulders that we could potentially come home without her to a nursery and all her things, without our baby girl.  That snapped life into perspective so fast for me.  It was a good fear.  It was a fear I swallowed daily & prayed continuously over.

I am grateful for it.  I look around today and count my blessings constantly.  My house is messier than it's ever been, but it doesn't seem to matter like it used to.  I am much more patient with my kids.  I see the beauty in every day things.  I am a bit of a control freak, and anymore I am not so much.  I am relaxed & breath easier.  When we have a fun day, I truly reflect on it and think we have such a sweet life, we are so blessed, and I truly praise God daily.  I don't send him a list of needs and wants for myself, but I praise him for what he has given me because he is good & without him I know the mess of a person that I would be.

Open Heart Surgery Day 5 - Going Home

I'm a little late in posting the full update, but Monday morning we were sent for two chest x-rays, a new EKG and a new echo cardiogram.

 Hearing her new heart beat & seeing four separate chambers on her echo were breathtakingly beautiful.  There is no other way to describe it.

After her tests we found out we were going home.  We were ecstatic!

She was admitted Thursday morning & sent home Monday around 2:00.  She went home on Lasix (removes extra fluid from the body), Enalapril (a heart med), Synthroid (hypo-thyroidism), and Tylenol for pain.

Since she has been home, she's like a new baby.

She cries.  I mean really, really cries.  I am being retrained on how to take care of her, she used to never cry so to hear her cry about puts us into a panic trying to figure out what she wants.  It's amazing to hear this new cry compared to what it used to be.  It just proves how sick she really was.

She kicks her feet clear to her head.  Yes, you'd think that would hurt, but she does it.  She's so close to rolling over from her back to her belly too!  She's getting so strong!

She is pink, really pink!  I had no idea how pale she was until now.  It's just amazing to see her beautiful pink, oxygenated skin!!

I just can't get over this experience.  I had feared it since October.  I had bawled about it, prayed about it, handed it over to God many times, and was so anxious I couldn't sleep over it.  Then, God answered our prayers.  He held her hand during surgery, he delivered her back to us with a new strongly beating, healthy heart. 

The five days at St. Louis were hard at points, but overall it was a wonderful experience.  We are beyond words blessed & look forward to sharing many stories of Ollie in the future.  Thank you for all your prayers & support, we couldn't have made it through this without you!

Friday she has a follow-up appointment so more to come!

PS - she has to be isolated for 2-3 weeks so as of June 30th the ban on Ollie Faith will finally be lifted & you will see us in public!  Woo hoo!!

Open Heart Surgery Day 4

We had another great day with this stunning girl!

Who knew that on the 4th day after open heart surgery that someone so tiny would kick so much butt?  My friends that have done this knew, but it's never a given that your child will do so well.  I had fretted over this, and it feels so good to see her recovering so strongly.  She has only taken Tylenol today, and honestly you can tell she feels good.

She has been telling stories and smiling a lot more today.

Uncle Zac got to hold her today.

Aunt Maggie came back to visit.  She has been DYING to get her hands on Ollie since she heard we could get her out.  She was at home with the bigs.  Dad brought them down last night to stay over & Maggie stayed home.  So today she, Kylie, and Caroline came down & after some cuddles they hit up the zoo.  Kylie was afraid to hold the babe.  When we get home we'll have to force him into it!

It was good to see our other two kids.  It's hard to be away from them, and it's just been a few days, but still hard.  Now Aubrie has decided she'll be a cardiologist after meeting Ollie's cardiologist, Dr. Johnson.  She also wants to be a veterinarian, hair stylist, and fire fighter so we shall see.  Maybe she'll build some new state of the art clinic that does it all!

The big news is that we were moved!  Around 2ish we went down the hall from the 7th floor cardiac ICU unit to 7 West.  It's a step down unit to prepare us for home.  The big change is that our nurse had 3 or 4 patients instead of just 1 or 2.  It has been just fine though.  I'm getting really comfortable with moving Ollie around so it's good for me to get used to handling her a lot more.  I'm doing most everything on my own.  The nurse is mainly giving her Lasix through an IV and doing vitals.  Oh and one IV came out so she only has one IV, sticky cables on her chest & a cable on her foot they all monitor her vitals.

We are in a shared room, but we don't have a roommate so we are loving it!  We have our own bathroom, Ollie has a mobile & a swing she can use.  It seems huge & private.

We put her swing in her crib & let me tell you she thought she was home.  She only naps in a swing during the day at home so she was just thrilled. 

She is off the oxygen, and look at that pulse ox - 98 - are you even kidding me?  It's 98!  The 141 is her pulse and the 29 is her respiration.

This is our side of the room.  We have a rocking chair, and a couch that we can also sleep on.  The best part is since it is just us, Jade has a place to sleep too!  In the ICU there was one place to sleep so he insisted on pulling all nighters to be with us, then he'd nap during the day in the hotel.  He was exhausted.  He let me sleep every night, he really loves me because I honestly couldn't pull an all nighter, let alone 3.  We are so happy he has a place to really sleep tonight, he needs it!

We also got little miss dressed in her own clothes & brought out her own blanket.

Awww the comforts of home.  She is happier every single day!

Aunt Jackie came back to visit and they had a long chat.  She is staying with Mom since everyone else is now home.  It's good for Mom to have a pal with her, and who better to enjoy her antics than her twin sister who gets her!

Tomorrow we start off with a new echo cardiogram, EKG, and chest x-rays.  If all goes well, there is a good chance we are heading home.  I'm not setting my heart on it yet because if she needs to be here for any reason I want to stay, but oh my bed sounds awesome!  I want her doctors to be really comfortable with that decision first.  At this point she's doing so well & all the meds are things we can handle at home orally.

She'll go home on Lasix (which she was already on), a heart medication, and her thyroid medication plus throw in her Tylenol.  I'm going to have to make myself a meds chart to make sure we get them all every day at the right time, but I was already doing that so we'll be good.

So tomorrow I'll let you know the plan.

Thank you for the continued prayers!  God is SO good & he has carried Ollie through this with flying colors!  All the glory goes to him!

Oh and I do have a prayer request.  There are 3 kids on this floor waiting for heart transplants.  I haven't met them, but I see them taking walks around the floor.  They are on bypass machines until they get their hearts.  It's hard to see.  It makes me thankful that Ollie's heart was repairable.  I want these kids to get their hearts.  I ache for their parents.  It makes you truly realize the importance of organ donation in a huge, huge way!