Tuesday, February 3, 2015

To the beat of his own rhythm, Ollie turns two!

Literally beating to his own very unique and beautiful heart rhythm, our precious Ollie turns two today. This fragile yet strong heart of his is one of many reasons to celebrate the month of February. Ollie was born on the 6th, but we didn't sit down with his team of cardiologists until the early morning of the 7th. The reason I am bringing this up is February 7-14 is Cogenital Heart Defect awareness week (wear red for Ollie and his heart buddies). The morning of the 7th, I stumbled to the conference room in my hot pink sweat pants and lime green hoodie...yikes! Jason and I looked like walking zombies. We knew something was wrong with Ollie's heart, but we didn't know Ollie would have such unique and unknowledgable heart defects. The team of cardiologist drew diagrams and explained to us that our little man's needed to be "fixed". I can remember immediately leaving the conference room to be by Ollie's side. It was there that I had Coldplay's- Fix You song running through my mind...
"And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you"...
Ollie's heart journey has been by far the toughest. The unknowing is a tough pill to swallow. 

I am rambling because I can't believe my baby is 2! Ollie's personality has really evolved over the past year. He is seriously the most easy going child I have ever known. His best buddy is Owen and he adores cuddling with Baby (our crazy, lazy dog). Some days are down right hard and overwhelming though Ollie has no issue cracking smile to part those gloomy clouds. His soul sparkles! He teaches us to be thankful...he shows us we are blessed! This boy and his big brother are the light of our lives! 

Ollie is working hard physically! He is close to sitting unassisted though this may not seem like a big deal to most, it's a huge achievement for him! Ollie is a crazy barrel roller, but he's still not the biggest fan of being on his belly. This boy is quite a stubborn little man! He is showing interest in playing with toys which completely melts my heart. Ollie is obsessed with Mickey Mouse! When he hears Mickey's voice an instant smile and giggle appear. Ollie has been doing hippotherapy (horse therapy) for almost 6 months. The combination of in home therapies and hippotherapy has made a huge difference in his advancements. I can't speak highly enough of all of his therapists. Our in home therapists have been with us for most of this journey and I would be lost without them. 

In March, we are taking our first family vacation to Florida. I know vacations are supposed to be stress free, but packing and planning for Ollie is nerve wracking! We have to plan out hospitals in case of an emergency and can they accommodate his needs is always a big question. We have to pack all of his medicals supplies and medical equipment. Not to mention, we have to still figure out a way to pack all of his frozen blended diet food. I know we are all super excited and nervous at the same time! It will be so good to slow down and take a break from a everyday routine at home and more importantly we can't wait to spend time with our family.

Ollie has some important appointments coming up this spring. We are going to check his heart function before we leave on spring break just to make sure there isn't a significant change. He was just fitted for his medical stroller. This is huge for outings with Ollie because in our normal stroller Jason or I would need to carry most of Ollie's bags and medical equipment. Plus, Ollie wasn't ever comfortable in it and would slouch. His new stroller was fitted to him personally and keeps him in midline. Ollie seems to really love it! Of course, we had to get some Ollie green on the stroller so he is styling! :)
In many ways these two years have flown by but other ways it feels like an eternity! I  want to enjoy my boys every waking second and never take for granted the time I share with them. Owen is growing up so quickly before my eyes that I forget that Ollie is much older than he may appear. As I always say....small, but mighty! :)

Wednesday, August 20, 2014

"You are stronger than you seem"

Hello there!!!

Sorry for the extended break from blogging! Just wanted to get all of our ducks in a row before filling all of you in on Ollie. 

In April, Ollie had a tonsillectomy and adenoidectomy for severe obstructive sleep apnea. We were told that this was extremely urgent because his sleep study showed some very concerning information. We were under the impression that there was no other option. The doctor told us that doing this procedure would eliminate his obstruction. Ollie endured yet another painful surgery and rough recovery. 


We had a repeat sleep study in June. I patiently waited 3 long weeks to be told that Ollie's sleep study was significantly worse than prior to surgery! I sat in shock for a what seemed like several hours...baffled by the called I just received. During the conversation, I demanded we have a pulmonologist added to our team and honestly this should have been added when Ollie was born. 


This week we meant with pulmonologist and I must say that I adore her! I preached my concerns, aggravations, and my advocacy of knowing Ollie's needs. In return, she answered all of my questions and said she would love to join us on the roller coaster ride. She is all about the less invasive approach....I wish there were more doctors like her! We chatted about the options we have left concerning Ollie's airway and lungs and came up with a game plan. The doctor sent us home with nebulizer treatments because she noticed that Ollie's lungs were inflamed due to aspirating on his saliva. At least the nebulizer is a cute seal named Sami that has a turtle mask. She is going to attempt to fit Ollie for either a cpap or bipap. There are many factors playing into this plan that could make it impossible, but we all want to at least give it a try. Many prayers are going up that this is the answer because if it isn't we are left with only one option....a trach. While there are benefits to the trach I was hoping we could avoid it.


Ollie is working hard everyday to become stronger! He is weighing in at 13 pounds 11 ounces at 18 months old. He is showing us more of who he is...quite stubborn I might add. Owen is truly an amazing older brother to Ollie. Owen is by far the best therapy for Ollie...their bond is undeniable!


Monday, April 7, 2014

Zzzzzzz!!!

My goodness I haven't posted in forever! It has been a crazy past couple of months. Anyways...I will try to catch you all up on the little man.

Ollie has had a quiet few months mainly because of the flu season. I'm sure our neighbors think we are vampires since we never leave the house! We are getting out of the house on nice, warm days and going for a much needed walk. However, Ollie absolutely hates being outside. It is sensory overload for him and honestly, I can't blame him...I would be totally freaked out! 

Ollie is a whopping 10 and a half pounds. We have started adding gelatin to his blended diet and finally started to see progress in his weight. Do not be fooled by this tiny, little man because he is actually the real life version of Mighty Mouse! I'm still amazed by the blended diet...I will forever be a HUGE advocate! I have taught seven parents of tubies the blended diet and all of them stated they saw tremendous improvements! Winning!!!

Ollie has been working his booty off in his therapies. He can officially roll side to side and almost to his belly, but he absolutely despises being on his belly. His head control is strengthening. The bumbo seat is being used daily though Ollie has his own version of sitting in it...silly, crazy boy!  

Few weeks ago, Ollie had a sleep study. One word...torture! I thought this non-invasive test would be a cake walk compared to everything else the little guy had endured. Boy was I wrong! I'm pretty sure he is never going to let me live it down that I put him through it. Anyways, the results were not good. Ollie has severe obstructive apnea with a critical airway. Doctors saw him immediately and we all agreed that the best solution would be a tonsillectomy and adenoidectomy with laser supraglottoplasty. While he is under anesthesia, he will have tubes placed in his ears because of chronic fluid issues and he will have his whole airway assessed.  The surgery is this coming Monday (April 14). We are asking everyone to please keep him in your prayers. On Monday we would love for you to support Ollie by wearing lime green/blue and to rock your Ollie band!


Sunday, January 12, 2014

A New Year!

Well now that the holidays are done and gone it is time to start a new year. A year filled with much happiness, love, and little less stress I hope! I look back on the past 11 months and nothing seems real. For one...how in the heck is Ollie 11 months old?!? I have no idea where this year has gone and though Mr. Ollie may not look like he is almost a year old, I can kind of say that I have enjoyed having the baby stage extended. For now, I will adore my extra snuggles for soon enough I will be chasing around his wiggly buns! 

Let's see what is new in the life of Ollie:
Ollie received his BAHA! This is his bone conductive hearing device. I must say that this little handy device is pretty neat. I put the BAHA on and plugged my ears with my fingers then I traveled to another area of our house and I could clearly hear Jason's conversation while he was on his phone! My favorite part about Ollie having the device is seeing him react to things he has never heard because of his hearing loss. He cracked the biggest smile when he heard the tags jingle on Baby's (our fur-child/Ollie's guardian) for the first time. 

Since the lovely flu season has decided to drop in on us, we have kept Ollie's doctors visits to a minimum. The less exposure lessens our risk. We have many visits to catch up on, but I have sincerely enjoyed a break from constant weekly appoinments. The little mister is busy enough with his physical therapy and occupational therapy. OT and PT have been working with Ollie on stretching, holding his head up, leg extensions, sitting, and much more. Every therapy is an achievement in my book! 

Now for the ugly news...
Ollie's spine is in pretty bad shape. He has "s" shaped scoliosis. We are being referred into Pediactric Orthopedics to begin our adventures down this road. Right now, Ollie is in a tremendous amount of pain when he is placed in a supported sitting position. I want so badly for him to sit and play with his older brother, but that is not what is in his best interest at the moment. We know we will be walking a thin line when it comes to treatment because of Ollie's heart defects. 

Owen celebrated his 3rd birthday on December 8th! Excuse me while I down a bottle of wine because I am a mother of a 3 year old...yikes or in my Pap's words "God free daniels!" We had an absolutely phenomenal cake provided by Icing Smiles. They're are nonprofit that provides cakes to medically needy children and their siblings. It was such a burden lifted off my shoulders not having to worry about making sure Owen had a cake especially since I didn't know if we would end up in the hospital. If you are ever looking for a place to donate please consider Icing Smiles! A huge thank you to Melissa from Sweet Lillies for donating this delicious, awesome cake to Owen! She nailed Owen's request for a Disney Planes and Cars cake!




Monday, October 21, 2013

Oliver Hayes...you are a miracle!

First off...sorry for not keeping everyone on the up and up, but I have been busy snuggling Ollie at home...you're right, I said HOME!!!! :) I thought it was in Ollie's best interest to recover more at home rather than stay in hospital as illnesses were on the rise. 

Ollie has made tremendous strides in his recovery...I must say, we never underestimated this amazing, little fighter. He is a miracle! A miracle that Jason and I have been blessed with...

This little mister has an ever so long road to travel down, but we will be by his side for the ride though he can quit the roller coaster ride at anytime...I know I said I love roller coasters, but not this one! Ollie's heart is making everyone jump hurdles when he should be sprinting toward the finish line. He will have more open heart surgeries in the future...when??? Now that is a good question. As of right now, Ollie's heart has endured far more trauma than intended and needs to rest. We are traveling this road at a turtle pace because of Ollie's almost nonexistant combination of heart defects and lack of knowledge for these defects. 

I have been asked on several occasions, "how do we do it?" There is a simple answer to it...you just do. Our lives have completely changed to what is now our "normal". I wouldn't trade this situation or experience for anything. Yes it is hard...emotionally, mentally, and physically, but the reward surpasses it all. Ollie is here to show us all how grateful we should be. He is here to show us the greatness of life and for this, I am one lucky momma. He may never see the beauty of Earth, but he will show us beauty in a different manner. This could go on and on about how Ollie has made a difference in many lives. He is such an inspiration and I can't tell you how thankful I am to be his mommy. One tiny boy making huge difference everyday in our lives!



Tuesday, September 24, 2013

Those 3 little words...

"I Love You"

Today there was light at the end of a very dark tunnel. Ollie is awake! Knowing I could tell him "I love you" again and seeing him respond was a breakthrough moment. I was ever so hopeful of this moment, but the dark side of the situation would creep its way into my mind. Never knowing if he would ever hear those words again or feel my love through a kiss and a snuggle was truly the most heartache I have ever endured. Now, I must patiently wait to hold my baby again. I told him over and over, "I love you" while tears streamed down my face. Mommy's little mister, daddy's little bubba, big brother's "butter" was back and full of life! 

Ollie has a long way to go before he is out of the woods. We don't live day to day...we live hour by hour because Ollie likes to be challenging. Ollie is our little miracle who is going to make a significant difference in our world. Doctors are learning and planning to educate others from his case. Ollie's heart condition has only been seen three other times in the world, but there is not any information on any of the three cases. Like I have always said... Ollie is here for reason beyond what I can explain! 


Thursday, September 19, 2013

Tidbits about Ollie <3

Now that I have a little bit of sleep under my belt (not that I'm functioning any better, but just maybe my words won't be quite as jumbled together) I can finally explain what is going on with Ollie. On Tuesday, Ollie had open heart surgery to repair the Tetralogy of Fallot, vascular ring, and right-sided aortic arch. Ollie also has another heart defect known as Ebstein's anomaly, but they decided against doing any repairs to this defect. Since his surgery, Ollie has developed a condition known as heart block which requires a dual pacemaker in his case. Doctors have no explanation as to why Ollie has developed this condition, but are waiting to see if it is possible that his Ebstein's anomaly is playing a part in how his heart mechanically functions. As of right now it's a waiting game to see if his heart will decide to function it's rate and rhythm on its own. Periodically, the doctors have turned off the pacemaker to see how his heart is functioning and so far, it has resulted in flatlining. All we can do now is play the waiting for a few days and then make a new plan...as the surgeon stated, "frustrating". I warned him before surgery that Ollie loves to throw curveballs and to be prepared. The surgeon now knows what I was trying to warn him about. Ollie has been on an up and down roller coaster since surgery, but we are staying hopeful for his recovery. 

"Lord, I know not all prayers are answered, but many are, so I continue to petition you, for you are my hope. Amen"