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"


Tuesday, September 17, 2013

Just a little note...

As I sit here and stare at my baby boy tonight, my mind begins to wonder. So many emotions....so hard to stand tall. Though, I know his strength and will to fight will keep me going by his side. I want to ask "why him?" yet I know he was born for a reason that outshines any questionable thought running through my head. We all take for granted our health and how lucky we are when we have a healthy child. Never in a million years would I have thought I would be in a CVICU pacing a room with my child not knowing what each minute is to bring. I can't help watching the clock closely as I hear the ticking of each passing second I have with this amazing, precious life. In the past seven months, Ollie has forever changed our lives in the most positive way. As always...Keep Calm and CHARGE on! 

Saturday, August 31, 2013

Hallelujah Blended Diet!!!!

Well my mommy gut told me to try the blended diet for Ollie. A blended diet is all natural food blended down and liquified to go through Ollie's feeding tube. Doctors do not support this method at all! One word.... Frustrating! Though, I wasn't finding much support, but I wasn't going to let that stop me. Ever since I had Owen, I find myself becoming more like a hippie. Haha now that's funny, me a hippie!?! Ok I'm not a hippie, but I don't believe medical intervention needs to intervene at all times. I think there can be simple solutions and they definitely don't hurt to try. So the following week after Ollie came home and recovered, I started this so called "blended diet for tubies". Holy cow, we saw dramatic differences! Ollie was no longer frail and discolored. He was ever so happy and turned into a jabbering baby. He finally laid on his stomach and tolerated it. I held my baby boy in a vertical position and snuggled him like this for the first time! Wowzers...I'm crying tears of joy for the first time in a long time! The biggest and best difference though was Ollie has completely stopped throwing up! I could just cry my eyes out for this, because imagine throwing up 5-10 times everyday for six months straight. He was miserable....mommy and daddy were heartbroken and weren't sure if it was ever going to end anytime soon. The blended diet just proves doctors aren't always right and sometimes parents need to research themselves so they can determine what is best for their child. In my eyes the blended diet is a miracle! 

Monday, August 12, 2013

Hello 6 months!

Where has the time gone?!? First off, sorry for not posting as much lately. It has been a little hectic around here and to be honest, I have been cherishing my family time. Ollie was in the hospital a few weeks ago. Poor guy had the Rhino Virus and wasn't able to keep anything down. I guess being a germaphobe and keeping the little guy quarantined still wasn't enough to keep this little guy from getting sick. We had several tests done just to make sure there wasn't an underlying issue to Ollie's throwing up since he has been doing this everyday since he was born. We did another upper GI and noticed Ollie has severe reflux and his stomach empties very very slowly. Both of these explain his excessive throwing up, but the only was to fix both of these issues is with two separate surgeries. The minor surgery would be to switch his Gtube to a GJtube. This just means the tube goes beyond the stomach and empties into intestines. Jason and I discussed for hours, but my mommy gut said to not proceed with this option. I feel that there is another noninvasive option such as a blended diet. The second surgery is the Nissen and basically they wrap the upper part of the stomach and lower part of esophagus. Lets just say the doctors will have to do lots of convincing for this momma to hand over little Ollie for the Nissen. Hmm, now I know why my parents hated arguing with me growing up...what can I say, I like to play hard ball. 

Friday, July 12, 2013

I <3 Ollie!

This past Wednesday, Ollie had a heart catheterization. He is slowly recuperating from his procedure. I truly hate seeing him in pain and wish somehow I could take the pain away. The cath went great, but the poor guy was pretty upset when they woke him up. I just wanted to snuggle him! The cath showed everything we already knew and nothing new came up (Thank God!). We did find out his pressures were pretty bad, but honestly I suspected they were going to be this way. We are on track for his first open heart surgery this coming August/September. My stomach churns at the thought of him going through another surgery, but it is completely necessary. This little boy is a miracle and I am beyond blessed to call him mine!

I'm not sure if I have ever discussed Ollie heart condition so I will fill everyone in here...Ollie has a heart defect known as Tetraology of Fallot (ToF) with Ebstein's Anomaly, Right-sided Aortic Arch, and a Vascular Ring. He will undergo several surgeries throughout life to keep his heart functioning. We know Ollie's heart will never "perfect" and he will have restrictions for life, but I can tell you that this will not stop his fighting soul. He has proven this everyday of his life!

"On the night you were born,
the moon shone with such wonder
that the stars peeked in
to see you
and the night wind whispered,
'Life will never be the same.'

Because there had never been
anyone like you...ever in the world."







Saturday, June 8, 2013

In the dark there is light...

The crazy week is coming to an end...
We wrapped up our week of appointments with Opthalmology. I was hoping to find out as many answers to questions regarding Ollie's possibility of vision.

Jason and I have been working with Ollie the past few weeks on tracking objects
and getting him to reach for items, but we didn't have any success yet our hopes were still high. We've been hoping and praying for Ollie's vision especially since this was the only issue that can't be fixed or improved.

After they dilated his eyes and had thorough examination....we were told our beautiful son is blind. In his left eye there isn't even a reaction to light, but in the right there is a reaction. The doctor said Ollie will only be able to see light out of the right eye, but that is the extent of his vision. This is a tough pill to swallow...

Jason said to me a little after we heard the news,"You know, I still feel blessed." He is 100% right! We are still blessed... I have my child here to snuggle and love on while others to do not even have this opportunity. I'm not saying everyday is a good day, but I try to remain hopeful and thankful for what we do have. This will be a whole new journey for us as a family. We will have a new "normal" and that's ok! Everyday, I will learn something new to benefit Ollie and provide him with endless opportunities.

I just want to add how amazing Owen has been through the crazy past 4 months. He truly loves his baby "butter"! He always kisses him goodnight and makes sure he is covered with his blanket. I'm always reminding him that we love him so much and try to give him as much possible attention as I can. I am one blessed mommy with two super boys...wait I should probably add the hubby in so I guess I have 3 super boys! :)

Thursday, June 6, 2013

Calling all ears!

Yesterday, Ollie had an in depth hearing evaluation because he never passed the newborn hearing screen for his left ear. For awhile now, I have felt like he is deaf in his left ear, but I was definitely positive he could hear from his right ear. The test and an Audiologist confirmed what we were already thinking. I know the Audiologist was surprised that we took the news so well, but I know Jason and I had already braced ourselves for the official findings. I am just truly blessed that Ollie can hear me say, "I love you" and for me that is all I need to know. Through extensive testing, we have learned that a hearing aid would not benefit him and instead he will need some type of bone-anchored hearing device such as BAHA. There is a specialist at Riley for these devices and we will be meeting with him to decide what is best for Ollie. We want to provide with the best solution and help him in any way for his development.
As time goes on, I feeling more and more blessed for the little things...Thank you, God for letting our precious boy hear our voices! I think about how fortunate I am and how many things I have taken for granted...it has taken this amazing, little boy to show me what life is all about. As a family...we CHARGE on!!!

Sunday, May 26, 2013

Well hello update!

Sorry for not keeping up the past few weeks, but let me catch you up on Mr. Ollie :)

Ollie had an EEG done to make sure he wasn't having seizures and to check to see if he was at risk for seizures. The test itself is simple and noninvasive, so I was all for it! The best news of all was the EEG reading was normal :) Now...do a happy dance with me!!!!

For three weeks, Ollie only gained 2 ounces. That being said, I look at every week that is not a loss in weight a very positive outlook no matter if he stays the same weight. Like I explained to the doctor....every itty bitty weight gain is a progress in the right direction! I am very happy to tell everyone that Ollie is over 8 pounds!!! Holy cow...I always almost thought it was becoming impossible, but Ollie always seems to amaze me!

Ollie had a follow-up appointment with Pediatric Surgery for his Ladd's procedure and G-tube placement. We all agree that Ollie's incision from his surgery looks phenomenal. The surgeon switched Ollie's MicKey tube to a MicKey button, which lessens the chance of him pulling it out. So far, we are loving the MicKey button and I don't think it bothers him as much :)

Well....Ollie had his second swallow study last week. I was trying to stay optimistic, but I was prepared to not have hopes set too high. Poor guy aspirated on every little swallow he took. They tried a super thin nectar to a thick nectar, but he aspirated on all of the trials. It's just too risky for him to take anything by mouth.

We meant with developmental pediatrics last week for our initial appointment with them. We went over Ollie's CHARGE diagnosis. He reiterated to us that we don't know how Ollie will be developmentally or possibility of eyesight. As of right now, Ollie isn't showing any signs of tracking with his eyes nor does he reach for objects, but I am still staying hopeful! The doctor's main concern with him right now is his ongoing throwing up. If his throwing up continues his esophagus could be damaged, he may develop an oral aversion, slow progress in weight gain, and the biggest concern is they may have troubles intubating him for his open heart surgery. We have a few options to try to see if it helps like putting him on continuous feeds so he is getting smaller increments rather than larger volume feeds. We are currently trying this and we don't notice much difference in his throwing up. :/ We will be talking to developmental ped's on Tuesday to move on to option two.

Please keep our little fighter in your prayers and rock your Ollie's Buddies bracelet!





Wednesday, May 1, 2013

Ollie's Buddies, we now have bracelets!

Jason and I wanted to spread the awareness for CHARGE syndrome! Also, we wanted to show support for Ollie! We had bracelets made just for this and we want to share them with you as well! We have decided to not set a price on the bracelets and instead we are just asking that you make a donation of any kind whether that be $1 to $1 million dollars (hey a girl can dream)! Jason and I have been thinking of some really neat ideas of how to share they money we make from the bracelets and I will let everyone know exactly what we do decide on :) If you are interested in getting one of these bracelets please send me an email kaleighfruits@gmail.com



Charley's Heart

A very special thank you to Charley's Heart! They made Ollie a special monkey! Please visit charleysheart.com to read their story...it's very touching!





Wednesday, April 24, 2013

Pop goes the g-tube...

Well Ollie decided he needed to visit his second home last night. Jason and I were just chatting away when Ollie decided it was necessary for him to wrap his little monkey toes around his g-tube and yank it out! Can you say...OUCH!!! Jason and I heard a loud pop and just knew that he pulled it out...ugh! I quickly washed up and grabbed the replacement kit, but of course the dang replacement tube wouldn't go in, so I placed a smaller temporary tube until we could make into the ER. Once we were down there, the doctor tried to place another g-tube and he was unsuccessful, which honestly made me feel better because I didn't look like an idiot when I told the doctor that the tube wouldn't go back in. They dilated Ollie's stomach to stretch it back out to put a new tube in. Once they did that we were golden! I'm sure it wasn't pleasant for Ollie, but he was a trooper as always!

Friday, April 12, 2013

Keep Calm and CHARGE on

I am learning so many new things about CHARGE syndrome! I joined a group on the Internet with other parents who have children with CHARGE syndrome! It has been a true blessing. It's like going to Kindergarten all over again...I have found my group of friends that I belong with and have the same interests (our sweet, little CHARGErs). I can only get so many answers from doctors, but these parents have been living with these children 24/7 and have the honest answers. For instance, I found out the other day that CHARGE syndrome heightens your sense of touch, which is understandable due to their lack of other senses (vision, hearing, and smell). It is difficult for them to touch a new surface such as grass or going from carpet to wood flooring. I had never even thought of this nor did doctors even mention this to us.

These parents know exactly what I am experiencing on a daily basis. They are so open and willing to support you in anyway! It is exactly what I needed to add this journey. All of children have their own stories and a wide-range of daily struggles, but they are all so amazing!

Thursday, April 11, 2013

<3

Yesterday (April 10), we had a follow up with the cardiologist. They did an echo to check on his heart issues and make sure the flow and leak haven't worsened. It was a nice, smooth appointment for a change...nothing new has come up! The only thing that would have been better is if they told us by some miracle his heart was fixed and there would be no need for open heart surgery! The doctors have well prepared us for reality though, as he grows he will only get worse, but for now he is good, so I can smile an go about my day! :) Fingers crossed and many prayers that Ollie will make it until sometime this fall for surgery! It is all up to the little bugger!

Wednesday, April 10, 2013

Gulp gulp!

On Monday (April 8), Ollie had his first swallow study. During the study, they had him drink barium so they could see him swallowing on the X-ray. He sat in a baby recliner...literally just needed a cold drink, popcorn, and a tv! He had it made! I gave him a few swigs from the bottle, but he aspirated. Then we thickened up the bottle with rice since sometimes babies swallow better if consistency of the milk is thicker. Ollie still aspirated on the thickened milk, so no oral feedings for him as of right now.

Saturday, April 6, 2013

2 months old

Ollie is already 2 months old...crazy!!! Ollie weighs 6 pounds 9 ounces right now. Considering all things, Ollie is doing quite well. He is having troubles gaining weight, but this is very common in babies with CHARGE and babies who suffer from heart defects. In the past week, he has started doing labored breathing. It totally freaks this momma out! We have an appointment with Cardiology this week to check on his heart and maybe I can get answers as to why his breathing has changed.

Tuesday, April 2, 2013

CHARGE ahead!

This past Friday (3/29) our Geneticist called and told us Ollie's CHARGE syndrome test came back positive. CHARGE syndrome basically breaks down all of Ollie's issues and labels them. I had never heard of the syndrome until they diagnosed Ollie. Normally, only 1-2 cases of it are diagnosed a year at Riley. Honestly, we knew they were going to treat him as if he had the syndrome, but we thought it would come back negative especially since it only picks up on the mutated gene 60% of the time. I have mixed feelings on this because of the unknown road ahead. Scary in many ways, but ever so hopeful! I'm grateful to know....just nervous! We will as a family CHARGE ahead!!!

Thursday, March 28, 2013

Enough already...

After a couple of days on IV fluids and dextrose, the doctors gave the go on feeding Ollie. He had troubles sucking, swallowing, and breathing at the same time, so they determined the best way to feed him was through a nasal gastric tube. They tried to place the tube in his left nostril, but couldn't get it through the nasal passage. This is how we found out about his choanal atresia in his left nostril. After ENT came to examine Ollie, we found out his left nostril is completely blocked and his right is narrowed. The great news is this does not have to be operated on until the age of 4-6. :) The bad news was the only way to feed Ollie was through an oral gastric tube, which could only be used temporarily. Over the next few days, Jason and I contemplated the idea of having a gastric tube put directly into his stomach. A few more days went by and we knew the answer was to have the g tube put in. The next morning Ollie had an upper GI done to check the placement of his stomach. Jason and I had grabbed some lunch and chatted away about how excited we were to have our family together at home. Owen, Ollie's older brother, was waiting patiently at home to meet his baby brother. After lunch, we headed back up to see the little guy and two doctors were waiting on us. Once again, we were being hit with more bad news....Ollie's intestines were malrotated and his appendix was located on his left instead of the right side. The upper GI also showed three more issues with Ollie's heart. What was supposed to be a simple surgery turned way more complex! I thought in my head...enough already! I leaned over Ollie, looked over at the doctors and said, "Could there be anything else wrong in this four and a half pound baby?!?" I was so tired of taking 2 steps forward and 5 back. On February 20, Ollie had the Ladd's procedure and g tube placed. Surgery went great, but nothing prepares you as a parent to see your baby on a vent. When your baby is hurting, as a parent, you want nothing more than to take their pain away. Going through all of this with Ollie, I have learned that nothing can prepare you for the intense feelings that parenthood brings. One of these intense feelings is unconditional love, but stemming from this is the urge and obligation to protect.

Wednesday, March 27, 2013

My little superhero!

I will admit, I had fully accepted the issues going on with Ollie's heart, but I was not prepared to hear everything else....

The NICU team told us Ollie had coloboma of the iris in both of his eyes. Ollie has what looks like black key holes that go from the pupil all the way down through the iris. I tell him everyday that only superhero babies are born with these super cool looking eyes! :)

Later that day, opthalmology came to examine Ollie's eyes. The news was in...Ollie has clefts in his eyes where the eye didn't finish forming completely. As of right now, we know he will suffer from some vision issues, but to the extent is something we are unsure of. I can remember asking the the ophthalmologist, "So what is the potential for his eyesight....are you saying he could be blind?" We won't know the answer for awhile...

Adventures at Riley

We patiently waited while the NICU staff got Ollie all settled in. Ollie was having an echo done immediately, so Jason and I sat by Ollie's side with so many lingering questions. Jason and I grabbed a couple of hours of sleep while the NICU team gathered answers. Around 8 in the morning, we were taken to a conference room where a team of cardiologist explained exactly what was going on with Ollie's heart.

Ollie has a congenital heart defect known as tetralogy of fallot. He will have open heart surgery to repair his heart sometime between now and the age of 1. The bigger we can get him, the better off he will be!

Tuesday, March 26, 2013

Oliver Hayes makes a grand entrance...

Oliver Hayes Fruits was born on February 6, 2013 at 12:45 in the afternoon. Jason and I fell in love again with another precious baby boy! It was a moment of overwhelming joy and feeling so blessed for everything God had gratefully given to our family. We were oblivious to the journey that Ollie was about to take us on....

When I was around 32 weeks pregnant, we found out Ollie had an irregular heart beat, but we honestly thought the irregularity would correct itself after he was born. Shortly after Ollie was born, we discovered he had a heart murmur, but no red flags were being raised since many children are born with heart murmurs. Our wonderful doctor decided to order a few tests (xray, echo, ekg) just to be on the safe side. In the mean time, Ollie wanted no part of these orders, so he started desating. All I can remember is having this nagging feeling that something wasn't right...motherly instinct, I definitely think so. We waited for Ollie's return from his tests, but instead our nurse came into our room and told us Ollie was having troubles with desating. They took us to the room that Ollie was hanging out in while we waited for the test results. The doctors explained to us that Ollie had multiple issues with his heart and we would be headed to NICU at Riley. Needless to say, by this point I was an emotional mess and just wanting answers as to what exactly was wrong with my baby. Around midnight, we were headed to Riley.......I can honestly say seeing our 10 hour old baby being loaded onto a lifeline stretcher was one of the most heart-wrenching experiences I have ever had.