Monday, February 25, 2013

Meet our February 25th Heart Warrior Liliana Grace

❤ Heart Awareness Month ❤ Meet our February 25th Heart Warrior Liliana Grace. Daughter to Julie & Andrew Schneider.

Liliana Grace’s story as told by her Mommy:

This is our rock star, Liliana Grace who was born in late 2011. She was diagnosed with Hypoplastic Left Heart Syndrome (HLHS) at 20 weeks in utero. She was delivered via c-section full term at NYU. She had her Norwood at 2 days old and the brilliant Dr. Mosca closed her chest 2 days later.

She was discharged after 16 days with a feeding tube in her nose. She pulled out the tube after being home less than 24 hours (I FREAKED out) and the fight was on to get her to take full feeds by mouth. She gained and lost weight like a roller coaster. She finally made it to her Glenn (2nd surgery that children with HLHS get) at 6 months of age and she was home with no complications after 5 days.

She was very curious as to why she was in the hospital and kept a watchful eye on EVERYTHING the nurses did. One nurse actually became paranoid at how Lily watched her change an IV bag. Today she is a very happy and is still a very curious 15 month old that has a cardiologist in Brooklyn that described Lily as one of the most successful cases he has seen.

We are moving to Wisconsin in March so she will have a new team of doctors to impress and we can get an idea of when her Fontan will be (this is the 3rd surgery that children with HLHS get- usually sometime around 2-3 years old). We never stop praying for her and all the other children having to go through open heart surgery. It does get easier but no matter what, CHD’s suck. **CHD means Congenital Heart Defects.. and they do suck :) ** Picture is of her rocking mommy's earmuffs.

Thanks Amy. I will never forget your Lily Grace. (Thanks for never forgetting my Lily Grace!!)

**My angel Lily Grace also had HLHS like Liliana Grace. Love the name- the resemblance in names is crazy. Also, one of my Lily’s surgeons was Dr. Mascio and Liliana Grace’s surgeon was Dr. Mosca, thought that was neat.

Sunday, February 24, 2013

Meet our February 24th Heart Angel Avery Jade

❤Meet our February 24th Heart Angel Avery Jade Taylor ❤ Daughter to Emily Kleinhelter. 

Avery’s story as told by her Mommy: 

Avery Jade Taylor July 24, 2012 - August 27, 2012

I’m writing this for my angel who received her wings on august 27, 2012. We found out we were having a girl and on my next appointment they said they needed to redo her ultrasound because they couldn’t see her heart or diaphragm.

During the ultrasound, the tech realized that our baby girl had 2 holes in her heart. So then we were scheduled for a fetal echogram with pediatric cardiologist where he found a very large hole in the bottom of her heart. Her arm was in the way so he couldn’t tell if she had any other defects. He decided that we would wait until birth to do a follow-up echocardiogram.

The big day came.. July 24, 2012 I was to deliver via c-section (because my oldest daughter was also c-section). At 9:09 am our 8lb 7oz 20 inches long beautiful baby girl cried out loud for the first time :-).

At 3 minutes old as her Daddy and I were naming her, she coded and they had to bag her. Within seconds she was ok. Her Daddy and I got to hold and kiss her a few times before she was taken across the pedway to Kosair.

As soon as I could feel my legs again I walked to go see my miracle baby. We couldn’t wait to hold her but we couldn’t for the first 36 hours because she had umbilical lines put in. Later that day we got the echocardiogram results: she was diagnosed with Transposition of the Great Vessels, a large PDA, blocked left pulmonary artery, and a 9mm hole in between the great vessels.

Because of the large hole, it gave a place for her oxygenated blood and unoxygenated blood to mix and be properly distributed through her body. You see.. the the vessels were backwards so it couldn’t give her body oxygenated blood like ours does BUT because she had the allowed her body to do it. It’s like the two defects actually compensated for each other. This was only temporary though so they needed to do surgery on her heart.

On August 7th at Doctor rounds they decided that they were going to do a total repair to her heart on august 9th. This meant only one surgery for the rest of her life.

August 9, 2012 came and we were in there with our Avery. We walked her down to the OR, we said our good lucks, and gave her all the love we had. We had a private waiting room, about 3 hours in they told us that the hole was totally repaired. The PDA had been ligated and now to the hardest part- switching the great vessels.

A few hours passed and they came back to tell us that she was losing lots of blood and at this point her survival rate was 50/50. And that there was a very high chance she would go in the ECMO machine which is a life support system that does all the work for your heart and lungs so the body can rest and heal.

After 9 long hours of open heart surgery, Avery was out and on the Ecmo machine. When we got to see her for the first’s a sight that I will never forget or the pain that I felt run through my soul. I wish that I could have taken all those wires, tubes n foreign equipment n put into my body. As a mom u feel so helpless because Mommy’s fix everything.

Avery couldn’t stop bleeding so that night they went back in to stop what bleeding they could. The next morning I watched my baby open her eyes and wiggle her little feet. It gave me such hope that we were on the right path.

After a few days, Avery got septic for a gram negative bacterial infection which caused a lot of complications. Over the next 13 days, Avery underwent 6 more surgeries totaling 8. Her kidneys shut down and she was put on dialysis plus she had a stint put in her left pulmonary artery.

On August 27, 2012 our baby girl just grew tired and the fight was too much. At 9:45am Avery gained her wings.

Today is exactly 7 months from the date that she was born.. her 7 month birthday. This Wednesday, February 27th will be exactly 6 months from when Avery became an angel. I miss her everyday and I wish that she was here with us!! Thank u for letting me share my angel’s story. I love you Avery Jade Taylor!!!! Xoxo sleep in peace baby girl.

**Avery was also at Kosair Children’s Hospital where my sweet Lily was for her whole life. When Lily was there.. only two patients in the whole hospital were on ECMO- Lily and Avery. Avery became an angel on August 27th and Lily became an angel on August 29, 2012. We didn’t meet until one day when Emily wrote on Lily’s Facebook page.. I started asking Emily questions and we put together that we were both there.. we had the two ECMO babies. I knew there was another ECMO baby but I didn’t know if I was really allowed to go find the other baby.. I wish I had.. I wish I knew Avery & Emily before she became an angel.**

I will love you for a Thousand more years...

This song is for Lily Grace and all of our angels in heaven... it just seemed fitting.. I have loved you for a Thousand Years and I will love you for a Thousand More... same for all of my children, family, and friends... ♥

This is dedicated to all of Lily's Friends in Heaven from all of us here on earth ♥

A Thousand Years - Christina Perri Lyrics

Saturday, February 23, 2013

Hairbows for Healing- story of a sweet baby from Kosair Children's Hospital: Hadley

Check out this beautiful baby that we met during our Hairbow donation trips to Kosair. She has been there since our December trip and I just received this message from her Mommy:

"Hey I'm Heather Littrell!! My little girl was born December 10, 2012. I was 27 weeks and 5 days. She weighed 2 lbs 8 ozs. It was a very scary time for us. The week before Christmas you brought Hadley her first bow. Those first few weeks I was really having a hard time but that bow made me very happy!!! You came back right before Valentine's Day and brought her 2 more bows. I got to meet you this time. You are truly a blessing. You spread joy with your bows and hats. You are such a strong mom!! Thank you so much for everything you do. Keep doing what you are doing. People really appreciate it."

How sweet is that! That helps to make my heart and my families heart happy!

When I met Heather during this trip she told me that her baby was too little and couldn't wear clothes for Christmas but the one thing she was able to wear.. our hairbow! See the picture with the red hairbow that has the Christmas tree in the middle.

Then we found a heart bow that perfectly matched her Valentine outfit.. see the bottom picture! Hadley is adorable and her Mom is very sweet!

She later went on to say "Thank you again so much!!! You are such a blessing and I'm so blessed to have got to meet you. I will never forget you and your family. There is a facebook page set up for her: prayers for Hadley Jerica."

The best news is what she told me at the end when I asked if she would be able to go home soon.. here's what her Mom said: "Hopefully this coming week. We are keeping our fingers crossed."

Please pray for baby Hadley and her family! Let's pray that she gets to go home very soon!!

The 6th Lily Grace Challenge.. Lily has been gone for 6 months :(

February 29th would be 6 months from when our sweet Lily Grace became an angel but that date does not exist.. I always hold the "Lily Grace Challenge" on the 29th of the month, the day of her Angelversary so I had to come up with a solution.. It will happen over 2 days this time- she will be gone for half of a year so this deserves a 2 day challenge! 

The Lily Grace Challenge will happen on Thursday, February 28th and Friday, March 1, 2013. This marks Lily's 6 month Angelversary.. the day that our sweet baby Lily Grace became an angel. Time just keeps slipping by without Lily... that's very hard.

In honor of Lily's monthly Angelversary, I ask everyone to do something nice for someone else- that is the challenge! Her angelversary is a very hard day for all of us and I am try to turn that day of sadness into more of a positive day (as much as possible).

So I challenge each and every one of you to participate in the Lily Grace Challenge. Please share this..tell your family and friends about it too. I challenge you to do at least one nice thing for someone else and this could be big or small. Just do anything that would help another person- plus you won't expect anything in return and if they want to repay you in any way just tell them that they can repay you by doing something nice for someone else in honor of Lily Grace.. and tell them her story if you want too...

Our Lillian "Lily" Grace was such a wonderful, sweet and perfect baby that left our world way too soon at just 18 days old. I held her as she took her last breath and the whole time she kept one eye looking at me and everyone else until she took her last breath.. hardest day of my life. To help make this time of the month more positive for myself and my family.. I ask you to help me honor Lily and all of her friends in heaven.. please do something nice on the 29th (or in this case the 28th and 1st day of the month)to remember not only Lily Grace but all of our loved ones gone too soon.

Thank you everyone! When you are done with her challenge please post "Done Lily"... that way Lily knows you are done. :) This Lily Grace Challenge will help to honor the memory of our precious Lily Grace on such a sad day for everyone touched by Lily Grace. Spread the word... Thanks everyone!

I wish I could have held you forever Lily Grace...(picture may be hard to see)

This was posted on Lily's Facebook page last night "Never Forget Lily Grace":  

❤Lily..I held you for at least 4 hours after you became an angel.. 

I wish I could have held you for days.. for months.. forever.. 

I never wanted to give you up.... 

I can't shake the image of your last breaths..

your beautiful lips and skin that..changed..

Your temperature.. changed..

I closed my eyes to sleep tonight.. Hoping to dream of you and I can't shake the image of your "last" everything..

I only share this because it's my reality.. and the reality of too many people.. no matter the age of their child or loved one.. these images (photographs/ memories/ mental images..) are hard..

These images.. the sounds, the room, the touch.. the conversations.. the music playing.. the machines.. the hospital...walking away.. the day of Lily's last everything..

I will never forget.. it feels like yesterday.. ❤

Can you imagine....

I posted this on Lily's Facebook page: Never Forget Lily Grace on February 21, 2013: 
Can you imagine...

doctors telling you that your child may not make it...

Having a child that your family falls in love with...and just like that, they're gone..

Having doctors say..we're sorry but there is nothing more that we can do...

Looking in your child's eyes while they look at you... and telling that child that you love them SO MUCH and you'd give anything to keep them here with you...but there is NOTHING that you can do...

Losing your any any way...

Can you imagine???....

I wish I didn't know what that felt like..

Sadly.. it's our reality.. my families reality.. my reality..
and the reality for so many other parents & families too...

Lily Grace Project Hairbow Models Gracyn & Riley!

Lily Grace Project Hairbow Model ❤February 23rd Heart Warrior Gracyn❤ 

Her Mommy Caitlin bought a "Lily Grace Project: Hairbows for Healing" hairbow and she just received it yesterday! 

Caitlin said that her bow is adorable and she sent me some beautiful pictures so I could share her beautiful Gracyn wearing her "adorable" heart themed hairbow!! 

Meet beautiful Riley! Her Mom Jennifer Cobianchi Dunn bought a "Lily Grace Project: Hairbows for Healing" hairbow for her precious daughter! 

She wanted to share her daughter wearing her surprise hairbow from us.. a heart hairbow from Lily Grace!

February 23rd Heart Warrior Gracyn

❤ Heart Awareness Month ❤ Meet our February 23rd Heart Warrior Gracyn. Daughter to Caitlin Nicole Rice. 

Gracyn’s story as told by her Mommy: 

Gracyn was born on October 19, 2011. She was perfect and seemed healthy. A few hours after Gracyn was born the nurse wanted to take Gracyn to give her a bath and her daddy went with her. 

He came back and told me she was breathing a little fast and they were just monitoring her. He went to go check on her an hour or so later and they told him she had to go to NICU because she wasn't getting any better.(I tested positive for Group B Strep and they think she got it). She just kept getting worse.

She ended up having to be intubated and was on oxygen and nitric (I think that is what it’s called). I had her on a Wednesday and they released me on Friday even though I begged them not to. I didn't want to leave Gracyn. Luckily a social worker got us a parent's room on the NICU floor. We got to stay there Friday night.

They called us at 5 am on Saturday morning and told us we needed to come talk to the doctor. When we got there the doctor told us that there was nothing more they could do for her and that she needed to be transferred to Children's in Dallas because she needed to be put on ECMO. I can't even describe how that felt.

I can't even remember most of that time period because I was just in shock and didn't know how to handle it. I had never been in that position before. So Gracyn was transferred to Children's when she was 3 days old. After she got there she made a miraculous turn around. She was doing so well that doctor's were trying to keep up with her!

When she was 6 days old we had a cardiologist come in and tell us some unexpected news. She told us Gracyn had a large hole in her heart called an atrial septal defect (ASD). I was freaked out! I had just come so close to losing my baby and now she has a heart defect.

The cardiologist assured us that it was ok and that it wouldn't harm her. Gracyn was released from the hospital on October 30, 2011. She was followed by the same cardiologist that she saw in the hospital. She did great until she was about 4 months old. She wasn't gaining weight or growing very well. She had a heart check up at 6 months old and they said everything was great. She kept having problems with weight gain and growing so in September 2012 I called and begged them to do an echo at her next visit, which was in October. They agreed and we had a sedated echo done on October 25, 2012.

After the doctor reviewed the echo she came in and told us that Gracyn has a large ASD still and that there was no chance of it ever closing on its own. My first thought was ok she will have the cath procedure done then. Well then the doctor said it’s not in a good place and it’s too large to do the cath procedure so she needs open heart surgery.

I was beyond shocked and devastated. I never thought she would have to have open heart surgery. I am still not completely over what happened to her when she was born. Since we found out she needs surgery it has been hard for me to accept it. It has gotten better since we finally found a good cardiologist, hospital, and team. She is scheduled to have her surgery on June 6, 2013. Even though she has been through a lot she is a normal 16 month old girl who loves to get into everything and run around everywhere.

Visit Gracyn’s website for more information about this beautiful girl:

February 21st & 22nd Heart Warriors: Jon & Maverick

❤ Meet our February 21st Heart Warrior Jon ❤ Son to Candice Rigdon. Jon was born on the 21st of the month so I thought this was a good day to honor this sweet little boy!!

Jon’s story as told by his Mommy:

Our miracle baby was born 11/21/11 at 9:55pm, 6 lbs 9 oz. 20.5 inches - with Hypoplastic Left Heart Syndrome (HLHS) and a few other minor issues related to this condition. Basically he has half a heart. He has already had 3 open heart surgeries all before he was 4 months! Jon's daddy, Shane is in the Army stationed at Fort Sill, Ok. We have two girls as well. Trinity, 11 years old and Destiny, 26 months old.

We found out about his condition at our 20 week ultrasound. The scariest news I've ever gotten in my life. Though we were blessed to find this out before he was born as our hospital would not have been equipped to give Jon the care he needed right after birth.

We temporarily relocated to Dallas, TX. Jon received treatment at Children's Medical Center Dallas. Most of the time I stayed in Dallas with Jon and Destiny. Shane maintained the home front in Oklahoma as he had to return to work and keep Trinity active in school. Shane tried to visit every weekend. This was our life for nearly 4 months. Jon's fragile stage between his second and third surgery required us to be close to the hospital. Once he received his third surgery, the Glenn we had a two week check up and our little man proved to be quite the warrior! He was doing great and we were given the ok to go home!

Though I was a bundle if nerves having Jon home for the first time and being far from his hospital we adjusted well to our new normal. Jon is 14 months old now and doing awesome. He continues check ups in Dallas every 4 months. He will need at least one more surgery at 3-4 years of age and possible a heart transplant later on his life.

I believe the hardest part of this journey is the unknown. I remind myself daily to enjoy each moment we have with our miracle boy. As we have become close to many in the heart baby community life is bittersweet. We face the harsh reality of being a heart mom as fellow heart babies struggle in their battle, and some sadly lose it. We also rejoice in the triumphs of fellow heart warriors thriving in their journey. With the love and support of new and old friends and family we move forward with a bright future for our son in sight. It has been a long road already, but God has blessed us and Jon is doing awesome!

Please visit Jon's Blog and Page where you can read his full journey and receive updates:

❤ Heart Awareness Month ❤ Meet our February 22nd Heart Warrior Maverick. Son to Kirstin and Brandon. 

Maverick's story as told by his Mommy: 

Here is my little mans story 

On Valentine’s Day 2012 Brandon and I were heading to the OBGYN for a really exciting day. One we had been waiting on since we had found out about Baby Davey.

It was our 20 week anatomy scan and we were going to figure out (FINALLY) if we were having a little boy or a little girl. Our ultrasound took forever. We were told we would be having a little boy!!! We had already picked out a name for our little sweetie, his name was Maverick.

After she told us his gender it was scan after scan after scan of his heart. The lady told us she couldn’t see his heart very well and that it might have been because of the way he was positioned. We left the room and went to see my OB. She told us that we would just repeat the scan at our next appointment which at that point was a month away.

We were fine with that (who wouldn’t want to see another beautiful profile of their unborn baby?). We went to the mall and bought our baby boy to be a superman onesie and went home for a Valentine’s Day date to watch Top Gun ❤.

The next day we were going about our normal business and I received a call from my OB saying that she was reviewing Maverick’s scan and she wanted to send us to get a special scan of his heart called a fetal echocardiogram. She said she couldn’t see his heart very well either and this was the best way to get a view of his heart, it could be nothing so we were told not to worry.

We scheduled that first fetal echo scan for March 20, 2012. It was 5 very long weeks away. (Quick side note: I felt something was wrong since we had found out about Maverick. I bled a lot in the beginning and we had MANY ultrasounds, all of them showing a perfect heart, and perfect baby). We were nervous, but we kept telling ourselves that it was just to rule out that anything was wrong with his heart. How could it not be perfect, I had done EVERYTHING right?

March 20 came slowly and finally it was the day we had been waiting on. It was stressful waiting because our appointment was scheduled for the afternoon. After waiting in the waiting room for what felt like an eternity we were called back. An ultrasound tech came in and did an anatomy scan (mostly in 3D which was AMAZING to see, and of course we fell in love with Maverick all over again).

Then our cardiologist came in, one we would get to know very well, and he did the fetal echo. It was about an hour of pure silence, you could tell he was really focusing and trying to get the best images. Brandon and I were just staring at the scan trying to figure out what blurry parts were where, when Dr. Kumar broke the silence with “It seems as though your baby has Hypoplastic Left Heart Syndrome”. Brandon and I stared at him blankly. What in the heck is that?

My next question was “Is that bad?” The doctor let us know as he was drawing a diagram of a normal heart and Maverick’s heart to show us the differences that it was extremely severe and not good at all. He also showed us that Maverick had Double Outlet Right Ventricle and Mitral Atresia. He asked us if we had questions, we met with the coordinator who would ease our fears and answer millions of questions in the future.

They told us we had the option to abort if we wanted to. Excuse me? Yes, they legally have to give that option to babies with this severe of a diagnosis. It wasn’t an option for us. Then we got the “don’t google his diagnosis, only go to accredited sites like Mayo Clinic”.

On our way home from the appointment it was silent in the car. I called my mom first and could barely get through the conversation because I was crying so hard, Brandon was crying as well. I later found out that when we got off the phone, my mom cried when she told my dad. This wasn’t just going to affect us; it would affect our family too.

We drove to Brandon’s family’s house and told them the news, we drew pictures, and it was at that moment when we looked at them that we realized we would have to suck it up and be strong for everyone. Maverick’s little self needed to be surrounded by positivity and that was what was going to happen.

The thing with most Hypoplast babies is that there is a way to alter their heart’s anatomy to make it function affectively. It is a three step surgery process. When I say surgery what I mean is open heart surgery, the baby is on bypass. The first surgery happens right after birth, the second a few months later and then the third a few years later. We took this time to find as much information as possible.

We networked, I found Heart Sisters who provided me with my first ounce of hope. Then they led me to my Heart Mamas who I laugh with and cry with and love their babies like they are my own. They provide me with support during my darkest moments, they understand.

The decision was made that Maverick’s birth would be Induced on June 29, 2012. He was born via caesarean section at 11:17pm on June 29th. He was gorgeous and perfect and looked healthy. He didn’t require any intervention until he was 2 weeks old (we stayed inpatient until then). He didn’t have to have the first open heart surgery; he instead had 2 closed heart surgeries. He had a PA banding and then an atrial septostomy.

He recovered well and we stayed in the NICU until he was 1.5 months because he was having a hard time eating. We went home late August and Brandon and I started classes the following week (we are both college students). Maverick had many checkups and echocardiograms. He was in the pediatrician’s office MULTIPLE times a week. I still felt like something was wrong so I was a nervous wreck. He had blood clots so we were giving him twice daily shots of lovenox (blood thinners, but overall he was our champion.

Brandon and I made the decision to check for second opinions and landed at Riley Children’s hospital. They have a surgeon that is ranked in the top 1%. If our little baby was going to have a huge surgery, we wanted the best. We went for an initial appointment and fell in love with the hospital. Maverick’s second surgery (hemi-fontan) was scheduled for December 14th, and he had a heart catheterization to check function and pressures scheduled for November 2nd. We were nervous, but it was just a cath.

The morning of the cath Maverick was super smiley and playful. They took him back and the cath was successful. His pressures were a little high, but we were still set to go ahead with the hemi-fontan. Heart catheterizations are usually outpatient procedures so we went home that evening.

That night Maverick was a little fussy which was totally understandable, he didn’t want to eat much either, which was definitely not out of the ordinary. It was a long night because he wasn’t sleeping very well and something just didn’t feel right. His face was swollen. We called the fellow on call and they said he was probably having an allergic reaction to the tape that had been placed on his face during the procedure, but if he started breathing heavier to bring him in to be looked at.
We went to sleep.

The next morning nothing had changed and the Benadryl that we gave him hadn’t made a difference, his face was actually more swollen. I emailed his cardiologist and she must have been busy (she’s EXTREMELY busy all the time) so we just made the decision to take him in to be checked out.

The lady checking us into the ER got us a room right away and we had a nurse with us from the second we got there. We love Riley Children’s Hospital. About a half hour after we got there Maverick was breathing really heavy and quickly, an hour had passed now and he was gasping (grunting) for air.

They were quickly trying to get an IV in him and he just laid their limp, he had no energy. It was terrible to watch. They checked his blood gas (VBG) and his PH was 6.99. The doctor told us later on that with a PH that low, most babies don’t make it.

Maverick was set to head to heart center, but after that result he got rushed (I’m talking full on jogged to the ICU). When the team got to the elevator they pushed Brandon and I out. The last thing I saw was the Respiratory Therapist rushing to the front of his bed and grabbing an ambu bag. I still have nightmares about this moment.

The moments that followed were in slow motion. I fell to the floor sobbing, I didn’t know where my baby was going, I didn’t know what to think, when an RT runs to the front of the bed with an ambu bag it is NEVER a good thing. We were terrified. Brandon was the smart one (thank goodness) and watched the elevator light to see what floor they got off on.

We caught the next elevator and meandered down the long hallway leading to the ICU. We got to the door and pushed the button to ask someone to let us in. When the door opened a couple of nurses stopped us and told us we couldn’t see him yet and that our doctor would be out soon.

Finally we were ushered to a waiting room and when the doctor came in she told us what no parent wants to heart. “We aren’t sure if Maverick is going to make it”. We had a long conversation and talked about the possibility of ECMO (not a good thing) and the possibility of heart transplant. She gave us a hug and then left the room. The rest of the time we sat in the waiting room and prayed with the chaplain.

Heart transplant was always a possibility for the future, but we hadn’t really ever considered it because maverick was a candidate for the 3 stage surgery. Heart transplant isn’t an overall fix. Like our favorite interventional cardiologist said to us “with heart transplant you are trading one illness for another”. We were finally taken to where Maverick was and he was paralyzed.

He had a breathing tube in and tons of IVs coming from everywhere. He was laying naked on the bed all sprawled out. He had a heating blanket on and was white. He had stuff all over him. It is terrible to see your child like that, but sadly enough we had seen this before. 

Everything went uphill for Maverick from there out. He impressed all of his doctors and was finally allowed to go to heart center. Once we were in heart center we were listed for transplant.

Maverick was listed as status 1a because he was on a life support does of Milrinone. We waited for two months. January 4th we received the call that would change our lives forever. They had found a perfect donor heart for our sweetie.

I don’t know how to put into words what you feel when you get that call. I immediately started shaking. I left the room to call my mom and about passed out walking down the hallway. I bawled the whole time I was on the phone with her. I couldn’t focus on anything. I was so happy, so scared, so sad for the family, so everything. It was a confusing time. It was a long 48 hours. Brandon and I got about 2 hours of sleep and then went back the next morning for Maverick’s special Heart Day.

It was January 5th, a day we will remember forever. We spent the whole morning with our precious miracle. We cuddled with him, played with him, prayed over him, cried with him, laughed with him. At 11am they came to get us and we walked him to the OR, the whole time I was trying not to cry when I was answering questions about him. The OR nurse came and took him from me to walk him to the OR, we told him we loved him and then he was gone. I started crying. I cried for about 5 minutes and hugged Brandon and then I was done. It was time to be positive.

Our amazing friends and family surrounded us that day with love for our Maverick and love for us. We had a great day with them and they were the perfect distraction. They held their breath with us every call that we got, and breathed a sigh of relief when we got the world’s most amazing call. The new heart was in and beating. How do you describe that moment? You just can’t. It was beautiful and perfect and I will remember it forever.

I hold our donor family very close to my heart. They made the ultimate sacrifice and gave my child life. Their child will live on in Maverick for as long as we are blessed with him, and we will make sure Maverick knows about his amazing gift of love.

Maverick is 7 months old and 1 month post transplant now and he is doing amazing. He has a facebook page called Maverick’s Mighty Heart which I try to update every day. Last Monday we found out that from his first biopsy his body hadn’t rejected his new heart at all. Our story is a messy, crazy, beautiful, but it is ours. ❤

Wednesday, February 20, 2013

Card from Kosair Children's Hospital.. so sweet!

❤❤ Look at my surprise in the mail today ❤❤

A special card from Kosair Children's Hospital for my family and I ❤❤❤.. how sweet.. made me cry.. 

I never imagined that hairbows could have such an impact on others ❤❤ My heart is forever shattered but the response that we get from families and Kosair for our Lily Grace Project makes my heart a little more happy..

❤ Look at what you're doing Lily Grace!! Only here on earth 18 days after being born but you are impacting the world!! Love you sweet angel..❤

February 20th Heart Warrior "Ari Danger"

❤Meet our February 20th Heart Warrior Ari “Danger” Schultz ❤ Son to Erica & Mike Schultz. Ari just celebrated his first birthday on February 16th.. happy birthday little man!! 

Ari’s story as told by his Dad, Ari himself :), and what I found on his blog:

On Wednesday, September 28, 2011 Erica and I went in to Mass General Hospital for our 18 week ultrasound. We we’re excited to find out if we are having a boy or a girl. It’s a boy, and he has a special heart.

In this case, special = big challenge. A Critical Aortic Stenosis was detected at ultrasound, confirmed at echocardiography the next day by two pediatric cardiologists at MGH, and re-confirmed Monday October 3 at the Advanced Fetal Care Center at Children’s Hospital in Boston by the world’s leading pediatric cardiologist in this particular condition.

This was during Erica’s pregnancy: Frequently Asked Questions:

What do you know about baby Schultzmeister’s heart right now?

Aortic valve is mostly closed. This is bad. So the blood in the heart is flowing in all the wrong directions. Thus the left ventricle, whose purpose eventually is to pump blood throughout Schultz the Younger’s body, is working overtime to try to push blood through the valve. But it’s closed. So the left ventricle pushing harder and harder. Building up pressure. No rest. No release.

With the normal exit door closed, blood is flowing out the in door…in this case, the mitral valve. In other words, the mitral valve is leaking, and is likely also be starting to be damaged, at least a little. In this case this is good as the leakage relieves some of the pressure on the left ventricle. But it’s just temporary. Untreated, all sorts of things you don’t want to happen start to happen.

What happens if we don’t treat with surgery?

99.9% chance of Hypoplatic Left Heart Syndrome (HLHS).
HLHS is what we’re doing everything in our power to avoid. So we’re trying to head it off at the pass with the surgery.

Wayne Tworetzky, the doctor in this video (, is our doctor, along with about 10 other world-class specialists. And there are a bunch of other folks on the care team, most of whom we’ve yet to meet. It’s a team that works together specifically on these. As Dr. Tworetzky put it, kind of like the guys in Space Cowboys, but it’s still a new, experimental surgery. I guess half of the Boston medical community is sounding the alarm for this one. Attention all Colonial units: Cylon attack underway. This is no drill.

What’s with the surgery?

We’re good candidates for the surgery because Erica is young, in good health and shape, the baby’s left ventricle is currently still Hans and Frans, and we’re early in the pregnancy: as of today, 19 weeks, 1 day. Average surgery time is 23 or 24 weeks. But the stenosis is severe, so good thing we caught it early.

To our knowledge, there have been about 140 cases of the surgery. Ever. Dr. Tworetzky and his team have done 89 of them. We’ll be number 90. (Son now has a basketball and soccer number, and a must-beat golf score.)
Been now 10 years since they started doing these surgeries. As they describe it, 10 years ago was the stone age. In the last 3 years, techniques and outcomes have improved significantly, though there’s still very little data and every case is different. No matter what, we’re rolling the dice, but we’re doing what we can to cheat at every turn and fix the game so we and the little bugger win the jackpot. Come on 7…baby needs a new pair of valves.

They had the surgery in utero and he did great..then a few months later.. Ari was born on 2/16/12. His Dad then wrote this:

Back to the big game. When little dudes like me arrive at the big show, our hearts act like they’re working, but they’re essentially on training wheels. Like a kid learning how to ride a bike, mom was holding the seat. It felt to me like I was doing it all on my own, but it turns out she was back there the whole time.

Once we come out, the anatomy of our hearts physically change. The training wheels fall off and we are left to run our own bodies with our own hearts without mom holding the seat any more. This change typically takes a day or two.

Due to the two fetal interventions, my left ventricle was pumping away when I came out. (Yay!) It doesn’t look great, though. It’s small and full of endocardial fibroelastosis, a.k.a. scar tissue. (Boo.)… to read more..please visit this cute little man’s blog: and his Facebook page:

P.S. The blog is really funny.. it is written by “Ari Danger”.. AKA Dad I believe.. really cute. Ari is such a cute baby and he just turned one.. so surgery has done wonders!!

Stress and Grief.. ugh..

Posted last night on Lily's Facebook page: Never Forget Lily Grace

Does stress make grieving over your angel child worse or does grieving over your angel child make things more stressful? I don't know the answer to that.. I'd like to know. 

You could be grieving over a parent, spouse, friend, pet.. any big loss in your life.. So do you think stress makes grieving over XXXX worse or does grieving over XXXX make things more stressful??

Ugh.. I feel like I take two steps forward and three steps back.. February is great because there is no February 29th which would be 6 months exactly from when Lily became an angel.. but sadly.. That doesn't mean she hasn't been gone 6 months when March 1st hits..

I wish.. what a joke.. what a horrible son turns 11 the same week that represents life without my daughter...his sister.. all of my kids sister..she will be gone for 6 months... feels like yesterday when she became an angel.. I can remember EVERYTHING so clearly..

What do you think about the stress question....??? ❤❤❤

Tuesday, February 19, 2013

Sweet Angel Stella...

Never Imagined that Hairbows mixed with kindness could mean so much to others... I met a wonderful Mommy by the name of Jacci. She has three beautiful daughters by the name of Emma, Nora, and Stella. Sadly.. Jacci is an angel Mommy too because Stella suddenly and unexpectantly passed away due to Group B Strep.. you know what that is fellow Momma's out there? Many doctors blow off Group B Strep. I never tested positive for GBS until I was pregnant with Lily.. everything was different with Lily's pregnancy.. everything but I was assured it was not a big deal because they could test me at a different time and it could be negative.. anyone else relate to this?

So you get tested for this during pregnancy and then they treat you with antibiotics if it is positive. It is a bacteria that can just live in your body and if your baby comes in contact with it.. it could be serious BUT many doctors act like.. "nothing will happen but we will treat you with antibiotics before you deliver and then your baby after you deliver.. vaginal deliveries have more risks than c-sections but everything will be fine.... your baby will be fine..don't read the can sound scary."

So... Jacci had a c-section (safer than vaginal delivery..right?).. her baby seemed fine and then one day.. all of a sudden.. she wasn't.. it was GBS that took baby Stella away from her parents suddenly.. their life was pretty normal until then.. just like that... children's hospital, hooked up to machines, had to make a decision on what to do.. they had to turn life support off for their baby we did for Lily.. Can you imagine?

So Jacci and her wonderful husband Ryan have 3 girls.. Emma, Nora, and angel Stella. Their baby Stella's name means "star". Jacci and Ryan are paying it forward by helping other people by sharing Stella's things with people who could use them.. they are so caring! So I made and surprised their two daughters with two hairbows that had stars all over it and this is what Jacci wrote on Lily's Facebook page.. it was a message for everyone to see but it was so sweet.. I wanted to share plus I wanted to share their pictures too!

I just wanted to say what a beautiful person you are. I know you were totally broken the other day on the inside but you were able to do something that meant the world to Ryan and I. You were so nice to bring the "A" to Stellas name to ryan and I and give my two girls two bows that represented both Stella and beautiful Lily. It was so sweet. On Tuesday was the first time Ryan was able to hear another angel parent speak about the loss of their little baby. I think it hit home to realize that we are not alone in this horrific journey. When you left Ryan held onto the the lily grace card and cried for you and Lily.

When Emma and Nora got home from school they were so excited to see the bows that represented their little sister (stella means star and the bows Amy gave us had stars all over them). We had to explain to them what happened and Nora says, "I know they are best friends in heaven because they are close in age just like Paigie and me." It was so cute. Thank you for everything you have done. Lily was so lucky to have a mommy like you and I know she is looking down smiling. : ) Here is a huge hug from one angel mommy to another.


**Jacci is working hard to raise awareness of GBS- please visit this website to learn more:

P.S. I hope I did this justice Jacci.. if you ever want to share Stella's story on here.. I would be honored. I would add her to "Lily's friends in Heaven"..even though we already know they are great friends in heaven :)

The Notebook..

Posted Monday night (February 18th) on Lily's Facebook page "Never Forget Lily Grace"

The Notebook.. Within probably 24 hours of finding out that our baby girls heart was sick.. I went and bought a big notebook with pockets and dividers so I could keep all of her doctor appointments, ultrasound pictures, and all important information in one place..easy to find, easy to use, and everything in one place..

I even bought heart stickers to decorate "the notebook".. I haven't looked at "the notebook" which is in a big "Sisters by Heart" bag (given to me by other HLHS Moms) in a few months probably.. It's too hard..

Ricky was cleaning out our closet & pulled out some things for me to go through.. like the "Sisters by Heart bag", purses that I used during & after my pregnancy that were not cleaned out (which contained stuff about Lily)...and then he pulled out a black shirt and said what's this.... "it's the shirt I wore when I last held Lily.. when she passed away".. he quickly folded it up & put it back in the closet..

We grieve differently.. very differently. He didn't mean to upset me... he didn't realize what was in the purses, the "Sisters by Heart" bag, and what he was unfolding when he pulled out that black shirt.. I was already stressed out tonight.. this made it way worse..He just wanted to know why I hadn't cleaned out some of those things..

Here's why: I couldn't face them.. it's too hard.. It was easier to avoid those things for as long as I could.. I knew where everything was.. I wish I still didn't see them.. it's too hard..

I started to flip through "the notebook".. you can see my struggle in the notebook too.. the uncertainty of whether our daughter would live or not.. the back and forth diagnoses for her chromosomes... then everything she would go through after birth.. then good Dr appointment after good appointment..

Then more hope.. higher survival rates..but that's not how her story ended.. I just didn't want to see things like "the notebook", dr appointment cards in my purses, the black shirt... I really wish I hadn't seen it.. ;(

"Lily's in heaven.. she's not in the car.."

Posted Sunday night on Lily's Facebook page:  Never Forget Lily Grace

Parents- Have you ever started walking away from your car when you get a panic.. "Oh no.. Did I forget something.. Someone?"... 

So you check to see that you have all your kids and then.. whew.. You can breathe.. Everyone's okay.. whew.. 

So tonight this happened when we got out to go to Target.. Except that even after I counted and saw 4 kids.. I was still panicked.. I'm forgetting something.. What did I do? Why do I feel this way?.."

Lily.. I panicked because I genuinely felt that I was leaving someone in the car or someone behind... it was Lily except that I can never leave her behind because I can never put her in the car..

It's like a knife to your heart when your mind has to reassure your heart that.. "It's okay.. Everyone's here.. that can be here..Lily's in heaven.. she's not in the car.."

February 18th & 19th Heart Warriors

♥ Congenital Heart Defect Awareness Week ♥ Meet our February 18th Heart Warrior Kinlee Marie. Daughter to Nikki Bennett. (Today is her Mommy’s birthday!!)

Kinlee’s story as told by her Mommy:

This is our miracle baby Kinlee Marie. She was born after a perfect pregnancy and perfect delivery. She came out pink and gorgeous.

At about 14 hours post-delivery the nurses noticed her color wasn't the greatest and she seemed to be struggling to breathe. After the doctor came in and they had called Springfield St. John's originally thinking it may be a lung issue..they decided they needed to call St. Louis Children's Hospital where they had decided she had a heart defect.

She was in multi-organ failure by this point and the transport team from Children's sat us down and were very honest a realistic in what may come in the next few hours! We were terrified. They had diagnosed her with Transposition of the Greater Arteries where her oxygenated blood was not getting to the lungs and the rest of the body like it should. So she was rushed to St. Louis where she had an immediate balloon procedure to reopen the hole in her heart that all babies are born with so the oxygen could start pumping through her body again.

After she recovered from the initial shock of her body shutting down they would perform open heart surgery on her. She impressed all the docs and nurses on her quick turnaround and at 9 days old she had her open heart surgery to repair her defect! She did amazing with her surgery, she had the best doctors and nurses ever!

We were able to leave the hospital when she was just 3 weeks old, when they originally did not see her leaving until at the very least one month old, but she was a fighter She is perfectly wonderful now. Her cardiologist is amazed at how her heart looks like any normal one year old heart!!!

Happy Birthday to Kinlee’s Mommy Nikki!!

♥ Heart Awareness Month ♥ Meet our February 19th Heart Warrior Aubrey. Daughter to Kate Hensley.

Aubrey’s story as told by her Mommy:

On February 19, 2012, we found out we were having a sweet baby girl, but we also found out she had spina bifida. We continued our appointments and found out she also was a cleft lip and palate, heart defect, and her growth wasn't where it should be.

A week after cardiologists said she needed to bake longer, our sweet Aubrey Anne was born. On June 15th at 1043am. She was only 3lbs 3 oz and underwent her first surgery when she was only hours old. Once her myleo (spina bifida) was repaired, she started showing the doctors what she was really made of. She awed the doctors with her discharge in September with no oxygen, no breathing tubes and only a g tube for feeds. She loved being home and snuggling on the couch. We followed up with her 18 specialists and they all seemed positive on her future. A heart surgery in January, her lip repair in February. Everything was planned out.

Aubrey went to see Dr. Gump her neuro surgeon and after a quick shunt scan he decided she needed a VP shunt, saying the fluid on her brain was growing and he wanted a shunt in before her heart repair. On December 27, 2012 Aubrey had her vp shunt procedure and had what they call a "tet spell" in the or. She stopped breathing, her heart rate dipped and scared the doctors to death. Dr. Austin, her heart surgeon came in and put a "A line" in her left arm to help give them access to more IV fluids.

She came back from the OR, and they slowly started weaning her off the vent. Two days later, she coded and was rushed to her open heart surgery two weeks early. She was bronchial spasm ing and the doctors couldn't figure out why. Finally, after two days of trying to get her stable on the ventilator, they decided she needed to be put on ECMO. A life saving machine that takes all the blood out of her body, warms it, adds oxygen and puts it back in. Completely bypassing the lungs, letting them heal. After 5 days of paralytics and rest her lungs were ready to start working again. But that was just the beginning for Aubrey.

On January 9th not even 30 minutes after we left the hospital that night from spending the day there, we received a call that Aubrey had coded. She recovered after 30 seconds, but they had no reason as to why it happened. The next day, she continued to have spells of "near codes" all day until finally one very smart and awesome doctor did a heart echo to find a huge blockage in her right pulmonary artery.

Blood was only going to one lung making the other lung completely useless. After a trip to the cath lab she was stable and on the road to recovery. While during this unplanned hospital stay she did earn the need for a trach, to give her lungs more time to made her so much stronger. Aubrey is a healthy 8 month old, almost 11 pounds, and rotten as ever!

February 17th Heart Angel Hayden

❤Meet our February 17th Heart Angel Hayden Dorsett ❤ Son to Ady and Rob. ** This picture is of “Hayden less than one week before he passed away ~ all smiles”..his Mom wrote.

Beautiful Hayden’s story…

Hayden was born with a rare heart defect called HLHS - Hypoplastic Left Heart Syndrome -which occurs in 1 out of every 10,000 births. Hayden was born and cared for at CHOP (Children’s Hospital of Philadelphia) and was projected to undergo three open-heart surgeries to fix his heart.

Hayden fought hard through his first and second surgeries, but through his surgical process also suffered from a brain injury. Through it all he was the smiliest, happiest baby we have ever known and truly loved life- even with all of his obstacles.

On August 16, 2012 at only 5 months and 4 days old, Hayden unexpectedly lost his life and joined countless other heart babies who have also lost their fight against CHD.

Hayden’s parents have done some remarkable things since he became an angel. They started “Hayden’s Heart Foundation”. Their mission with his foundation is to not only raise CHD awareness and to help keep Hayden's memory alive, but to also help many families with their immense medical bills and travel expenses, etc. You can read about that at: and

He also has another Facebook page that people still follow but also followed during Hayden’s precious life here on earth:

They are also doing a 5k, Zumbathon, and many more things in his memory too! There is even a jewelry line too made in memory of Hayden and you can see that at:

If you want a good cry.. read his Moms blog about his last few days of life… wow.. so sad and sadly, I could relate to so many things she said (Lily also had HLHS, ECMO, etc..she talks about his journey here:

Please say a prayer for this wonderful family…February 12th was his eleven month birthday so his first birthday is just around the corner.. and yesterday, February 16th marked Hayden’s 6 month angelversary from when he became an angel in his Mommy’s arms.. these dates can be so painful!

Saturday, February 16, 2013

Very Vulnerable Post.. Tears..

TEARS of a grieving Mom: Very personal.. Vulnerable picture..

Can any grieving parent relate to this picture? I had a huge meltdown in the shower today (where it happens a lot..). Thoughts and feelings can come hard and strong when you are alone or it's, bed at night, shower, etc..

Sobbing.. Uncontrollable.. Noisy.. Big cry.. "I want my baby back.. It's not fair.. Why aren't you here??"... Physically starts to hurt almost because the cry is so big and deep.. almost throw up because you cry so much... (That gagging/ coughing cry happened a lot after Lily became an angel)..

So I took this picture because I thought I wanted to share a big vulnerable moment.. Then I debated sharing because this is raw & real.. But I decided to share if it helps at least one other person or let's another grieving person know that other people are hurting like them too...

These big.. BIG sad moments can happen out of nowhere.. Don't get me wrong.. I cry daily but this is deep.. deep crying.. ❤❤. To the person that can relate to this.. "You Are Not Alone!!"

P.S. dear family.. I haven't gone off the deep end.. This did not just happen in the last few minutes so you don't have to rush over.. I'm "ok"... It's just a new normal & something I have to go through..

I need to "FEEL" this emotional hurt & pain plus I need to express it.. Letting it out & sharing it doesn't mean that I'm doing worse than a person grieving quietly.. Please don't mistake that..

In fact- they may be doing worse than a grieving parent that is vocal & open about their grief.. Think about that everyone ❤❤.. We will each grieve differently and I just share the hard realities with other people ❤❤

NOT a FUNNY Joke this Time!

"Of course I'm a good mother. They're still alive, aren't they.."

Have you seen this e-card on FB? I saw this recently on Facebook and I couldn't stop thinking about that throughout the day.. then I saw another grieving Mom post about it so I thought I would talk about it.

I wonder if I would have found humor in this e-card before my daughter passed away. I'd like to think that I love a good laugh and have a good sense of humor.. I usually LOVE those e-cards but not this one.

I know it's a joke but sometimes jokes aren't funny.. at least when you're on the other end of the joke.. I know they didn't mean it literal and maybe we're extra sensitive.. we have a good reason to be extra sensitive.. Losing your child is one of the worse things that you can go through... even the best of mothers lose their children and I hope none of you nor the author to this card ever lose a child..

This is HORRIBLE for ANY grieving parent but what about the poor Mom or Dad who lost their child to an accident.. an innocent accident that they think about every minute of every day?!?! I especially hope they never read this ecard...

Also.. In life people joke about "the short bus" or make derogatory comments about people with special needs (I.e. noises, gestures, etc..)- you see.. Those people don't have connections to someone who has special needs or they wouldn't be doing it...

Just like the person who wrote this doesn't have a connection to a parent that has lost a child have seen the pain & grief they go through..whew.. because if they did.. this wouldn't be funny to them either and they wouldn't have written this..

Some may say "Lighten up".. but what I say to that person is.. You've never walked a mile in my shoes or another grieving parents shoes or a family member who has defended a loved one growing up with special needs.. I HAVE and so have many others. I say "be nice to others and treat other people with respect.. and watch what comes out of your mouth..THINK before you speak.."

Be careful what you joke about because you never know who is listening... ❤❤

February 15th - 16th Heart Warriors

❤Meet our February 15th Heart Warrior Aiden❤ Son to Andi White. 

Aiden's story as told by his parents:

Aiden's journey began at our routine 20 week anatomy scan. During our scan they found a very large hole in his heart. Many pictures were taken that day and our tears just rolled. We were so worried about our little boy.

So after discussion of a fetal echo for better pictures, we were transferred to the Maternal Fetal Medicine group at Barnes and Aiden's team of doctors was at Childrens. After a full day of ultrasounds and fetal echoes, Aiden was diagnosed with Double outlet right ventricle with a very large VSD. We had fetal echoes and ultrasounds monthly to check his growth and note any changes to the heart but the best pictures would be after birth.

As we got closer to delivery, we were given tours of the NICU, CICU, and the OR (where I would be delivering) to try to prepare us for the big day. The staff, doctors, and nurses were all amazing and encouraging. A date was set at 39 weeks for induction to bring Aiden into this world in a very controlled environment. 30 hours later with help from an amazing nurse, on June 8th, at 3:12, my beautiful baby boy made his appearance 8 lbs 2oz and 20.5 inches long and stable on room air.

I was able to hold him for a couple minutes before the transport team took him to Childrens. Since he was in stable condition he was in the NICU for days until a bed opened in the CICU.

At a week old, Aiden had his first open heart surgery. He had a pulmonary artery band placed to decrease the pressure to the lungs and increase outflow to the rest of the body. The goal was to give him time to grow to see if we would be facing one or two more procedures.

Aiden recovered very quickly after surgery but struggled to take his bottles. He would breath heavy making it difficult to eat and swallow. Poor little guy would just arch because of the uncomfortable feeling in his chest while eating. Aiden was sent home with an NG tube. On the way home from his cardio visit a week later, he pulled the tube out himself. After discussing with his doctors, we gave it a try again without the tube.

Eating was very difficult still but we found if we relaxed him before eating, his breathing would steady and he was able to take the volume he needed to grow so the "bouncing" began. 8-10 times day, we would relax him by singing and swaying or we would dance to music (Coldplay and Wilco are his favorites) to relax before eating.

He was steadily growing on his curve and that's what we wanted. With regular visits, we monitored his growth and Oxygen levels. We knew surgery was nearing so Dr. Murphy decided it was time for a heart cath for better pictures of his heart and pressures of his lungs to decide on his surgical game plan. This was done on May 4th, and trying to keep Aiden sedated to keep his leg still was nearly impossible. He is pretty much on the go non stop. Aiden did amazing and after he was discussed among his doctors, they decided they wanted more pictures. A 3D echo and cardiac MRI was performed June 10th. He did great and his strength amazes me more every day.

After reviewing these pics, they decided the best approach for Aiden is two more procedures call the Glenn Bi-directional Shunt and the Fontan rather than the two-ventricle repair due to the location of the vessels to his large hole. It is too risky to do the two ventricle repair because it could interfere with the electrical component of his heart.

Aiden had his Glenn on July 29th, 2011. We are getting ready for his third operation, this Spring or Summer. His Heart Cath and Cardiac MRI will be scheduled sometime in May. We will then discuss the Fontan or Two-Ventricle repair once again.

We wait for this date to approach not taking a day for-granted and enjoying every moment with Aiden until we have to hand him over and trust in God's Plan.

He truly is a joy. He is very happy and energetic and always has a smile for anyone he meets!

❤Meet our February 16th Heart Warrior Xavier ❤ Son to Jackie & Nate Ross.

Xavier's story as told by his Mommy Jackie:

I am very blessed to be mommy to Xavier and wife to Nate. My husband and I were married in August 2009 and almost right away talked about starting a family. We were over the moon when I had a positive pregnancy test in September, 2010. I automatically went into super protective mode. Using pregnancy safe soap, shampoo, lotion, stopped dying my hair and getting my nails done. I avoiding the food my doctor told me to. I ate right and walked for exercise. I just could not wait to be a mommy.

Time went by fast and before we knew it we were headed to the doctor to find out the sex of the baby. It was Martin Luther King Jr. Day. I remember because I had the day off from work. I remember walking into the doctors office and having a very uneasy feeling. I decided that it was because it normally so busy in there and this time we were the only people there.

We didn't wait long, when the tech came to take us to the ultrasound room. She got right to work, pointing out and labels all the different, important parts of our baby. The atmosphere in the room was light..we were chatting, laughing. She asked if we wanted to know the sex...I let out a loud giggle...and my husband answered "yes". She asked if we had guesses..and I told her I had dreamed that we were having a girl. I even had a conversation with my daughter in my dream..iso I was sure it was a girl. She said can't always trust your's a boy...I was sure my heart would burst..a son. I had a son. A mamas boy to spoil.

I was overwhelmed with the love I felt in that moment. The tech continued the scan.. She said their is his heart. He was face down, so She was having a hard time getting a clear picture. She took pictures of his heart for what felt like forever. For just a moment, I had a feeling like something was wrong, but it was a fleeting moment. She told me to clean up and get dressed. Nate asked if everything looked ok. All she would say was that we would go over everything with the doctor.

She gave us some pictures and we went back out to wait. It was not long till the doctor came to get us. I knew, just by looking at her face that something wasn't right. She explained that our boy was face down, making it hard to see his heart. She was 90% sure his heart was fine, but wanted a 4D scan to be sure. I just stared crying. I had no control over my emotions. Just the idea that something was wrong was too much for me to handle. Little did I know, I would need to grow a thick skin and fast.

Two days later we went to the high risk doctor for our 4D scan. I don't have words to describe the wait to see the doctor. It was an out of body experience. I relied on my faith that day...spending every moment in silent prayer. I am sure my lips were moving, cause the lady across from me kept giving my funny looks. Soon the tech came to get us. The scan was again as light hearted as the tech could make it.

However,things did not go as planned. The doctor came in, looked us right in the eye and said " your baby has a very severe heart defect. We are sending you to a pediatric cardiologist, but I am not sure they cant do anything. Sign this paper, you need an amnio."

Just like that, all in one insensitive, cold moment my world got very small. I don't have much memory of the amnio, except for the doctor saying that if his DNA was not normal things would be worse. After the amnio, they lead us to a private room, where we cried. There was nothing else to do. I remember Nate calling my mom, I just could not find the words. A sweet nurse came in with an appointment card for the cardiologist. He was willing to see us later that day. We left the office with instructions to relax and take it easy..YEAH RIGHT.

I spent the time between appointments begging God for a reason, a glimpse into how his all would end. Begging for a strength that I was not sure i could never possess.

I fell asleep praying..I prayed so much, although I wasn't even sure what I was asking God for. My husband was such a rock, being strong and talking me off the ledge. I needed something to keep me going..anything. We walked into the cardiologist office and they were ready and waiting. The assistant told me I could fill out the paper work just go back. The doctor sat us down and said.." I want to do my own scan, but if this is can be treated and your son can live a happy, normal life."

And in that moment, there is was..what I had been praying for. There was HOPE. The scan at the cardiologist confirmed that our son had Hypoplastic Left Heart Syndrome. Basically, the left side of his heart did not develop properly and was not going to be able to be to do its job. He would need a series of open heart surgeries to reconstruct the anatomy of his heart so that his right side could do the job of both ventricles.

He talked in words I never heard of, words that I now utter in my sleep. We left the doctor with an appointment at Morgan Stanley Children's Hospital in NYC and primary results that the amnio came back normal.

We went to Morgan Stanley for two months. We saw surgeons, doctors, genetic councilors...we also spent those months doing research. Our research kept bring us to CHOP, The Children's Hospital of Philadelphia. My mommy instincts were telling me we should check out CHOP, but we were settled at NYC and it was close. I prayed hourly that God would lead and direct our choices so that we were doing the best for our child. I prayed that God would send us to the right hospital, with the right care team for us.

One day I came home from work and Nate told me that the insurance company had called. Many of the specialist that we needed to see at Morgan Stanley were not in network for our plan, this included the surgeries. I almost went into panic mode, till he said.."we are 100% covered at CHOP. We have an appointment with the fetal heart program next week." I was overcome with the feeling that God has answered my prayers and He was directing us onto the path he intended for us.

From the moment we entered CHOP we felt at home. We felt blessed and honored to be a part of this amazing, ground breaking hospital. If I could give advice to any expectant heart mom it would be to go with your gut. That's what I did and it took us to the place we were meant to be.

We relocated from Northern NJ to Philly on May 19 th, 2011. On Saturday, May 28 th at 8:04 pm Xavier Thomas Ross entered the world,screaming and pink. I had him naturally and he had what they call an eventful was pretty eventful to me! I got to hold him..and after being assessed and getting a perfect apgar score, he came back over to spend some time with us in the birthing room. Way too soon, his nurse came over to take him to the CICU.

We enjoyed 3 amazing days holding, breast feeding, singing to and kissing our boy. At 4 days old he had his first open heart surgery. He did great and came back with his chest closed.

We spent the first two days never leaving his bedside, except to sleep for a few hours in the hospital sleep rooms. Finally, after two days, we went back to the Ronald McDonald House to rest and get more clothes. I went right to sleep, while Nate worked.

At midnight my cell phone a sleepy haze I silenced it and fell back to sleep. Nates phone rang a second later. It was someone from the hospital, telling us we needed to get there, right away. The world literally stopped. Everything seemed to be in slow motion, even though we were moving in a panic. We flew to the hospital, ran to the 6 th floor, around the corner and stopped dead in our tracks.

There is no way to describe the feeling of seeing 30 people, dressed in scrubs, surrounding your newborn. A woman I have never seen before stopped us and asked if we were Xavier's parents...then she said..he is fine!

Dr. Wernovsky (soon to be our cardiologist) came over and explained that when they pulled chest tube it bumped the wires in his heart and caused blood to leak around them. He was basically bleeding internally. His nurse caught it early based on his change of mood and some blood leaking out his chest tube scar. His surgeon (the fabulous Dr. Gaynor ) was called in and within ten minutes Xavier was stable and doing well..ten minutes before, he was in pretty bad condition, however his heart never stopped and his blood pressure stayed normal. I have to be honest, I left the RMH thinking he was dead. This was the scariest moment of my life and of this journey.

The days ahead consisted of the neurologist finding a blood clot on the base of his brain during a study and the discovery of a paralyzed vocal cord. We had to learn to insert an NG tube, how to administer a blood thinner with injections, how to use his feeding pump and how to do infant CPR.

Xavier spent his time being cute and gaining weight and on June 21 st we were discharged and headed home. Interstate was pretty un-eventful for us. Xavier was admitted once and needed a blood transfusion. We were able to take out the NG tube in August. X loved being home and his favorite things to do were get baths and swing in his baby swing.

We headed back to CHOP on October 12 th. X had a pre-op MRI scan of his brain (the clot was gone and his brain looked great) and his heart. The next day he went in for his Glen (the second stage).

He did amazing and was discharged in 8 days. We have been home ever since, with one brief stay for a cardiac cath. He struggles with development, but is progressing at his own pace. He sees a PT, OT, speech therapist, feeding clinic and a developmental teacher. They all just think he needs extra time with new skills. He is silly and funny and super cute. He loves to be outside. He is great at puzzles and building towers with his blocks.

We recently were told that he will have the final stage in his repair in July. At that time he will also have a repair done to his tricuspid valve that is leaking. Xavier is my hero, my best friend and a mighty warrior. He is an answer to my prayers, because to look at him is to look at HOPE. He is perfectly imperfect.

His heart is beautifully, wonderfully made by the hands of God...made broken for reasons that are beyond me..but I know that his life is a testament to the power and mercy of God. Thanks you for reading our story. Please feel free to follow our journey