WHAT TYPE OF HERO ARE YOU!?

Don’t miss this incredible opportunity to save a life in honor of our precious LionHeart!

May 25th from 10am-2pm at Sacred Heart Church/School in Palm Desert!

Appointment scheduling information attached!

If you are unable to attend locally please WEAR RED on May 25th! Tell everyone you know about CHDs and Childhood Cancer! DONATE IN YOUR TOWN AND SEND US PICTURES!

Visit http://www.redcross.org to find a donor location in your area.

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Our Unexpected Blessing

10254008_690050067725862_406937011180057086_nMany of you have been asking about our precious Brody… Yesterday we had an incredible appointment. In fact, it was the best appointment we’ve had since I was 6 weeks pregnant with Owen. It’s been a long road for our family and yesterday was the reason we don’t give up! Our baby boy is HEALTHY! He’s perfect on all charts and our incredible Dr’s smile was solid proof of all of this! We have had so much support from everyone and we want to thank you. It’s been hard for us to celebrate and believe that this boy is going to come into this world healthy and without complications. While we still don’t know for sure, as things can always happen, doubt was the furthest thing from our mind yesterday! We miss Owen will every passing moment and ache that he is not here to celebrate and grow with his brother. We know that our time here is short and the 3 of us, plus Jax, will be living together with Owen in eternity before we know it! For now, we find peace and full hearts that our second son, Brody is healthy and will be in our arms in just 16 weeks!!! Thank you for celebrating these milestones. While to some of you it seems routine and waaaay too long, to this heart family, not having an ultrasound or check up for another 6 weeks is music to our ears!!!

Save the Date

♥♥ SAVE THE DATE ♥♥

Owen’s FIRST birthday is just 45 days away and it’s FINALLY time to tell you all about the celebration!

Join us MAY 25th in Palm Desert and give the GIFT OF LIFE by donating blood in honor of our precious Owen. If you are unable to join us we will have links to donation centers in your area. …

Blood Donation appointment scheduling and more details to follow!

We can’t wait to celebrate our precious son and save lives in his honor!

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A new beginning

When your a parent of a child with a special heart your life is never the same. The things you see fighting by your child’s side change your own heart and change your perspective on every experience going forward. When you’re child’s life is cut short because of CHDs you live in fear for every other child diagnosed with a heart condition and every child that will be born into the heart club that is 1 in 100. We feel so blessed and privileged to have gotten 16 weeks with Owen and have prayed that God would gift us with just 16 weeks and 1 day with his brother. If he chooses more, than we will praise him and thank him for every moment we get.

Jeff and I feel very strongly when it comes to naming our children. Owen’s name meant strong fighter and his middle name is Thomas after his grandfather. Owen’s name could not have been more perfect for him. We took the same care when it came to naming his brother. His baby brother’s name is Brody Aaron. Brody means second son and we feel it honors his brother in so many ways. To the outside world Brody will look like our first born, he will look like our only child. To our family and those that know and love us he is our second son and a perfect little brother to Owen. Aaron means strong mountain and our second son has already become our pillar of strength as we continue to mourn his big brother.

Today we visited CHLA… It wasn’t a visit for an open heart surgery or procedure, or dropping off a donation in honor of Owen. It wasn’t to visit with another heart family or to celebrate the great works of our heart family with 2600 in book donations. Today was the day we learned what was in store for our future with our second son. We have been very prayerful about this appointment and were prepared with whatever we would be told. We have had many appointments with our Perinatologist and he has no reason to believe that Brody is not developing “normally”. However, when you’re a heart parent you want concrete and in the medical world that is something you’ll never get.

We stepped into the same room we visited several times when I was pregnant with Owen and again met with one of Owen’s incredible cardiologist teams to look at Brody’s heart. Our appointment was much different then the one we walked into about 18 months ago. The language was different. The emotion was different. The conversation was different. We spoke about God, heaven and how Owen is free from CHDs and how incredible it will be when we are living in eternity together. We spoke about how lucky Owen is to have made it there before us and not struggling to survive in a body that was failing him. We spoke about hope and faith and most of all about why God chose us to be Owen’s parents. Then we looked at Brody’s heart and gave ours over to God.

The appointment went much like this:

Dr: Well, it’s not Truncus (one of the conditions Owen had)
Us: exhale
Dr: I see 4 chambers so its not half a heart.
Us: exhale
Dr: Nice strong heart beat with no arrythmias, strong aortic valve and hear that click of the mitral valve. Oh and there are some beautiful veins.
Us: exhale
Dr: hmmmm….
Us: holding breath
Dr: Well, Jeff and Alissa I keep looking and I just can’t find anything. Brody has a healthy heart and I really so no reason to have to come back!
Us: EXHALE!!!!!!

It’s surreal to be told that your son is heart healthy and that now as a second time parent you will get the experience of being first time parents at home without surgeries, scars, therapy, procedures, medicine, exclusively pumping, lines and feeding tubes, nurse checks 24/7, confinements of a hospital, visiting hours, and many more restrictions. Sure some of those things may play out at home but not with the same intensity. There will be a different kind of fear and a deeper appreciation. There will be a love that we can’t put to words and a mixture of joy and sadness that will come with each moment spent with Brody. There will be a balance of new “normal” holding our healthy son and missing our son with the special heart. We will find a way to mix all of these feelings and ride the roller coaster as it comes. All while hoping not to screw up Brody too bad. We may have to put away an equal amount of money in a therapist account as we do in his college fund! Because although we heard today that he is heart healthy this heart mama may make him see a cardiologist every year till he’s 30 just for confirmation.

Praising the news we heard today and trying our best to love in the joy for the moment.

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6 Months Later

20140304-171155.jpgSix months ago today, I woke up after a few hours of sleep on a tiny make shift bed in the arms of my husband after endless hours of rocking our restless son. Room 34 had a stillness and a fear wash over it. I remember waking up in a panic, thinking I had slept too long. I pulled my hair back in a ponytail and assembled some type of outfit. I raced down to the first floor cafeteria in my filthy slippers and grabbed a cup of coffee. I needed something to knock me out of the half asleep half awake state I was in. I needed to focus. I remember waving to the same friendly security guard and faking a smile as I raced back up to the second floor to take on the day. Jeff and I saw it the night before. Owen told us he wanted to go. He told us he was tired. It was time for us to tell him it was ok. We were not ready but this was not about us. It was time for us to step up and BE parents. To do what parents are asked to do. ALWAYS put your children first. This morning there wouldn’t be rounds. There wouldn’t be checks by the nurses. There would be a tremendous change in our routine. A meeting with a small palliative care team and Owen’s main doctor in a windowless conference room. Words would be exchanged and questions would be asked that no parent should have to consider… Decisions on DNR and who would be saying goodbye. HUGE life altering decisions made by weary broken parents that could never be reversed. Everything was decided and we went back to room 34 to hold on to our boy and savor every last breath, every last moment, every smell, every sound, every millimeter of his tiny perfect body. We were saying goodbye to our greatest gift. We were being asked to do the impossible.

Six months later, I still wake up with the same panic, the same desperation to have one more breath. The same aching and longing to have one more second, one more minute. The same desperation in my heart to feel his embrace to hear the sweet coo of his voice, to touch his skin. Six months later our hearts still break every time our feet hit the floor in the morning and our heads hit the pillow at night with the realization that our son is living in Heaven and not in our arms. Six months later feels like a lifetime and every 24 hours feels further away from him.

The biggest thing that was taken from us 6 months ago was time. Time to make memories, to watch our son grow, to gain a bigger understanding and develop ourselves as parents, as his parents. We packed a lifetime into 16 weeks and it wasn’t enough time. Time goes on and no matter how hard we try it is the one thing we cannot control. One of the biggest things we learned 6 months ago is, while we can’t control time we can control what we do with it.

Jeff and I learned more and changed more in 16 weeks than most are faced with in a lifetime. The time we spend with each other, the time we spend remembering Owen, the time we spend loving and dreaming of our future with his baby brother, the time we spend every moment of every day is now treasured and decided with so much more care. We value each minute and value each breath because we watched our son take his last. We know how quickly it can end and how permanent it is when a moment has passed. Each day I wake up thinking what if today is the day I take my last breath and I am told it is time to join Owen in Heaven? The days that I get lost in routine and lost in life’s drama are the hardest. They are the days that I feel furthest from Owen. For that reason, we desperately try each day to focus on what a blessing our time is, a blessing each encounter is, and a blessing each breath is that we take while we are here.

Today I encourage you all to stop and smell the roses, ask a stranger how their day is and take the time to listen to the answer, compliment someone and mean it, help a coworker, spend a little extra time with your children during your nighttime routine, talk at the dinner table and don’t rush through it, ask your spouse how you can help to make their day better and follow through with it, do something valuable with your time and know you are making a difference with someone else’s.

Thank you for remembering our son. Thank you for continuing to spread his joy. Thank you for helping us carry on his legacy here on earth so that his legacy did not stop at his 16 weeks but has continued on during the 6 months that he has been gone from it. Thank you for never letting his mighty roar fade!

Swings Are Here

20140228-195922.jpgThey’re here!!!! We’re so excited to share that the swings have arrived at CHLA! They are going to give our CHD warriors some freedom and give them a new perspective of the world around them! It will also allow the parents to feel like their child is getting the same experiences a heart healthy kiddo growing at home would get! Thank you for allowing us to treat our CHD Super Hero’s like kids and NOT their conditions! These swings stand for so much more and YOU made it possible!!!

Kids, together we’re moving mountains!!!!

Much Love,

Jeff and Alissa
Owen’s Daddy and Mommy

Searching for Owen

20130815-135303.jpg On Monday February 17, I did what I thought would be one of the hardest things to do to date. I walked back through the doors of CHLA and onto the 2nd floor alone. Jeff had to work and I was determined not to allow any more time to pass by before I visited. To say I was a ball of emotions would be an understatement. I had envisioned this day with severe anxiety for quite some time and now the day was here. I wanted to go back and feel Owen and desperately wanted to see the “family” we had spent every day of his life with. Despite every hard and challenging day and the fact that we left our sons cold body behind those doors, he LIVED there with every ounce of his being. We became parents there, we celebrated firsts, we made memories and we be became a family within those walls. I NEEDED to walk back through them! I NEEDED Owen.

The CHLA Foundation was incredibly accommodating for my visit and had a full schedule planned for me. First, I visited with one of Owen’s favorite fellows (Fact is… I am pretty sure EVERYONE was Owen’s favorite). Her smile and big heart lit up Owen’s room every time she walked in and it did once again when I saw her. I vowed not to cry and I did good… For a little bit anyway. We discussed missing Owen, the excitement of his new brother, and just life. It was like catching up with an old friend and no time had passed. Then it was time to say good bye but it felt more like “see ya later”. This was going to be easy. I could do this! I then met with two of my favorite people on Owen’s journey. They guarded our hearts and held us close through every high and low, Owen’s social worker and nutritionist. Through every shift change, every weekly attendee change, room change, floor change, specialty change, THEY remained the same. How important that constant was in our life. It was so natural to see them both and so exciting to hear about some new changes in the hospital that were being implemented because of Owen! (Still no tears) I wished I could have stayed with them for hours. But, it was time to say “see ya later” and take on the biggest challenge of my day.

Off to the second floor, the Heart Unit. It felt so surreal coming off the elevator. The smells were the same and everything was so natural. We walked through the double doors on to the unit and a familiarity and wave of emotion came over me. Owen was EVERYWHERE! In every monitor beeping, every rush of a nurse, every alarm, every weary look on a parents face, Owen was there! I savored every breath and every moment I could take him in. I began getting hugs from everywhere. Every beautiful smiling face, every angel disguised as a nurse or RT was hugging me and incredibly excited to congratulate us on Owen’s baby brother. Of course they immediately asked when his anatomy scan and first echo would be and how his heart looked! I assured them that as of now Owen’s baby brother will be a visitor only at CHLA… No admits!!! They were always taking such good care of us… Treating our entire family not just their patient. Out of the corner of my eye, I saw one of the Attendings. She was so much more than a doctor to us. She sang Happy Birthday to Owen with us during rounds on his 1 month birthday, she cheered with excitement as he got extubated for the first time and she sobbed with us as we told her Owen had hours to live. The second she embraced me the tears started flowing. I could not hold them in anymore! There was no stopping them now. They were tears of… of… to actually put what I felt into words would be impossible.

plaqueThrough the tears I told them all about our incredible heart family and how they have made the LionHeart Owen Foundation a reality. I told them about the Heart Week surprise that all of YOU were able to make possible. The LionHeart Owen Foundation made its first donation to the CHLA Heart Unit and I have been dying to share it with all of you. We gifted the floor with six (6) MamaRoo Swings (http://www.4moms.com/mamaroo)! The swings will offer a change of scenery for the babies on the CTICU and CVAcute. It was so incredibly important for us to treat Owen like a baby and give him the “normal” baby experiences, despite lines, tubes, blood pressure cuffs, and many other restrictions. These swings are fully accessible and will allow easy access in an emergency and when in motion will not have any issues of having lines get tangled in the swing! We will have a plaque on each one that will say “Kid you’ll move mountains!” (see picture to left). Unfortunately, the swings were delayed on delivery and did not arrive for my visit but I will post pictures as soon as they arrive! It was tough leaving the CTICU but I knew there were more people to visit and our time was limited.

I went on to visit with the cardiothoracic surgical team and thanked them for the endless hours they spent saving our son’s life. I thanked them for the tireless hours they are working to create innovative ways to give our heart kiddos one extra day! I thanked them for making 16 weeks a reality for our family. Most of all we thanked him for never giving up on our boy and using every resource they had to keep him here as long as they could. I am looking forward to meeting with them again and working with other foundations to see how we can continue gaining funds to enhance research and meeting all of their needs to help our tiny warriors.

libraryMy last stop was with the ladies of the Literally Healing Library! I could not wait to see them. The first few hours were so emotional BUT I had more to give! I fell into their arms and savored every moment. They were so thankful for the tremendous donations they received from the LionHeart Owen Holiday Book Drive. They showed me their HUGE storage room and the section dedicated to all of your books! The library gifts over 30,000 books a year and we provided 10% of them! I was so proud of us, heart family! We spent some time in their offices and they told me about programs that are being inspired by our little man. He was definitely with us in that Library! Then they gave me a gift and the tears could not be held back. They created a gorgeous book with all of the pictures of Owen that we used in the book drive and every one of your kind messages that were received with your book donations. My husband and I will savor that book and the words on those pages for a lifetime! I cannot wait till September 2014 to launch the SECOND Annual LionHeart Holiday Book Drive!

It was finally time to say good bye and my heart was heavy, tired, but oh so full! I began the visit walking through the doors aching for Owen and God gave me billboards of him on every inch of CHLA’s walls. I may not have been able to hold him, smell him, or touch his sweet face, but it was so clear that Owen touched every heart in that hospital and continues to make a difference. I felt him in every breath I took, saw him in every sweet smile and felt him in every long embrace. I will always be searching for Owen as long as I am hear on earth and I am so blessed and thankful for the ways God shows me he is here. I am so proud to call myself his Mom. My small boy lived a life so full and inspired so many people in his 16 weeks. He is my hero!

20130904-230615.jpgHeart Family, THANK YOU! YOU were with me on my visit too! YOU put those books on those shelves! YOU put imagination, hopes and dreams in the hands of medically challenged children! YOU made the swings a possibility! YOU made this dream a reality! YOU never gave up! THANK YOU for giving these CHD warriors JOY, FREEDOM and HOPE!

We can’t wait to reveal our plans for Owen’s FIRST birthday! We want EVERYONE included so stay tuned!!! You are gonna want to show up for this one!

Our Family is Growing

We received a VERY special Valentine’s Day Gift… Our family of 4 will soon be a family of 5… As we welcome Owen and Jaxon’s Baby BROTHER in August 2014!!!!

Happy Valentine’s Day to all of you! Hope your Day is filled with love and an abundance of blessings!

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Just a few more days!

20131228-182715.jpgI was just telling Owen how incredible our heart family is and even though he lives in heaven he still has so many people who think of him everyday! I told him that his heart family loves him and all the other kiddos that are still here fighting for their lives so much they have purchased 2,000 books in his name!!!! Can you believe it? TWO THOUSAND?!?!?! We have a few more days to reach our goal of 5,000. Think we can do it?!?! Owen does!

Click here to purchase a book for the kiddos at CHLA! Make a difference and spread love and joy this holiday season. Every book counts!

http://www.amazon.com/registry/baby/OLSS7PL28PJ6

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We are proud of our heart family

20131220-075444.jpgWe had so much fun last night shopping for the LionHeart Owen holiday book drive. Literally Healing Library contacted us yesterday and told us it was time to cash in on all the gift cards they received through the drive and make our numbers grow! I’m a strong believer in retail therapy so I jumped at the opportunity. We had a great time and put some serious thought into putting all those generous gift cards to use. We had $920 to spend and purchased 101 new books for the kiddos at CHLA!!! Thank you for all of your generous book donations and gift cards. We have raised 1,710 books. If each books averages $6.00 we have raised $10,260 for the library!!!!! Wow! That is incredible! I am PROUD of our heart family and I KNOW Owen is proud of all of us too! He’s doing the happy dance in heaven as I type this!

There is still time to purchase books for the kids. Because of the energy, incredible response and excitement we have received we will be extending the book drive through New Years Eve! Please share the link, purchase a book, and always pray for the super hero’s at CHLA fighting their battles every day!!!

Click here to spread joy this holiday season

http://www.amazon.com/registry/baby/OLSS7PL28PJ6

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