Searching for Owen

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 goodbye 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.

Through 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 (! 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.

My 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 goodbye 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!

Heart 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!