When I was 22 weeks pregnant, we had the ultrasound that revealed our baby boy would be born with a broken heart. For the next 18 weeks, I spent countless hours researching, going to twice weekly doctors appointments and feared for our unborn baby's life. He was born so perfect and breezed through that first open heart surgery. I wished all our worries were over.I always knew the second open heart surgery would sneak up on us. I didn't mind the feeding tubes, the specialized formula, the many medicines, Drs appointment or daily weight check. I feared sending my child back to the OR for another, risky, open heart surgery. I was thankful when it sneaked up on us faster than anyone expected, due to Owen's increased heart failure, at 3 months. Now that it was out of the way, we only had one more surgery to go. Until then, we would have a couple of years of "normal".
That was not God's plan. During Owen's fourth cardiac catherization, in October 2008, we got the news that the last surgery would never happen. The last surgery that would allow Owen to live a "normal" life. Instead, Owen would need a heart transplant. All that I had known, researched, and planned for had just changed.
Ever since that day, I have been researching, visiting transplant centers, seeking advice from others... just like I did when I was pregnant.
When we finally made it to Stanford this last week. I feel like my searching is over. I have finally found what I have been seeking. A transplant and cardiology team that will do their best to give Owen the best life possible. I know it's out of my hands for now. I trust their decisions and I will continue to being Owen's number one advocate. I also know.... It's in God's hands.
Something else that I have been able to do this last week since returning home.... breathe. For the first time since learning of Owen's diagnosis, I am able to relax and enjoy a "normal" life. There is no surgery coming up at 3 years old, there is no transplant happening in the next couple months, there is nothing but time. Time to treat Owen's sensitized antibodies, increase his medications, visit Drs. 3 times a week, continue his numerous therapies. Time to enjoy life!!
The NG tube isn't going anywhere, the feeding issues are still present. We will continue to see our feeding therapist and make mealtime a fun experience. I will continue to blend his formula in the blender with rice cereal to make it higher in calories so that he will grow strong. I don't stress about it anymore, he eats when he feels like it and that's good enough for me.
We will continue working to build his strength so that he can feel the independence of crawling and walking. We will continue to visit Cardiology every three weeks and increase his medications. We pray that this will works and his heart function will stay steady. It's unlikely that he will lose the oxygen tubes anytime soon. I have accepted the permanency of the dreaded oxygen tanks that adorn our car and living room.
This is our "normal". This is our life. We are at peace with it and we will enjoy every second of it. Owen is still with us. We get to wake up next to this amazing boy every morning. We get to enjoy his laught. We are grateful each day that we are together.
17 comments:
Sweet Owen has touched so many lives. HE has the ultimate power to heal. HE will show HIS presence on your life. HE has a plan for Mr. Owen! Prayers are coming your way...enjoy a feeling of "normal" for a while :)
Have a great weekend!
~Elyse
I have followed your blog for a while now and I think that I have left some comments but they are all the same. I just cannot get over how adorable Owen is and your whole family. If I need a smile for the day I can always log onto your blog and get a giggle out of me and my sons. I have no clue what you are going through but you and all the heart moms amaze me so much. The strength, courage, protection, and love that you show is truly a good definition of a real mom. You and your story(life) inspire me to be a better mom and don't take anything for granted. Thanks for sharing your life with us you will never know what it means to all of us.
P.S. I think Kamryn is the best big sister in the whole.
Owen is such an adorable little guy, and I'm sorry that he got such a rough start in life. I know how hard it can be to take care of a little one with such special needs medically. When I was in highschool I became 'part of a family' that had a little guy of their own with his own set of special needs. I helped take care of him for several years, learning how to read monitors, change oxygen tanks, put down an NG tube and check it's placement, administer the many medications he was on, do his physical, speech, and oral therapies. I watched him go in and out of the hospital, watched, prayed, and cried all those times he nearly left us and this world behind him. But I also watched as his medical needs slowly became less, as his lungs grew stronger, and the oxygen eventually became a memory (he was about 5 then) and we finally got him eating enough on his own to be rid of the NG (shortly after his 5th birthday). I don't see the family much anymore, but I know he's doing well...still working on learning to walk, to talk, to live as normal a life as he can now that his biggest hurdle is his down syndrome.
I will hope, and pray, that your little one grows strong, and is given everything he needs to overcome his medical needs, the hurdles in his young life, to succeed in beating them as that little boy did. And I will hope and pray that he also does not simply overcome those hurdles he has now, just for new ones to pop up on him while he is so young.
Your family has the love, the support in one another, and the drive to make life be as happy, and as worth living as you possibly can to pull through what you face, and bring your children well and whole along with you. So I pray that God will but give you the chance to do so.
That is so nice you finally feel comfortable for a while. I know I just let that comfortable feeling of "normal" sneak in also. I am so glad you guys are home and get to enjoy the sun and HOT weather. You guys are awesome and doing a fantastic job of enjoying every second together. I find my self holding Kylie more often just because I can. Most heart parents don't have that joy and my heart breaks for them. Owen is such a joy to watch growing up. He is so cute and full of life, Thank you so much for sharing your story with us.
Owen is so incredible! Sometimes I visit your blog just to get another glimpse of his precious, sweet smile :) It's truly wonderful to read your blogs and to know you are now entering this 'normal' place of your lives~God is so GREAT! You guys are so strong and the beauty of your love and kindness radiates~it's all in Owen's perfect smile! (((HUGS))) and continued prayers...
Dear Simmons Family,
I have to tell you that Owen is such a little cutie pie. He is always smiling even if he does not feel good. He is such a cute little guy. I love his big smile he always has on every picture I have seen of him on this blog.
I love to go to this blog every night just to see owens happy little face. his little smiling face brightens my day, wither I am having a good day or a bad day.
your family is always in my thoughts and prayers.
Kandice
Way to be - way to have a great attitude! We could all strive to be more like you. Owen's sweet face is always lit up. What a cuite! Thanks for sharring your incredible story, you and your cute family are truly amazing!!!
You remind me to do the same thing... breathe and enjoy life! What an amazing attitude you have... thank you for sharing your story with all of us, so that through Owen's journey, we too, gain strength and inspiration. He is one amazing kid and he is very lucky to have such a special mommy!
Amen! All that matters is that he's in your arms and whatever it takes is completely worth it. I hope you have the best summer ever!!!! Hugs!
It sounds like you are handling things really well. I couldn't agree with you more.....just enjoy him. He is so darling and seems like he doesn't have a care in the world. That cute little smile just melts me. Everything will work out as it should and in the meantime, enjoy every minute with your cute little guy!!
Owen is an absolute cutie! I just found your blog through Mckmama's and read through Owen's journey. What an amazing little man.
Owen is added to my prayer list and I am following your blog.
God bless.
Hi, I've been praying for your family and especially Mr. Owen for awhile now. I found you through your blog button on another blog. I had no idea about all that he (and you) have already been through. I am really touched by your courageous and positive attitude, and by your willingness to give it all to the Lord. I feel like I will be a more patient Mommy after reading your story.
Thank you for sharing. I will continue to pray for you all. I'm so glad that you feel some relief right now in the journey and are able to enjoy this gift of time.
You pull off this "normal" so easy and are a natural at being the ultimate heart mom. What a blessing that you got that opinion from Stanford...and I'm so happy for you that a big load has been lifted and you can get on with living life :) Owen is such a sweet little guy and has had such a wonderful 16 months because of the environment and care you've given him. He has thrived despite of his failing heart. He's always in my prayers and I so look forward to seeing his cutie pie face on your posts! Hugs to you guys :)
Sometimes we take life for granted, one day follows the next with the good and the bad like the waves of the sea, we give thanks daily to a Father in heaven who has given us life, families, and open opportunities for now and for the eternities. We used to have joy regularly...then Kamryn, Giselle, and Lucas came along...things got even better, we have a little girl baby due in 3 weeks another bundle of love but a little guy named Owen Andrew came into our life with a backpack full of "heart issues" but...most amazingly,,,he came with A WHIRLWIND OF LOVE. You are right Andrea...This is our family's normal and they are all worth every minute, every smile, every tear, every new word, every milestone. We love you, g-ma-vicki
A beautiful post, by a beautiful woman, about a beautiful boy. Thank you so much for sharing.
Cxx
Amazing how true it is that all these tubes, feeds, meds, etc can BECOME a new normal. If you had told me three years ago that cathing, tube feeds, kidney issues, intestinal shut downs, weekly dr visits, regularly scheduled dr visits etc would be NORMAL I would have looked petrified... but now...
amazing how well you adjust. I am SO glad to hear the relief in your voice. Glad that you have time and Owen is doing so well.
We resolved a while ago that tube feeds were not that bad and that if that was the worst thing Ky had to deal with in life then... so be it!
hugs and prayers,
Amber Schmidt
Those are beautiful thoughts and feelings. Thank you for sharing them.
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