Today Ryan turns one-year old. It is utterly surreal to write that statement knowing that a year ago we were unsure whether our son would make it past birth. His little life has touched so many and has been prayed over so greatly these last twelve months. We are humbled. This has been the hardest, craziest, and most intense year of our lives. But it has been worth it all.
February 19, 2009: Ryan is born. It takes 15 minutes to stabilize him. He weighs 8 lbs. 6 oz. and measures 20 inches long.
This is one of my favorite pictures of Ryan. It is about an hour after his birth and the first time I saw him. I remember being ecstatic to see him and thinking how much he looked like Ainsley and gushing to Henry that our son had hair. Seriously? I’d just delivered a baby with his heart outside his chest and all I could think about was his wavy hair! (Disclaimer: I was heavily drugged.)
Month One: At two weeks old, Ryan undergoes a heart catheterization to see why his oxygen saturations are trending down. It is determined he needs a central shunt to increase blood flow to his pulmonary arteries. He undergoes surgery within the week. He continues to struggle breathing on his own and remains on a ventilator for support. We learn our way around the medical world becoming familiar with heart function and treatments
Month Two: Ryan desats to critical levels and receives an emergency heart catheterization to balloon open his cor triatriatum membrane. He is then finally able to fly on his own after being on a ventilator for 5 1/2 weeks. We are pleasantly surprised since we were unsure his body would be capable of creating the negative pressure necessary to sustain efficient breathing without surgical intervention.
Month Three: The boy who was expected to spend 12 straight months hospitalized comes home on April 28, 2009, at 9 weeks old. We are excited and terrified at the same time! He comes home on a feeding tube and three medications. After a period of adjustment, we settle into a routine and everyone is happy to be under one roof.
Month Four: Except for a three day hospital stay for dehydration, Ryan lives at home the entire month!! He continues loving the attention he gets from his sisters and hanging out with his family.
Month Five: Ryan undergoes surgery to place tissue expander bags in his chest area to grow skin for his upcoming Glenn procedure. He stays ‘in house’ for a month afterward recovering from having the extra weight of the expanders in his chest.
Month Six: Ryan is home for a brief two weeks between July 16 and July 28. He is readmitted for low oxygen saturations following a tissue expander injection. He was home on 1.5 liters of oxygen, a feeding tube, and two medications.
In early August, he undergoes a pre-op catheterization (for his Glenn)
Month Seven: Ryan undergoes the Glenn Procedure to rewire his superior vena cavas to his pulmonary arteries bypassing the non-functioning right ventricle. He also gets a total body makeover four days later when plastics and general surgery zip him up by closing in his omphalocele and heart.
Month Eight: Ryan continues healing from his Glenn and chest wall closure. Praise God Ryan does not develop any infections or complications from either surgery.
Month Nine: Ryan continues to struggle coming off high flow oxygen and has random episodes of desatting. He undergoes another heart catheterization in which Dr. K coils off a good-sized collateral. Ryan’s sats come back up, but he is still unable to come off the high flow O2.
In the meantime we ramp up PT and OT to help him get stronger from previous surgeries.
Month Ten: Ryan undergoes surgery for plication of his diaphragm. After recovering, he is finally able to come down off of high-flow oxgyen and is noticeably breathing easier. He is transferred from the CICU to the HKU to get ready to transition home.
Month Eleven: Ryan gets to come home! After spending a month in the HKU, Ryan is well enough to live with us. He comes home on 2 liters of oxygen per minute, a feeding tube and 13 medications. He leaves the hospital at 27 1/2 inches and 19 lbs. 6 oz.
Month Twelve: Ryan flourishes at home. He starts reaching for things with two hands, giving high-five, waving hi on command, rolling to his side, and being strong enough to support himself in the bumbo and exersaucer.
(c) 2016 Leighann Marquiss
Comments (66)
What an amazing miraculous year! I am so thankful I’ve been able to witness Ryan’s miracle, albeit from afar! He’s come a LONG way from the hopelessly sick 12 week fetus he once was! God is good… ALL THE TIME!!!
Happy Birthday, Ryan! What an amazing baby boy you are. God has done amazing things in and through your life and will continue to do so. I am in continual awe of all that you have overcome. Keep staying strong, little man! We all love you so much.
I woke up this morning thinking…wow…I know it’s someone’s birthday. After laying in bed for several moments…it hit me! Baby Ryan’s birthday! His very first birthday! HE MADE IT! And he has touched my life in so many ways.
Happy Birthday little man!
*fka anonymous
I have tears as I read this Ryan is truly a miracle. It has been a roller coaster ride for you guys but definitely worth it all to have him home! I loved reading & looking at all the different pictures of each month! God is so so so good & will continue to do great things for him! 🙂 Happy 1st Birthday Ryan!!!!! <3 <3
Happy Birthday, Ryan! So happy that he is doing well and thriving at home. Thanks for the year-in- review…it’s always amazing to see where he was and how far he has come.
It’s also my oldest daughter’s 14th Birthday today. I guess special people are born on this day!! =)
Happy Birthday Ryan!
Happy Birthday Ryan! We wish you a wonderful day and year ahead!
Love,
Hans, Evelien
Laurens, Elizabeth and Maurits
Wow, a whole year! That is truly amazing.
Ryan’s story is very inspiring and its been wonderful to follow.
Thank you for showing your faith through all of Ryan’s struggles. You have an awesome family.
Go Ryan!
happy birthday
HAPPY BIRTHDAY RYAN!!! What a miracle baby you are!! A true inspiration to all of us!!
Love, Hugs & Continued Prayers
Happy Birthday, Ryan! What an amazing little boy u are! So many people love u and pray for u every day! Hope u and your family have a wonderful celebration today!! 🙂
Love you!
Your cousin, Richelle
Rejoicing with you on this day of celebration! What a testimony to God’s miracles your beautiful Ryan is. Praying that Ryan’s second year is UNEVENTFUL and HOME!!!
Happy birthday Miracle boy Ryan!!!
Such an amazing miracle story! I love reading your “overview” and all the pictures. I do not often comment but read your blog every day…especially to see how that little guy is thriving – what a blessing he is part of such a special family!! I am thrilled that I was ever able to meet him in the hospital and for the times I spent my volunteer hour with Ryan (ok..so I am supposed to share my time – but he stole my heart!)
I pray all of you have a beautiful day celebrating Ryan!! What a thrill!
Wow, I can’t believe it’s been a year! I hope Ryan has a great first birthday.
It’s been such a blessing to follow your story these past months and ‘get to know you’ through your blog.
Prayers for you all as you face the challenges of the days to come. I can’t wait to see what else God has in store! 🙂
Tyra
Happy Birthday Ryan.
Words just don’t seem adequate for this – Happy Birthday will never be a trite phrase for you and your family ever again. How awesome is our God – and thank you for sharing your journey; it is inspiring and humbling and a privilege to be able to pray for all of you.
I found your blog from a friend’s friend’s blog and have been following ever since.
Reading the story of Ryan’s first year and how much he has been through brought tears to my eyes. He is so strong, and so are you.
Thanks for sharing.
Happy 1st Birthday Ryan!
Happy Birthday Sweet Ryan! You have had an amazing journey so far, and you will continue to have an amazing journey and a wonderful life. You are blessed with a super loving mommy and daddy and 2 super sisters. you are truley blessed.
way to grow big guy!
Father God you have had this whole family in your hands we ask that you continue to bless and heal Ryan Thank you Jesus for all you have done and will continue to do for not only Ryan but his mommy and daddy and his 2 sisters. You are a mighty God! Amen
Leighann what an amazing year! You are an outstanding woman and mother who God clearly has in his plan. Happy Birthday Ryan! Love ya!! Sarah Bolinger
HAPPY BIRTHDAY RYAN!!! I have prayed so hard for you, told everyone I know about you and have enjoyed watching you grow this past year…Praise God for this wonderful Miracle!!! 🙂
Happy Birthday Ryan! God bless you sweet baby boy and your family!!!!
Samantha D. in Trinity, FL.
Happy Birthday Ryan! What a year! I hope you have a great time celebrating.
I just now got my new People magazine and there is an article in it about Ectopia Cordis! Thought you might be interested! Love reading back thru Ryan’s story! Thank you for keeping us all informed!
wow, leighann. thanks for walking through all that…your journey with ryan this past year. happy birthday sweet boy!!
What an amazing miracle from God that little guy is.
Lindsey
Happy Birthday Ryan! You are truly a gift from God. We continue to pray for you!
Happy birthday, ryan. What a busy year. You are an inspiration to so many. Thank you for being so strong.
Praise the Lord for your family and doctors.
Happy Birthday to you, Ryan!
Thanks for sharing his story with the world.
H A P P Y B I R T H D A Y, to the little King!
Sing together now: Lalalalalala Lalalalalala (Greek for: Praise God!) 🙂 Love, Marmi
Wow. God is so good. Happy birthday Ryan! Great things are in store for you and your amazing family!
Blessings from Arkansas!
Leslie
What a busy and miraculous year! You guys have been through so much, but I’m SO thankful little Ryan is home with you finally!
Big Hugs – Tiffany
i love this post….and praising God for his first year and many more to come 🙂 Happy birthday Ryan!!!
Happy 1st Birthday, Ryan! You are an amazing little boy. I am so happy you are celebrating such a big milestone in your life at home with your wonderful parents and sisters. You had a rough road to travel, but looked how far you have come! May the Lord continue to bless you and your family.
Gail
Annapolis, MD
Happy Birthday Ryan! We love you and thank God daily for you. The girls and I have prayed for you every night since you were 12 weeks old in utero. I have always believed God did miracles and made people well but you have proved to me and many others that God STILL does miracles and HE is the Great Physician. Your sweet life has taught us about the power of God.
Thank you Leighan for the recap. I never stop being amazed at his miraculous journey. We love you all so much and continue to pray for Ryan and your little family.
Such an amazing journey that you have all been on. Thank you so much for sharing and of course….HAPPY 1rst BIRTHDAY RYAN!!! He looks tall….almost 30inches seems long!! Our Ryan is 2 now and just at almost 35 inches!! GROWING BOY!!
Happy Birthday RYAN!!! I can’t believe it has already been a year!We are so excited that you have come so far big guy and we can’t wait to see what God has in store for you!!
Happy Birthday, what a praise and testimony of God’s awesomeness.
Happy Birthday Ryan! Congratulations on making it through this year, Leighann and henry! You’ve done and amazing job.
Happy Birthday Ryan!!!! I am so amazed at how strong you are Leighann! Ryan comes by it naturally! Reading your blog has given me such inspiration when dealing with my son’s medical issues. I pray you have a happy and uneventful birthday celebration!
This comment has been removed by the author.
This comment has been removed by the author.
This comment has been removed by the author.
This comment has been removed by the author.
Happy Birthday!
My second son turns 11 tomorrow. February is a great month to be born!
Wow, what a wonderful celebration! Happy Birthday to Ryan!!!!
MH
Happy Birthday Baby Ryan… will we have to stop calling you Baby Ryan now?
You have stollen my heart and changed my life in ways that I never thought possible through a computer and prayers. We serve a mighty God who has been using you every day that you have been here on this earth so far. I can’t wait to see how he continues to work miracles in your life and use you and your precious family for his glory. We all love you in the Smith house!
Happy Birthday, Ryan! What an incredible journey for your family this year. Wishing you all the best!
Happy 1st birthday, Ryan! You are TRULY a miracle from God and have a story to tell. Love you!
Mara Smith and family
Happy Birthday to you, little Ryan, and many, many more!
Leighann, your son is beautiful (as is the rest of your family). I am in complete awe of what you all have endured this past year. It makes me so happy to see Ryan’s happy little face.
Blessings,
Wendy Armbruster Bell
Happy 1st Birthday Ryan! You are such a happy baby and bring so much joy to people! You are blessed to be born into such a wonderful and loving family! Leighanne, you are such a fun and patient Mom! Maybe you could freeze some of the cake for Ryan to eat next year!!! lol!
~Heidi
your blog is different. It’s cute :).
I cannot believe he is one. That is absolutely amazing!!!!
HAPPY BIRTHDAY RYAN!!! We are so excited to celebrate your birthday!! You have blessed so many people and we can’t wait to see what God has in store for you!!
Hey Baby Ryan – You are already making your mark on this world. You have the most brilliant smile. Hope you had a great Birthday Party! You are the strongest and bravest one year old I know!
Heather and Chad
Savannah, Luke and Taylor
Happy Birthday Baby Ryan!!! What a miracle you’ve been to every person’s life that you’ve touched. May you stay healthy through your second birthday and bring many joys to your family 🙂
I really do not have any words to say when I look at these pics from the last 12 months. I really just sit here in amazement at what the Lord has done in Ryan. What a blessing he is! To think, so many women are told things about their unborn babies that leave them wondering whether or not they should carry them to term…you and Henry decided to rely on God and what a miracle He has done. Happy Birthday Ryan!
Happy Birthday Ryan!
Happy birthday, sweet boy! You an answer to so many prayers!! Can’t wait to see what wonderful things are in store for you this year!
This year that I have been following Ryan’s story I have been amazed at how God has strengthened you and helped you through each day. God is so good!
Looking at this overview of pictures and the story of all he has been through, I praise God again for bringing Ryan home. I love that sweet baby!
I pray that Ryan had a good first birthday…and that this year will hold many blessings for him and for each of you.
Linda @ Truthful Tidbits
Happy Happy Birthday Baby Ryan!!!
Happy birthday Ryan!!! What an amazing year you have all had! He has come such a long way. Praise God!! Many more amazing years to come with your little man!
Happy Birthday to Ryan!!! Praise God for this past year – glad Ryan had been home and doing FANTASTIC!!! Looking forward to watching hiim continue to grow and thrive in the upcoming years!!! Thanks for sharing your families story and struggles…and thanks for the honor to be praying for such a special little guy!!
How is this possible? It was just yesterday when you were preggers and Ainsley was in your arms after mom’s connection when you realized she had pee’d her pants. It was too late, your white blouse sleeve already had pee on it. And now Ryan is 1. Wow!
Bimbo, sei il più bello del mondo! Gesù ti benedica.
In 1980, my son was born with left hypo heart syndrome which is no left side to the heart and his aorta was solid. At that time, it was the only heart disease that was inoperable. He died at 2 days old so to read about Ryan and his success is wonderful. I am so happy for your family and for Ryan. He is certainly a miracle child and an angel. God bless your family.