Apollo was born June 26, 2010 by emergency c-section after experiencing a cord prolapse at home. {You can read the whole story here} He weighed in at a whopping 8 pounds 12 ounces and was declared perfect at the hospital.
Apollo had trouble nursing from day one. He was tongue tied and had a frenulectomy at two weeks old. He was fussy baby that slept very little. Despite all of our feeding issues he was gaining weight well! At three months Apollo weighed in at 13 pounds 4 ounces.
Then things got worse. By six months old Apollo still weighed less than 14 pounds. He barely slept. He was shrinking before our very eyes (notice he is wearing the same swimsuit in both photos). He went over three months without gaining an ounce. He got a cold that never quite went away. His breathing was raspy and wet sounding. He coughed a lot. By this time I knew something was wrong. We tried solids which he would gag and choke on. His breathing was very loud and wet sounding. He had frequent coughing fits and always sounded sick. Every meal ended in screaming. This is where our year-long quest for a diagnosis began.
By a year old it was clear we did not have a healthy baby. Apollo weighed 17 pounds 14 ounces. He had just barely doubled his birth weight. He had chronic respiratory issues and difficulty eating. He was hospitalized at 11 months with RSV and pneumonia where the doctors told me “he is much sicker than your average RSV baby“.
January 18, 2012 Apollo (18 months) received and MRI and was diagnosed with Double Aortic Arch. It is a rare birth defect that comprises less than one percent of all congenital heart defects. Apollo has been quite literally being strangled by his own heart. He will need surgery to repair his very unique heart.
Update March 2012:
Apollo had a double aortic arch division March 7, 2012. Surgery took place at Seattle Children’s Hospital. Everything went well and he was released after 48 hours. Here are part 1 and part 2 of his surgery.
Update April 2012:
Six weeks post-surgery it was obvious something was still wrong. Apollo was choking less frequently, but still continuing to struggle to eat and grow.
Apollo was admitted to the hospital April 23, 2012 for five days of testing. After an upper GI, swallow study, CT scan, rigid bronchoscopy and flexible bronchoscopy, we finally had some answers.
Apollo has laryngomalacia both tracheamalacia (floppy larynx and trachea). His trachea has been crushed by his double aortic arch, and will never be normal. Instead of being round it is more “C” shaped.
Apollo also has misplaced artery in his heart which pushes against and compresses his esophagus. This means he has to physically force each piece of food down this throat. Not only is this physically taxing, it makes it difficult for him to breathe. It is too risky to repair with surgery. This particular defect is so rare, the doctors as Seattle Children’s have never seen it before. They have no idea what his long-term prognosis will be.
Update May 2012:
Because growth has been an issue for Apollo since he was three months old and he has a physical defect preventing him from taking in enough calories by mouth Apollo had a g-tube placed May 4, 2012.
While the g-tube won’t “fix” his heart, esophagus or trachea, it will finally allow him to grow. Growth is key right now because as Apollo grows, his trachea grows. This will hopefully improve his breathing. At the same time, Apollo’s trachea grows more rigid each day (as it’s supposed to) but this means he’s in a race against his own body. We want his body (and therefore trachea) to grow as quickly as possible right now before his trachea becomes completely rigid, and therefore restricting his airway more.
{Updated September 2012}
July 7th we saw Apollo’s cardiologist the first time since his vascular ring division post-op visit.
This visit, we heard even more bad news. Apollo has an “acquired discontinuity of his left subclavian artery”. In plain English, that means his left subclavian artery no longer functions. At this point the doctor’s have no idea how his body is supplying blood to his left arm. In the long term, this could mean the loss of the use of his left arm. And if the blood is flowing up through his head, he is also robbing precious blood flow from his head.
We were told Apollo will have to be “closely followed” by a cardiologist for the rest of his life.
An ultrasound of Apollo’s neck confirmed that he is drawing the blood flow to his left arm from his head and neck.
Apollo’s pulmonologist said his airway is getting worse. It’s something we have noticed ourselves but been in denial over. After all, it’s been “fixed”. We have sought a second opinion from Boston Children’s Hospital and Texas Children’s Hospital an spoken with a cardiothoracic surgeon at Seattle Children’s Hospital. He will be having this surgery re-done. It is just a matter of when, where and who.
{Update October 9, 2012}
After having sought a variety of medical opinions, we have decided to have Apollo evaluated at Texas Children’s Hospital. He will have a CT scan and Upper GI done October 24th and we will meet with a cardiothoracic surgeon on October 25. Depending on the results, we may have his surgery re-done in Texas, or we come back and have it re-done in Seattle.
Apollo has been choking and vomiting 2-3 times a week and his stridor has returned.
{Update December 2012}
Apollo had a second heart surgery October 30, 2012. The surgeon at Texas Children’s Hospital was able to reconnect his left subclavian artery, remove more bands constricting his his trachea and remove the diverticulum that was compressing his esophagus. Apollo developed chylothorax as a complication to his surgery and is currently on a fat-free diet as his body heals.
{Update March 2013}
Apollo has recovered from his chylothorax. He is now back on a high-fat diet. He receives 50% of his calories through his g-tube and is currently receiving feeding therapy. Apollo still doesn’t sleep through the night and still struggles with anxiety around sleep.
We appreciate any prayers on behalf of our son. Please share his story.
Hi,
I live in Alabama, and my son had a vascular ring caused by a double aortic arch. His non-dominant side (the left side of the arch) also had blood flow. He had the surgery November 29, when he was about four months old, and it was a breeze! I wish I had known someone (anyone!) who’d had the surgery before, who could have told me that hopefully it wouldn’t be that bad. My son had the surgery Tuesday morning and we were discharged Friday afternoon. My e-mail is lindsaydiffee@ymail.com – e-mail me and I can tell you lots more. I see that you know someone who had this surgery done at age 10. You already know some about it, but maybe I can give you a younger-child perspective on the surgery. Incidentally, my son was also born via a (semi-) emergency c-section due to cord issues. I could write all day, but e-mail me and we can talk that way. I can also give you my number if you want. -Lindsay
I heard about your family through a family friend… You know her through this blog.
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Just wanted to post a message to say that I’m praying for Apollo. I actually found your blog a couple of years ago, I think it was a little while before he was born, so I’ve followed all of Apollo’s health difficulties but I’ve never posted before (I thought it would be weird because you don’t know me and I just found your blog on Google). Hope that the surgery goes well and he recovers quickly.
We’ll keep him in our prayers.
Heyya Renee ~ I added you to a great prayer circle that I belong to with some mighty prayer warriors. Looking forward to seeing the glory of the Lord shine in this trek of the journey that you are all about to embark upon. Know that God has you all in His hands. Since you all now live in WA… even your parents… will you ever be visiting your brother here in Alaska? Cheaper for him to come there to visit, eh?
Renee and family ~ I have Apollo in my prayer book and am praying daily as Wednesday approaches. May God guide the hands of the surgeon(s), give them wisdom, and bring complete healing to little Apollo! May he fill each member of your family with His peace as you walk through this season!
Janie \o/ ♫
My mom just told me about Apollo yesterday. I am passing on the prayer request to the women in my community group. We will all be praying for a good outcome, speedy recovery and peace for your family!
Just finished praying for this wonderful little boy. May God be with the doctors, nurses, and anyone involved in his care. May his mom and dad feel God’s arms wrap around them and give them assurance and God is watching over their little boy.
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Hi There…felt compelled to comment after stumbling across this blog. I had surgery to correct my double aortic arch 25 years ago, when I was just 3 months old. Though I did have ongoing bouts with pneumonia and 2 incidents with croup, I have continued to lead a full and normal life. Though I’ve noticed that many websites suggest future limitations on exercise and dietary restrictions, I have not experienced any such need. I was 4-year college athlete (women’s lacrosse), and continue as an avid runner. I have been diagnosed with cough-variant asthma, possibly a lingering post-surgical outcome. However, it’s been well controlled with an inhaler and self-monitoring.
Anyways, I just wanted to leave a note and wish your family well. I’m sure it’s a scary time dealing with a sick child, however the worst should surely be over! Clearly I can’t speak on behalf of everyone who has ever been diagnosed with DAA, but I can say for me, this medical anomaly has not hindered my development or my life. All the best to your family and little one!!
Stumbled across your blog today and hearing your story helps. my daughter has had some of the symptoms Apollo has and the lack of diagnosis was starting to drive me mad. Your story gives me hope that one day we will have answers too. my daughter us 17 months. After birth she lost a whole pound and almost ended up back in the hospital. After 1 month was hospitalized for bronchialitis because of retraction but sent home the next day being told she was breathing fine. She has always breathed so loud everyone can hear it. Always been s very slow eater even w a bottle had reflux as z babyand even now has trouble rating….chokes vomits frequently but drs think she doesn’t seem to “struggle” breathing just that she has allergies or abad gag reflex shes In the1st percentile for weight but 70th for height……has had chest and throat xrays and today just finished with a second ent visit which again determined no issues w adnoids voice box etc…. So next we are off to mass general Boston to see pulmonary specialist, ent, etc etc all in one building and possibly an MRI or bronchisl scope….. I fear the worst for my sweet happy girl but youtlr story helps… thank you.
Deanna, I have heard great things about Boston…I hope you find your answers there. It was an MRI that found the double aortic arch and, more recently, a CT scan the found the second heart defect (the vessel that is compressing his esophagus). He had x-rays done and had seen an ENT and pulmonologist numerous times prior to his diagnosis. My biggest word of advice is to PUSH for the tests. Our son would still be undiagnosed if we hadn’t pushed so hard. I am so glad you found my site…I try to blog very specifically about his issues, because I know how frustrating it is and how lost you can feel. Feel free to contact me if you have questions in the future.
I stumbled across your blog through Pinterest, and I want to thank you for sharing Apollo’s inspiring story. I am a speech-language pathology grad student at the University of Washington (yay Seattle) and hope to work with children who have feeding difficulties. Apollo sounds like an amazing little boy, and I find your continuous perseverance to get a true diagnosis and then work through those challenges just amazing. I can’t wait to keep up with your beautiful blog and the strides Apollo makes as the years pass!
Hanna- thank you for your encouraging words. I am so glad you found my blog…I want every doctor, nurse and speech-language pathologist to hear his story. He was overlooked and shoved aside far too long. I hope that someday his story will help some other kid…
Renee, first I would like to congratulate you on your first place finish as the Top Mom of Teens on Circle of Moms. You truly deserve it! Second, I want to tell you how happy I am that I took some time to read your blog. It’s beautiful, wonderful and inspiring. Apollo is certainly a precious angel that was put on this earth to amaze people and to remind people how important it is to count your blessings and be truly grateful for them. Thank you for sharing your life with the world and I look forward to your posts. =)
Take care,
Tanya. (aka Comic Strip Mama)
Renee,
Your story was brought to my attention by a friend out in Seattle. Sending lots of positive energy to you and your family!!
We just learned yesterday that our baby girl has a vascular ring, so we are just beginning the journey. She, along with her three siblings, also have myotonic muscular dystrophy. Here is our story http://www.caringbridge.org/visit/abbene.
I’ll be thinking of you!
Take care,
Liz
Liz, thank you for commenting here, and feel free to email if you have any questions. There is a support group on Facebook, too if you are interested. I will be sure to check out your baby’s caring bridge site.
My daughter had this surgery when she was 16 months old in Portland, Oregon. She is almost 18 now…..it’s been tough. Lots of eating problems respiratory problems and such. Feel free to email me of you would like! Prayers for you and your family and especially Apollo!
Tracy- thank you so much for commenting here. I’d love to hear more about your daughter, but can’t find your email. Could you send me a message: bergerondozen (at) yahoo (dot) com. Thanks
I am praying for your sweet Apollo! God is able to heal and do the miraculous. Just keep praying prayers of faith and speaking the Word over him and don’t stop until He is better. He is able!! Praying!!! Much grace and love to you!
This is an inspiring story and it’s amazing how brave and able you are in the midst of it all. Thank you for sharing Apollo’s story!
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Contined and prayers and lots of hope for answers and fixes in Texas.
I have so many things that I could say to you and even though i do not know you, I am praying for you now. My Grandaughter went through similar situation at Childrens at 3 months old with Cardio myopathy. She went eventually went through a heart transplant when she is 6 months. She was very sick for the first few months of her life but is now doing great. I have great faith in the abilities of the doctors at Childrens and I am sure in the Texas clinic also. God will be at his side. These children are true miracles of him of God and he will look after him to make sure that all is well. the Best to you and your family during these times.
Hello. I was looking for large family recipes online and came across your blog. Apollo is a beautiful little boy! And such a great name, too! I am glad that the internet directed me here so that I can now pray for Apollo and your family. Hope things get better soon….
Not sure if he is on a feeding tube still? I have a friend with a 2 year old with a tube and she introduced me to Tubie Friends http://www.tubiefriends.com/ – You have probably already hear of them, but if not, Apollo might like them
Thanks! Apollo has a Tubie Friend. They were so helpful and awesome. They rushed Apollo’s order and I met them to pick it up as we were headed to the hospital to get his tube! We are so grateful to them.
Hi. I’ve been reading Apollo’s story. My daughter is in the hospital and will have her double aortic arch repair soon. She is only 3 months old, but my fear is that we don’t know if her arch has caused any permanent damage to her esophagus or trachea. Please contact me! I would like to know more and prepare for any complications that may happen.
Email sent
Hi! I did not receive any email
Please resend it!! My baby had her vascular ring repaired on Friday, but now having respiratory issues. Tomorrow 3.18, she will have her bronchoscopy done to see what is going on.
I’m sorry, I didn’t see your first comment! Sometimes they get buried. I’m off to email you now, be sure to check your spam folder, just in case!
I just hop-scotched over here from, from the Bethany Christian Services FB page and read your adoption story about Avi– and then saw this page w/ Apollo’s story– I said a prayer for him and for your awesome huge family!
We’re going through our first home study so we can adopt our first child — hopefully in less than 2 years, but we’re just trusting in God’s timing. Thanks for sharing your stor(ies!)
Thank you so much for commenting. I love to share about our adoptions and Apollo’s story- since he went so long without being diagnosed. Best of luck with your adoption!
I came across your blog while researching melatonin use in toddlers, which then brought me to Apollo’s story. I just wanted to let you know that I will have Apollo and your entire family in my prayers.
Thank you so much!
I just sent a friend your link. I’ve followed your blog since before Apollo but she’s now facing numerous tests to figure out why he ‘failure to thrive’ and they’re exploring feeding tube possibilities. I hope she finds, at a minimum, solace in knowing other children have been through it and are still fighting hard.
Thank you, Jessica. Let her know she is more than welcome to email me if she has questions. The decision to place a feeding tube is a scary one.
They think it’s a vascular ring. They’re going to be doing an MRI to confirm. Amazing that something that seems to be fairly unusual has happened to two people I ‘know’.
It has to do with how “small” the world becomes with the internet. Heart defects happen in 1% of babies, less than 1% of *those* will be a double aortic arch. There are a couple of other variations of vascular rings as well. We also have a facebook group: https://www.facebook.com/groups/339823096046203/