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 2 ounces.
Then things got worse. By six months old Apollo still weighed less than 14 pounds. He was shrinking before our very eyes (notice he is wearing the same swimsuit in both photos). He went several months without gaining an ounce. 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 will need surgery to repair his very unique heart.
Apollo had a succesful division of his double aortic arch 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.
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, tracheamalacia, and compressed tracheal rings. His trachea has been crushed by his double aortic arch, and will never be normal.
Apollo also has another misplaced vessel 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, so the only thing to do is hope that, as Apollo grows bigger, his esophagus will straighten out, now that the double aortic arch has been repaired.
Because growth has been an issue for Apollo since he was three months old, it was the concensus of all the doctors, that Apollo needs supplemental feeding. Apollo had a GI tube place May 4, 2012. We hope this is the answer we have been looking for.
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!!