I'm in my cabin eating lunch, and I should really be heading back to the wards, but I need to tell you what happened this morning.
I was putting away some supplies when the eye team nurse came in to remove the patches from Oriace's eyes. He twisted and wiggled and cried, doing everything in his power to let us know that he really wasn't a fan of the tape coming off his skin. When the gauze was peeled away, he screwed his eyes shut against the light, absolutely refusing to open them. His mama looked up, worried, and we smiled back down at her, explaining that we would wait. That eventually, Oriace would be curious enough that he would brave the day. It happened after a couple of minutes.
First the left and then the right, his little eyes ventured open. His brow furrowed and his head wobbled and his arms flailed and we couldn't tell if he was seeing. Mama's eyes implored; can he see you? Oriace answered us in typical baby fashion when his wildly waving arm came a little too close to his face. Immediately, he went totally still, his tiny body tense. He moved his hand to the side, following it with his eyes, and his mama started to laugh. He did it again, and so did I.
Little Oriace spent the next ten minutes absolutely enthralled by the sight of his own hand. He followed it with his new eyes as he waved it back and forth, back and forth across his face. Finally, apparently satisfied, he popped both thumbs into his mouth at the same time, his curled fingers making the shape of a heart in front of his nose.
Seeing a child see for the first time? That, my friends, never gets old.
I'm Ali, wife to Phil and mama to Zoe and Ethan. We spent the past 6 years living and working with Mercy Ships on board the world's largest non-governmental hospital ship, the M/V Africa Mercy, as nurse, electrician, and ship's baby respectively. On board the ship, we worked with a team of volunteers from over thirty different countries, providing free surgical care and healthcare development, bringing hope and healing to the forgotten poor in West and Central Africa.
In March of 2014, during a routine ultrasound, we found out that our son, Ethan, has a four-in-a-million condition known as heterotaxy. He has major congenital heart defects, and had his first open heart surgery before he was a week old. Although the future for our son and our family is uncertain, we are more than ever convinced that God will be faithful to lead and guide us through this new season the same way He has in the past.
(I've had a big problem with spam comments around here and literally don't have the time to sort through all of them, so comments on all entries before Ethan's story began have been turned off to keep the numbers down. I moderate all comments on new entries, so don't worry if yours doesn't show up right away. If it won't let you post, please e-mail me at alirae[at]quist[dot]ca. I love hearing from you!)
ali (that's me!)
Due on the Fourth of July and born on Canada Day, Ethan has given us so much to celebrate. He had his first surgery when he was six days old and amazed the doctors by being ready to go home before he reached the two week mark. Heterotaxy can affect every organ system, but so far Ethan seems to have escaped some of the common complications. While his heart has a number of complex defects, it's working well so far. His intestines actually formed correctly, and his lungs and kidneys are all functioning well. He does have at least five spleens, and it's assumed that they do not function, so his immune system is most likely compromised; he will most likely be taking daily antibiotics for his whole life.
Here are a few links that might be helpful, since the medical side of things can get pretty confusing with a heart this special. The surgeries listed for each of his heart conditions don't necessarily apply in our case, since we have to look at the big picture, not just each individual defect; we're still waiting to see how his heart grows before we decide what the next step, which will probably taking place between 3-6 months, will be.