Hello dear friends and family!
We are always so grateful to all of you for your continued prayers for our family and our little Kylie (who has started crawling now, so I guess she's not so little). Kylie had her CT scan at the end of June. The results were good in that the vein they thought was small and underdeveloped actually looked anatomically normal, according to the radiologist. Praise God! So structurally, nothing is wrong with Kylie. What her doctor did say is that, because the scan ruled out lung structure as the cause of her high lung pressure, there is some sort of substance problem with her lungs, like something with the tissue or fluid.
This presented a fork in the road. The medical recommendation is to put Kylie on medication that she would take 3 times a day for many years (sildenafil for those curious--yup). The medication would increase the blood flow through the arteries in hopes to drop the pressure in her lungs. After those many years, she could possibly titrate off the medication or outgrow the dosage but it's not guaranteed.
When we inquired what would happen if we did nothing, the doctor said that as Kylie grows older, she may begin to have fainting spells or her heart may give out if she's fairly active. We're not really excited about either road. So we've decided to take the unbeaten path.
A good friend of ours recommended a Nutrition Specialist (Healthee Life) and she is going to work with Kylie and Suzanne (since's she's still nursing) to see if adjusting and balancing what they eat will eliminate the hypertension. It's not a guarantee, but it's a path we want to explore before committing to medication. They've already had their first appointment and came to the same finding that Kylie's lungs (and large intestine) have low energy. Kylie's been put on some mineral supplements to help her immune and digestive health as well as an herbal supplement to help with systemic bacteria. She's also not supposed to have sugar.
Suzanne's nutrition has altered significantly. She is no longer eating milk, any grain, or eggs which has been an abrupt, difficult transition. Going through sugar detox, carb flu, and caffeine withdrawal (because why drink coffee without milk or sugar?) with the three littles was quite a battle. So now we're on basically a paleo diet and at the beginning stages of finding things we like to eat and reworking how and what we shop for.
Kylie's cardiologist is out on vacation right now, so we'll hear from him after next week about whether or not he wants to continue regular Echos during this period.
We always know that Jesus is our God and we travel this journey for a reason. It has brought along people we may not have met, given us a connectedness with countless others, and increased the impact of our story. We pray, as we walk this part of our story, that God continues to amaze us through our little girl, who everyone says is the happiest and most smiley baby they've met. And that means so much to us, and we love and are so grateful for her.
We continue in faith, hope, and love!
-Ethan, Suzanne, Morgan, Sean, and Kylie-bear
Heewon is the nutritionist that founded and runs Healthee Life
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