To be filled with more

It's been just over a month since our visit with the cardiologist. And the news was less than desirable. Her levels had gone from 59 to the 70/80 range; although the doctor said the elevation may have been due to the fact she was more active on the table. (It's hard to rationalize with a 14 month old that they should lay flat on the table). But the bottom line is her pressures did not go down.

That was hard. Hard to hear. Hard to swallow.

But we moved forward. We had decided whatever the outcome we would go get coffee (and whip cream for the kids) afterwards. And we did. I had a mommy playgroup to go to after the appointment. Which we did. And there my tears were embraced by a group of women who loved on my kids, changed diapers and made me tea. They hugged me until oxytocin (your brain's happiness drug) was released into my body. And that was new to me.

A therapist had told me that we need to grieve in community. I was like, "Uh, no." I'm plenty happy (or honestly, content to be sad) grieving in my car, in my bed, in my shower. And what I realized in that moment was that there is a place for grieving by yourself. But what grieving in community does is allow the grieving to have it's moment and then you feel the ability to move past and move forward more quickly. I had my emotional overload and by the end of the day I felt we could start looking at the situation logically and make some new decisions.

After taking the weekend to reflect and pray we decided to use the next 4 months before our appointment in March to get informed and seek support. When I was first told about Kylie's situation prenatally, the doctor's told me to stay off the internet. Rarely do people blog about success stories and you'll just freak yourself out. So we followed the doctor's advice.

But now we need to know more.  The doctors had given us some general information as we've visited over the past year. We're grounded enough in our reality that we want to know the ins and outs of this condition and what others are doing to combat and cope with it. There seems like a mountain of information to sift through, but in my first go, these were some key points I found:

• There are two types of PAH (pulmonary arterial hypertension). Primary PAH's cause is unknown (also called Idiopathic). Secondary is a result of another problem (like heart disease). Kylie has primary.
• Idiopathic PAH is rare with an estimated incidence of 1 in a million per year, though its numbers seem to be increasing.
• IPAH patients have an increase in Endothelin production which is what the body normally produces to cause blood vessels to tighten.
• The tight blood vessels between the heart and lungs raise the pressure in the lungs and make the right side of the heart have to work harder to push blood into the lungs. Because of this the right side of the heart is normally enlarged. You can have a right-to-left shunt where the oxygenated blood is leaking backwards into the right side of the heart because there isn't enough force to keep it flowing in the proper direction.
• Prostacyclin is normally produced in the cells of the body to dilate the blood vessels. Her production is low or not enough to combat the raised Endothelin production.
• Kylie is asymptomatic, meaning she does not display any symptoms of IPAH like fainting, dizziness, racing pulse, or chest pains. We only know she has it because an echocardiagram says she does.
• Most people with IPAH take medication to help open the blood vessels and relieve their symptoms along with making dietary and lifestyle changes.
• Allicin (a component found in garlic) seems to be widely acknowledged as a natural anti-hypertension agent.

So I'm in a state of making lists. Lists of questions to research, questions for the doctors, information lists, action step lists. Looking at my list of 7 bullet points I know I have a lot more to learn. But we're leaning in and not too proud to ask questions and ask for help. Please always feel free to send us things you read or find that could be helpful. And we just pray we find the time with two other children and regular life to give our research the time it deserves.

Kylie's nutritionists, Heewon and Ellen (Ellen is taking over Heewon's practice as she is moving out of LA), have started Kylie on the supplement Allicidin. Here is a site describing how allicin is created in garlic; I found it quite interesting. Since she takes it twice a day I laugh that I have a garlic baby, because she really does smell a little like garlic. 

 As this is the beginning of a new year, Ethan and I were trying to pick themes for the year. I told Ethan I felt a little silly and embarrassed by what I thought my theme should be...positivity. It's something that is not a default for me; I would go as far as saying I'm not very good at it either. But a vision came crashing into my brain of the pamphlets you often find at doctor's offices about horrible diseases and conditions and there always seems to be a photo of a happy family on the front. I want to be that. The family that is full of joy no matter what the circumstances. That I can be stronger than the everyday frustrations and set-backs. That I can find the positive in every situation and be grateful. To go against myself. Because, honestly, I love me a pity-party. And there just isn't time for those anymore.

So we are looking positively into 2016. A year filled with possibilities. We know that our God will not leave us where we are and so we run forward with hope that we will go amazing places this year, learn incredible things, and bring the message of Jesus where we never would have thought we'd find ourselves. We'd love for you to journey with us. We love and are grateful for all of you!

Heewon and Ellen, Kylie's nutritionists

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

We started doing themes several years ago after hearing a talk by our friend, Hank Fortener. People often don't keep resolutions, so instead choose a theme to frame your year around. Check out his site! He's an incredible human being.

Ellen is the nutritionist we see and runs Points by Ellen.

Remembering to Breathe

Two weeks ago, I was beside myself in tears as I thought about Kylie's upcoming cardiologist appointment in December where she will have an echocardiogram to get a new measurement of the pressures in her lungs.

It will have been 5 months since we chose to not put Kylie on medication, but rather to attempt to fix her persistent pulmonary hypertension with natural healing. God has provided miracle after miracle in her and our lives that meds just didn't seem to be the right puzzle piece in this part of her masterpiece. There has been so much inside-out healing in our family this year that we made the decision to embrace the holistic healing path in a search for the root cause instead of treating symptoms.

We saw Heewon (our nutritionist) last Saturday. She couldn't find the bacteria in Kylie's body. It had begun in her lungs, moved to her blood, then liver. Now, it's gone. Gone. I had the biggest swell of joy. I was filled with so much gratitude I nearly started dancing and hugging her. Luckily, keeping Kylie from grabbing every vial in the office is a good distraction from over-celebrating :)

What we can't know yet is if this bacteria was the cause of her hypertension. So we still walk in the unknown.

And that's a scary place to be without faith and wisdom, which I pray for daily. I am not God. I am not the one who knows what is best for Kylie and directs her in the ways she should go. But God has entrusted her story to us. It sometimes feels like He has entrusted me with much when I feel I have not proven myself with the little. But I have to remember He qualifies the called; not the other way around.

And I'm not alone in this. I was slightly taken aback when Ethan mentioned he wants to be there on Friday when Kylie is tested. It was a thought that had not even crossed my mind. I was like, "You have work." But I had to breathe and let it sink in that we made these decisions together. He is her father as much as I am her mother. And if one of us feels the weight of foolishness (that's mostly me), the other can lift the fallen one. We walk together through this.

I wrote down the following in a journal to get it out of my head at the time:
"The decisions I made, I made them out of faith and love. I don't know if they are right.

In three weeks, I will stand in front of a doctor, an expert in a field that makes my understanding seem smaller than a grain of rice.

I will hold my breath as I present my daughter. It will feel so much weightier than a simple measurement reading. It will feel as though my worth, my beliefs, my choices will be weighed and judged."

And the comforting voice of God reminded me. Breathe. You are my child. Your worth is in me no matter how foolish the world thinks you are, how foolish one man thinks you are.

And then I saw the greater narrative. I thought about the end of time when we stand before our God and it will feel much the same. I saw myself in tears saying, "God, I don't know if the choices I made in my life were right or wrong. But they were made out of faith and love." And I won't know what will come through the fires of God, but it doesn't mean I don't keep pursing love just because I may not understand in this lifetime.

God loves correction and refinement. He loves to chisel at those who seek him. Love is made more perfect in Him. And perhaps the more I love, the more I may understand. Or not.

I've been reading Brené Brown's books Daring Greatly and The Gifts of Imperfection. They have brought about so much reflection and healing about the shame I heap on myself. There is a beautiful line in her book about keeping a list of names of whose opinions truly matter; it should be a short list. And that has been a hard practice for me to incorporate into my life because it doesn't mean that others' opinions don't effect me. They just can't define who I believe I am or the me that I and those closest to me love.

So even if Friday's results tell me that she is no different than she was three or six months ago, it does not mean we made a wrong choice. There was a bacteria in her lungs and it is no longer there. She is healthier because of the choices we made. We made a choice that brought about good even if it isn't the result we hope for in the end.

Another thing I'm learning from Brené's books is to shut down foreboding joy. I refuse to not make hope a big deal worrying that I may look foolish if I'm wrong. I refuse to not press into the discomfort of being proud of the choices I made. I will say I hope with abandon that the doctor will be amazed and she is healed and healthy. 

And if I'm wrong I will grieve with those who love me for those choices because I was courageous enough to let them know I had hopes and expectations. But I will not dwell on that possibility until it is a reality. Hopes met or unmet, Friday will come and go, and we will find our way with our God and our Tribe from there.

So we are praying for Plan A. We want her future to be one of health and joy. Please join us in praying for our Kylie-bear.

Yes. I'm a realist in transition hoping and learning to be an optimist.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Brené Brown is a researcher and storyteller. Her blog can be found here.

Mud bath...

..well not exactly.

At the end of September, Kylie went in for a mud therapy session. The mud is a combination of Volcanic and Kaolin Clays, Peat Magma, Shilajit, and Target Botanical Agent. It targets sites on the body that have accumulated toxins by creating a thermal effect to draw out deep seated toxins in the cells.

Chinese medicine describes your body as having energy flow and when there is disease or injury, it causes interruptions in the energy flow. Mudding can help remove the "interference fields" and restore chi flow. This results in cells being restored to their optimal cell resonance, having healthy circulation and lymphatic flow, and boosting the immune system.

Unlike a mud bath you think of at a spa, this kind of mud therapy targets specific sites. Kylie's mudding included 3 areas: hands and feet, vaccine sites, and her heart inflow point. The hands and feet were mudded because they are the sites through which energy recycles. The vaccine sites are mudded since vaccines contain chemicals and metals. Metals like aluminum cause cells to absorb water and swell so toxins can't be excreted from the cells. Her heart inflow point on her chest and back was mudded to help with the systemic bacteria that we've been dealing with. In talking with Heewon, the bacteria seems to have moved out of the lung tissue and into her blood. This is a good sign.

When we arrived, we were greeted by Ellen, who did the mud therapy for us. Before applying the mud, she had me make an "O" with my thumb and ring finger and the sites were tested for their strength, which were weak. Ellen applied the mud and then watched as Kylie tried to eat it and tried to climb off the bed in attempts to get brother and sister's toys. It got a little messy, but when the sites were retested, they were strong.

And that was it. I talked with a friend who had done mudding and she said the effects weren't immediate but in a month or so she felt a lot better. Heewon also told me we may need to mud more than once.

Then this past Saturday, about 3 weeks later, we had our normal follow up with Heewon. The heart and lungs were strong, yay! Now the systemic bacteria had moved into her liver. This is exciting because the liver clears the blood of harmful substances and excretes them into bile to be flushed out of the body. It looks as the though the body is getting ready to rid itself of this. Our hopes and prayers!!! Heewon had a little laugh that maybe next time we'll come in and the bacteria will be in the kidneys as its last stop on the Kylie train.

Heewon also found an emotional blockage in T6 of her vertebrae and I learned that there are nerve endings in each vertebrae that go to specific organs. One of the organs in T6 happens to be the liver. So hopefully now that it's cleared, and with the liver supplement she's on, her body will be that much stronger to fight this bacteria.

Some very sad news for our family is that Heewon is moving and closing her practice at the end of the year. I keep asking God why and what I'm supposed to learn through this turn in the road. I've pondered amazing as well as depressing options. But I'm learning again and again that understanding comes after action. So we keep praying and ask that you pray along with us that by the end of the year, this is done. We have another follow up with Heewon just before Thanksgiving. Then the big test comes in December when we go back to see Kylie's cardiologist for an echo to get new readings on her pulmonary hypertension. We fervently pray that with the bacteria out of her lungs, the pressures will have dropped.

Thank you so much for journeying with us in your support and prayers. We can't do any of this without the love, joy and reassurance from our Tribe.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life

Life on the unbeaten path

It's been 2 months since our first steps on the unbeaten path. Food has become a huge part of my life right now. After 6 weeks of mostly extracting things from our diet (losing an additional 9 pounds in the process), I'm finally getting a footing on adding new and exciting things to my family's menu and stomachs on a budget. I've encountered several new friends who have traveled this paleo road already and are helping me and being such an encouragement. 

Shopping is still the hardest part of my week, taking all three kids to shop for things we've never cooked with before which makes the trips much longer than they used to be. And we normally end up leaving the store without one or two things because they just don't carry them. But, I've learned customer service makes all the difference in my mood. We've switched grocery stores to one that's farther away just because the staff is so extremely empathetic and helpful. Tony in produce even brought fresh cut up fruit to my crying children and their determined on-the-verge-of-a-breakdown mother.

We saw Kylie's nutritionist in August and September, and both times Heewon told us her heart and lungs felt strong which is so exciting. Last week, we went in and saw Kylie's cardiologist for an echo. Her pressures had dropped from 63 to 59. According to doctors, it's minimal progress and he is still recommending the medication. To us, 5 points is 5 points and we're heading in the right direction. Our end goal are numbers in the low 30s so we still have a ways to go.

We have been doing castor oil packs with Kylie several times a week to try and help draw out the toxins in her lungs and now we're going to try mud packing at the end of this month to see if it can help as well.

We will go back to the cardiologist at the beginning of December to see if she's made more progress!

One update on Kylie's club foot - she's outgrown the shoes on her infant snowboard :) She will be getting bigger shoes to continue wearing at night until she's three, but the doctor said she will not need any surgery and can check in with him once a year until three!! Hurray!

Kylie turns 1 next week and it's crazy to think of everything that's happened in the last year! 

I'll post again after the mud packing in a few weeks! Until then, we still covet your prayers.

Waves and high fives to everyone!

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life

Fork in the Road

[Originally written 7/15/2015]

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

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Heewon is the nutritionist that founded and runs Healthee Life