Bracing for a heart catheterization

[Originally written 4/30/2015]

Good morning, everyone!

Kylie has a big day coming up that we wanted to reach out and ask for prayers on. She's doing great in just about every way -- smiling, laughing, almost crawling, and generally being an adorable little girl.

However, she continues to have Persistent Pulmonary Hypertension (higher than normal lung pressure) and the tricuspid valve in her heart is leaking a moderate amount (meaning that blood is flowing backwards). Her cardiologist can't seem to find a reason. He even took her case to a meeting of all the Kaiser cardiologists, and they were all in consensus that she should have a cardiac catheterization.

Normally, this is done to confirm something that the doctor has already diagnosed, but as Kylie's diagnosis is unknown, this will be more of an exploratory procedure with hopes of finding a cause if there is one. They will be threading a tube through a blood vessel into her heart and lungs to take measurements and pictures. She will be under general anesthesia, and the whole procedure will be about 2 hours, while the catheterization and photos will be about 30 minutes.

The procedure is set for 7:30 AM next Tuesday morning (4/28). We would be most grateful for your prayers for the following:

-That the Spirit will be undeniable in that operating room. We know that God is in her story and there is power in her story. We think it's amazing that her story has reached all the cardiologists of Kaiser; something we never could have done. 

-For Kylie's safety and the doctor's skill. As the doctor talked about the procedure, he was honest that, as with any procedure like this, there are risks.

-For answers, wisdom and peace. That God gives an extra portion of wisdom to the doctor to read and understand the photos. No matter what the results, that we have a direction to move in and peace in that decision.

-Peace for Ethan and Suzanne as they wait in a waiting room.

-Childcare for the kids.

Thank you all so much for your love and prayers and support. You're part of Kylie's story, too!

Much love,

Ethan, Suzanne, Morgan, Sean, and Kylie

[followup]

Dear family and friends:

Thank you all so much for your support and prayers! The procedure went well and without complication. The doctors confirmed much of what they've been seeing on the chest echocardiograms that she's had in the past and they have our next step.

Her heart looks good and there was nothing surprising there. We are so thankful! The measurements of the pressure in her lungs was confirmed as much too high. They tried to give her a gas to drop the pressure and it had no effect. They did notice that one of her pulmonary veins (returns oxygenated blood from the lung back to the heart) looks small, like it's not fully developed. But because of the high pressure it was too risky to take pictures from inside as it could have spiked her

pressure to dangerous levels (we were thankful for that decision ).  

So, our next recommended step is a CT scan of her lungs and pulmonary veins in the next two weeks and we'll see what the radiologist thinks after seeing those scans. The Dr. feels like we've moved away from a cardiac mystery to a pulmonary one now.

Kylie is doing well in post-op and should be able to go home between 3-4 this afternoon.

Love and gratitude to you all, our Tribe!

Ethan, Suzanne, Morgan, Sean, & Kylie

Here we go!

"I did it, daddy..." Good job, kiddo. ❤ #perfect

Feeling so much better now that I've eaten!

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

Like normal people numbers

[Originally written on 1/30/2015]

Last Friday, the cardiologist said that Kylie's heart function was normal (like normal people numbers). Her cardiomyopathy is stable!! She still has the pulmonary hypertension (high lung pressure) but he said she's doing well so he really doesn't want to give her meds or do anything aggressive to bring the pressure down -- why interfere with a healthy baby? :)) So no heart catheter and no medication. We'll go back in 3 months. As for the foot surgery and anesthesia, he wants her to be at least 6 months. So when we go back she'll be 6 months and 3 weeks and then he can decide if she's ready. So, April it is! :) Love you all-- please thank everyone for praying for us!!

Love,

Ethan & Suzanne

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

It's never easy

[Originally written on 10/3/2014]

Hello, dear friends!!

As you all know, God has answered us and given us a beautiful new addition to the Ransom clan in our little Kylie. We're thrilled and overjoyed at His goodness and can't thank all of you enough for your love and support.

The hard work still continues, and we could really use your prayers in a few specific ways -- the hardest part of the journey may in fact be just ahead of us. :) It's a lot -- thank you for reading and even more for praying! (see bottom for blessings :) )

1. For Suzanne - she's still a high risk for post-partum depression, especially with her parents taking off next Monday and her having to figure out this new routine in the midst of sleep deprivation and hormonal changes. She'll have two weeks on her own (with whatever supplemental help from the calendar comes) before Ethan's parents come for a week. (When Sean was born, it took Suzanne 9 weeks before she could handle a full week with both on her own without extra help or asking Ethan to come home early.)

     Also, we are syringe feeding because it gives Kylie a better chance of learning to breastfeed which is our end goal. Syringe feeding becomes very time consuming as Kylie grows and requires more volume. Pumping is emotionally/hormonally draining for Suzanne.

     6 weeks post-partum is often the most common time that post-partum depression can surface. Even though Suzanne has been doing better and is already on anti-depressant medication, she is still at risk.

      Another layer that weighs on Suzanne is a big kids consignment sale that is on Oct 16th. It's a semi-annual sale that Suzanne goes to and gets all the kids' clothes, birthday/Christmas stuff for the next 6 months. She calls it her Black Friday and she's normally out for at least 6 hours. It will be overwhelming if she has to take the kids, but it's a lot to arrange care for too. She and her mother have been trying to sort through Morgan and Sean's clothes to see how much she has to buy. 

       Please pray for light, truth, hope, strength and sleep, and for progress with Kylie's challenges (detailed below). It's frustrating and difficult much of the time, even with Suzanne's parents here, so we desperately need God's and our tribe's help for these coming days. All the doctor's appointments are physically and emotionally draining for everyone -- please pray for supernatural strength and optimism!

2. For Kylie - she's got 5 small issues, most of which are normal for babies and resolve very quickly after birth. Kylie's have not and could become bigger concerns if they don't soon. This means extra visits to the hospital. And the whole being more than the sum of its parts, Suzanne is trying hard not being overwhelmed and anxious about all of it, and hopes that now that Kylie has passed her actual due date (10/2) that things will start to get better. Here's what we're looking at:

1. Heart - Kylie has a left to right shunt, which is the prenatal hole between the atria that should close after birth but has not, so her oxygenated blood is mixing with the deoxygenated blood. Please pray it closes soon!

2. Lungs - She has pulmonary hypertension (The pressure is the lungs is high so her heart has to work harder to pump blood through her lungs).

3. Liver/jaundice -Her overall bilirubin levels are decreasing. The liver is processing the bilirubin but it's not passing through the liver ducts to be flushed fast enough. If this doesn't resolve she may have biliary atresia (a narrowing of the bile ducts in the liver making it hard to flush bilirubin; sometimes requiring surgery).

4. Club foot -- we're set to begin casting/bracing Kylie's club foot a week from next Tuesday. Normally, there needs to be surgery at the end of that process before bracing begins, but with her heart/lungs where they are, she's not cleared for anesthesia, so the surgery is being postponed. There's a 5% chance that she wouldn't even need the surgery, however, and we are praying for that! Please pray that the casting/bracing would work very well.

5. Nursing - She's not latching so Suzanne is pumping and we're syringe feeding her. She has still not reached her birth weight though. The heart specialist seems especially concerned she put on weight. We feel pulled in different directions on pushing volume for weight gain and working on getting her to breastfeed where volume is unknown.

3. For help in the house - we have a helps calendar that looks pretty empty for October. Please pray that people would sign up so that Suzanne has some desperately needed reinforcements!

4. For Ethan - That he would have the strength to do well at work and well at home, for patience, kindness, and generosity with Suzanne and the kids. For Jesus to be powerfully present in our family as we struggle through this.

5. For us (Ethan & Suzanne) - This all definitely takes its toll on a couple. Please pray for protection from attacks, for honesty clothed in kindness, and the strength to give to each other when we feel we have nothing left to give. Pray we'd see the light at the end of the tunnel. :)

     Also, we have been so blessed to have care over the summer so that we could attend Midweek every week. We would love to continue going so please pray that we can find someone on a more regular basis so we're not searching each week for coverage.

6. For Morgan & Sean - They're being troopers, but it's really hard on them, too. Pray that they feel the love from us extra deeply so that the times we can't play/be with them are easier to bear.

There are of course many things we're grateful for:

Suzanne's parents have been super helpful and have been watching kids, fixing things, cooking, laundry, dishes, shopping. It's been awesome.

Friends have been hosting her parents so they can get good sleep.
Morgan and Sean play fairly well together and even by themselves so they don't always have to be entertained.
Kylie has been sleeping well at night (although tricky keeping her awake enough for a middle of the night feeding) but at least we're not up all night trying to comfort her.
The morning's and evening are cooler letting the kids get outside to play a little, even if just on our patio.
We have been so blessed and are beyond grateful for the food that's been dropped off and people who have sent money and gift cards for our current needs.

Thank you all again so much -- we couldn't do this without you!!!

Much love,

Ethan, Suzanne, Morgan, Sean, & Kylie

Kylie in her jaundice blanket. She looks like a June Bug

Kylie and her beautiful club foot

A present from our Mosaic tribe. The future IS full of hope.

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

The calendar our dear friends set up is Lotsa Helping Hands and has an app.

The LA Kids Consignment sale I love here in LA is twice a year in 4 locations.