Wednesday, June 28, 2017

Hello and Welcome!

Hello, and welcome to! We are so grateful that you're here. This is a place where we can share updates on our sweet Ramona and keep you informed about specific ways you can lift her up in prayer.

For starters, I'll share Ramona's story for those who haven't already heard it or who want more details. (This is the long version. Get the Cliff Notes in the "Meet Ramona" tab at the top.) Ramona was born on December 3, 2016, and was greeted by the most beautiful snowfall. Other than a broken collar bone, she seemed absolutely perfect from her dark hair all the way to her tiny toes (which big sister was OBSESSED with). 

She seriously could NOT leave sister's feet alone.

Our only concern when Ramona was born was whether or not big sister would like her, and Daisy quickly put us at ease as she became instantly obsessed with her. I think it really was love at first sight. There was nothing about Ramona that made us think she was sick. For the first 6 months, life as a family of 4 was just what you would expect - exhausting, hilarious, hard, joyful, challenging, and wonderful. I mean, come on, just look at these two cutie pies:

First Christmas!

She wanted to hold Ramona and kept yelling "Meer! Meer!"
(Which means "Come here!") Ramona didn't listen. :)

Okay, okay. I digress. We had been taking the girls to our family practice doctor, but decided to switch and take them to a pediatrician. Our first appointment at the new office was for Ramona's 6 month Child Well Check on June 5. We were seen by a nurse practitioner who asked me, "Has anyone ever mentioned that Ramona has a heart murmur?" (Nope.) She said it's common for a child to have a heart murmur, especially when they are very young, and have it resolve itself, but, since Ramona also had one other symptom (getting reeeally sweaty while she nurses), she said we should take her to a cardiologist at the Children's Hospital at OSF to get it checked just in case. (Never ever ever did it occur to us that the sweating could be a sign that something was wrong. We thought she just ran hot.)

Our appointment with the pediatric cardiologist was the next week on June 15. While we were there, the doctor listened to Ramona's heart and had an EKG and echocardiogram done. After those had been reviewed, the doctor came back in and told us that, "Her heart is not normal." She said that she has Hypertrophic Cardiomyopathy, which means that the muscles of her heart are too thick and will continue to thicken. In our case, the muscles on the left heart are especially thick to the point it has eliminated part of the cavity, which leaves her very little room to pull in and push out blood. It's the same family of disease that they find when an athlete dies in the middle of a game only to have it discovered later that they had an undiagnosed heart condition. It sounds like Ramona's was easy to spot at a young age because it's pretty thick for how very young she is. The "good news" was that the valve leading out of the heart is not obstructed at all yet, though that will likely happen at some point as the muscle continues to thicken. 

A happy patient. She was a champ through all her tests during her appointment and hospital stay.

So, Nathan's first question was, of course, "How do we fix it?" The doctor paused...long enough for us to know the answer before she said "We don't." They immediately admitted us to the hospital so they could do more tests and start her on a medicine that will make her heart beat more slowly so it has a chance to take in as much blood as possible with each beat. We stayed 24 hours so they could monitor her heart and figure out the right medicine and dosage, and then we headed home (for now). They weren't sure if, in the long run, we would be able to care for her from home or if she would end up needing to stay at the hospital, but at least we're home for now. 

Cage baby.

Daisy was soooo good during that crazy day.

Hypertrophic Cardiomyopathy is a genetic disease, and they are doing tests to try to pinpoint the exact cause (even the exact gene if they can), but some of those tests take over a month to come back. Once they've gathered all the information they can, the doctors will be more equipped to make a plan. We will most likely be looking at a heart transplant. We don't know when that would be (probably not this year), but they said the younger the person is, the more likely it is to be a success. Even with a transplant she wouldn't be cured, but it would hopefully extend her life several years (there is a 50% chance of surviving 13 years).

They say it is unusual for a baby with a heart like Ramona's to look completely healthy on the outside and have no other illnesses or obvious physical symptoms. Usually they look like sick babies who aren't thriving well or have other health issues. I don't know if that's a good thing or a bad thing. Since this is a genetic disease, there was a chance Daisy could have it, too. She had an appointment with our pediatrician yesterday, and afterwards they said they have NO concerns about Daisy. I think they will probably do an echo at the Children's Hospital at some point just to make extra sure. Since we would never have guessed that Ramona was sick, I will gladly welcome an "extra sure" check on Daisy.

Ramona is still acting like her sweet, easy-going, toy-loving self. Between that and being back at home, it almost seems like everything is fine. We won't really have a plan until they get the rest of her tests back. In the mean time, we wait. Ugh. We will also have extra doctor visits to keep an eye on her heart. We are supposed to basically go on with life as normal for the next few weeks. There are no restrictions on what Ramona can do right now, so we're trying to cram in all the special things we can just in case we end up trapped in the hospital soon. An extra dip in the pool, a trip to the movies (which I know she doesn't care about, but it's a fun sister thing for Daisy), and anything else we can squeeze in. I told Nathan we need to go to the zoo ASAP because she loves to see dogs and cats and I want her to get to see other animals. :) 

We really don't know much at all right now. And waiting while not knowing stinks. We're headed back to the Cardiologist on Thursday, so hopefully we'll learn more as we continue to observe her heart and talk with her doctors. And we'll wait because we must. (Ugh again.)

Trying to do all the special things we can! Here's her first splash in a lake! We need to plan a zoo trip ASAP.

Look Ma! No hands!

 So, how can you pray right now? Soooooo many ways:
  - Healing for Ramona
  - Rest for all of us (we're pooped)
  - Wisdom and skill for all of our doctors and nurses

  - Peace for Daisy, as it's hard for her when we're gone more or need to give Ramona extra attention.
  - Peace for us as we wait for results and face uncertain days
  - Endurance and strength for Ramona through all of the potential doctor visits, test, etc to come
  - That our girls will grow know God's love and promises no matter what may come
  - That, somehow, God is glorified through all of this

Thank you so much for lifting our girl and our family in prayer!

"The Lord is my strength and my shield;

my heart trusts in him, and he helps me.

My heart leaps for joy,
and with my song I praise him."

Psalm 28:7

Officially 1A

  Tie-dye projects As of Friday night, Ramona is officially on the 1A (highest priority) transplant list. There’s not much to update on othe...