A couple of months ago, we joined a support group on Facebook for Intermountain Healing Hearts. It’s connected me to a whole new world I really didn’t know existed. We’ve spent 19 years doing this without any other heart families for support, and it’s like I’ve hit the jackpot with people who are going through the same kinds of things we are. (Most of their kids are much younger than Sarah, so they also appreciate my more experienced perspective.) I get messages in my inbox every day celebrating homecomings and milestones for tiny heart heroes. There are also questions, setbacks, frustrations and pleas for prayer for other struggling heart heroes. I’ve spent a lot of time reading blogs and stories of kids that are so amazing that it blows my mind, and so very sad that my heart literally breaks. I’ve made new friends that I’ve never met, but can’t wait to. I’ve connected with total strangers through my tears in messages written just for me of how to cope, and filling me with hope and prayers for my sweet daughter and family. When Sarah was in CICU last month, two of these amazing women came to visit us. They brought us a little care package of hospital survival stuff and a meal card for the cafeteria. We talked for a while, laughed, and parted with hugs. This new heart family I’ve found has been a blessing.

And the other night, as I lay awake thinking about two sweet heart angels who returned to their Heavenly Father just last week, I wondered how good it is for me to be so immersed in this new world of mine. Is too much of a good thing… bad? I mentioned this to Steve, and after some thought, he said, “a glass of water is really good for you, but you wouldn’t drink a swimming pool.” Um… For starters, pools are full of yucky chemicals…. But yeah, I got his point. Even too much chocolate would probably make me sick. I think sometimes my mind dwells on the sad and worrisome things too much, and in this world of heart babies, there is plenty of sadness and suffering. Unfortunately, not much can be done from my end to relieve it. But, there are also so many incredible miracles and blessings to witness. So I have become a part of this heart family (with much gratitude that we found them, for I need their love and support, too!). I know it is through compassion and prayer on others’ behalf that they are blessed and comforted. I will do what I can to help them through my positive encouragement, faith and prayers, but try diligently to remain focused on my own heart “baby” and the many miracles and blessings that surround her life. In that balance, I hope that this connection to so many incredibly strong heart moms will bless my life, and I can bless theirs, too!

~Julia

Just wanted to take a few minutes to catch you up on what’s happened and how things are going since Sarah was released from the hospital. First, though, I wanted to attempt to express our gratitude for your love, concern and prayers for her and our family. We appreciate your phone calls, emails, texts and visits; your desire to “do anything” to help us; and your never-ending faith-filled prayers on our behalf. We are so blessed to have such supportive and caring extended family and friends.

Physically, Sarah is doing pretty well. She has some nausea most mornings, and is pretty tired and worn out, but her protein levels have improved (without another albumen infusion) and other lab results indicate that she’s responding well to the milrinone (new heart medicine that helps her heart pump and relax more effectively). At our appointment last Thursday, the cardiologists were very pleased with her progress and how she looked. She even got a little feisty about the oxygen use during the day (she and I have a difference of opinion on what the doctors wanted here), and they were thrilled with her assertiveness.

Emotionally, I’m not really sure where she is… she seems content and patient in her struggles, but I can tell some of her “spirit” has been zapped. Whether it’s the physical effects of the heart failure, or the emotional effects of being on “house arrest”, having an IV as a constant companion, and becoming a “human pincushion”, she seems quieter and more reflective than before the call. I know without a doubt, she’s overwhelmed and scared and frustrated and tired all at once, but she’s also (because of her incredible attitude) trying so hard to be positive, grateful, optimistic and happy. She had a good visit with her counselor yesterday, so hopefully that almost weekly non-relative outlet will help her. Phone calls, Facebook posts, and text/email messages totally brighten her otherwise boring and lonely days. She also has a Skype account if anyone wants to “visit” her.

The rest of us are coping. Steve and I had a good talk and figured out some things about our unknown future and set some goals and plans to help us cope better…together. We’re striving to get through this whole thing faithfully and triumphantly, with our family relationships still strong. I was driving myself (and everyone else) crazy trying to figure out how to prepare for every possible scenario, and Steve brought me back to the present and hugged the worries and fears out of me. He reminded me that even before she was born I was promised in a sacred moment of prayer that it would “be ok.” (Sure love him.) So we’re recommitted to focusing on gratitude and blessings and feeding our faith. Oh, and hugging more, and taking care of the things we CAN control. Sarah helped me make some packing lists and we’re working on “just in case” plans with neighbors and friends so when we get the call again, we can focus a little better on the tasks at hand. The other kids seem to be okay with all the unknowns and changes, now that we’re all home together again. We’ve started to settle into our routine and our new “normal” with changing IV fluids and pumps, daily vitals and shots (I still haven’t been able to give), and sanitizing at every turn. We feel very confident that when the time comes, these new things will have made her stronger and more prepared for what her body will have to endure. We know without a doubt that Heavenly Father is in charge of this, and everything will “be ok”.

We know that many of you struggled after the last call because you wanted to be with us to hug us and help lift our burdens. We felt your love and know your prayers are what got us through that emotional time. We really don’t know what we will need, but will definitely let you know when we figure it out. In the meantime, even if we say we’re fine, act on the promptings you receive. The Lord knows much better what we need than we do, and I’m sure it will be exactly what we need, when we need it most. We appreciate your love and support and know that we will not make it through this without our dear family. We love you so much and are so grateful that you’re ours!

~ Julia

P.S.  Happy Valentine’s Day!

 

I added a few notes to this post… I saw them on another heart mom’s blog and loved her thoughts in supporting CHD Awareness week. She said I could share… Most of these thoughts are hers. (You can click here to visit her blog post and meet her darling son, Owen. ) These are simple things you can do to help support kids born with CHD and raise awareness in your families and communities.

• Donate Blood – Kids like Sarah receive a lot of blood transfusions and blood products throughout their lives. You could organize a blood drive at work or in your community, or simply donate yourself.
• Pulse Ox Testing – If you (or someone you love) are expecting, please ask for a simple non-invasive pulse ox test for your newborn baby at the hospital. This can be an early indicator of a heart defect in your infant. Because it saves lives, some states are now mandating pulse ox testing of newborns.
• Sports Physicals – This isn’t discussed much, but I know we’ve all heard the sad stories of young, active athletes that collapse in the middle of a game, often because of an unknown heart defect. If you have concerns, you can request an ECG in addition to your child’s sports physical, and often times this could show if something is wrong with your child’s heart.
• Organ Donation – This one is so very dear to our hearts right now… If you are not an organ donor, please think about it. One organ and tissue donor can affect the lives of up to 50 others. Talk about it with your family and friends. Make your wishes known to your loved ones. You can click here to register.
• Raise Awareness – All of Sarah’s life, I’ve tried to explain to people in ways they can understand about CHDs, specifically Sarah’s. I haven’t been super active in this until lately, as I didn’t realize how many more kids there were out there like her. The hard part about CHDs is that even though they affect so many children, people just don’t understand that most of the time, even after surgery #5, their hearts aren’t really “fixed”. We need to talk about it. Really, it’s good for me. Ask questions, and don’t be afraid to share what you learn with others. To my knowledge, there are no celebrity endorsers for CHDs, no major events to raise funds, and no big funding source for CHD research and advancements. You probably won’t hear any big news stories, or read about a pharmaceutical company that has a new drug to fix a broken heart. There is no cure. So, as Owen’s mom so beautifully said, “as heart moms, we are doing what we can to support each other and pray that our doctors continue to find surgical advancements to improve the quality of life for our kids.”

Thank you for praying for Sarah, and for other kids like her. There are so many amazing heart heroes out there, living life to its fullest, and taking their struggles in stride. There are also a lot of parents with empty arms that were once filled with sweet little warriors of their own. CHDs affect lives. You can, too.

~Julia

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At Primary Children’s there are so many things for patients, parents, and families to do to stay distracted and happy. A few of the things that have helped me are: games/puzzles from the playroom, meditation, aroma therapy, pediatric acupuncture, breathing exercises, movies, walks, counseling, a visit from Rainbow Kids, and there are a ton more!! I recently had the chance to have Music Therapy come visit once a day. The girl that came was named Amanda. (I think there are four or five girls.) They are FANTASTIC!!! The first day she came, I was in the ICU being sad and depressed (it probably didn’t help that I did have a migraine…). We got to know each other and then we started singing. It was a total blast! 😀 My emotions were completely flipped. Amanda came everyday, except on Saturday and Sunday. I think I went crazy without Amanda during the weekend. During her visits, Amanda and I sang, laughed, listened/looked up music, and wrote a song. It was the first song I had ever written! (Wanna hear it? If you click the little play button under the picture, it will play the song we wrote..) I highly recommend anyone stays or knows someone who is staying at Primary’s to ask for Music Therapy! I really enjoyed her visits and look forward to future hosptital stays. Wait a second…did I just say what I thought I said…?!