I started writing this post 3 weeks ago and just worked up the courage to share it today. Please keep my sweet firstborn in prayer when you think of her.
How do you handle it when you’re going through a rough time?
Do you share with everyone, rallying the troops behind you for support?
Do you keep it to yourself?
Do you share with a select few for support and encouragement?
Generally, I’ll keep things to myself (and my husband) for a short time, let my select few know so they can rally alongside us for the long haul, and then when the trial is over, I’ll share it with the masses – hoping to encourage others by showing how God took care of us during the difficult time.
This time seems a little different. As I started writing this, I was feeling like I’d publish in the next day or two, but the thought of that feels so raw and exposed. So vulnerable.
You see, right now, we are vulnerable. Afraid. And, I’m just not sure I can expose that to the world right now.
Back in mid-July, we had just gotten back from a spontaneous trip to Niagara Falls and all of us had come down with a little illness. Nothing major – but no one felt awesome. I ended up taking my oldest daughter to the doctor for a concerning rash (which ended up being nothing). While at the doctor’s office, the nurse practitioner was listening to my sweet girl’s heart for an uncomfortable amount of time.
As I sat there, concerned on the inside but not wanting my daughter to be nervous, I waited until she finished the exam, and went back to listen to her heart a second time.
Finally, I asked, “Is her heart okay?”
The nurse practitioner told me she was hearing a heart murmur and asked if we’d ever been told she had one.
My own heart in my throat, I answered, “No, never.”
After calling the doctor in to hear it, there was very little concern. They told me these things can pop up during a fever or dehydration (remember, she’d been ill) and end up being nothing the vast majority of the time.
We waited a long week to have her re-checked. My always-calm doctor was visibly concerned this time. He let us know that her murmur was too loud and atypical. (meaning it didn’t sound like the normal, innocent heart murmurs that so many children have.) His office set us up with a cardiologist at Children’s Hospital a week later.
The cardiologist gave us some hope that it could still be nothing to worry about. Her EKG and X-Rays were normal, and other than the new murmur, she was and is asymptomatic. Thank God on all three counts. However, we had to wait another week on physical restriction (and an hour long drive away) to get her an echocardiogram to be sure.
The staff at Children’s is incredible. I have to say that. As a mom however, watching the black and white image of my little girl’s heart, knowing that something was definitely not right on that screen, I was sick to my stomach. Our chatty tech got very quiet and there was an uneasy feeling in the room.
That sweet technician sent a text message to the cardiologist right then and there. He responded immediately, asking for my cellphone number, and told the tech to tell me he would look right away and call me soon. Good and bad. You know – there’s no rush when everything is fine.
Within 10 minutes, as we were making the journey back home, my phone rang and right there on the highway, with my little girl sitting next to me, the cardiologist told me that my daughter has a congenital heart defect that has gone undiagnosed for 12 years.
My brain clicked into survival mode as the doctor explained that all babies have an extra blood vessel in the heart that closes at birth, or a short time later. Hers did not. It’s called Patent Ductus Arteriosus. So, to put it simply, she has a 5 mm hole in her heart pumping oxygenated blood into an area where un-oxygenated blood should be, thus mixing the two. It also pumps extra blood into her lungs. This can cause the heart to work too hard which can lead to serious problems. Thankfully, hers is currently functioning well, but the hole needs to be closed.
He believed and hoped that her issue was small enough to be closed in the catheterization lab instead of with open heart surgery, but he had to send her test results to the cardiologists who specialize in this condition and repair for them to make that decision.
A week and a half (and many passive aggressive phone calls later), we finally received a call from scheduling stating that her procedure could be repaired in the cath lab (Thank God!) and we were able to schedule it for about a month later.
So now, we sit here days away – in some sort of limbo. My beautiful daughter, excited to start middle school, going through all sorts of transitions into young adulthood, bravely facing this trial. She’s afraid. We’re afraid. She knows the details. She asks questions. We answer them. She cries. We cry too. Controlling the fears is easier said than done.
This procedure has an extremely high success rate. She should have a fast recovery, no further issues, and no repercussions for the rest of her life. Her heart should be completely healed in about 6 months. She will need routine checks decreasing over time for the rest of her childhood. Her physical restrictions will last for about a month.
One thing we do know. God is in control and He is good. We are so thankful for the people in our lives who love us. We believe that prayer works. It already has in so many ways. Comfort. Peace. Hannah’s heart is functioning well! It is a miracle that this has been discovered before any more serious complications could arise.
She will be going into the hospital to have the procedure done later this week. It should take 2-4 hours to complete (the longest 2-4 hours of my life) and then she’ll need to lay flat for 6 hours. They will run tests shortly after that to make sure everything is functioning as it should.
Will you pray with us for our girl and a completely successful procedure? We have been surviving off of the prayers of loved ones and it has made a huge impact on our family.
Thank you for walking this journey with us. We look forward to sharing God’s continued faithfulness with you very soon.
Before I go, can I encourage you today? Whatever you are wading through, however deep you are – you’re going to make it. Just because you can’t see the light at the end of the tunnel, it doesn’t mean it’s not there. Just because you feel like you are not in control, it doesn’t mean that God has forgotten you. You can rest knowing that he’s working even when you are stuck. We can’t always see the “whys” and “hows” as we wade through deep waters, but we can rest assured that:
He works all things for the good of those who love him. Romans 8:28
He knows the plans he has for you, to prosper and not to harm you, to give you a hope and a future. Jeremiah 29:11
We can lie down and sleep in peace for God will keep us safe. Psalm 4:8
He is good. Psalm 136:1
Life isn’t always easy, but He’s got you. You are not lost. I would love to pray for you too. Please let me know how I can best pray for and encourage you.