During a routine 16-week prenatal appointment, a deathly slow heartbeat was discovered (70 bpm). We were immediately sent to Des Moines Mercy where we met with Dr. Joseph Hwang and team from the Perinatal Center of Iowa. He confirmed a very serious heart defect. We were completely overwhelmed and devastated. Three weeks later we had our first appointment with Dr. Thomas Becker of Pediatric Cardiology. 9 defects. Such severe anomalies that we instantly became a complicated case. She was safest in my womb which would keep her alive into later pregnancy but not much further if her heart rate stayed so critically low. If she did survive the pregnancy, the chances of her successfully transitioning into life with breath was minimal. Because of her structural and venous defects, surgical repair was complex and risky. Confused, scared, cheated, angry, hopeless. We battled for days in a scary place where God seemed so far away. But He found us again and forced us to talk, to pray, to surrender. Our family, friends, and church reached us through unconditional and amazing support that lifted us to a place of balanced faith and realism. She was our daughter and we were blessed just to carry her in pregnancy. She was living with us, moving within my womb. She deserved God's path, too. Our summer went on as normal as could be. Joe (4) and Tommy (2) were full of active curiosity and innocently demanded our full attention. We made it through several more appointments, met with a hospice team and bereavement counselors, and continued to pray along with the hundreds of others who included us in their daily prayers. We just asked God for a chance to meet her. Hold her. Keep her comfortable until He would choose to take her home. Of course we would fight, but that's all we asked. And then July 25 happened. The doctors expected the left side of her heart (specifically the left ventricle...the strongest, most important pumping chamber) to weaken to a point where it would essentially not function (hypoplastic left heart syndrome). Rather her heartbeat was up (from a consistently low 70 up to a safe 130 bpm) and the left side of her heart was strong! Her dialated corornary sinus had esentially moved and allowed her heart to grow! Completely unexpected! Her growth is right on schedule and the rest of her body is developing perfectly! Leah still suffers severe heart complications, but the prognosis is full of hope. So now we will deliver her and after a BT shunt installation (open heart surgery) and a few short weeks in the Mercy PICU, we will bring her home! Bring her home and grow our little fighter so she can undergo a major repair surgery sometime in the early months of life. But a repair that has a high success rate and a chance for a long, normal life. We are on our knees and offer our thankful hearts to the Lord!
Dec 4, 2013 9:17pm
Hello CaringBridge. Greetings from post-op. Sorry to those of you not on Facebook because I’ve been cheating with quick updates over the last couple days. Mostly because I’m pooped. This is the first time I’ve actually loaded up my laptop. And I don’t know how much gas I have left. So let me break it down before my head hits the pillow (and I use that word very loosely…I think my next hospital donation will be parent pillows…who’s with me?).
Dr. Hockmuth knocked the surgery out of the park! The longest part of the surgery was dissecting her heart’s scar tissue from her sternum wire. Did I gross you out? Sorry. I’m totally desensitized anymore. I find all the details just fascinating and miraculous. He made two incisions. A horizontal cut in her upper right abdomen that holds the pulse generator. The second starts right under her breast bone and goes down 3 inches or so. This allowed him to make way for the four electrical leads that run from the pulse generator to her right atrium and her ventricles. No sternotomy (reopening her sternum…was that one hard to hear? I agree. But it didn’t happen, so YES!)
Our family only sat in the waiting room for a total of four hours. Not bad, huh? And it was a little surreal how peaceful it was. Like we’d done this before. ;) And no doubt we were being lifted up in all your prayers. Dan and I got to her around 11am. And then she started puking. Ugh. Day one was tough. Tougher than we were ready for. Pretty sure we tallied up 30 barfs (sorry, I had to throw that one in for Tommy, my 7yo. According to him, Leah must have been really sick because there’s a sick-o-meter that ranges from throw-up, to puke, to barf. Barf’s the worst. Did you know that? Fascinating second grade knowledge). She was in a lot of pain, running low fevers, and consumed by nausea. By 9pm a new anti-nausea cocktail was ordered and we put that run to rest. And then guess what that stinker did? She slept. All night! She opened her eyes when our nurse would come in for vitals and meds…but otherwise she barely moved. Okay, so yes, she was drugged and exhausted, but I’m just going to say it was lovely and unexpected and had to have a least something to do with her newly paced heart. Overnight she was paced at 80 (couldn’t go lower).Do you guys know she’s been sitting in the low 40’s at night? Crazy. I bet that sweet, stable pace had to feel amazing to her sleep deprived little self. At least that's my mom-theory.
And then we woke this morning. Some smiles. A tiny little appetite. And then it faded quick. Second days are always better than first days, but new challenges replace old. So now instead of holding her hair back and lifting her newly operated-on chest so she can vomit over and over…well, now we’ve got a deliriously frustrated child who could care less about the great hospital movie selection. But we manage. And family visitors and fun gifts from Leah-fans take the edge off for a while, too.
All that being said. And that was a lot, wasn’t it? I think (fingers crossed) that we might make it home TOMORROW. In order to make that happen we pray that she continues to bust through this pain. She’s moving slow. But she decided this afternoon that she wanted to walk. We’ve taken a few short trips. She needs a few more. We also pray that she keeps taking fluids and food. Her IV-drip was turned off this afternoon and since then not a drop of pee. She’s drinking on her own. But clearly not enough.
I know everyone has questions about how the pacemaker will work specific to her conduction needs. I can tell you, I’m not ready to write about it. It’s confusing. And not entirely set in stone. The Medtronics rep was in the OR and has visited bedside twice to run tests and pull data. He’s in quick contact with her doctors while they work to identify the ideal settings. Right now, much to everyone’s surprise, BOTH her atrium and her ventricles are being paced. The atrial pace doesn’t let her get to low and keeps the impulse generating from the right place. The ventricle pace keeps her from dropping beats as she tries to increase her heart rate. We have appointments coming up soon. Perhaps they’re worthy of another CB post. We’ll see. For now we just rejoice in a successful surgery and the extra efficiency and safety this pacemaker will bring to her fighting little heart.
Thank you, Jesus, for this life force of followers that are Team Heal Leah. And thank you for the deep, trusted connection we have to our Mercy surgery and pediatric ICU family. May sharing her story bring continuous glory to your mighty, merciful works.
Now, did I say something about a pillow?
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