Leah Jeanelle’s Story

Site created on July 22, 2008

Welcome to our CaringBridge site. We created these pages to keep you updated about our baby girl, Leah Jeanelle Flannery, born Sept 22, 2008. Please read her background story to acquaint yourself with our pregnancy journey. We will continue to post journal entries and photos as our story evolves. Blessed are we to have such heartfelt, prayerful commitment from people like you.

BACKGROUND STORY: 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 a doctor 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. Becker of Pediatric Cardiology. 9 defects. Such severe anomalies. 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 dilated corornary sinus had essentially 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!

Newest Update

Journal entry by Jodi Flannery

Well, friends. I’m feeling like a wrap-up is in order. For you, at least. CHD never ever wraps-up for us but we most certainly enjoy when it can take a backseat every now and then.

So right out of the gate I need to say THANK YOU! My formal thank-yous are late and unorganized and literally a heap of cards and post-it notes that Dan and I have been adding to over the last couple months in our attempts to keep up with the incredible generosity of Team Heal Leah. I’ve been terrible at correspondence but please please trust that every reach, whether digital or material, has been felt and counted and purposed. Your individual ways of showing love and support has added to the collective fuel that got us to this point.

This point. Gosh. Are we REALLY on the other side of this? Pinch me, please. Last week we had our big cardiology appointment with Dr B. The echocardiogram. The x-ray. The heart function test. The talk. (Ok, you guys will be relieved to know that I just deleted an entire paragraph of mumbo-jumbo, pre-appointment emotional anticipation. You’re welcome.) So here goes with the straight talk. Her heart looks SO GOOD! Actually...ehem...in the never before spoken words of our doctor “Excellent. We got exactly what we needed and hoped for out of this surgery.” That’s it, you guys. Let’s just rest right here. All the other parts of our conversation...the medications, the hypotheticals, our silly questions...don’t sweat it. We'll keep that ball in our court. Rather keep reading the word “excellent”. We walked out of the clinic and Dan put his arm around me and joked “we’ve been waiting 8 years for that report”. 8 years. Oh man, the rest of that day was so light and fun and worthy of celebration!

Now does this mean her heart is all good to go forever and ever. Shoot, no. CHD goes on and on and on. She’s got an artificial valve and a pacemaker/defibrillator plus 3 medications that probably aren't going anywhere. Gotta keep this shiny new function protected. But this surgery. This was a big one. Really big. She probably won't ever need a surgery this complex ever again. We hope. Her brilliant team planned seamlessly across hospitals which allowed January 6th to be executed beautifully and efficiently. We are forever grateful and have added a new anniversary to our calendar. 

So how is Leah doing? Like the whole-person Leah? Pretty dang fantastic. I’ll admit there were hard days when I thought "This has changed her. She’s scared and nervous and overwhelmed and FED UP.” But here she is just 5 weeks out and she bounced right into school this morning ready and willing to tackle her big days with a “See ya later, Llama Mama” and a smile on her face. And that attitude right there...we give thanks for it every single day because listen, school is HARD for her. Being Leah is not a cake walk. But God love that child, she pushes through her overloaded brain and body because she wants more than anything to be a learner and a friend and just a regular ol' kid. So we take her lead and fuel her fire and bury the “wish it were easier” envy that sometimes grips our own hearts. The life of raising Leah and her unique whole-self. She awakens me. Gosh, I'm writing this with a lump in my throat because I miss her terribly and she's just at school. Goodness, Jodi! Get a grip! ;) I am so so happy for this child! 

So we plan to sign off for a while as we settle back into our new normal but you all...Team Heal Leah...we carry you with us and promise to spread your service and goodness in every part of our days. Thank you for everything.

~ Jodi, Dan, Joe, Tommy, Leah (and every Boll and every Flannery that has been lifted up by your love, as well).  


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