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Leah Jeanelle’s Story

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 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!

Latest Journal Update

Llama Leah is 6!

6! Six? At noon, six years ago today, our not-so-healthy, blue baby burst forth into this world. Have you enjoyed this roller coaster ride? :) Leah sits willingly in the front car with her arms in the air and a huge smile on her face. While the rest of us, every now and then, grab onto the handlebars and scream “make it stop!!!” Not her. Full throttle. All the time.

So she’s a kindergartner now. I’m sure Facebook cued you in. Guilty. :) People ask if I'm sad she started full-time school. Not a chance. Wait. Let me explain. You see, when my boys started, I was absolutely the weepy mom pulling away in the mini-van. But then it was Leah’s turn. LEAH’s turn. I realized this isn’t about me. Never was. She is a gift and warrior and survivor all wrapped up in a girl who doesn’t need her mother to cry when she walks in the building. She earned this spot, baby. Go take it.

School is evening itself out finally. She still has her tough days but the good days outnumber those. She has an IEP (a special education plan) that specifically outlines her academic and behavioral needs. She has an outstanding, seasoned teacher plus an aid who fits Leah’s personality perfectly. She is also supported by the warmest special ed teacher, a knockout speech therapist, and an attentive nurse. All bundled up by a principal and an entire school who have gone out of their way to retrofit a perfect plan for Leah. And it wasn’t easy. She isn’t easy. You can’t cram her into a mold. She has unique challenges laid out before her that sometimes fade into the crowd and sometimes blast you with their boldness. In one fine day she can be cuddly, sweet, clever, irrational, temperamental, funny, confused, strong, weak, tired, fast, intense, angry, awkward, odd, playful…lovable. Leah.

The latest medical news is, well, hardly newsworthy. There’s news. But it’ll just confuse everyone because it still confuses me. Ever since her pacemaker surgery last December, she has been in and out of trouble. By trouble I mean acute dilated cardiomyopathy. Punch you in the gut kind of news. CHD kids do not get this added to their plate! (insert months of praying, reading, questioning, possibly using dirty swear words…)

She sees her doctors every couple of months and they keep close tabs on her. I love them. She loves them. We make a good team. She remains on the enalapril (a heart failure med) because they took her off it for a month this summer and bam! Her heart (specifically her left ventricle…the most important pumping chamber) doubled in size...AGAIN! Her mitral valve has moderate-severe regurgitation, her ejection fraction is bordering on low and her pacemaker needs to fire 100% of the time. And that’s just a snapshot of what’s going on inside her. There’s potential intervention plans but nothing worth talking about here. Yet. Physically she does decent. Zero endurance but give her a chance at short bursts of work and she’ll show you up. Flips into the pool. Got it. Goofy jumps off the boat. Done a million times. Tricks on the trapeze bar. Endless. But get her to walk around the block. Her heavy breathing will stop a passerby in their tracks. A bike ride. I’m most likely carrying both home. But don’t worry about her. I do that enough but then I soften my heart and remember where to lay down my weary burdens.

So today we only sing praise and wish a happy birthday to my radiant 6-year-old. You are a gift who reminds me how to love the Giver…to really get in His presence and be in awe. I am thankful for every downhill thrill, every steep climb up, every jolting turn, every catch-your-breath-and-just-even-out spot. I am thankful for this ride and I will gladly sit up front with you.

Love, Llama Mama

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Comments

11 Comments

Maureen Tuggle
By
Happy Birthday, Leah! All the best to you and your amazing family!
John Pernasilice
By John Pernasilice
Joyous occasion! Phenomenal post! <3 The Prayers will never stop!
Katy Berglund
By Katy Berglund
Happy birthday, awesome Leah!
toni rasmussen
By Toni Spruell and Family
Happy birthday, Leah!!!!
toni rasmussen
By Toni Spruell and Family
Happy birthday, Leah!!!!
Amy Doyle Savage
By Amy Doyle Savage
Happy Birthday Leah! We were graced with her smile as she danced through Fareway on Saturday. I thanked God for her and her story, thank you Jodie for sharing her with all of us. I have prayed for Leah and will continue to pray for your very special girl!
Al  Sorenson
By — last edited
Happy 6th Birthday Leah!!!! She is an amazing little girl with an even more amazing Momma!
Susan Teas
By Susan Teas
Continue to enjoy the ride while treasuring the journey! And thanks for sharing with your joy-filled spectators who are lined up beside you on the "parade" route of life!
Heidi Maiefski
By Heidi Maiefski
I love Leah's endless smile and fun personality! She is certainly a fighter, and you, Jodi, the perfect mom to cheer her on!!! Happy Birthday, Leah!
Cindy Windsor
By Cindy Windsor
Happiest new year to your energetic and loveable and amazingly unique SIX year old!