It was November 18, 2013, and my husband, Matt, and I were getting an ultrasound on our unborn baby.
“It’s another girl!” the technician bubbled. “But I’m getting some more measurements.” While she continued studying our growing baby, Matt and I shot joyous glances at each other.
“I’m still looking for one thing. I’m going to grab another tech to see if she can help me.” With that announcement, we should’ve seen it coming.
The other tech entered. A few whispers were shared. Then they both nodded.
We talked with our doctor about how happy we were that it was another girl. But he had other things to discuss. “I’m sorry. Something’s not right with your baby. It’s her heart. We don’t know how bad it is, but you need to find out more. Immediately.”
In shock, we walked numbly out of the busy office. In the safety of our car we cried and worried but also prayed, specifically for God’s favor on our tiny girl and for grace for us to walk whatever road was ahead.
Knowing the gender, we wanted to announce a name to friends and family at a party being thrown for us that night.
Cassedy, that was not right either.
Annie … hmm.
A quick search of name meanings confirmed our girl’s identity. Annie: prayer, favor, and grace. Our sweet second daughter would be Annie, and she was already driving us to pray for favor and grace. We could hear God whispering, “I’m in this. I have this. I have you and I have her.”
Two weeks later, a specialist told us, “She likely won’t live to be born. Should we terminate today?” In disbelief at his audacity and paralyzed by the severity of Annie’s heart deformity, I explained through hot tears that abortion would never be an option for us. “Fine then, up to you,” he said. “Let’s do a blood test to confirm. You’ll know her fate in 6-10 days … and can I offer you a Kleenex?”
Finally we were given the diagnosis: Annie had hypoplastic left heart syndrome. In layman’s terms, this means she only had half of a heart.
A meeting with a fetal cardiologist confirmed that her heart defect was life threatening and so rare that, again, we were given the option to terminate the pregnancy. Again we refused.
We were given three options: 1) comfort care, where we could try to keep Annie as comfortable as possible after birth for as long as her deformed heart could sustain life—somewhere from 12-48 hours, they estimated; 2) palliative care, in which they would reconstruct her heart in a series of three open-heart surgeries before she was 3 years old; or 3) heart transplant, where we would eerily hope that another sick baby fighting for her life lost the battle before Annie did.
We knew that we should give Annie the chance to live with the heart she was given. So we decided to let a surgeon attempt to reconstruct her heart and desperately hope that it worked. But where would we find that person who would determine the course of our child’s life? How would we?
We read books and online articles and searched for other families whose child was battling the same heart defect. And we began to understand that we could trust the One who was already holding her life and tiny heart in His hands.
In those days of waiting, worrying, and praying, God called me to begin telling Annie’s story. I felt I would rather hide in the corner and sob until we had her safely in our arms, but I did what He asked me and started a blog. What follows are snippets of our amazing journey with Annie:
December 19, 2013
My Sweet Annie Girl,
What a joy to find out we are getting another girl! But the doctors told us that there’s something wrong with your tiny heart. It doesn’t have the number of chambers it needs, and they don’t know why. Lots of really smart people are trying to figure out what to do. But Mommy knows that the Creator is still working on you, forming you delicately and gently, with love, in my womb. His strong hands have shaped the two heart chambers you do have and He can form the ones you still need. Mommy is praying, Lord, if you will, you can heal.
And Mommy knows how special your life is … no matter how long or short it may be. You, Annie, have a God-ordained purpose and Mommy is so happy to see this story unfold for God’s glory.
I desperately want to meet you someday soon, on this side of heaven, and caress your sweet cheeks and snuggle you close while your heart heals. I pray that I can sing sweetly in your ear and comfort you while you recover from a successful surgery. But if I cannot, and the Lord takes you to heaven before I get there, I know that He will snuggle me close, sing sweetly, and comfort me while my heart heals.
January 25, 2014
Some days I’m furious at myself for wanting to love Annie. Other days I dream about the life we’ll have with her, what her room will look like, what her coming home outfit will be, and how many newborn diapers we need to stock up on.
How stupid! How could I set myself up for such heartbreak?
I recently made a pact with myself: I am not going to buy Annie a single thing. No diapers. No crib décor. No maternity pictures. And I adamantly refused when a friend suggested throwing us a baby shower. No way was I going to take gifts and money for rattles and ruffles that Annie might never use.
Then today my best friend surprised me with a sparkly princess dress, size 3 months. It is Annie’s first something of her own. I cried bitter but thankful tears. She loved Annie before I was willing to and her love is giving me permission to do the same.
Today I started believing again that God knows what He is doing.
Today is the first day since her diagnosis that I thanked God for Annie’s life.
February 5, 2014
Loving Annie is easier than I thought. I am delighted by every wriggle and squirm of her growing body. Rhythmic flutters tell me that she has the hiccups often. Anytime we hear music, she dances wildly in my womb. What a sweet, real baby is forming inside of me. What harsh reality she will meet on the day she enters the world.
As a mother, this is heart-wrenching to face. I have nightmares about her lying in her NICU bed needing to the comfort only a mother can give, and I will be debilitatingly helpless. It will take everything in me to not charge in, swoop her into my arms, and whisper to her (and to myself) that everything is okay.
Yet even on those solemn days of recovery that are to come, where I will not be able to hold her in my arms, she will be in excellent care. Annie will not miss the comfort of a mother. Even better, she will be comforted with a love richer than any love that I could ever fathom for her. In those moments of helpless heartbreak that are ahead, I will sacrifice my desire to hold her and comfort her, knowing that she’s in the best place she can be. God, the powerful God who made the entire universe, will be her Comforter. And mine too.
It seems we’ll both be in good hands.
March 26, 2014
“I am a 29-year-old G2P1 lady at 37 weeks gestation. I am carrying a fetus identified to have hypoplastic left heart syndrome.”
This is the intro to the letter that Annie’s cardiologist wrote to the NICU staff for instructions about her care upon delivery.
He goes on to describe Annie: “The exam of the fetal heart today demonstrated that the anatomy is consistent with hypoplastic left heart syndrome. There is aortic valve and mitral atresia. The left atrium is small. Ascending aorta measures 2 mm.”
What in the world does any of that mean?
The next paragraph is much clearer, though, to those of us who don’t speak doctor: “The family is aware that some forms of heart defect and disease may not be diagnosable until after birth.”
But Annie is more than a list of sterile, medical descriptions! Since I’ve never introduced myself as G2P1 before, I know that there’s more than one way to describe a person. I am choosing to concentrate on how God would describe our Annie in a letter He’d write to introduce her to the blue-gloved delivery room audience she’s soon to see:
Meet Annie. She is fearfully and wonderfully made in My image. I’ve been carefully, intentionally knitting her together in her mother’s womb and have made her exactly the way I wanted to so that she will bring the most glory to Me. I know all of the days I have ordained for her. I have a specific and special purpose for her life that has already begun unfolding. She is My perfect gift from above. My works are wonderful, and meeting Annie will help you know that well.
April 10, 2014
We were told, “She will be blue when she comes out and won’t cry.”
“She will be born very small because all hypoplast babies are.”
“You’ll never get to hold her.”
Meet our Annie!
She was born Thursday, April 10, at exactly 39 weeks gestation, at 4:28 a.m. after six hours of natural, unmedicated child birth. She let us know she had arrived with the most delightful, ear-piercing wail. Her skin shone a healthy pink hue. She was seven pounds, six ounces of round cheeks, wrinkly toes, and thick dark hair.
The awaiting NICU team whisked her from my doctor’s hands into the corner of the delivery room to take stats. Because she looked so good, I got the most wonderful treasure: After nine long months of waiting and wondering, I finally got to hold her. My salty tears dripped onto her rosy cheeks as I kissed her and snuggled her and whispered softly to her of how long I’d waited for this moment and how my heart ached with love. I pressed my cheek to hers and thanked God for His perfect gift of my Annie.
But the moments were short and few. It was time to place her back into their hands. They assured us we’d see her again before she was transported to the nearby children’s hospital. In about an hour she came back through our room. Not swaddled in a cozy newborn bassinet, but tangled in wires and monitors, strapped inside an enclosed isolette, attended by a three-person uniformed med flight team. We didn’t sign paperwork asking that she be breastfed and bathed at my bedside. We signed papers that said we agreed to allow them to take whatever measures necessary to save her life.
April 12, 2014
Annie is doing better than the doctors expected for someone with her heart condition. So that we can give Annie the best chance to continue improving, our cardiology team suggested we transfer Annie to Children’s Hospital of Philadelphia (CHOP), the hospital with the world’s number one surgeon for babies like Annie.
This surgeon just happens to have an unexpected opening in his schedule for Tuesday morning. So tomorrow Annie will be transported to CHOP by jet. I’ll get to travel with her, and Matt is catching a commercial flight. We are hopeful because her surgery, recovery, and hospital time will be shortened by being there.
Even though this is not a journey we want to be on, we know that God had it planned before our time or Annie’s time began. So we rest in His continued proven faithfulness. We know that as we’ve watched Him be faithful before, He will surely be faithful this moment and the next and the next.
April 14, 2014
The med flight team intruded again with their bulky isolette that my tiny Annie was to fill. Thirty minutes of cord untangling and rewiring through countless alarms had her strapped in a bed of blankets and me frazzled beyond belief. They raced her down busy hospital hallways, while my four-day postpartum body struggled to keep step. But what hurt the most were the awkward stares and whispers from the passersby: “There’s a tiny baby in there. Lord, help them.” … “Oh girl, I’m glad that ain’t my baby.” I stared at the white tiles, blinking back stinging tears.
At the ambulance loading dock, they hoisted Annie roughly into place, and I timidly took my respective seat next to her. No seat a parent should ever have to fill. The sirens roared and off we sped to the airport. The jostling and jolting that Annie endured during that ride is far from what I read about in What to Expect …The First Month. I welcomed the loading onto our tiny plane but quickly found that the bumps had just begun. Three and a half tousled hours later the Philadelphia ground was a glorious sight. Another ambulance waited to retrieve us and again, we sped to another hospital.
The team at CHOP was waiting our arrival. So we were welcomed by a hungry mob of information-seekers, vein-prickers, and wire-replacers. Annie squalled with each flip and turn needed for the tests, and I confusedly tried to answer a million questions and think of things to ask as they briefed me on her surgery and where I would sleep and where I would pump and who to call for emergency and my parent badge and oh yes, my Social Security card to confirm they’d mobbed the right mommy. Phew! I had never been so happy to see Matt when he finally arrived several hours later!
But at the end of an eternal day where I simply breathed constant prayers for God to carry me through, I got to hold my girl.
I rocked her late into the night, singing, “He’s got our little baby Annie in His hands …” and told her how special tomorrow would be because God would use her teeny self to show how big and powerful He is.
April 15, 2014
After a restless night of hanging off opposite edges of a twin bed in the cardiology floor family house, 4 a.m. came early for Matt and me. It was time to begin this day that would change every other day that we know from now on. We held Annie again and prayed for her comfort, our comfort, but even more for God’s presence and glory.
The minutes mocked us on the screen above as our time with her grew short. The anesthesiologist came and I passed Annie once again to someone I knew could care for her better than I—a hard thing to admit as a mother. We followed Annie’s bed down the cold, gray hospital hallways walking her to the operating room. One last kiss and she was out of sight … maybe forever.
We rode the elevator to the surgeon’s conference room. He outlined the details of how he’d reconstruct our 5-day-old’s walnut-sized heart. And reminded us that a possible side effect of the surgery was death. I think I’d prefer headache.
Our nurse updated us as surgery progressed, so we waited watchfully with phones in hand, jumping at every buzz. After an hour of surgery she told us that Annie handled the anesthesia well, her chest was open, and the surgeon had begun the work on her aorta.
We waited for the next call: The technical work of the surgeon was complete, they were warming Annie’s body back up, getting her off the heart lung machine, and reinfusing her with her own blood.
And the third call: It was done. Annie was stable and on her way back to her ICU bed. The surgeon was on his way to meet us.
He said it went as smoothly as those procedures ever go. Her heart didn’t show swelling or too much bleeding, so he was even able to close her chest. A huge success!
We finally got to see her after another long hour passed. What a delight! But instead of clenching our fingers and pouting her lips, she lay still, nearly lifeless and sporting a long white patch down her chest with cords draining blood from her heart.
But she’s there. It’s Annie. Our Annie! And it’s God, our God, who is sustaining me minute by minute while my heart feels like it’ll beat out of my chest from the ache of seeing her this way.
Still, we celebrate! The surgery is behind us! She’s winning her first fight for survival and so am I.
May 15, 2014
We are still fighting for survival … in a much less heroic way though than when I was waiting to hear if my 5-day-old would live. I had no idea how hard being a mom to two kids would be. So far getting my teeth brushed each day has been as much a miracle as Annie’s speedy recovery.
Some days I pretend to be brave and capable enough to mother two kids, only to be rudely reminded by the tug of war I’m losing with my toddler over my newborn’s carrier in our pediatrician’s waiting room that I am not. I consoled myself that at least my girls were both bathed and bowed for the kind stares from the lobby audience. C’mon, like it’s never happened to you before, I wanted to shout. But instead I smiled at them, somehow won the tugging, and scooped my tantrum-throwing toddler off the doctor’s office floor just in time for my newborn’s diaper blowout.
That’s the simple reality of having two little ones. Then there’s the reality that Annie is a special baby. We’ve been thankful that she doesn’t have a single wire or monitor on her, we don’t administer a single medicine, and she hasn’t required a lot of extra care. We check her oxygen saturation each morning and weigh her each night, and that’s it.
But just because the wires aren’t there doesn’t mean the worries aren’t. Constantly, in the back (and front and side) of my mind is the unbelievable pressure of the what-ifs. The Philadelphia team was very clear: 20-30 percent of hypoplast babies die between the first and second surgeries. They clearly explained the numerous red flags to watch for. Things like Annie being overly irritable, not eating well, not having enough wet diapers in a day, being extra sleepy, having a fever, and more.
So welcome to my worry world. When she fusses in the evening during a normal newborn cranky session, my mind races. How irritable is overly irritable? When I throw her diaper in the pail and forget to mark my tally, Oh no! Was that wet number five or number six? But wait, was that one wet or just dirty?
When three hours and one second have passed since she last ate, I think, This is it. This is the extra sleepy. She’s not eating well. Here comes the feeding tube. And Annie is not supposed to cry for long. Her face flushes from light pink to grey blue when we’ve had to actually tend to our older daughter, Audrey, for a minute, or drive somewhere, or heaven forbid, set her down to go to the bathroom or lay her in her own bed at night. It’s impossible to ensure that a newborn doesn’t cry! And impossible not to worry when ours does!
They said that sometimes “heart moms” need medicine, too, because it’s all so overwhelming. Sign me up for the highest dose!
I am thrilled that this is our life. That we have two precious, lovely daughters. I often look at both of their sweet faces and cry tears of so much joy because I cannot believe that I’m living a real-life dream come true. But it’s also reality. I sometimes look at both of their tear-streaked faces and cry with them because the days, the moments, the seconds are the hardest I’ve ever known.
June 8, 2014
Friday morning our smiling, snuggling, nestling baby was ours. Friday afternoon we had to give her back.
Annie’s heart echo at her clinic visit yesterday showed a decrease in her right ventricle function. Her doctor at home consulted with her doctor in Philadelphia about the concerns, but relayed how healthy and chubby and normal Annie seemed.
Together they agreed that Annie should have a blood test that would prove whether she really was (or wasn’t) experiencing heart failure. He instructed me to go home to wait for the results and pack our bags just in case Annie’s numbers required her to be hospitalized.
I hadn’t even stuffed the first onesie into the suitcase when he called to share that her heart failure numbers were sky high. He instructed me to take Annie in to be admitted to the cardiovascular ICU which “had a bed waiting with her name on it.”
I sobbed. I felt like I couldn’t breathe, and even when I could, I didn’t want to.
No finishing the email I was writing. No co-hosting a baby shower with friends. No evening popsicles shared on the patio while Audrey squealed through the sprinkler. Simply hospital admission where my girl, who I dressed and bathed and nursed and rocked, was handed over to others who poked and wired and pushed until she wailed.
And I just keep thinking, God, there must be some mistake!
June 20, 2014
Fifteen days in the hospital with a rambunctious, homesick toddler and a smiley but heartsick baby are more challenging than I ever imagined in my worst nightmare.
As soon as we walked into Annie’s room this morning, Audrey lost it. She went completely hysterical, flailing on the floor screaming for me to hold her the entire 20 minutes I nursed Annie. She begged, “Mommy, rock. Mommy, hold you. Need Audrey’s milk. Need Audrey’s blanket.” And finally she blubbered, “I want go home,” in a surrendered sob.
Audrey is doing exactly what I want to do: desperately groping for any form of comfort. I keep blubbering to God, I want to go home! Our family can’t handle this much longer. All the while, Annie stays in her room on her IV drip wondering why she’s here because the rest of her body hasn’t yet noticed that her heart is deathly sick.
The hardest part is knowing that I’m praying to the God who is able. God, since you’re able, what the heck are you waiting on? Our family is hardly hanging on!
The surgical fellow came to get my consent for Annie’s heart catheterization. She explained that Annie would probably get a blood clot, could experience arrhythmia, might have problems with anesthesia, and oh yes—she could also die during the two-hour procedure. Signature, please?
The good and bad is that everything in Annie’s heart looked exactly as it should, including the connections and repairs from her first surgery, leaving us still without any known causes for her heart failure. Since they can’t identify a cause, they can’t administer a fix.
But now, since her catheterization, our Annie is actually sick. So sick that they gave her a blood transfusion. She is on a lot of oxygen, she has fever, she is coughing, and her oxygen saturations are in the 50s. Her heart failure blood count numbers apparently doubled overnight. It’s also been confirmed that she has a cold.
Honestly, I’m angry! A cold on top of everything else?? Could’ve skipped us this time around, God! But even as I mumble it, my heart stings. He’s not skipping us. I have another day where Annie cries congestedly for me. Another day where the doctors have agreed to do all they can to give her a chance at life outside of this sixth-floor room.
I talked to two of our home cardiologists to see if they had any ideas. They assured me that it’s still possible, though not likely, that Annie can get better and move on to the next surgery. But then they reminded me that the Lord numbers our days. They encouraged me that instead of wishing for better days, I should enjoy the ones I have. Because these may be the days I get. Annie isn’t guaranteed tomorrow and, truthfully, neither am I (James 4:14).
July 1, 2014
Sunday afternoon the head of transplant stopped by and pulled up a chair. There was one last-ditch effort for Annie’s heart. He added another oral medicine to her growing prescription list.
If she shows us she can sustain on this oral combination, she will still likely have her stage two procedure in late July. However high risk that surgery was before, it will now literally be a life or death situation for Annie because she will undergo it with an already-weak heart. The surgeon has quoted us a 60 percent chance of Annie making it off the operating table. The odds would still be in our favor.
If she cannot maintain stable heart function on this oral combination, her birth heart is telling us that it needs to be replaced. We will restart the IV and travel to our home hospital to list for a transplant.
So for today I snuggle Annie tightly as she burrows deep into the safety of my neck. My hawk eyes watch the monitor for the pace of every heartbeat. And I cry, desperately begging for pristine performance from the liquid in that syringe. And I cheer on Annie’s heart with veracity that I’ve never cheered before.
C’mon, Annie, you are strong enough to do this!
July 31, 2014
“I’m sorry. There’s no explanation for why this is happening,” the surgeon marveled with glistening eyes. “No one is really sure why or how, but on Annie’s pre-op tests her heart shows that the once-diminished function is now fully restored.” He chuckled. “Because of this medically-unexplained improvement, this surgery poses no higher risks to her than any ‘healthy’ baby who undergoes it. I’ll have her out to you in no time.”
Today Annie conquered her stage-two open-heart surgery in a mere two hours. Everything went exactly as planned. The surgeon confirmed that he saw no problem with her heart function while he worked on her heart.
Annie is pinker than ever! Four hours after surgery our chunky muffin guzzled down two ounces of Pedialyte to prove she was ready for real food. Tonight she ate five ounces of her regular formula in an hour and is sucking away on her thumb begging for a refill. She’s off her sedation meds. Down on her morphine dosage … and wondering why she has to sit up to be burped. We are well on our way to having our Annie back!
August 5, 2014
I’m thankful for backseat diaper blowouts that lead to I-40 rest stop sink laundering and roadside bottle mixing. Because even in the inconvenience of these moments it means my baby girl is alive and on the way home with us.
Even as I celebrate her recovery, I ache to go back and make her life different. To spare Annie from cold, lonely, bed-ridden days right out of the womb when we both wanted her swaddled tight and nestled against me. From a deep incision to break her sternum and whittle on her 5-day-old heart. From hundreds of blood draw needle pierces and IV sticks. From weeks spent staring at hospital-tiled ceilings instead of my midnight face. From clinging to life and fighting with every pain-filled breath after yet another incision, sternal break, and more cardiac cuts.
No one wants her child to endure such horrors in three short months. And I’m not afraid to admit that no parent wants to endure the horrors either.
But I know it couldn’t have, wouldn’t have, shouldn’t have been different. The most unloving thing I could do is spare or save my child from the life that God has for her.
God knew what He was doing when we were pregnant with one try. When it was Annie who showed positive on the tests last August. Out of His great love, He made Annie with half of a heart and gave her to our family. And out of His great love, he’s drawing both of our hearts toward His through her precious, valuable life.
As Corrie ten Boom said, “There are no ‘ifs’ in God’s kingdom. His timing is perfect. And there are no places safer than other places. The center of His will is our only safety. His will is our hiding place. Let us pray that we will always know it. ‘Lord Jesus, keep me in Your will. Don’t let me go mad poking about outside of it. ’”
August 31, 2014
“Dear God, I forgive you for ruining my life … or at least I’m trying,” I finally confessed last week. Even though everything is seemingly back to normal now, I’ve been struggling to believe that Annie’s heart defect isn’t anyone’s fault. Because I know that there is Someone who could have made it different and didn’t.
It’s that same old mystery: Where is God when bad things happen? Is God the angry King up there, millions of atmospheric levels away, waving His scepter to incite pain on the poor peasants who inhibit this lowly earthly kingdom? Is He the one who was too busy saving babies in China or feeding orphans in Africa or calming dust bowls in Oklahoma and didn’t have time to tend to the tragedy occurring in an Arkansas womb?
No. Over this long journey I’m seeing firsthand that there is another option. God knew. God designed. God planned. God loved. God delivered. And then God showed up! I haven’t been in this darkness alone.
We know God has been with us every step of the way. We’ve seen so many miracles in Annie’s story. Yet, I’ll admit they’ve often not been the ones I’ve asked Him for.
The waves that rippled through our family aren’t settled. The fear over Annie’s tomorrow isn’t assuaged. She will never live with a whole heart. The haunting realities we’ve lived the past four months fighting for our daughter’s life will never be erased.
But God has held Annie behind locked operating room doors when my arms wouldn’t reach and held me behind a locked up heart where I didn’t want to be reached. He has healed. He’s changed hearts—Annie’s and mine and untold others.
As I’ve said before and He continues to prove, this is God’s story and that makes it good.
November 6, 2014
Since we’ve been home with Annie living regular life, Annie has received a lot of recognition for the miraculous healing that God continues to do in her life. A local private school where my husband coaches held a “Heart for Annie” night at a home football game. What a way to honor Annie! We sold over 600 Heart for Annie shirts and Annie was even on the news, trying to use the reporter’s microphone as a teething ring! You can see Annie in action here.
We don’t know what God has for Annie’s future. We do know that in about 18 months she’ll need the stage 3 open-heart surgery to finalize her heart reconstruction. We know what risks are involved and that we could lose her during the procedure. We also know that tomorrow could be the day we wake up and she’s in heart failure again. The next day may be the day that her lips turn purple and she struggles to eat, signifying that she needs to be listed for a heart transplant.
But even more, we know that God has a plan for Annie’s life and whatever that plan is, is the right plan for our family.
So in these days of motherhood frenzy, I try to remember how much I’d really hate a silent afternoon of no rocking. I’d be bored without Barbies to dress. Our driveway would be neatly swept instead of decorated in family chalk art. And I’m even committing to welcome the familiar stench of lingering diapers, because it means there are bottoms to wipe, faces to clean, and littles to love.
For now I enjoy every moment that makes up each God-given day I have with Annie. And I thank Jesus for this gift of motherhood.
Copyright © 2014 by Tracy Lane. All rights reserved. If you’d like to keep up with Annie’s story, visit heartforannie.wordpress.com.
1. Learn about how you can help parents of children with special needs.
2. Listen to Joe and Cindi Ferrini on FamilyLife Today® as they talk about how their lives changed when their first child was born with severe disabilities.
3. In her book, A Good and Perfect Gift, Amy Julia Becker describes how her world came crashing down when her baby, Penny, was given a frightening diagnosis. She tells about her journey of trusting in God’s goodness.