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'I'm Sorry ... It's Her Heart'

Our journey began when doctors told us our unborn daughter would be born with half a heart. In the last year we’ve learned to rely on God’s faithfulness.
By Tracy Lane


A longer version of this article is available here.

 

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.

Olivia, no.

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. 

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 after she was born and desperately hope that it worked.

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 the amazing journey we’ve had 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 will 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 three 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.

 

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

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.

 

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 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 here in Philadelphia for Matt and me. It was time to begin this day that would change every other day that we know from now on.

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 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.

 

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 consulted with our 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.

 

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.

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 31, 2014

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 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 three 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. 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. Click here to read a longer version of this article. If you’d like to keep up with Annie’s story, visit heartforannie.wordpress.com.

Next Steps

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.



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