Days Of Life
Friday, March 26, 2010

Last November, I brought you the story of Hailey Rose; the story of a little girl born far, far too soon; the story of her mother Julia and the fierce fight she waged to keep her little one safe inside of her, a fight which almost caused her to lose her own life; the story of her Daddy Rob and the family they hoped one day to become. 

Hailey's story begins here. I would advise you to read it first, because . . .  

Today, the story continues. Today, the story is about a life in days. 

Hailey came into the world, weighing one pound, ten ounces. 

Think about that.

I went into my pantry to find an equivalent, to see what fragile felt like, to try and understand how heart-wrenching it must be for a parent who holds their premature child for that first time, feeling bones against skin, a body as delicate as bone china, a holy whisper in their ear that this grasp on life is tenuous at best. 

A jar of peanut butter. A medium-sized jar of peanut butter was more substantial than this little girl,  Hailey Rose.

Hard to fathom. Even more so, when it is your baby teetering on the precipice of life and death. 

A life measured in days. 

By the time Hailey was 15 days old, she'd already had two blood transfusions. She'd gained five ounces, weighing just a whisper more than that jar of peanut butter, but she was having trouble with her oxygen  levels and in the neonatal intensive care unit, to breathe is everything. 

Breathing, one of the most natural functions of our bodies, the soft ebb and flow of inspiration that keeps us alive. For the majority of us, it is the most effortless task we perform. But for these tiny lives in the Neonatal Intensive Care Unit, it is the most Herculean of all struggles.

Hailey was on CPAP, a breathing machine that closely resembles a scuba mask. It stands for continuous positive airway pressure, a fancy way of saying the machine was taking her breaths for her, forcing air into her lungs. 

At 17 days old she weighed two pounds. Her Daddy got to hold her for the very first time. 

A life measured so preciously in days. 

At 20 days old, the scuba mask came off and was replaced with a nasal cannula, little prongs in her delicate nose, a big step forward in her effort to breathe.

On her 24th day of life, her PICC line was taken out. A PICC line is an IV that goes directly into the heart, a serious but protective measure that helps keep safe the tiny, thread-like veins of premature infants. 

Now the only nutrition running through her veins was breast milk, the liquid of life, another monumental step for this miniscule fighter. 

Progress was eked out in slow, steady, tiny baby steps.

But then, on her 25th day of life, something went wrong, very wrong.

Breathing alarms sounded and Hailey turned blue. Breathing had once again become her greatest challenge. Rob and Julia were no longer allowed to hold her. Even the harbor of her mommy's arms was now too taxing for this warrior sprite. She had to expend every bit of her little might trying to breathe. Rob and Julia could only sit at her side in heartbreaking frustration watching her body turn blue, watching her chest retract impossibly too far as their little girl gasped for air. Her medical team had to bag her several times during the day to force air into her lungs. After bagging her throughout the day, she was finally put back on a CPAP.

The measure of life in precarious days.

By her 35th day, Hailey's outlook turned even grimmer. As hard as she tried, she could not maintain her oxygen levels. She was placed on a ventilator. Her parents' worry turned to despair. A ventilator. How could their little girl ever come back from a machine that did all of her breathing for her?

And then even worse news, blood work showed an infection, a dire setback. Still under three pounds, this tiny wisp of a girl had to endure a spinal tap. Her feedings were suspended and she was flooded with antibiotics. Her team of nurses described her as a "wet noodle." Julia and Rob stood watch over their precious girl as she just lay there, limp and quiet, no life left in her. Her fight seemingly gone. 

But they were still learning about this little girl they'd brought into the world. Hailey balled up her doll-like fists and battled back against the infection trying to take her. With her super-power shield of antibiotics, she was able to back away from the edge of that frightening precipice and come back to her Mommy and Daddy who were waiting there, desperate for her return. 

And return she did. 

The ventilator was turned off and the scuba mask was put back in place. Rob and Julia never dreamed they would be this excited to see a giant mask covering their beautiful baby's face. 

The days of life, taken in determined steps, one by one.

On her 44th day of life, Hailey was allowed to wear clothes for the very first time, a monumental step for her. It meant her tiny body was beginning to maintain its own body temperature. 

By Christmas, her baby steps had become leaps. She'd had her third blood transfusion and she now only required a nasal cannula, again. 

But the best Christmas present of all was the gift Hailey gave to her mother.

There are three rows separated by walls in the NICU unit. Each of those rows are lined on both sides with the tiniest of babies fighting for their lives. One of Julia's first lessons in the world of NICU was to walk with her head bowed, the only way of giving privacy to the other families in this public place so fraught with worry and suffering. Julia had learned to count isolettes, head down, until she got to number four. 

On this wintery day, she counted to number four and looked up. There was her beautiful princess in a big-girl bassinet, gazing up at her with her enormous blue eyes. No more isolette. No more warmers. Her body was now doing the job of keeping her warm. She was becoming a real baby. Julia wept as she watched her now, four pound girl kicking her impossibly tiny feet in the air. 

One life measured in spectacularly mercurial days.

On her 55th day of life, Hailey was fed her first bottle. She guzzled every drop of it. Julia and Rob knew the corner had been turned. Hailey was well on her way to coming home. 

On her 57th day of life, on the first day of the New Year, Julia scrubbed up and walked down her baby's row, eyes cast to the floor, counting. When she got to number four, she looked up. 

There was no bed. No Hailey. 

Before she could panic, the nurses smiled as they told her Hailey had been moved to row three. 

Row three! Julia was ecstatic. Babies were discharged from row three. 

The days were now a countdown to the ride home.

Days impatiently spent waiting for the life ahead.

On Hailey's 62nd day of life as soon as Julia saw her baby she knew the countdown was off.

Hailey was pale, frighteningly so. 

Hailey's nurse was new to her and she hadn't noticed anything off. But a mother's intuition is sounder than all the medical knowledge in the world. Doctors were summoned. Exams led to X-rays and the worst of news. It looked like Hailey's intestines had ruptured, a life-threatening but common problem for preemies with their diminutive organs. 

This tiny girl who'd been doing so well just a day ago was now being swarmed with blood draws, x-rays, IV's and worst of all, her food supply was cut off. Not a good thing for a baby who had learned the art of eating every three hours. Tubes were inserted to drain her intestines and she was flushed with a heavy regimen of antibiotics. Once again, Rob and Julia's happiness plummeted to despair.

Two days later, the source of their worry was found. Miss Hailey Rose passed a large doody, making the medical team, her parents and one hungry baby very happy indeed. 

The countdown was back on. 

Days of a life measured in a roller coaster ride of despair and joy.

On her 70th day of life, her battle to breathe completely on her own began. She was taken off all oxygen in a test to see how long her little body could sustain itself. It was the first time Julia and Rob were able to see their little girl without wires and tape on her face. In Julia's words, "It was a gorgeous sight."

She breathed on her own accord for 45 minutes. Magnificent work, indeed.

The goal was to trail her off of oxygen a little bit more every day until her tiny body got the hang of this breathing gig. 

That was the goal. 

But for some reason, it wasn't working. Instead of her times increasing, Hailey's ability to breathe on her own grew shorter and shorter. At one point, she couldn't even last five minutes. 

Julia and Rob were discouraged. They'd come so far. They just wanted their little girl home. They just wanted to become what so many others took for granted—a family.

They decided to train for a life filled with apnea monitors and oxygen. All they wanted was their baby home, no matter what it took. But as Rob stood over the baby mannequin, fingers pushing down on the doll's chest as the CPR trainer taught a father how to save his daughter's life, Julia was flooded with doubts and second guesses. Here in the NICU, the capable medical team sustained her life in the panicked moments. It was overwhelming enough to care for a newborn child, but to care for one who struggled to breathe was something else entirely. Even though they passed all of their apnea and CPR training with flying colors, Julia didn't know whether she should jump for joy or be scared to death. She was leaning more towards scared. 

The days of a life, guided by a hand who sometimes didn't realize how strong she really was inside.

After a fourth blood transfusion due to low hemoglobin, Miss Hailey Rose was ready for her final test. 

She had to breathe. 

If she couldn't do it, she was going home with oxygen tanks. Julia prepared herself for the worst. 

On her 81st day Julia held her sweet girl in her arms and the oxygen tanks were shut off. A big day for this mighty warrior of such tiny size but incalculable spirit. Her fan base of doctors, nurses, and other preemie families stood around them, crossing their fingers and giving up silent prayers. Within minutes of taking in her own air, Hailey's oxygen levels plummeted. Julia's hopes went with them. 

In the days of a little baby's life, angels are everywhere.

An experienced NICU nurse who knew Hailey, sat down next to Julia. In a calm, quiet voice she told Julia to wait, to just hold her baby and wait. Alarms began to sound. The nurse muted them and had Julia turn her back away from them. The nurse sat next to her, reassuring her to let Hailey find her way. To wait. The silent alarm lights grew more frantic and Hailey began to struggle. The nurse told Julia in her reassuring tones that she KNEW Hailey could do this. Hailey would do this. Wait. Hailey's struggle grew more intense. The doctors advised the nurse to turn the oxygen back on. But this nurse, this woman who guided Hailey through darker storms than this, knew what this little warrior was capable of. She looked Julia in the eye and said, "She can do this. Wait."

And then suddenly through the darkness, through the journey of fear and anguish and frustration and pain, hope soared through, bringing light and life to this baby, to this family, to this life they were waiting so patiently to begin. 

Hailey breathed and breathed again and again and a blessed again. 

In the days of a life, hope is borne in the breaths we take. 

At two hours, her fans began cheering. The nurses from other rows were peeking over the walls and shouting, "Go HAILEY!!!" Cheers were chanted to keep her breathing. The entire NICU unit celebrated. Another premature life saved. Another baby on its way to a life filled with promise.

How far we have come. 

Julia sat there, Hailey lying upon her chest, her baby's soft breath, a blessed prayer against her skin. 

She snuck out her cell phone and texted Rob and her mother all night with the words, "And Counting," marking the hours her beautiful girl breathed, just breathed. 

On Hailey Rose's 89th day, she had passed her graduation exams. Her final test was unanimous agreement of her medical team that Hailey was ready to go home. 

As the doctors began their final exam, Julia and Rob held hands tighter than they ever had. 

They began with the customary routine. 

"This is baby girl Hailey. Day of life—89 . . ."

The words grew out of focus for Julia until she heard the one thing she'd been waiting for, "Yes. She can go home."

The place erupted in a roar of cheers and a room of tears. Tears, finally of joy. 

Hailey and Julia were escorted to the front entrance where Rob was waiting to take them home. Julia cried the whole way through the hospital corridors.

On her 89th day of life, Hailey Rose took her first breath of fresh air, she saw her first tree, felt the first breeze upon her tiny cheek, for the first time she gazed at the clear blue sky, that limitless sky, hers for the taking.

Hailey came home a vibrant six pounds, four ounces. She was diagnosed at discharge with apnea, chronic lung disease, retinopothy of prematurity, anemia and reflux. 

The next few weeks were tense times filled with a litany of doctor appointments, diaper changes, sleepless nights and constant diligence in hand washing. A simple cold could be traumatic for this still developing girl. 

On Hailey's 135th day of life, she weighed nine pounds, three ounces. Her doctors took away her apnea monitor and her diagnoses of apnea, chronic lung disease and anemia. She has almost outgrown her retinopothy. 

She is on track for her "adjusted age" of two months. Adjusted age goes by the due date. She is starting physical therapy, occupational therapy, speech therapy and early intervention so she can catch up to her actual age.

In the words of her mother, "She amazes me everyday." 

She laughs out loud. She loves to watch the toys dance that hang from her car seat. She smiles and coos and of course, toots. She knows her Mommy and Daddy and Grandpa and Grandma. Her eyes follow her mommy around the room. She practices being a soccer girl like her mommy as she kicks and kicks her legs. She is perfectly formed, an angel from heaven above with beautiful big blue eyes and a thick thatch of her Mommy's dark hair.

I know these things, because yesterday, a little girl came to visit me for the first time. And oh, how splendid the cuddling was. 

The days of one precious life, fraught with so deep of a struggle will now be measured in the joy of a family complete. A mother, father and one fierce cotton-candy sweet, blue-eyed, sprite of a girl.

I wish you, Julia and Rob, all the sweetness little girls can bring. May your days turn into years of a lifetime of treasures and milestones and holidays and sunsets and moments, filled to the brim with the extraordinary loveliness of Miss Hailey Rose. 

On April 24th, Team Hailey Rose will walk in the March For Babies sponsored by The March of Dimes. We will walk in gratefulness for the incredible strides that have been made, knowing that only a few years ago, Hailey quite possibly might not have made it here to cuddle without all the extraordinary medical measures to save her. We will walk to help continue the battle for ones born too soon. We will walk so that other families will know the joy that Rob, Julia and Hailey now know, the joy of being a family. 

If you have any extra cents, please consider donating to the March of Dimes. 

And more importantly, say a prayer for those who fight the noble fight. The doctors, the scientists, the nurses and most importantly, the babies. Pray for those who fight every day. Their families will forever thank you. 

Today's Magnificent Download: Not a song today, but a book. A book my sister recommended. A book whose last words surely were written for the spirit of a little one just like Hailey. 

Everywhere Babies

Everyday, everywhere babies are loved.

For trying so hard

For traveling so far

For being so wonderful

Just as they are.

For Hailey Rose, with all my heart. 


Anonymous said...

Oh Joann, I don't even have the words but I certainly have the tears-the bad and good ones and I am just so glad there were good ones involved-I was beginning to think there might not be. She if a fierce warrior. Good for her. And you.

Dee said...

What an amazing and inspiring story. I'm so glad the medical field are now able to save lives like this. I wish her and her family all the best!

5 Kids With Disabilities said...

I so admire parents who have to deal with such stress in order to bring home their baby. The roller coast ride must be awful. I am grateful to hear that Hailey Rose was able to come home. May she lead a long and happy life!
Lindsey Petersen

Melissa, Multi-Tasking Mama said...

What a beautiful, inspiring story! Praying for many more happy days ahead for that sweet baby and her family! Thanks for sharing their story!

Julie said...

My first son was a preemie born after HELLP much like pretty Hailey. I cry every single time I read the end of Everywhere Babies, and this post was no exception.

Thank you for sharing her story.

ProudSister said...

What a beautifully written follow up to that amazing story. And what a little heartbreaker she is, those eyes, that gorgeous face! Its amazing how far medical science has come. To think our mom lost our sister so many years ago, even though she was born much further along than Hailey. Thank god for those that work to preserve our babies' health. Congrats to Julia & Rob! May you have many, many years of happiness.

Anonymous said...

You wrote that beautifully.

My niece was born premature and weighed less than she. She came home at 4 pounds something and she cam ehome with the breathing machine. All is good now, she just turned 3.

Her parents, Tyler's sister and BIL, are peculiar and sometimes it is aggravating to watch how they parent this precious thing. Eliza is a doll and a half and I do my best to spoil her rotten even though musical, battery operated, and colorful toys aren't allowed!

Auntie Laura makes sure she eats cookies and cake even though they keep her thin as a ridiculous rail and give this teeny tiny thing SKIM milk!

Kelly said...

The very first walkathon I ever did was for the March of Dimes. I've done many other walkathons since then but that one meant the most to me for reasons I still don't know. Maybe for the Hailey Roses of the world.

sarasophia said...

My first time visiting your site to read such a lovely faith-building story....tears in my eyes and my heart so full for this little family.

Thank you so much for sharing their journey. The beautiful Hailey and all premature infants like her are in my prayers permanently.

Sara Sophia

Maria Melee said...

Thank you. So very much.

So grateful to read about Hailey's bright spirit.

Aunt Becky said...

What a beautiful, amazing post. Thank you.

Katie's Dailies said...

I came across your blog from another site, and you had me hooked from the first sentence. I was on the edge of my seat with the suspense; I was holding my breath as Hailey struggled for hers, and I was in tears by the time I finished. Glorious writing for a glorious girl. GO HAILEY!

MrsBlogAlot said...

Oh my heart. And the tears I have in my eyes Joann. What a road, what a journey.

Unknown said...

That was an incredible and amazing story. I am sitting here crying.

My twins were born prematurely as well, though not nearly as tiny as Hailey....

Hooray for Hailey!

Anonymous said...

Thank you.

Dear God,

Thank you so very much for the wonder and awe that is precious life. Thank you for the dedication and determination for those that work in our hospitals, tending our sick and weak. Thank you for the ability to share stories such as these, that they may touch lives and open hearts. Be with the parents of the young ones that have not yet gone home. Be with the families of those that suffer, that they may feel your guiding and protective hand.

Rae said...

Beautifully written and heart wrenching....I'm planning to read some more of your posts and bookmark your blog! Thanks for visiting my site via Say Anything. Dee has started a great thing!

Lula Lola said...

I read this aloud to my husband, and we both are wiping tears. I hope happiness follows this sweet soul!

Not Everyones Mama said...

Oh, I'm crying. That took me back to about 8 years, almost 9 years ago this June. My little niece was born waying just a couple more oz than Hailey. Sydney was 1 lb 13 oz and 13 inches long. The pictures are so similar. Sydney was born at 29 1/2 weeks. And if it gives Hailey's parents hope, Sydney is now a happy healthy very very smart soccer playing, gymnastic doing going to be 9 years old on June 20 little girl. She's tiny still. A lot smaller than the other girls her age, my daughter will be 6 in 10 days and she is Sydney's size. But Syd is just petite. She's one of the most beautiful girls I have ever seen.

Here's a pic of our Sydney, last year - I need to get more pictures of her up. Just to share what they grow up to be after starting out with pictures just like Hailey's, daddy's hands were bigger than baby.

I am so happy for Hailey. For her parents. For everyone. Now, little one, you keep growing and thriving!

Thank you so much for sharing this with us!

Bossy Betty said...

Oh my goodness! What a journey! What a story. I was crying midway through it. Whew. And that last picture!!!

Noelle said...

Thank you Joann...that was beautiful! I'll go now and mop up the tears.

LisaPie said...

People might say that her life is a miracle. I say every day of her life have each been a miracle!

She is a blessing. And you my wordsmith friend are also a blessing to me.

Thanks for sharing her with us.

duffylou said...

Joann this was so beautifully written, congratulations. Thank you for sharing this amazing story. All three of my children were premature, but certainly not to this degree. This family is truly blessed with their outcome for reason like this the March of Dimes is one of my supported causes.

Dawn in D.C. said...

What a beautiful story! And a beautiful girl. Wishing Hailey and her family a lifetime of happiness!

MrsDixon said...

What a touching story and a beautiful baby..... I always appriciate awareness to such issues.

laura Wallace said...

Joann, I read the story when you first wrote it and wondered how the baby was doing. So beautiful to see her success. My little girl, who is now a senior in High School, the one I brag on all the time was a NICU baby at 3 pounds. Far more advanced than this little one. I know the horror and the joy and this little girl will be a gift to all because her life is destined to be encouraging to others and she will have purpose because of her start.
Blessings to Mom and Dad for their stregnth through this and for the days to come. Prayers and thoughts always that direction from me.
Thanks for sharing.

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