This site is in memory of my sweet 8-week old daughter Taryn, who abrubtly & unexpectedly lost her battle with congenital heart defects.

Please light a candle, so we know you visited to remember our Taryn.

July 29 ~ September 22, 2009

 This music is from Taryn's mobile, which she loved. 

  The Story of Taryn

Taryn existed in her parents’ hearts and minds long before she existed in the world. Shauna’s nickname had already been “Mama” for a long time, and becoming parents was something both Shauna & Randolph talked about and dreamed about endlessly. After preparing their finances for many years abroad, they returned home from Korea in the summer of 2008 with plans of having a baby in the fall. After one failed attempt, Taryn was conceived in November. They were overjoyed. Just to be sure, Shauna took two pregnancy tests just so she could see the positive result again. It was, then, the happiest day of their lives.

After the 1st ultrasound on January 15th, they were excited by the very 1st images of their tiny little baby. They received an early August due date, and everything looked great. They celebrated at a Greek restaurant, with the ultrasound images in tow, and cried happy tears…thinking of how one day they would take their child there and share stories. It would be their special place.

On March 23rd, after their 2nd ultrasound, Shauna & Randolph returned to celebrate at the Greek restaurant with new images of their baby daughter. They frantically shared phone calls with everyone throughout the drive to the restaurant and throughout their dinner—informing everyone that they would have a baby girl. This was everyone’s guess, so nobody was surprised, but all were happy to be welcoming a new little girl. Shauna & Randy had been told they would have to return for another ultrasound in a week or so, as the images of the heart were unclear, but no one was worried. They thought the problem was positional…it was no big deal.

The 3rd ultrasound on April 2nd was when everyone began to feel worried for this new little girl. The images of the heart were still unclear, and the Lockharts were to be sent to BC Women’s Hospital for a closer look at their daughter’s heart.

On April 9th Shauna & Randolph, with the support of Auntie Angela and the kids, headed to BC Women’s Hospital. It was there that they received some of the most difficult news of their lives. Their daughter had several heart defects, and the prognosis wasn’t good. She would need at least 3 surgeries to repair her heart and, even then, her heart would not work properly. Throughout a long day of consultations with teams of experts, the phrase was echoed…“if you choose to continue this pregnancy”…over and over again. To them, there was no choice. They knew their daughter would be a fighter, and they were going to fight along with her.

Finally, on May 14th, at their 5th ultrasound, the Lockharts received their first dose of good news in a while. Taryn (they now knew her name) had a much less severe condition than doctors had previously thought. She would only need 2 relatively minor surgeries in her 1st year of life and, once they were over with, Taryn would be able to lead a normal, healthy life. Everyone was ecstatic. It was going to be okay.

The mood was much improved, and they finally returned to their original joyfulness. They busily got ready to welcome Taryn into their lives. Taryn’s Nana and Auntie prepared a beautiful baby shower, and all were excited for her arrival. Shauna & Randolph took long walks together, talking endlessly about Taryn and their future together. Taryn brought so much joy into the lives of her family…even before her arrival.

Finally, at the end of July, Randolph had completed the bulk of his classes at school. In the evening of July 28th, he told Shauna that he was pretty much done all of his work, and she could go into labour anytime….6 hours later, at 3 am on July 29th, Shauna went into labour—right on schedule. She woke up Randolph at 4:30 and rallied the troops. Her mom was on the 1st ferry, and everyone headed to the hospital as fast as they could.

It was an incredible labour. She went through it with relative ease, and she had a fantastic support team—with Randolph, Angela and her mom at her side. Taryn was born at 7:55 pm. The moment that she was placed on her mother’s chest will forever be etched in their minds. It was the most amazing moment, after the most amazing day, and this was the new Happiest-Day-of-their-lives.

After the birth, it was not so easy. They quickly realized that this little girl was going to bring a lot of worry into their lives. Taryn went to the Intensive Care Unit shortly after birth (and they didn’t realize then that this would be her permanent home for the next 4 weeks). In the ICU, it was a shock to see their new little girl poked and prodded and attached to numerous machines. They felt so helpless and out of control. What a way to welcome a tiny baby into this world. Taryn was confined to her bed, and holding her was a challenge. She came with many wires and attachments, and she had to remain next to her makeshift crib, constantly connected to monitors. Still, she was such a joy to finally have, and everyone was instantly in-love with this strong little one.

Taryn’s 1st cardiac surgery was on August 1st. It was only her 3rd day of life, and she was to have a 4 hour long heart surgery. After an emotional 4 hour wait, the doctor came out to inform her anxious family that Taryn’s heart repair was much more challenging than they had originally thought. They had gone in through her side, but now they would have to close her up, hook her up to the heart bypass machine, and go in through her chest to do the repair. It took another 4 hours. By the end of the day, little Taryn had undergone 8 hours of open-heart bypass surgery which no adult could have survived….and the repair wasn’t finished. Three days later, on August 4th, doctors finally completed her first heart repair with a 2 hour surgery.

 The complexity of her heart and her surgeries would forever change the course of Taryn’s recovery. The originally estimated 4-7 days of healing in the ICU became 4 emotional weeks of ups and downs. The complications caused by her grueling 8-hour surgery were many. Taryn had a collapsed lung, a paralyzed vocal cord, fluid in her lungs, and major liver problems causing extreme jaundice.

Then, on August 6th, the Lockharts received some of the most devastating news of their lives. The worst complication of the surgery was discovered with a routine head ultrasound. Doctors had found major hemorrhages in Taryn’s brain. It seemed that the arduous 8-hour heart surgery was too much for Taryn’s small brain. The doctor told Shauna & Randolph that Taryn would have severe brain damage and may not make it. They were told that they would have to make some serious decisions regarding Taryn’s life and future. They called family and friends to come say goodbye to sweet Taryn. Her prognosis was not good.

Surprisingly, in the days that followed Taryn did not seem to exhibit any signs of serious brain damage. Her prognosis improved as doctors monitored her brain, head, and behavior for signs of damage. It was a constant worry, but the concerns eventually faded into the background as they watched Taryn slowly wake up and become more alert. Great milestones began to happen as Taryn awakened.

On August 8th Shauna & Randolph got to hold Taryn for the 1st time in a week. There were so many wires and connections that it took two nurses 30 minutes to prepare the area so that Taryn could leave the bed to be placed in Mommy and Daddy’s arms. But, it was SO worth the trouble. Mommy, Daddy, and Taryn cherished their time together. It was the most content they had ever seen baby Taryn. She slept in her parents arms for hours.

At 2 weeks old Taryn got to wear clothes for the 1st time, and on August 14th, one of the biggest milestones occurred. Taryn was finally extubated—she was taken off of life-support and breathed on her own for the first time since her surgery. This was a big step. She initially needed support with oxygen prongs, but she was doing the work of breathing by herself. Once the tube was out of her throat, Taryn seemed to finally come alive. She opened her eyes, tried out her scratchy little voice, and looked around at the world for the first time. Her family was delighted at the simplest things—her bright open eyes, the hiccups, sneezes, her little cries—all were welcomed changes from the drug-induced stupor of the previous weeks.

 At 3 weeks old, Shauna finally got to give Taryn her 1st real bath, and she was almost entirely weaned off of all of her pain medications. Taryn was stable and on her way to recovery. She was able to move out of the intensive part of the ICU, and into the Transitional Care Ward on August 22nd. This was the 1st big step towards moving out of the ICU and upstairs to the recovery ward.

The TCU was like a little piece of heaven. Shauna & Randy were finally able to have free access to their child. They could hold her, change her diapers, bathe her, and give her love freely. On August 25th, Taryn even got to be unhooked from the machines for the 1st time to move away from the bed and enjoy a visiting children’s musician.

Two days later, on Thursday August 27th, the day they had been long anticipating arrived. Taryn was finally able to move up to the third floor, to the recovery ward on 3M. This was a huge step because Shauna was finally able to stay at the hospital and care for her daughter full-time. The next night, Taryn slept cradled in her Mommy’s arms all night long. It was the most magical night after such a long period of deprivation and, after that, daily and nightly cuddles in bed with Mommy and Daddy became very regular. They often lay together all day and all night. Taryn’s parents finally had the chance to make up for all the lost time in the ICU, when all they could do was stroke their daughter’s forehead and hold her hand.

Taryn’s care began to be slowly transferred over to her parents in preparation for going home. For her parents, caring for Taryn on 3M was an absolute joy and the fulfillment of life-long desires. Shauna learned all about her daughter’s special needs; she learned how to read and work the machines, give Taryn medications, and feed her through her ‘NJ’ and ‘NG’ tubes. Finally all of Shauna’s mothering instincts could be fully realized. It was all she wanted and all she needed. She lived at the hospital full-time with Taryn.

Their happy little bubble was temporarily burst on September 1st. That day, a test was done that ruled out a major liver problem, good news they’d been long awaiting. But more bad news came when a head ultrasound showed increased ventricular swelling in Taryn’s brain. The neurosurgeons came for a lengthy meeting and explained that she would need immediate surgery to drain the fluid from her brain. They would go in the next day to implant a shunt into the left side of Taryn’s head.

The next day, Taryn underwent another major surgery—this time on her brain. Shauna & Randolph had to walk their baby daughter down to the operating room in their arms and hand her over to the doctors. It was one of the most difficult moments in their time at the hospital. The risks of infection were great, and they deeply feared for Taryn’s life again.

After her brain surgery, Taryn had to go back to the dreaded ICU to recover. Being back in the hustle and bustle of the ICU, with all of its loud noises and seriously ill patients, was very hard for both parents and child. However, Taryn showed new strength this time. She clawed at the ventilator, wanting it out of her throat. Everyone could see that she had become accustomed to the sanctuary of her room upstairs and the comforts of her parents’ loving arms.

This time she was extubated surprisingly easily...she wanted that tube out! Taryn was back up on 3M early the next day, and she immediately received the good medicines of cuddles and love from Mom and Dad. She healed very fast and was back to her old self in a couple of days. It was around this time that Taryn developed a taste for the pinky finger. She sucked her parents’ pinkies incessantly, soothed for hours on end. She now scoffed at a plastic soother—she had found a much better option.

After a very positive follow-up head ultrasound the following week, everyone relaxed because the shunt was working even better than expected. All was going well, and Taryn was back on the road to home. She just needed to start gaining weight consistently, and then she could be discharged. Days became far more ordinary and much less eventful—just how everyone liked it. Taryn spent her days relaxing in the arms of her parents, staring at her bright, colourful mobile, and sleeping soundly in her bed. Soft music filled the room, and life was peaceful.

On September 7th Taryn was finally taken off of all of her monitors. For the first time, Shauna & Randolph would view their daughter’s condition by looking at her appearance, rather than by reading her ‘numbers’ on the screens. It was a new adjustment and another thing to get comfortable with before heading home. By September 9th, Taryn was feeding entirely through ‘NG’ tube into her stomach, rather than the ‘NJ’ tube into her intestine. This was another big step towards going home. The next day, on September 10th, bolus feeds began. This meant that Taryn had stints both on and off of the feeding machine.

With this new system of feeding, Taryn was finally able get out of her room and out into the world. She got to feel the first sunshine on her face at 6 weeks old, on September 10th. Like her Daddy, she sneezed when she entered the intense sunlight and didn’t enjoy its brightness, but it was sure a nice change to be out of the hospital at last. They began enjoying several long walks daily around the hospital grounds, and even beyond. Hospital staff started to recognize the Lockharts on their daily wanderings, with sweet Taryn strapped to their chests in her little brown Snugli. Taryn would either sleep through the whole thing, or she would be looking around wildly at all the lights and sights with her big blue eyes. They even got to enjoy outings with family and friends on the lawns of the hospital.

 On September 14th Taryn’s first feeds by mouth began after an Upper GI test showed that, despite many challenges, Taryn would finally be able to swallow milk on her own. She was so soothed by sucking on her parents’ fingers that she fed via “finger feeds”—drinking milk squirted from a syringe and a tube attached to Shauna’s pinky. She was adorable, and she so enjoyed this new method of getting her mother’s milk.

Things were heading in the right direction. Taryn’s life was normalizing, and she was finally gaining weight consistently. She was heading further down the road to home. Her discharge report was all written up, and there was just one more step before she could leave. Doctors wanted Taryn to have a routine heart catheterization to measure the pressures in her heart and lungs. This test involved them putting a long tube in through her groin, and threading it all the way up to her heart. This would allow doctors to see if Taryn could wait until she was 3-6 months old before her final heart repair (as originally projected), or if she would need a ‘touch-up’ to her heart repair before then.

The ‘cath’ had been scheduled for Friday September 18th, but it was postponed until Monday the 21st. This meant that the Lockharts would get to have one more quiet weekend with their little girl before sending her in for her last big test prior to (hopefully) heading home. They spent the weekend with friends and family, going for walks outside and enjoying lots of cuddles. It was one of their greatest weekends, basking in sunshine and love.

On the day of the cath, Taryn had been sleeping with her mommy all night long, so they were cuddling in bed together when the porter came to take them down to the waiting room at 7:30 am. It was an emotional wait at the “Cath Lab,” as Shauna sat holding Taryn in her arms waiting for the doctors to come and take her away. Sending Taryn in for procedures was never easy, but this was the least nervous Shauna had ever been before a procedure. They were told it was a routine procedure and, since Taryn had been doing so well—even after brain surgery, the Lockharts thought she would fly through this recovery with ease. She would even be able to come back up to the third floor afterwards, rather than heading to the ICU for recovery like after her brain surgery.

In the waiting room, Taryn sat wrapped-up in a blanket, sucking her mother’s pinky and looking into her mommy’s eyes. Shauna cried when the nurse came to take Taryn from her, remarking to the nurse that this never got easy….

In the hours that followed, Shauna passed the time with her sister, nephew and niece, waiting for word that the procedure was complete. They finally called around noon. The doctor gave Taryn’s mom and auntie a lengthy overview of the procedure. It had gone quite well, but the results were not perfect. Taryn would certainly need surgery soon, but the general conclusion was that she would be able to wait a while. They were thrilled to hear that Taryn would be able to go home for several weeks before needing to come back.

Following the meeting, Shauna excitedly headed to the recovery room to see her daughter. She quickly walked to the bed, and Taryn immediately locked eyes with her mom. Right away Shauna gave Taryn her pinky finger to suck on. This was her comfort, and an instant calm came over her as she gazed into Mama’s eyes and sucked that pinky. She seemed so happy to be reunited with her mother after another invasive procedure.

They headed up to the room a few minutes later and, even from the stretcher, Taryn’s eyes and Shauna’s eyes remained locked together. Back in their sanctuary up on 3M, little Taryn was immediately placed in her mother’s arms in bed. This was where they would remain for the rest of the day, and into the night. Randolph came that afternoon after work, and he instantly joined in on the bed-time-cuddles, taking turns soothing Taryn with his pinky too. After this procedure it seemed she needed a lot of soothing, but she was calm and content in her parents’ arms.

Later on that day, Taryn developed a fever. This caused everyone to worry, as fevers are indicators of infection. Doctors ordered a urinary catheter and blood work to look for signs of infection. By this time, Shauna had had it with all of the tests. Though she had seen Taryn be poked and prodded countless times, tears flowed down her cheeks that afternoon as she soothed her daughter through more tests. It just seemed like too much for one day, and Shauna was at the breaking point. She just wanted Taryn to be left alone. She consoled herself with the thought that Taryn would soon get a break from all of this; they would soon be Home.

That evening, Taryn’s fever broke, and she seemed to be doing fine. She sat sucking her mother’s finger as her daddy and grandpa said good-bye for the night. Shauna was up with Taryn at her regular intervals for diaper changes and soothing back to sleep. But around midnight, everything changed. Taryn was upset, and soothing her got increasingly difficult. None of the regular tricks were working, and something seemed very different. Shauna called the nurse and doctors. Medication was given and an x-ray was done which found a slight increase in fluid in Taryn’s lungs. She was hooked up to IV diuretics, but her ‘numbers’ on the monitors were not looking good. Even with oxygen, Taryn was having trouble.

More and more doctors arrived. The decision was made to intubate Taryn again and take her down to the ICU. Shauna called Randolph to come, and he and his dad headed to the hospital immediately. Meanwhile, doctors were trying to put a breathing tube in.

Then, everything suddenly changed. Taryn’s mother watched as doctors began to perform CPR on her daughter. It took a long time to register that this was not a normal part of intubation. They were losing Taryn. Doctors repeatedly performed CPR for a long time, and Randolph arrived for the last few tries. Taryn’s parents watched as the doctors had to give up trying to save their daughter. Little Taryn was gone. No one could explain what had happened or tell them how they had just lost their little girl.

Like the rest of her life, Taryn’s last hours were spent fighting to live. Her last battle was the hardest, but now she would no longer need to fight.

Taryn was unhooked from all of her monitors and tubes, free from all wires at last, and passed into her mother’s arms.
Shauna & Randolph spent the day saying farewell to their daughter. She was so loved and so wanted, and now she was gone. The pain was unbearable.

Throughout the day, family and friends, nurses and doctors, also came to say goodbye to the sweet girl that had so touched their lives.

From the greatest love,

Comes the greatest pain.

I will always hold you in my heart, my sweet Taryn.

Lullaby

What I wouldn't give
To have you in my arms again,
Breathe your scent
And snuggle close to you.
I want to watch you sleep,
See your chest rise and fall
In peaceful slumber.
Let me lay my hand
Over your heart,
So I can
Feel it beating
Beneath my touch.
I want to be
Lulled to sleep
By its rhythm.

~ by Tara Simms