Tuesday, July 15, 2008

Thyroid Blood Work Results

I just wanted to quickly update to let you all know that Julianne's blood work, which tested her thyroid level, came back normal! Both Julianne's pediatrician and cardiologist were satisfied with the results. They do want us to go ahead and keep her appointment with the Endocrinologist though. We're thankful that this seems to no longer be a concern for Julianne anymore. :) Thank you for your prayers!

Finally, I couldn't resist sharing this beautiful story. I read it on foxnews.com today. You can read it below or follow this link to foxnews.com

Orphan Baby With Heart Defect Finds Hope, Home at Hospital
Monday, July 14, 2008

Emma Grace sucks on a pacifier while being held by her new mother Elizabeth Monroe in Miami.

MIAMI — When she was just 2 1/2 weeks old, Emma Grace lay on an operating table, scrawny arms and legs spread out, tiny body dwarfed by the giant room full of steel and high-tech gadgetry. Her chest was raised so a surgeon could get to her faulty heart. No feet were pacing outside on her account, no eyes darting for updates.

Before she learned how to smile or hold a gaze, Emma was given up twice — by her 23-year-old birth mother, a drug-user, smoker and drinker who knew she could never care for the baby, and by a 48-year-old adoptive mother who backed out when she learned of Emma's heart condition and of her own pregnancy by in-vitro fertilization. Now the baby was having an enormously risky procedure to give her the pulmonary artery she was missing. She looks so sweet, thought Dr. Redmond Burke as he prepared to operate.

"Someone has to adopt this baby," he said.

Emma Grace was born two weeks early on Monday, March 24 at 6:18 p.m., at Baptist Hospital of Miami. She weighed 4 pounds, 7 ounces, and spanned all of 16 1/4 inches. As the delivery staff put a stethoscope to her chest, like they do all newborns, they heard a murmur. A scan of her heart showed a possible defect. Emma was transferred to the care of specialists at Miami Children's Hospital, where they confirmed she needed heart surgery. They also found out she has DiGeorge syndrome, a genetic disorder whose symptoms include a weak immune system.

As doctors waited for Emma to gain weight before putting her through an operation, the couple who planned to adopt her flew in from California. They spoke to doctors about the baby's health. Nurses noticed the woman was visibly upset and was reluctant to hold the child. Then, two days before the surgery, Burke walked by Emma's room and saw the adoptive mother weeping at the bedside.

"I can't adopt this baby," she told the surgeon. "She's got too many medical problems, I'll never be able to take care of her."

But she also felt guilty about leaving Emma alone.

"Don't worry," Burke assured her. "We'll touch her every day and make sure she's all right."

"We'll take care of Emma."

Word of the orphan baby had spread quickly among Miami Children's nursing staff.

"This was the first baby where there just wasn't anybody calling. It just really got to us," veteran cardiac nurse Carol Ann Hoehn said. "We thought: 'You know what, we'll fill in the gap here."'

Teddy bears starting turning up in the newborn's bed. Bright pink bows began adorning her head. Nurses made a point to pop into her room and hold her. Hoehn sent out a text message: We're having a baby shower for Emma. Are you in? The replies came back: Yes. Yes. Yes.

"We wanted Emma to always know that she was always wanted, she was always loved and worthy to be loved," Hoehn said.

The night before her surgery, Emma was under the care of nurse Jennifer Peterson, who was instantly smitten. She snapped Emma's first glamor shots, capturing her yawning and napping. She dressed her in a pale pink hat with tiny flowers that another nurse bought, so the pictures didn't look like they were taken in a hospital. Peterson spent hours that night cradling and rocking the baby.

"Honestly you don't know what happens during surgery or afterward," Peterson said. She remembers thinking: "I don't want her last memory of people not to be nice ones."

The next morning, cardiac surgery nurse Daniel Monroe — oblivious to the orphan's tale — went into Emma's room. Moments later, he called out to a co-worker: "Listen, I need you to find me the parents because I'm in a hurry to go to the OR." I'm sorry, the co-worker answered. There are no parents. When Monroe heard that, his reaction was instantaneous. He looked at the bassinet and whispered: "We could adopt you."

For years, he and his wife Elizabeth tried to have children. They spent $35,000 on in-vitro fertilization to conceive their son Paul — an especially hefty sum for a then-operating room technician and high school home economics teacher. But Elizabeth Monroe always wanted a daughter and it was painful to give up that dream. She felt uncomfortable with the idea of adoption, wondering: How do you pick the child?

"Children are gifts from God," said Elizabeth, a devout Christian. "You don't pick them out of a magazine or out of an album... How am I qualified to say that's the perfect child for me?"

On her last birthday, Elizabeth had a "hissy fit" with her maker.

"God, I want you to give me my baby girl," she insisted. "Drop her from the sky, just give me a little girl."

Three months later, when Daniel called from work to tell her about the orphan baby, Elizabeth was certain her prayers had been answered.

"No doubt about it," Elizabeth said. "It was the baby being dropped from the sky."

First Dr. Burke had to fix her heart. The rare defect, truncus arteriosus, is usually fatal if left untreated, and requires a lifetime of follow-up even if it is repaired surgically. Over six hours that Friday in April, Burke rebuilt Emma's walnut-sized heart, using stitches thinner than a human hair to attach a donor artery and patch over a hole.

After he was done, Emma's heart was so swollen, the surgical team couldn't re-close her chest. The pressure inside her heart was so high, she couldn't be taken off a bypass machine.

"Most places in the world, she dies," Burke said.

Instead, she was wheeled over to a catheterization lab so tiny metal stents could be used to widen arteries so small that blood couldn't get through. The four-hour procedure did its job: The swelling subsided.

Emma was left on the bypass machine overnight. The next day, she was taken off it and sewn back up. She'll need another, bigger artery put in by the time she starts elementary school, but, for now, this one is doing the trick. During her last month at the hospital, Emma was visited by Republican presidential candidate John McCain, who swung through during his health care tour. Burke explained to McCain what extraordinary measures can be taken to save children like Emma. Such interventions cost the hospital an enormous amount — at least $1 million in Emma's case — but even so, Burke told McCain, patients in need are never turned away. While the men spoke, McCain's wife Cindy looked intently at the infant, IV lines coming out of her as she nestled in Elizabeth Monroe's arms.

The Monroes had called the birth mother's attorney the day after her surgery and made their desire to adopt known. They sent a letter, explaining their backgrounds and professions. After an agonizingly silent Sunday, the couple heard from the attorney a day later: The birth mother had approved the adoption. The Monroes know it isn't going to be easy. They were reminded of that soon after Emma's surgery, when she bled into her brain. It's a common problem for premature babies because their vessels haven't had time to fully develop and can rupture easily. So Emma got another piece of hardware: a shunt to relieve the pressure in her brain.

It remains to be seen how the bleed will affect her mental development. Experts believe that with early intervention, Emma has the chance at a normal life. Some hospital staffers wondered if the Monroes would reconsider the adoption after the latest ailment. But the couple is steadfast.

"We are 100 percent, totally committed to this child," Daniel Monroe said, "regardless of what comes at us."

"I truly believe that God has put her in our path because we can make a huge difference in her life," said Elizabeth, who plans to take at least a year off from work to focus on the baby.

"There's going to be a lot of moments, hard moments, we know that," she said the day Emma was finally leaving hospital in late May. Elizabeth, having spent the night there, was running on two hours of sleep. "God will never give us more than we can handle." Elizabeth has repeatedly reminded herself of that refrain in the weeks since Emma has been home. On a recent Tuesday, she shuttled the baby to her morning physical therapy appointment, grabbed lunch for 5-year-old Paul, then took Emma to a gastroenterologist. The doctor prescribed medicine that seems to be helping Emma keep down her milk. As they sat in a black leather recliner in the corner of the Monroes' living room, Elizabeth soothed the fussy infant: Esta bien, mi vida. It's all right, my love.

Paul bounced around nearby, missing some of the attention that used to be solely his. But he's a proud and affectionate older brother, running to grab her pink blankie and calming her by yanking the tail of a stuffed elephant, causing it to play "Twinkle Twinkle, Little Star."

"God has purpose in so much of this, even the fact that we had Paul," Elizabeth said, "because most kids that have an older sibling are always trying to catch up. She needs that incentive." A neurologist told the Monroes a day earlier that Emma also needs constant stimulation — something an energetic brother is happy to provide, too.

Elizabeth's friends are planning a "Welcome Home" party for Emma. At first, Elizabeth felt it was silly to have another baby shower-like gathering, but changed her mind after pondering all the baby had been through in her first few months.

"She had a very rough start," Elizabeth said as she cuddled the sleeping infant. "I want her to be so showered with love that she doesn't think twice that somebody gave her up and somebody said: No, not for me.

"She just deserves extra love."

2 comments:

Anonymous said...

Hello, I'm so glad to see that Julianne is doing good! Thanks for the message on Tanner's carepage, we got through the glenn quick and were back in louisiana in 7 days! He did great, and yes I would love to have a get together one day with all of our heart friends in Louisiana.

Shelly

The B Family said...

Beautiful story...these precious babies come into our lives for a reason, don't they? It usually ends up that we are the ones being changed by their lives. God has a plan and I am so glad to hear that these dear people are loving on God's gift to them, Emma!
Heart hugs~ Rebecca