A Season of Change

Two Months

2008-04-19T12:20:00.000-07:00

It has been two months since I last updated this site. Much has changed. P.E.N.N.river Program is no longer merging with Texas Parent to Parent. The first part of our program, which involves an on-call volunteer OB patient advocate (right now it is me) is ready to go. I have compiled a 24 page research paper on the nation's top hospitals, as well as a composite of regional hospitals in the state of Texas for parents who are facing a medical diagnosis at birth. Also, I have a brochure that has been sent to the publisher for parents to be given when hospital staff find a medical diagnosis at birth.

I am now 32 weeks pregnant and one day. I have 6-8 weeks left, and have gotten a second three-d ultrasound of Triston which showed him smiling, and grimacing, and opening and closing his eyes and his mouth.

We have gotten two kittens to add to our Zoologically established household which already had three dogs!! What a handful! Their names are Benny and Juniper (Joon).

My husband and I recently went to Houston for the weekend after Easter to greet our newest nephew who was born over Easter weekend.

I am still going to Austin and Marble Falls for my bimonthly appointments.

It's spring and beautiful! Reminiscient of last year at this time, when I was having my baby shower for Penners...I have decided not to have a shower this time. We have everything we really need minus a monitor and moses basket.

I have almost completely decided to use cloth diapers but want to wait for our gorgeous addition to arrive to test out several brands with him before committing to one particular brand.

The next several weeks will be difficult as I am beginning to grow anxious with anticipation!!

Not much else is going on at this point. Hope all is well with others!

P.E.N.N.river

2008-02-18T07:21:00.000-08:00

Since my last blog, I have spoken with the CEO of our local hospital in Fredericksburg, TX. I have also spoken with Dell Children's Child life specialist and taken a tour of the facility, and decided to deliver Mr. Triston Harding in Austin based on information I am privy to as well as gathered through Healthgrades.

Today I will meet with key players to discuss the first program of Parents who've Endured a Newborn....Near-death group. We are no longer going out on our own as a stand-alone non-profit, but instead merging under the tax umbrella of Texas Parent to Parent housed out of Austin.

Our first program involves being on-call for patients at Hill Country Memorial Hospital in Fredericksburg who are surprised at birth with a medical diagnosis. I will be a liaison that would provide unbiased statistical information on area hospitals patient safety data as well as specialty areas. Also, I would provide information on the top childrens hospitals and help in decision making by researching insurances which are accepted at area hospitals, and set families up with others who have been through the same decision-making process. I would be on-call in the aspect that the affected family would be able to call me anytime day or night to ask questions, voice concerns or vent frustrations.

Once the protoype of the program is in place, with the help of TxP2P, I will be taking the program to other hospitals in the region.

Another aspect of the program will be in the distant future to construct a manual that informs patients of how to deal with "issues" that arise when being in an ICU setting. It would be written specifically for parents of children, however, could be used for other family members as well. It will be fully based on research, and constructed as an instruction manual.

The more detailed aspect of the above program would be developing a speaking circuit for grand rounds presentations. Texas Parent to Parent has done this in the past, however, currently are lacking site coordinators which are needed to make the necessary relationship contacts.

I have a lot of work to see this program up and running by June. I will be giving birth at that time, and will be on an extended leave, but available nonetheless in Fredericksburg for patient families.

Perhaps if through these efforts we can save one child from going down the path my son did, his life being lost might be "justified." One thing is for sure, I would feel much better if the suffering that he went through was serving a purpose in other childrens lives.

Healthgrades.com

2008-01-26T12:52:00.000-08:00

I have learned an invaluable lesson in life after suffering through my son's pain and death. You cannot depend on anyone else to "direct" you in the best care for you or your family. You must gather your own information, and form your "own" opinions. With the formation of P.E.N.N.river, that is one of my biggest goals, to provide parents with the information they need to form their own opinions, and at least set them on the path of deeper understanding when it comes to medical care for themselves, or their child.

Setting out to do just that, I paid for reports from healthgrades.com on 5 hospitals. Three hospitals, Brackenridge, St. David's, and Seton in Austin, TX and Methodist (where Penn's surgery was performed), and University hospitals in San Antonio, TX. The information I gathered from healthgrades, was disturbing, and makes me question, "what were we thinking" depending on other's opinions??

Just looking at the overall service ratings, which I believe is what you get when you apply for a free report from healthgrades.com, you cannot determine which hospital is the best out of the five, although, St. David's and Seton perform above average in Pulmonary and Orthopedic services respectively. But, none of the five report that any service area is poor.

Page 2, I constructed my own spreadsheet comparing data from 2007 Patient Safety Ratings. You can rate each hospital on different variables as "Worse" "Average" and "Better" than the standard. I devised a a system to score, basing Worse=0, Average=1, and Better=2. Seton, St. David's, Brackenridge, University and Methodist are listed in order of best to worst.

Seton (has 398 beds) who scored the best out of five on patient safety ratings, performed better than average on the following variables: Lack of pressure sores or bed sores acquired in the hospital, Absence of hip fracture after surgery, Avoidance of excessive bruising or bleeding as a consequence of a procedure or surgery, Adequate organ function and electrolyte and fluid balance after surgery, Lack of deep blood clots in the lungs or legs after surgery, and Avoidance of severe infection following surgery.

Methodist (has 1281 beds) who scored the worst out of five, scored "Worse" on the following: Prevention of death in a procedure where mortality is usually very low, Ability to diagnose and treat in time, Avoidance of excessive bruising or bleeding as a consequence of a procedure or surgery, Adequate organ function and electrolyte and fluid balance after surgery, Avoidance of respiratory failure following surgery, Avoidance of severe infection following surgery. Penn experienced mortality in a surgery where mortality is usually very low.

Overall, you get the picture. Knowledge is power. And, you and your loved ones should be informed. We were not.

Perhaps Emerson Penn Harding??

2008-01-25T08:53:00.000-08:00

On January 14th, we found out it's a boy!!! Can you believe it?? We were shocked. When I was only 11.5 weeks along our Maternal Fetal Medicine physician stated that with 80% certainty that it was a girl, and then at my next regular check up my GP stated after hearing his heartbeat, "well, it sounds like a girl!" We were prepared for either, but I won't lie, I was literally praying for a boy. So when the sono tech scanned between his legs, and I saw what I saw before she stated it, well, I was elated! And then she confirmed it. I started crying, but under control.

Now we have recently gotten the anatomical screen. Based on the UltraScreen at 11.5 weeks, the Quad Screen at 17 weeks, which together are termed the sequential screen, our current baby has a 1/32,000 chance of having any sort of genetic anomolie such as Trisomy Syndromes, and NTD's. Our history states we have a 1/100 chance of having a child with DS, so in the terms of modern medicine this is "good" news.

The only good thing about it in my opinion thus far is that if we did not have a child with DS, that we would be less likely to experience any major medical issues, which would alleviate the scary aspects of facing a surgery with our child again. But, I have to say that my son taught me that it doesn't matter if you have DS or are quote-unquote "normal". He was such an angel, and if God so chooses to bless us with another angel such as my son, I would take him in a heartbeat no questions asked! I am enamored with children with Down Syndrome, they are so uniquely unique just like everyone of us, but much more so. They seem to have a presence that is beyond words. Penn certainly did, and still does.

Okay, I'll get off of my soapbox! We have decided on several names to choose from: Emerson Penn Harding, Leif Penn Harding, Christian Penn Harding, or August Penn Harding. It's difficult for some reason, but I am anxious to start calling him by name. Perhaps we'll figure it out February 9th, that is the day we get our 3d sono in Austin. Can't wait to see this beautiful little mover and shaker!!

Penn's first video cast

2008-01-09T12:50:00.000-08:00

Well, I kind of figured out how to broadcast Penn. His video is the first picture on right hand video bar! Yeah - so fun!

Penn Video

2008-01-09T12:42:00.000-08:00

Penn River

2008-01-09T12:37:00.001-08:00

This is Penn trying to poop and eat at the same time! How adorable is that hair!!

Think this could be a video of Penn

2008-01-09T12:06:00.000-08:00

http://www.youtube.com/v/75RpXjcdApA

First kicks

2008-01-09T06:27:00.000-08:00

This morning at roughly 4:30 a.m....I felt little PennElope Grace, or Victoria Penn, Leif Penn, or Isaac Penn move!!! I awakened really hungry so when I went back to bed after eating a snack and some milk, I layed down, my digestive system roaring and girgling. Little bean could hear it I assume and was awakened. I don't think she/he was too thrilled. I felt a thump on my right side. "Is that the baby? Or just a spasm?" I wondered.

Then I felt it again.

I put my hand on my belly, and sure enough the little booger kicked me!!! I felt it not only inside but on the palm of my hand! I was overcome with joy and a tiny tear developed! I am sooo thankful after losing my son, that I have the opportunity so soon afterwards to be excited again about a miracle in the making. God is so Glorious...to say it now, knowing how spectacular brings tears to the brim.

2007-12-17T08:48:00.000-08:00

2007's 10 Best Children's Hospitals
By Karen Cicero
The exclusive results of CHILD's detailed, data-driven rankings of the top pediatric institutions in the country.

Survey Overview

Shari DeCarlo was four hours into labor in a hospital in suburban Cleveland when her nurse noticed the baby's heart rate wasn't responding normally to contractions. "The pregnancy showed absolutely no signs of trouble and the baby wasn't early -- Shari's due date had actually passed by two days," says her husband, Michael Kerkel. But soon it became clear that something was very wrong -- and that the hospital, which didn't have a neonatal intensive care unit, wasn't equipped to care for the couple's child.
DeCarlo had an emergency C-section and her doctors suggested that the 6 lb., 11 oz. baby girl -- whom Kerkel says was "bright blue" at one point -- be transferred to Rainbow Babies & Children's Hospital, one of two pediatric facilities in the city. "She was so sick that they asked my wife and me, 'If we were to lose her on the way to Rainbow, would you want us to resuscitate her?'"

Day after day, in children's hospitals across the country, parents face life-and-death decisions, choices they have to make knowing little about the hospital itself. Enter the Child magazine survey -- the only data-driven comparison of the nation's children's hospitals, providing parents with crucial medical information that isn't available anywhere else.

Our comprehensive 247-question survey, guided by leading pediatric experts (listed on page 12 of this article), examines vital medical information including survival rates, the number of complex procedures and intricate surgeries conducted, volume of research studies, efforts to reduce medical errors, and the quality and training of the doctors and nurses -- as well as child-friendliness, support for families, and community involvement. It was sent to the 116 full members of the National Association of Children's Hospitals and Related Institutions last August. Seventy-six hospitals completed the survey. The responses were graded to determine the best hospitals overall and the leaders in six pediatric subspecialty areas. Among the trends we discovered when analyzing the surveys: More hospitals are using new technology to reduce medical mistakes. There's also increased emphasis on keeping healthy kids well through community services like free vaccines, car seat checks, and violence-prevention efforts.
As for DeCarlo and Kerkel, their daughter survived the ride to Rainbow -- and spent seven weeks in the hospital getting well. "We were thrust into a world we never knew existed," says DeCarlo.

You don't have to be. Much of being a good parent involves being informed. Chances are your local hospitals deliver good care, but should your child have a critical or chronic condition, it's crucial to know where the most advanced work is being done, where you might want to go for a second opinion, and what questions you need to ask. Read on for details about the winning hospitals, including a personal story about each one.

How we conducted our survey

2007's Best Children's Hospitals By Specialty
1. The Children's Hospital of Philadelphia (CHOP)

Current Research Studies: 1,536

Cutting-Edge Treatments: Developed a newly approved vaccine for rotavirus, a virus that causes high fever, severe vomiting, diarrhea, and hospitalizations in up to 70,000 American kids under age 5 annually; pioneered new therapies to treat neuroblastoma, the most common cancerous solid tumor occurring during early childhood; and opened the world's first center to collect and analyze DNA profiles on as many as 100,000 children to understand the genetic causes of childhood diseases.

Compassionate Care: Provides weekly movie nights with popcorn; a Sony PlayStation in 125 new rooms; an in-hospital TV station featuring shows like CHOP Idol (patients compete and vote in a singing competition � la American Idol); and more than 30 family support groups.

Community Focus: Offers a complete child-abuse and maltreatment center, establishing one of the nation's first fellowship programs for the specialty; makes housecalls to pinpoint possible allergens for certain children with severe asthma; and checked more than 1,000 car seats in 2005 and trained 30 technicians how to do so.

Hope and Healing
It's 3 a.m. in the neonatal intensive care unit (NICU) of The Children's Hospital of Philadelphia, and Naomi Shapiro is holding her infant daughter, Eliana. The 2-month-old is recovering from a delicate three-hour surgery to remove a tumor that occupied 40% of her chest. "Her doctor told me it was the equivalent of having an elephant stand on her," says Shapiro. But on this night, Shapiro's attention is divided between her own daughter and another child.

"I was startled by the whipping sound of helicopter blades, and moments later a team of people wheeled a baby who hadn't even been cleaned yet into the NICU," she recalls. "And I thought: 'It's 3 in the morning, what can they possibly do for this child now?'" A couple of minutes passed, and the surgeon who operated on Shapiro's daughter examined the baby.

"It seemed he ordered a dozen or so tests, and, again, I thought, 'How are you going to get them done at 3 in the morning?'" It wasn't long after nurses started making calls that equipment began rolling into the NICU, recalls Shapiro. And a few hours later, the tests were done, the child had a diagnosis, the OR was on hold, and all the doctors were waiting for was consent from the father, who was still en route from the hospital where the baby was born. "At that moment, it dawned on me that this huge hospital is like a well-tuned orchestra, and every department, every service is in perfect synchrony."

2. Children's Hospital Boston

Current Research Studies: 751

Cutting-Edge Treatments: Reconstructed defective bladders of kids using their own cells, marking the first time tissue engineering has rebuilt a complex internal organ in humans; successfully operated on 22-week-old fetuses diagnosed with hypoplastic left heart syndrome (a condition in which the left side of the heart is underdeveloped and can hold very little blood), paving the way for surgeries after birth to go more smoothly; and detected abnormalities in the brain stems of babies who'd died of sudden infant death syndrome (SIDS), which may lead to a test to determine infants at risk for the disease.

Compassionate Care: Provides a "Puppy Pre-Op" clinic, where kids are prepared for a procedure by watching a stuffed animal go through it; a supervised outdoor playground; Big Apple Circus clowns; one of the nation's oldest pediatric palliative (end-of-life) care programs; and free meals for breastfeeding mothers.

Community Focus: Runs one of the U.S.'s most comprehensive pediatric obesity clinics; distributes free bike helmets in schools; and successfully advocated for the creation of a statewide pediatric mental health commission.

Hope and Healing

It had been five months since Alyson and Michael Rolfe's first child, Charles, was born. From tests done during the pregnancy at Children's Hospital Boston, the couple knew their son would have gastroschisis, a condition that causes the intestines to develop outside the body. They also knew he would be in for a long struggle and need many surgeries. But they had a harder time coming to terms with the fact that the liquid feedings he was receiving through IV lines -- what's known as total parenteral nutrition -- were keeping him alive and killing him at the same time. These feedings were the only way Charles could get nourishment, but they were harming his liver, as they do to 60% to 80% of babies who receive them. In Charles's case, the damage was severe. "The transplant team from the hospital came to talk to us, and I wanted nothing to do with the transplant," recalls Alyson. "I had been at the hospital long enough to see how kids who receive transplants suffer."

But what was the alternative? Three years before Charles was born, a physician at the hospital, Mark Puder, M.D., had been trying to figure out why the feedings caused liver damage. All his results pointed to the type of fat in the formula. Few of his colleagues believed that could be the case, but Charles's physician was one of them. "Charles's doctor asked me to 'save his baby.' I told the Rolfes that if Charles was given a formula that contained more omega-3 fatty acids than the one he was receiving, he might improve, but he also could remain the same or even die," says Dr. Puder, who needed special approval from the government to use the experimental formula.

With Charles's health declining daily, the couple took the chance -- and the government approval came through. After a week, there were signs that it was working. After a month, his liver began functioning normally. Since then, Dr. Puder has treated 29 other infants with the omega-3 formula; two have died of unrelated conditions and the rest have improved. Says Dr. Puder: "The nurses on the floor thanked me that they don't have to go to as many funerals anymore."

3. Children's Healthcare of Atlanta

Current Research Studies: 668

Cutting-Edge Treatments: Established the Center for Pediatric Outcomes and Quality to study practices that may reduce medical errors and determine which treatments for specific conditions are most effective in children; designed a cushion-like device to simulate crawling and build upper-body strength in infants with spina bifida and other conditions that impede motor skills; and is refining a gene therapy that may in the next decade cure hemophilia A, a disorder that can cause internal bleeding with the slightest bump.

Compassionate Care: Provides a floor-wide party for a patient's birthday; pet-assisted therapy; a Mardi Gras costume party complete with fun floats (decorated red wagons); and massages for parents.

Community Focus: Gives training to school nurses; developed a physical-exam form to better identify high school athletes at risk for sudden death on the field from undiagnosed heart problems; joined with the state to boost immunization rates in Atlanta; and successfully lobbied for a state law to ban smoking.

Hope and Healing
Fifteen-year-old Jennifer Graham was pulling a rabbit out of a hat when James Tally, Ph.D., president and CEO of Children's Healthcare of Atlanta, first saw her. "She was entertaining the younger kids in the cancer ward with poise and charisma," he said. "I asked her how long she'd been doing the magic show, and she told me she got the kit last night. That's when I thought, 'This kid really is magic.'"

Over the next year or so, Dr. Tally often went to visit Jennifer, who had leukemia, and talk to her family. But she summoned him the day she found out that her cancer couldn't be cured: "She told me that she had been saving money for college by babysitting and working odd jobs, and that she wouldn't need it anymore. She wanted to give the hospital her savings, and she wanted me to tell her how her donation could be used. She decided to use the money to redecorate a room in the nearby Ronald McDonald House."

Since her death over a decade ago, the hospital has stepped up its oncology research and now enrolls 91% of its eligible cancer patients in a study. Dr. Tally's inspiration: "I look at Jennifer's picture on my bookcase every day I come to work."

4. Texas Children's Hospital, Houston

Current Research Studies: 795

Cutting-Edge Treatments: Identified the entire series of genes responsible for an increasingly common strain of staph infections that are resistant to often-prescribed antibiotics, paving the way for the development of more targeted treatments; was selected as the only U.S. training center for the Berlin Heart, a mechanical device that may be implanted in children who are waiting for a heart transplant; and developed a technique to reduce the time it takes to perform one type of scoliosis surgery by more than an hour, thereby reducing complications.

Compassionate Care: Provides DVD players and video game systems in every patient room; a playground with a wheelchair-accessible swing; classes to prepare kids who have a sibling in the NICU; and teen and preteen playrooms.

Community Focus: Set up a pediatric clinic in the Astrodome, which in 12 days treated more than 3,000 children who were victims of Hurricane Katrina; established three "medical homes" in low-income sections of Houston where children can receive free checkups and immunizations and be registered for nominal- or no-cost health insurance; and trained 40 technicians to check car seats. They performed more than 2,700 inspections in 2005.
Hope and Healing

Eighteen months into Cody Pendley's battle with a rare form of muscular dystrophy, he reached the lifetime cap on his health insurance. For Cody's medical bills to be taken care of, his parents, Deedy and Michael, faced a harsh decision. "We could abandon our child and he would become a ward of the state, so we'd have no say in his care; we could get divorced, and Mike would care for our other kids and I could claim abandonment, making Cody eligible for Medicaid; or we could put Cody in a state-funded nursing home," Deedy recalls.

For three days they agonized, and Deedy wouldn't leave Cody's room at Texas Children's Hospital: "Even though his body didn't work, his mind did, and Cody had definite preferences, like he loved Elvis tunes and hated country music," says Deedy. "He was a sweet-natured, happy child I absolutely adored." Just as the couple was making plans to liquidate a small retirement account and sell one of their cars -- a move that may have bought them another couple of months -- a financial counselor from the hospital stepped in. "He told me that the hospital's charity committee would cover Cody's bills for the rest of his life," recalls Deedy. "We were able to care for him at home, and I even got some nursing help, until he passed away surrounded by our family and friends when he was 4 years old."

In the midst of Cody's care the hospital gave her another gift, she says: "In conjunction with Baylor College of Medicine, Texas Children's finished mapping the human genome, and now doctors are able to tell what gene defect was responsible for Cody's condition and whether my other children are carriers. They're going to be tested when they're older," she says.

5. Cincinnati Children's Hospital Medical Center

Current Research Studies: 1,076

Cutting-Edge Treatments: Analyzes genetic codes to determine which seizure medication is best suited to an individual child; reduced the rate of hospital-acquired infections in babies on a ventilator more than sixfold from 2004 to the first seven months of 2006; and identified a protein that could be used to predict whether patients receiving kidney transplants need dialysis within the first week of surgery.

Compassionate Care: Provides knitting, scrapbooking, and ice cream socials for families and a clinical concierge nurse to coordinate outpatient appointments to multiple departments.
Community Focus: Has established a comprehensive weight-management program for kids as young as age 5; improved the percentage of children with chronic illness who receive a flu shot from 17% in the 19992000 season to more than 60% four years later; and runs the Psychiatric Intake Response Center to quickly link at-risk children to mental health services.

Hope and Healing
When Amy and Dan Witzigreuter learned that their newborn son, Paul, needed a liver transplant because he had a rare congenital condition that blocked the flow of bile from his liver to his gallbladder, causing rapid scarring of the organ, the family was at their local children's hospital. "The doctors didn't have a set time every day when they did rounds, so you couldn't plan to be there, and when a physician would order a medication it commonly took hours to be added to the treatment plan. We were fed up," says Amy.

Then the couple did some research of their own and found out that Cincinnati Children's Hospital Medical Center performs about 24 pediatric liver transplants every year and that nearly 90% of the patients undergoing the procedure are still alive three years later. Surgeons gave Paul part of Amy's liver when he was 7 months old and he's doing well now. "They took great care of Paul, and they also took great care of my older kids," she says, "helping them create books and pictures to express their feelings."

6. Columbus Children's Hospital, OH

Current Research Studies: 655

Cutting-Edge Treatments: Was the first U.S. hospital to use gene therapy to treat a child with a form of muscular dystrophy; is working on a vaccine to prevent ear infections; and is home to the Center for Injury Research and Policy, a program that identifies causes of injury-related deaths and disabilities in kids and offers practical suggestions for preventing children from getting hurt.

Compassionate Care: Provides sleeping accommodations for parents in 93% of patients' rooms; a supervised sibling clubhouse for brothers and sisters of patients; an expanded family resource center with laundry, fitness, and kitchen facilities; and plush dolls for children having an interventional procedure in the ER.

Community Focus: Offers a child-abuse prevention and treatment program; successfully lobbied for state legislation that allows moms to breastfeed in public; and offers free smoking-cessation classes for teens.

Hope and Healing
: Last January around 6 p.m., doctors walked into 3-month-old Jason Wolfe's room in the transplant unit of Columbus Children's Hospital to talk to his parents, Michael and Maria. It was Friday the 13th, and despite the date's reputation for being unlucky, doctors told the couple they had found a donor heart and lungs for their son, who just after Christmas had been diagnosed with a severe case of primary pulmonary hypertension -- a condition that prevents a normal amount of blood from flowing into the lungs and caused Jason to crash more than a half-dozen times in the two weeks prior. But there was one more detail the doctors still had to mention.

Across the hall from Jason was 2-month-old Kayla Richardson, who was diagnosed at birth with a congenital heart defect and required a heart transplant. Both families had met each other in the hallway -- they had even talked briefly -- but on this day they would be tied together forever. Says Maria: "The doctors asked us if we'd be willing to donate Jason's heart, which was only being replaced because it's much more difficult to transplant lungs alone in a small infant, to a little girl in the hospital."

The little girl, the Wolfes immediately realized, was Kayla. "The doctors weren't finished asking the question before my husband and I were nodding yes," she recalls. And so, a "domino" transplant -- the only one attempted in the U.S. in the last 10 years -- was performed. First, a team of doctors removed Jason's heart and lungs and replaced them with the new organs. And then Kayla received Jason's heart. Kayla is doing well, the hospital reports. "Jason has exceeded all expectations," says Maria. "He's shown no signs of infection or rejection. He crawled at 9 months and is going to start walking any day now."

7. St. Louis Children's Hospital

Current Research Studies: 405

Cutting-Edge Treatments: Is home to the world's largest pediatric lung-transplant program; helped discover that a deficiency of copper may cause birth defects, opening the door for women planning to conceive to be screened before pregnancy; and is one of a handful of pediatric centers in the nation with a program to surgically repair the eyesight of kids with special needs, such as children with cerebral palsy.

Compassionate Care: Has a rooftop garden with more than 7,000 plants and flowers, waterfalls, and two ponds filled with goldfish; music, art, and horticultural therapists; a newly designed NICU featuring private rooms with bedside sleeping accommodations for parents; game shows for patients to play via the hospital's closed-circuit TV station; and free meals for mothers who are breastfeeding.

Community Focus: Constructed 32 new playgrounds throughout the city; advocated for the recently passed state legislation requiring the use of booster seats from the time children outgrow their toddler car seat to age 8; and piloted an innovative program in three of the city's public schools that reduces absences due to asthma by as much as 30%.

Hope and Healing
The pain in Jenny Steinmann's hip started inconspicuously enough: "I was in eighth grade when I got a dull ache, but as soon as I would take ibuprofen, it would go away," she says. "I didn't think it was anything serious." Her parents didn't think it was anything serious either -- and her pediatrician attributed the ache to a pinched nerve or pulled muscle. But the pain persisted, and a few months later Jenny got her hip X-rayed. "The bone looked all marbled, and the doctor said he'd need a biopsy to determine whether it was one of two different types of cancer or one of two different kinds of bone disorders. I thought it was a bone disorder," she says.

It wasn't. She had Ewing's sarcoma, a rare and particularly lethal form of bone cancer. And further tests showed that cancerous cells had spread to 12 sites, including her vertebrae, femur, and skull. "While my mom didn't want to leave my side, my dad was at the library, researching whether we should fly to another hospital," she says. He concluded that St. Louis Children's Hospital, less than 30 minutes from the family's home, had the know-how and the resources to cure her.

Jenny's course was aggressive: She went through 10 months of chemotherapy and six weeks of radiation, then received a stem cell transplant, in which her own stem cells were extracted and returned to her after extensive therapy. "My hip pain subsided a week into treatment," she says. And after a year and a half of treatment, further tests didn't detect any cancerous cells in her body. Jenny returns to the hospital every summer and winter for a checkup and for the last five years has received a clean bill of health.

8. Rainbow Babies & Children's Hospital, Cleveland

Current Research Studies: 169

Cutting-Edge Treatments: Develops techniques and designs equipment for minimally invasive neurosurgery for brain tumors, reducing recovery time and increasing safety; was awarded the highest designation in the care of epilepsy from the National Association of Epilepsy Centers; and co-founded the world's only school focusing on providing safer alternatives to pediatric blood transfusions.

Compassionate Care: Provides a session with a psychologist and social worker for every cancer patient; a mental health care program for parents with babies in the NICU; and an outdoor playground with giant flower canopies for shade.

Community Focus: Launched the Children Who Witness Violence program to break the cycle of domestic violence often learned in the home; promotes the safe storage of firearms in homes and distributes free trigger locks; and trained 24 technicians to check car seats and gave a refresher course to another 71 in 2005.

Hope and Healing
Rhiannon Kerkel, Shari and Michael's newborn daughter, was rushed to Rainbow Babies & Children's Hospital because the facility where the baby was born didn't have an NICU. Moments after her arrival, Rainbow's doctors called her parents to assure them their baby was still alive and was likely suffering from hypoxic-ischemic encephalopathy, a condition that often occurs when the brain fails to receive enough oxygen either in the hours leading up to birth or during labor and delivery.

The physicians asked permission to enroll Rhiannon in a study examining whether a blanket that cools a baby's body temperature by a few degrees would reduce the risk of death or the degree of brain damage in infants with this condition. About a year after their daughter was cooled with the blanket, the published results of the study conducted on 208 babies from the nation's 16 centers that are part of a government-funded neonatal research network were compelling: 24 of the 104 infants cooled with the blanket died, compared to 38 who received the standard treatment, and 44% of the "cool kids" suffered from a moderate to severe disability, compared to 68% of those babies whose temperature wasn't lowered.

As for Rhiannon, now 2, there's barely any reminder about her rocky start in life. She loves going to the playground, takes classes at The Little Gym, and as her mother puts it, "has an intimate relationship with Blue's Clues." Adds Michael: "Even if she couldn't do these things, I just love to hear her laugh."

9. Children's Hospital of Wisconsin, Milwaukee

Current Research Studies: 753

Cutting-Edge Treatments: Administers a long-acting injection of insulin so some children newly diagnosed with diabetes can be treated in the hospital's outpatient clinic rather than be admitted; has received national acclaim for rabies treatment and research; and at press time, planned to open a state-of-the-art research facility in January to study important pediatric conditions including middle-ear infections, kidney disease, and hemophilia.
Compassionate Care: Provides a visiting artists program, which includes creative projects that patients receive help making; a sibling day every year for brothers and sisters of cancer and transplant patients; an on-site dry-cleaning service for families; and custom-designed freezers in the NICU to allow the storage of breast milk for a long period of time.
Community Focus: Teaches an injury-prevention class for preschools and kindergartens; offers a weight-management program for local children; and distributed 1,000 free bike helmets at area events in 2005.

Hope and Healing
Just a few nights after Kailee Wells celebrated her fifth birthday, she woke up with her pajamas covered in blood. Practically out of the blue, she was vomiting clots; the only previous sign of trouble was a fever and headache she had developed earlier in the week.

Her symptoms concerned doctors enough that they admitted her to the intensive care unit and put her bone marrow under a microscope. "The doctor came in and told my husband and me, 'The good thing is that it's not leukemia and the bad thing is that it's something worse -- severe aplastic anemia,'" says her mom, Linda.

Kailee's body practically stopped making cells that carry oxygen, fight infection, and control bleeding. She immediately received a blood transfusion and intravenous medication. "But she steadily grew worse, and my husband and I learned that Kailee was the only patient with severe aplastic anemia ever treated at our local hospital," says Linda. "We knew that we couldn't stay."
Research sent the family, who lived in Albuquerque, to Children's Hospital of Wisconsin, a pioneer in the field. It has one of the largest programs in the country for performing bone marrow transplants with unrelated donors to treat severe aplastic anemia. While getting bone marrow from a sibling is ideal, Kailee doesn't have one, at least one her family could find. The Wellses had adopted her from a Chinese orphanage, whose officials told them that the baby had been abandoned on the steps of a teachers' institute.

The Wellses moved to Milwaukee, and they and the hospital embarked on a worldwide search for a donor who was Asian -- because that would provide the most likely chance of a match. In November 2005, just one day before the family was to leave for China to implore residents to get their marrow tested, a perfect match came through, from a man who heard about Kailee in the news during Linda's last visit to the country. The hospital's translator arranged with Chinese health officials to send a courier to fly back with the lifesaving marrow, and Kailee received the transplant. A couple of weeks later, her blood counts started to rise, and she has improved gradually ever since. Says Linda: "By next year, she should be able to fend off infections well enough to meet the man who saved her life."

10. The Children's Hospital in Denver

Current Research Studies: 643

Lauren Lewakowski, 16, and her dad biked 54 miles through the mountains of Colorado during a charity race in July 2005. Lewakowski didn't care how long it took her to finish -- the fact that she was cycling at all was a huge victory. She was born with a condition in which the ball of her hip was impinging on her socket, and from age 8 until about a year before the race, she was in pain. "It had gotten so bad that she couldn't climb the stairs to her bedroom without crying," says her mom, Cathy Lee, who underwent hip replacement at age 36 for the same condition.
Compassionate Care: Provides yoga therapy for cancer patients; teen karaoke nights; a patient art gallery; an outdoor playground with a padded floor; and camps for siblings of patients.
Community Focus: Offers a nationally renowned weight-management program for kids; lends specially designed car seats to families whose kids have a cast; and sponsors clinics to distribute free flu vaccines.

Hope and Healing
Lauren Lewakowski, 16, and her dad biked 54 miles through the mountains of Colorado during a charity race in July 2005. Lewakowski didn't care how long it took her to finish -- the fact that she was cycling at all was a huge victory. She was born with a condition in which the ball of her hip was impinging on her socket, and from age 8 until about a year before the race, she was in pain. "It had gotten so bad that she couldn't climb the stairs to her bedroom without crying," says her mom, Cathy Lee, who underwent hip replacement at age 36 for the same condition.
Hoping to spare her daughter from a fate like her own, she scheduled an appointment for Lauren with Ernest Sink, M.D., at The Children's Hospital, Denver. He's one of a handful of doctors in the nation with experience performing periacetabular osteotomy, a complex surgery that rotates the hip socket so it better covers the ball joint. Just two months after the operation on her right hip, she hiked up a 14,000-foot mountain; three months after that she went snowboarding. The operation improved her life so much that she's scheduled surgery for her left hip. Says her mom: "Imagine what she'll be doing then."

The Runners-Up

Runners-up in Child's 2007 10 Best Children's Hospitals survey:
11. Riley Hospital for Children in Indianapolis
12. Morgan Stanley Children's Hospital of NewYork-Presbyterian in New York City
13. University of Michigan C.S. Mott Children's Hospital in Ann Arbor
14. Monroe Carell, Jr. Children's Hospital at Vanderbilt in Nashville
15. Children's Hospital & Regional Medical Center in Seattle
16. Children's Hospital of Pittsburgh
17. Children's Mercy Hospitals & Clinics in Kansas City, MO
18. Children's Memorial Hospital in Chicago
19. Lucile Packard Children's Hospital at Stanford in Palo Alto, CA
20. Children's Hospital of Iowa in Iowa City
21. Children's National Medical Center in Washington, DC
22. Rady Children's Hospital-San Diego
23. Childrens Hospital Los Angeles
24. All Children's Hospital in St. Petersburg, FL
25. Children's Medical Center Dallas
26. Miami Children's Hospital
27. Children's Hospital of Michigan in Detroit
28. Medical University of South Carolina Children's Hospital in Charleston
29. Primary Children's Medical Center in Salt Lake City
30. Yale-New Haven Children's Hospital in CT
31. Schneider Children's Hospital in New Hyde Park, NY
32. Wolfson Children's Hospital in Jacksonville, FL
33. Children's Hospital of Orange County in Orange, CA
34. Alfred I. duPont Hospital for Children in Wilmington, DE
35. Akron Children's Hospital
36. Hasbro Children's Hospital in Providence
37. Cook Children's Medical Center in Fort Worth, TX
38. Mayo Eugenio Litta Children's Hospital at the Mayo Clinic in Rochester, MN
39. Kosair Children's Hospital in Louisville, KY
40. Children's Hospital in Omaha

Our Advisers
The following professionals contributed to the development of our 2007 children's hospital survey: Michael Artman, M.D., physician in chief at Children's Hospital of Iowa;

Michael Cohen, president of the Institute for Safe Medication Practices in Huntingdon Valley, PA;

Richard A. Ehrenkranz, M.D., professor of pediatrics at Yale University School of Medicine in New Haven, CT;

Fran Griffin, a director at the Institute for Healthcare Improvement in Cambridge, MA;

G. Denman Hammond, M.D., founder of the National Childhood Cancer Foundation in Arcadia, CA;

Gary Larsen, M.D., a pediatric pulmonologist at the National Jewish Medical and Research Center in Denver;

Jordan D. Metzl, M.D., medical director of the Sports Medicine Institute for Young Athletes at the Hospital for Special Surgery in New York City;

Richard L. Saphir, M.D., clinical professor of pediatrics at Mount Sinai School of Medicine in New York City;

and Barbara Woodring, R.N., Ed.D, former president of the Society of Pediatric Nurses and director of the Byrdine F. Lewis School of Nursing at Georgia State University.

Representatives from Children's Healthcare of Atlanta, Children's Hospital Boston, Children's Hospital & Regional Medical Center in Seattle, Texas Children's Hospital in Houston, The Children's Hospital of Philadelphia, and the University of Minnesota Children's Hospital, Fairview also participated in the review of this year's survey.

The following pediatric experts provided guidance for past children's hospital surveys, and their input was considered when compiling this year's survey: Joel Cohen, M.D., Mesa, AZ-based internal medicine physician and author of ER: Enter at Your Own Risk; W. Lawrence Daniels, MSN, assistant professor, School of Nursing at Hampton University in Virginia; John Delahay, M.D.,vice chairman of the department of orthopedic surgery at Georgetown University Hospital in Washington, DC; Richard A. Ehrenkranz, M.D., professor of pediatrics, Yale University School of Medicine in New Haven, CT; Keith Gabriel, M.D., Springfield, IL-based member of the American Academy of Pediatrics's executive committee on orthopedics; Sigmund J. Kharasch, M.D., director of pediatric emergency medicine at Boston Medical Center; and Anthony Stans, M.D., pediatric orthopedic surgeon at the Mayo Clinic in Rochester, MN.

Instincts

2007-12-14T18:10:00.000-08:00

I am confused. I used to think that my instincts were somewhat reliable, but I just don't know anymore. Throughout my pregnancy with Penn, I couldn't shake the feeling that I wouldn't be able to get to hold him, and though I felt as though I was not connected to my growing baby, I felt like I should have been. I couldn't imagine life with a newborn, and what my life would be like when I had him in my arms...if I ever did.

During week 37 I was catapulted into a feeling of being certain that something was wrong with him, and it was a feeling I couldn't shake for the next two weeks until on Mother's Day I gave birth.

Now with this baby I feel like I am not even pregnant. And, I cannot imagine my life with this baby.

I just wonder how much of this "instinct" has to do with the fact that in the past two years I have lost my brother, my dog (best friend), and my son. And, I wonder if this has to do with my motherly instinct. I just cannot decipher.

Dreams

2007-12-14T08:52:00.000-08:00

I awakened this morning, not quite as usual, instead of the alarm, which had already been tapped on snooze, my littlest dog was getting sick to her stomach, just as I rounded the corner out of my room there goes projectile vomit spewing from her kennel, where I keep her at night. And, I had just mopping the floor! For some reason, all of the female dogs we've had have had this problem of being finacky eaters, and therefore when they get really hungry because they've protested their nightly or morning meal, the puke, my guess an unsettled stomach. Well, she ate her morning meal like a champ after that! My guess was probably correct she was hungry!

I ate breakfast with my husband as I usually do, but then my dream came back into my mind. Last night, I dreamt that Penn was alive again. He was laying on some table, and I knew he was gone, but because his skin was scaly I decided to put lotion on his legs and feet like I had done so many times before he passed. I started rubbing it in, and his leg began to lift up, on it's own. Then he started moving, as if all he needed was a little stimulation to come out of his deep sleep I knew as death. He opened his eyes, and looked at me as though he was stunned to be back in his body. I quickly picked him up and held him just thanking God that he was with me again. I craddled him, and went to wake someone up to show them that Penn was alive! She didn't seem too aroused by my news, which I didn't mind, at least I was holding Penn.

I used to pray to God that he would allow me to be with Penn in my dreams. I missed him so much, but I could never remember a dream whereby my prayer was answered. Last night it was, but ironically enough, it's after I realized yesterday how I was moving on. I don't think it's that complex, but it's ironic.

Before I fell asleep last night I read a short story about Christmas mysteries. The short story was called Live Tree. In the story, the main male character's brother shows up unannounced on the doorstep after having been let out of prison for good behavior on the holidays, with the contention that he'd return to prison. He brought with him a live Christmas tree to plant for the family. He spent three or so days with the family. But, after he left, they found a letter that had been mailed from the prison just days before his brother arrived. It was a death notice informing them that Willy had died of pneumonia, BEFORE he arrived at their house. So, as it appeared, Willy's ghost is the one that visited.

Undoubtedly, I went to bed thinking about this idea, and it happened that my dream involved Penn's ghost. I just wish that I didn't have to wake up thinking about it. Because even though it was so fresh the minute I awakened, I cannot feel what it was like anymore in my dream to hold him.

tesing

2007-12-13T15:13:00.001-08:00

testing

Another corner in the road to healing

2007-12-13T15:02:00.000-08:00

Today is 11 days shy of being three months since my son passed. I moved seamlessly through my day on autopilot, going to lunch with my husband, coming home, walking the dogs, sweeping, vacuuming, mopping, dusting, waxing and sweeping again (this time outside). I am just a bit exhausted.

Today for the first time, I could not cry really when going through the cards people sent to us when Penn died. I was going through the cards to complete my Christmas card mailing list, and just teared up, but something came over me that prevented me from crying.

It's as though I am beginning to go through the first part of this journey all over again. The first couple of weeks were surprisingly easier than month one to month two. It was fresh in my mind, but adrenaline I guess kept me sane, and then reality kicked in, and the pain of not having Penn came full force. Just about that time is when people started not being as available to talk, and I guess moved on with their lives. It was time for me to move on with mine to, I guess. But, how do you move on, when you want to hang on to every single memory, every single thought, hair, smell, touch of your child that is no longer with you? It's like being stuck in quick sand. The harder you try to get out of it, the deeper you go, until finally the top of your head is the only thing remaining above the line of sand the encompasses you.

Today, I feel as though a force, perhaps God, pulled me out from the sand which quickly was sucking me under. I feel still in shock but alive. I am still covered with the icky mess, and some is still in my lungs, but I am not in that pool of sand, sinking to my grave anymore.

Van Morrison

2007-12-12T14:47:00.000-08:00

It is so completely disgustingly cold outside, and I have four layers of tops on. The grass and trees look greener than ever, but I feel as though I have been transported to Greenland. At least somewhere in Greenland I have fascinated about, as I have never had the privilege to travel to the vast land, I have to dream about what it would be like. It's wet as can be outside, it actually reminds me a little of Washington state.

We used to live there, in the Seattle area. I grew up on Whidbey Island until I was 12, when we moved to Texas. I reminisced of those days on the green shady Island cool, but sunny until I returned when I was 22 after graduating from TCU. But, it wasn't exactly as I remembered it, and was glad to move back to Texas.

Recently I have watched two inspirational movies, as I am a movie watching guru. Namesake, and God Has Grown Tired of Us, both profound movies about the human spirit and the human culture, have inspired me to think about life a little differently. It's not just what exists beyond the end of your nose. There are worlds out there that are in fact different than mine. Most people fall into the habit, much like I have of being ego/ethnocentric. You only concern yourself with what is immediately important, and work yourself into a lonely place, though surrounded by others, you can't help but feel alone in your world.

These two movies made me realize how sad our culture here in America is. By sad, I mean literally, not that it's pathetic, but we are literally a nation that is sad. We inwardly seek to strive for better not realizing it is at the sake of our happiness. We live in a world crammed full of others, but we never even raise our heads to say hello, and when someone digs through the trash for a bite to eat we look the other way as if ignoring him or her will make it go away, after all it is so 'uncivilized'. We trick ourselves into thinking that we are better than everyone else, and our lives are the most important.

Perhaps I am going through a midlife crisis, but this doesn't seem right, and it doesn't seem like a great world to live in, but we do live in it and we do ignore others, and we do surround ourselves with mirrors so that we can always look our best reminding ourselves that we are...the best that is.

I titled this blog Van Morrison, because I have brainwashed myself today with his CD Blowin' Your Mind...while I researched umbrella non-profits, called Easter Seals of Central Texas, and others, and cut Penn's pictures out for insertion into our Christmas cards. Now I have to go build a fire, as the temperature is decreasing as I type!

Begging an Attorney

2007-12-10T12:51:00.000-08:00

Penn's pulmonary hypertension being a pre-existing condition as well as his complete AV canal are the reasons he had surgery in the first place, and should not preclude a lawsuit on that basis. It was inevitable at some point, however, one physician at Texas Children's (where we had him transferred on September 6) suggested that Penn should not have had his surgery at such a young age, and with such high pulmonary hypertension, that they are actually contrainidications for surgery. His thoracic duct had to have been cut during surgery as well, as he developed chylous pleural effusions which dumped over 300 ccs/day on each side, with insignificant decline when put on non-fat and ND feedings. He was also given calcium to rescusitate him during the process of being given inhaled anesthia before surgery, which was never conveyed to the surgeon, and therefore he put in his note to that effect, as well as to point out that it made him suspect infant myocardium damage as Penn's calcium levels got exceedingly high on CPB.

During his course of treatment or lack thereof at Methodist, he was not given proper nutrition for most of his stay; his intake was 10-17 ccs/hour most of the time. Only upon our inquiries did the physicians increase his intake. He developed blood clots throughout his body, and it can be traced back to the medical director dc'ing his Heparin post-surgical drip order. His AT3 was not followed despite the fact that on day one post-op it was noted that he had subpar albumin, and his heparin had been dc'd. On day three it was noted that he was in mild DIC (disseminated intercoagulopathy), but that it would not be corrected due to the fact that he was not 'bleeding'. He had clots in his bilateral femorals as well as his IVC, and finally in his SVC and around his heart. There were signs of this, that were not identified by physicians, such as hematomas all over his upper body. They did an ultrasound of his SVC at the time, but couldn't find anything and never re-examined the issue, until they found a clot by trying a procedure for dialysis called CVVH, which didn't work because there was no drawback on the needle indicating a clot. They never figured out what the hematoma was from, and never bothered to really address it. There are many reasons that you should look at our case, too numerous to list in this email. I know that the case has to be intelligible to a jury. I understand that it is easier to take on cases whereby there is gross malpractice, but I beg of you to please please really consider our case. I know I cannot bring my son back, but I pray that something changes at Methodist because of what happened to my son. There are other children there that were going through very similar complications, and never should have been. Have you heard of the story about Josie King? Please I beg. Do not decline us based on the fact that you don't see 'gross' malpractice nor on the fact of proposition 12. PLEASE!

Ink blots

2007-11-30T14:49:00.000-08:00

Today is a better day than the last two. I haven't been on the verge of tears but once. I went to lunch with my husband and then again with a friend. I didn't eat two lunches, but I did enjoy a piece of pecan pie, which could have been considered a lunch.

Christmas tree is up and lit. Grocery shopping is done.

Still have to finish the bylaws for the PENNriver Non-Profit. Our first board meeting will be on January 12. We will be going over Articles of Incorporation, Board officer elections, and bylaws, and strategic plan. I have the strategic plan complete, but will be postponing contacting a CPA until we elect the treasurer. I hope someone will want that position, because I sure do not want to be responsible for the financial aspects. We will have a yearly fundraiser, which is exciting. It's great that including me there will be 8 other women on the board! Yeehaw! It's great knowing others are behind your cause.

It's an advocacy organization, which in the beginning will provide education to clinicians (clinician to clinician) and then to parents, and finally through the form of an actual advocate in special situations. I am anxious to get input from the rest of the board.

Penn's little brother or sister

2007-11-29T11:43:00.000-08:00

Well, got the sono on Tuesday. Says I am a little farther along than what my FP says. Says I am 11w3to5days, and that the baby has a normally long nose, and small amount of thickness in nuchal area, both signs that no DS present!

Everyone is happy. They are glad this will be a healthy pregnancy. It irritates me. To me it is like saying that Penn was not healthy, that he was not a good pregnancy. Dammit to hell. He was healthy, he was perfect, and the pregnancy was not unhealthy.

I cannot have Penn back. I know this, but the deranged part of me fantisizes about God giving me Penn back through this pregnancy. The maternal-fetal med doc also says with 80% certainty that it'll be a girl. Told people that God has a sense of humor, so much so he would give us a non-down girl, the opposite of Penn, which is what I really want (Penn that is).

My husband says I should be happy. I should be thankful. I am thankful that I am pregnant. That I will have another chance to squeeze precious little toes, and massage precious little legs and arms, hands, and head.

If she doesn't have DS, heart defect, and is a girl afterall, I at least hope she has Penn's hair!

Little bean

2007-11-23T07:45:00.000-08:00

On Tuesday the doctor tried to get a heartbeat. At 10 weeks, you can typically find one. He could not. He said it was his equipment, but non-the-less, though he could feel that my uterus had grown, he had me get "pictures". I am glad he did. They were great. I saw the little beaners feet and hands moving around, as he tried to turn over. It was so fun.

This coming Tuesday I will be going to Austin to a Maternal Fetal Medicine Doctor to get a sonogram to see the nuchal translucency thickness, and some blood work. She'll also be looking in detail at all parts of the body and organs to determine if there are any abnormalities that she can see. If the sono is "good" with no sign of issue, I will be getting a second opinion.

Seek the Kingdom of God

2007-11-18T14:46:00.000-08:00

Today in church the pastor shared with us Isaiah 52. He also spoke of IICorinthians 5:14, and Deuteronomy, as well as Romans 6. Perhaps the most interesting testimony of the mockery of Grace Christians display is to think that they can get away with things because they will be forgiven. In Romans, Peter said something to the effect that "God forbid we sin more to enjoy abundance of Grace?"

Interesting. The pastor suggested rather vehemently that Western Christianity has a huge problem. We are fine as long as we're saved. We don't seek the Kingdom of God, we do not allow ourselves to want. We do not sacrifice for the purpose of God. If we see it, we look. If it smells good, we eat it. If we want it, we get it, do it, go after it...but do we have our sights on the Kingdom when we do? Do we seek to Love God, or to love ourselves and our own selfish sinning desires?

He's right. We do have a big problem. We do not know what it is like to subject ourselves to little.

I have a nice home. I have a wonderful husband. We have nice cars, we eat well. When we feel like going out to eat, we do. When we feel like renting a movie or vegging on the couch we do. When we would rather stay at home than to socialize we do. When Penn was with us, for a good period of time we didn't allow our in laws to take care of him. Mostly out of fear, but partly because WE wanted him. Our selfishness was to keep him all to ourselves. When he was in the hospital, though I was advocating for him, I don't think I was seeking the Kingdom of God. There were times I felt like I had become possessed by some evil force, and couldn't shake it. I had a very hard time stepping back, and I was in that moment, not seeking the "Kingdom", for God does reign, but for me, he was not in control. The control was had by "me", not the Kingdom.

I don't blame myself. It is human nature to be contrived, to lean on your own understanding, and to stand behind a wall of defenses when you're in a battle. There was no other way I knew how to be. Though I was "saved", confessed Jesus as my savior at the age of 14, I have been seriously in need of a stronger relationship with the one who walks beside you in the valley of the shadow of death, for a long time now.

I do wonder. I wonder whether having more faith, and being able to relinquish a little control to my savior, to my God, would have helped the sour relationships be less so at the hospital.

When I say control, I do not mean advocacy. I mean, bitterness, and thinking that the doctors have all of the answers. I relied on my own understanding, and your own understanding can only get you as far as your knowledge takes you. When you step out of the realm of your knowledge, you really have no choice but to turn over control in some respect. I would never say that I should have relinquished the control to the doctors, but to God. God is the only one to seek wisdom, power, knowledge, grace, faith, courage and strength from...

I had a friend tell me on week three to "let him go." I thought, "are you mad??" She is a very strong believer, and what I think she was trying to say is that I needed to let God take the wheel. I never really did, though I prayed like I have never prayed before, and though I kept my head high and didn't cry until the end really, I never really allowed God to take the wheel.

What's the definition of insanity? Doing the same thing over and over, expecting different results. Though I smashed the car into the wall, wrecking every time, what left I had of the car I continued with the insanity.

I think this morning's message was one of great importance in my life. One I will meditate on.

Sunday...just some thoughts

2007-11-04T13:15:00.000-08:00

I awakened this morning exhausted, maybe it was the new time falling back one hour. It was light outside but 7:30 a.m. which was a little confusing to my senses. It was a little like being off balance. Brad went to work like he has been on the weekends lately, and I watched Joel Osteen. The message was good, one of restoration. God will restore those things that have been taken, your joy, your peace and the time you have lost in the battles that you go through. Hmmm....food for thought. Immediately I pondered this new miracle growing inside of me, and wondered if my joy would come back once I get to hold the angel. He, Joel, also said, that you need to persevere through what you feel like you can't do anything else about but give up on, and it's so important, because your destiny hangs in the balance.

The crossroads in life is defined. When you feel like "what is the use" or "I can't do this anymore", do not give up. Keep going. Lean on God's word, meditate on His presence, and see it through, whatever obstacle or situation that is tough through to the end.

Made me think about my desire to sue, and the two attorneys whom I contacted saying, "no way" basically. Well, a friend suggested, not even knowing at first what I had heard this morning, to not give up, keep trying, and start calling attorneys in the phone book even. It worked for her. Well, hmm.....another morsel to ponder. I have decided to take the advice that "reigned" down on me today, and begin the real search for someone to hear our case.

I spent the rest of the day cleaning, playing with my dogs, walking with Brad, sewing some Christmas gift bags, and cutting my roses back. I have to water my trees by hand soon, but I think I will rest. Being pregnant in the early phase can be very exhausting. I haven't had any down time today, which I usually get, so I will rest now before watering the rest of my trees.

One last thing, I had dinner last night with one of my friends who lost her son six years ago. She and her husband were also told that there is a one in four chance that they would deliver another child with SCIDS ("Bubble boy" syndrome). They have three healthy children, and one that was not. I hope and pray that our new bean is healthy, and will not require any type of surgery, and will be able to grow up with us.

Family

2007-11-03T08:26:00.000-07:00

When I was five years old, my father called from Japan, and told my mother, then mother of three living in a shack of a trailor that every time summer hit the ants would take over like they were Hitler in Germany, and told her that he didn't love her anymore and he wanted a divorce.

Long story short, she filed and they split ways, but not before my mother could shack up with another sailor, my soon to be stepfather, but only because my mother would have been brining into this world an illegitimate child. She was seven months pregnant when they married. He had two children already from a previous marriage to a woman that smoked pot and possibly crack when she was pregnant with my new step brother and step sister. You could tell too. Any time you spoke to them it was like speaking in slow motion whereby sometimes they would just look at you with a blank stare.

So, when I was I don't know twelve I found out that the disgusting pig had raped my brother of his innocence, beginning day one of our new life with the monster. He and his children also defiled me and my sister and we would never be the same. Did she run for her life with her children? No, we stayed, and my mother knew. My brother was kicked out of our house when he was sixteen.

My brother - he had an elevated IQ, and never knew his real father. It destroyed him. My step father destroyed him. My brother was in and out of jail searching for love. He stole his boyfriends vehicles and his relatives checks and landed himself in the Pen for two and half years. At the age of 30, he supposedly died of a heart attack in prison. We layed him to rest in April of 2006. I still think, "I wish I could call Jerry." It's strange thinking of him in past tense. He was my big brother, and a goober! He was so intelligent, but not smart enough to stay out of trouble. He had so much talent, but at an early age his innocence had been taken from him. That's what happens when women that don't care to do right by their children end up pregnant every time they inhale. Don't get me wrong, my mother is my mother, and I still love her, she's all I know.

So I am married, my sister who is possibly my "real" sister is attending school right now trying to get a degree in Early Childhood Education. We're really proud of her, she's putting herself through school. The other two siblings. Well, there father is my step father, and well, they are only ten months apart in age. They are tweny and twenty-one right now. Guess where they live? One lives with my mother in the "double-wide" trailor she moved up into when I was fourteen that has holes all over the place in the ceiling, the floor and in which one of the bathrooms is falling through the floor, maintaining no job, no high school diploma, no GED, no anything except living off of my mother. The other is living with her boyfriend, who is the brother of her ex-boyfriend who got her pregnant at 14 whereby she ended up giving birth to her stillborn son. She is working without a GED, without a highschool diploma changing lightbulbs for $1 / piece all over Houston. She got pregnant with twins recently and lost that pregnancy too.

And, then there is only me left. I graduated Texas Christian University in 2002, with a Bachelor Degree in Psychology. I have worked in over 20 different types of positions, from McDonald's to an Oil Company, from a Home Health Aide to a man with MS, to a Behavior Therapist with Autistic children, from an Event Coordinator to a physician education assistant, from a secretary for a Security Exchange Attorney to a Family Therapist for a social worker, from a Personal Trainer to a Tai Chi Instructor, from an Entreprenaur selling my own homemade power bars, to an assistant in a gym, I have done it all. There's more, but not to exhaust the reader I will stop here. Why so many jobs, why so many tries? I guess to find fulfillment. I never thought I wanted children.

And, then there was Penn. He changed my outlook. He changed my life. When I see children now a certain sense of love comes over me, and I just cannot explain it. I want to watch my child grow up, and to be able to be the best mother out there. I found my calling, and then just in a blink he was taken.

Some people think that I probably need counseling, but you know, it's those that have never lost a child that think this, it's those that do not know what it's like to have some one so precious, so innocent stolen...I say to those people do not pass judgement on those you know nothing about. Yes, I have anger, yes, I am dwelling, but each day that passes gets a little less painful not in a measurable way, but in a fraction of a fraction of the smallest possible measurement...time, and time, and time will repair, but this is the biggest scar that one can ever imagine, and you will probably be able to see it on me for the rest of my life. Besides with all of the money the doctors stole from us, there's nothing left for plastic surgery.

Rants about riches

2007-11-02T11:16:00.000-07:00

Do you ever stop to think what really makes the world turn, what propels us forward? Every day you either get up to go to work, or you get up to see someone off to work, or you go to school so that one day you'll get a good job, and you guessed it....go to work. Why do you work? Is it really to find fulfillment, no, it's to be able to live. Do you ever wonder how you make it to the top? First on the list, have money.

If you weren't born into money, then you need to know people with money.....and so the world turns.

Some of our most profitable companies fund wars, so that you guessed it, they can make more money selling the parts to assemble the ammunitions. Where are the moral people, where are people's ethics? Were there ever any?

I am soo sick and tired of the first question on everyone's mind when you have a great idea, is, where will you get the money. Hmmm....maybe I should sue the government for taking all of the money that they do from my check. I should sue them because they are so unwilling to give it back to you when you need it. They consider "how much you make"...as if you'd be asking if you didn't need to be?

For all of those out there who haven't seen the movie Idiocracy, I suggest you rent it. No doubt, with all of the funds given to those on welfare, and the women out there popping out babies like chickens do eggs, our world will end up an illegitimate place of turmoil...already is. Not quite as bad yet as the movie portrays, but seriously we do have some major idiots in control.

I spoke with an attorney yesterday unwilling to take on a suit for us because the good 'ole boy state of Texas, with the emphasis right now on big business has imposed a non-economic cap on suits of $250,000. It would cost close to $100,000 to even get the case in court. Then because it is convoluted, with many physicians involved, it would be impossible to get the jury to see your case clearly. Well, the real reason the cap was imposed was not to stop frivolous lawsuits, but to quell lawsuits, knowing no money sucking attorney out there would get within 10 feet of the matter if he knew he might be out some doe. The real reason to impose such a ridiculous piece of tort reform was to keep doctors and not lose them to the over demand of you guessed it money from the insurance companies to get malpractice insurance.

You spend 2 months in Intensive Care, with your insurance cap being met of $1million dollars and the highest amount you can sue for is $250,000???? Brilliance. You are truly at the mercy of those with the money.

Then, instead of suing you try to do something positive, hoping that maybe there's a way to get the message out there?? And, you consider something like, I don't know, a bracelet that costs 35 cents to have produced, and you get the comment, where are you going to get the money for that....hmmm....maybe I should bribe the morons that made it necessary for me to think of such a ridiculous notion in the first place. The doctors.

Sorry if I have offended anyone, but that's how one rants.

Pumpkin

2007-10-31T13:01:00.000-07:00

Today is Halloween. I told myself several months ago, that I was going to dress Penn up as a Pumpkin. I saw a little outfit at Old Navy a couple of weeks back, and was tempted to get it. The outfit was so adorable. It saddens me that he won't be going trick or treating, and he won't get to be a pumpkin.

I did a lot of house cleaning today. It passed the time. I think I am going to wash my dogs next, they're pretty stinky. I have to cook dinner for Brenda, so that will also take some time.

Sometimes I wish there was a button on this time machine we know as life that allows you to reverse, or just even pause. It would have been nice to press pause and enjoy more the time Penn was here. It's amazing to me how the sun keeps rising, and the moon keeps cycling, and the ocean tide continues to come in and go out, no matter what happens. Armageddon could happen today, and it still would not stop things from going on. It's amazing.

Pedicures for P.E.N.N.

2007-10-30T19:42:00.000-07:00

I just had an idea: Pedicures for P.E.N.N. - Parents who've Experienced Negligence with a Newborn. It would be the name for a group to advocate on behalf of families like ours. Also, the Pedicure bit could be a fundraiser to maybe fund the professional printing of pamphlets or brochures, or whatever that would help spread the word. Local shops that offer pedicures would increase their price by one dollar for one month to donate on behalf of the cause, and then when women are sitting there getting the pedicure they can read about the cause and Penn's story. You know how women are, they talk...perfect beauty parlor gossip!

No clouds in the sky

2007-10-30T10:26:00.000-07:00

It's a beautiful Tuesday, and more importantly the hubby is home with me as it is his day off. I am so excited to get to spend time with him. I love him being around, he has such a spirit for life that it's infectious... I didn't have my daily morning cry yet this morning. I think it's cathartic to get all of my sorrow out early on. I received several emails this morning and was very pleased to have gotten them. It makes me feel that Penn is carrying on. He has inspired people to pursue new ideas that will improve healthcare, and I am so very please by it.

Brad and I are not going to actively share this, but we got our results back from our genetic testing and both of us carry a mutation on the MTHFR. They're opposite mutations, but we each have one which increases our risk of giving life to a child with a congenital heart defect absent even of Down Syndrome. We will be getting fetal echo done when I am 18 weeks. I am only 7 weeks 2 days right now, so it's a ways away. I will be on November 27 at 1pm in Austin getting tested for the nuchal translucency screen.

I spoke with my doctor about the supplementation of the progesterone and because I am showing no signs right now of potential miscarriage, he is not going to supplement me. If he did, he would try to get me to 20-25 level. I was 12 with Penn. So, we'll see what the tests reveal.

Saturday...

2007-10-27T09:27:00.000-07:00

Well, I always check my email first thing in the morning. Interesting, there was a message there from Penn Children's Hospital. What are the chances. Ironic. Well, I am feeling quesy as ever, and not too certain that is how you spell it. I am 6 weeks and 4 days pregnant. Of course they say 6 weeks but realistically I am four weeks. I had my progesterone tested and the normal range for pregnancy is 9-47, and I have a level of 15. They say this is normal, however it is below average. So, talking to my physician is imperative. He seems to think low progesterone has been correlated to women who carry Down Syndrome children. So, though I am in normal range, because I am below average does this count as "low"? That is the question. I would not terminate but would be excited if we had another child with Down Syndrome. Only those out there with DS children would understand. We have contemplated the names Victoria Penn Harding, and Bella Penn Harding and Leya Penn Harding, and for a boy Stone Penn Harding and Job Penn Harding. I have surveyed people out there about suing and everyone seems to think that it is a lost cause. I am after finishing this blog going to start again on summarizing my complaints against all of the physicians. It's hard, it takes me going back through the medical records, and well, it takes me back to the smells, the sounds and the feeling of being in that facility. It's a dreadful place to be, but alas it must be done. Everyone's opinion seems to be to go after their licensure through their supervising boards, "that's" what really ercks 'em. However, I didn't just fall off of the turnip truck, and I realize that those supervising the complaints are also physicians. Do you think that they really take into account those who complain more than those of "sound"medical "intelligence"? Not likely, physicians are a part of an occult for WHATEVER reason, until I die I will not understand it. Anyway, enough rambling I must begin.

Life when suing

2007-10-24T12:16:00.000-07:00

I am compelled to sue the hospital system. I want to make a difference. I want to make a change in the way that children are treated there. I do not think that anyone will listen to a "bereaved" angry mother. They will only listen if they take you seriously. They will only take you seriously if you sue them. This is just my thoughts I wanted to get out, because I am having a hard time with the vision of this happening to another family and child.

The medical director at shift change one day toward the end of Penn's stay at Methodist told the physician she was taking over for, in front of us, "that was our problem, we dried him out too much." I couldn't believe she would say that in our presence, but she truly believed we were stupid "internet" parents, and believed me to be nothing more than a "stay-at-home mom". When you make reference to "overdrying" a child who has now been found to have clots everywhere, the comment is seriously bordering on admitting that you and your staff have caused the clots almost knowingly. It's insane...actually it is maddening, and I think that I am having a difficult time because I know that there is so much to attribute to their negligence that the fact that we let this slide makes me fearful that it will continue to happen to other innocent babies.

Friday

2007-10-19T09:31:00.000-07:00

I just tried to take a little nap, but couldn't get the vision out of my mind of the day that the "medical director" at Methodist tried for 3 hours unsuccessfully to get an IV site for my son. She gave up and called in the IV team after that point. She tortured him to the point he could barely cry anymore. It was the same weekend that he went without nutrition for four days. He was not the same after that. I pray hoping that he hears me say I am sorry. He had such a horrible second half of his life, and I am thankful for the fact that he doesn't have to go through it anymore but am troubled to the depth of my soul that he ever had to go through such terrible suffering.

A Wednesday of revelation

2007-10-17T18:33:00.000-07:00

Well, today we did the genetic testing. I have decided I will not be going back to San Antonio. Yesterday the geneticist's office called three times, and still today they held us to "confirm" insurance. We had chosen to go to this particular physician because we'd seen him while Penn was in the NICU, and he "had" our 1.25 hour conversation information about our family history...today he didn't come prepared and began asking us that same questions...Brad was a little perturbed. He also said (physician) that we never had to go all the way to SA to get the test done. Our physician at home could have ordered the test to be done and sent off from his office!!! Well, they could have interviewed us over the phone to find out what the appointment was for.. He also asked us how Penn was doing. We explained and he didn't seem overly empathetic/sympathetic. In the end he said he had expected to see the child. Okay, enough of San Antonio...getting the heck out of that armpit!

Also realized that in the short last two years of tragedy striking us, God has a message for us. He is going to bring us to our knees so that we will rely solely on him. Well, we are going to begin going to church on Sunday. We always talk about it, and never do it. This time we called Brad's grandmother and we have to go through with it now or she'll never let us hear the end of it. It is where Penn's memorial service was, so we will have a special connection. Hopefully life will be given to us again!

Surgery again

2007-10-16T10:29:00.000-07:00

This time the surgery is for my mother-in-law. She just had a second surgery on her big toe. The physician who did the surgery before only partially fused the joint thus continuing her endurance of pain. She had some trouble with the pain meds making her a little nauseated. They, my father in law and mother in law are coming back from Austin now. Would you believe that they would not even give her crutches to leave the hospital??

So, Wayne my father in law has to go and purchase crutches. I think the surgeon's should pay for them, that it should part of the surgery cost! I mean you immobilize someone and charge them for it and then you don't even provide a way to ambulate????

Well, the pack of wolves are going to do another hike today. This time we are going to Kerrville-Schreiner state park just over 2o minutes away.

We have to go for genetic testing tomorrow to see if we're carriers of the MTHFR gene. You know how I remember that acronym?? :) It is a gene that does or doesn't allow the carrier to efficiently produce homocysteine. If we both carry it it would increase our chances of parenting a child with a heart defect with or without Down Syndrome.

Well, gotta go.

Dogs

2007-10-15T11:10:00.001-07:00

Last night April, our 1.5 year old black german shepherd stayed up all night with a cough and wheezing. She was having a hard time breathing. I stayed up with her and held her head in a position that she breath easier and could get some sleep, she fell fast asleep. I began thinking that maybe it was something really serious. This morning I had to take our new puppy, Hailey to the vet to remove a staple from her spaying a couple weeks ago. I took April with me. When April was finally seen, the vet was nervous, I could tell. He mentioned bloat and I thought, "here we go again." Our 10.5 year old black GS had bloat last November and almost died. I was three months pregnant with Penn at the time. I had to consent to the surgery to untwist his stomach and was told he probably wouldn't make it...would I give consent for them to put him down if it seemed as though he wouldn't make it and he was in pain? I never thought I would, but I did, but he made it. This morning I started thinking, "what would I do if I was faced with this again?" It makes me feel like giving up to think about it. In the past two years I have lost my 30 year old brother to a sudden heart attack, my 2 year old black GS, Emma to a spaying that she didn't respond favorably to (10 days after my brother) and then Penn this year. Less than a month later I was thinking this morning I could be facing another loss. Could I stomach it? I am glad to know now that the vet thinks that April has kennel cough which she caught from Hailey. She's on antibiotics for it now. Wheww! Praise the Lord for letting me keep precious April. Just yesterday Brad and I went to Enchanted Rock with all of our dogs, Dakota, April and Hailey. It was awesome, and fun to have a "pack" with us. It felt like having a family!

Lance Armstrong Quote

2007-10-12T14:34:00.000-07:00

"Pain is temporary, quitting lasts a lifetime."

Getting "over" it

2007-10-12T13:09:00.000-07:00

I had the grand idea to write a book on living after experiencing the death of a child. I would call it, "Get Over It." I would write each chapter as a story of a time and place of when the best thing to do would be to just "get over it." Moving on is something that just happens. Each second passes, and the hairs on your head continue to grow, the cells in your body age, the calendar continues and each day passes, life happens, death happens, and then life again. Life is completely a yin/yang relationship. You cannot spend your time in either state for too long without having to add a part of the opposite. You are happy, you upset, you are sad and you are cheerful. That's life.

Sometimes "getting over it," involves making changes, and seeing change come about because of something terrible. My dream would be to see a change in the national healtcare system. The change would come in the form of children being treated like the precious gifts that they are, not a $ sign. Right now our healthcare system is set up to "milk" the insurance companies, and then throw patients out, even if they still need care. That's what happened to my son. Our insurance company will pay a $1million dollar cap for his care, and so Methodist "Children's" held onto him, knowing they will see the money...despite the fact that 12 days into his care, the medical director signed off of his care because of the inability to deal with her emotions in a professional way. They milked us. They damaged our son beyond repair, and inevitably he died as a result.

I am calling all parents out there that have had a similar experience at Methodist Children's Hospital in San Antonio. Please join me and others take back what Methodist has taken from us, our children, and the future of all children.

The story of Penn

2007-10-11T09:38:00.001-07:00

When I was 37 weeks along with my son, Penn River we had a sonogram to try and determine his size. I was expanding at record rate and there was some concern that he might be very big. After the first sono tech could not get an accurate reading of his femur length, she summoned another more experienced tech. She too got roughly the same size femur, 34 weeks, with a head circumfrence of 41 weeks. The demeaner of these two women was what shocked me. It seemed as though they thought something was wrong. It was my sixth sense kicking in. I sobbed the entire rest of the day, and called my physician. He assured us that he did not think anything was wrong, but that if Penn did have some genetic issue it would most likely be something like dwarfism. However, he assured us that my husband had short femurs and so most likely Penn would just be a shorter statured male if anything. So, when after 18 hours of labor propelled my son forth unto the world, the doctor was a little shocked. After 2 hours of waiting to see my son, my physician and a pediatrician came in the room and told us that Penn had a heart defect and the pediatrician told us that he appeared to have Down Syndrome, his nose was one of the major features suggesting so.

They told us that Penn would be transferred for further testing, etc.. to Methodist Childrens in San Antonio. They did ask us if we had a preference, they were just sending him.

Being sent to the NICU in San Antonio, and being in shock from the whole new world we just stepped into set us up to follow the path that was laid out before us. We met physicians in San Antonio that would be seeing him, mainly the cardiologists. We liked them, and they were in our insurance plan. They followed Penn and led us to the surgeon. Weeks before surgery, I began to feel very very bad about it. You know how women can be sometimes, well, I thought that's just how I was being. I had a premonition about the surgery, and my birthday which layed in between all the surgery options. My first fear was confirmed which was the fact that he did not have a good time during surgery.

The entire time we were at Methodist Childrens in San Antonio, which is NOT a dedicated children's hospital, but rather a "wing" of the hospital itself, we were treated as if we were "demanding" dictators. Physicians actually put that in the psych/social section of the progress notes. We were not heard when we wanted people washing their hands, when we actually went to the Chief Nursing Administrator and Infection Control about to no avail. I had the "medical director" actually tell me in a raised voice in front of other staff and my husband's boss's wife, that "you need to stop playing doctor, and be the parents, if you want to focus on things like "hand-washing" etc, be my guest, but allow us to make the medical decisions for your child, we would be happy to help arrange a transfer for you, but you're going to have to find a surgeon to take him on, and you're not going to find anyone that is going to want to take a child that has had complications from surgery." It was an ugly scene. She then refused to treat our son when it was her shift, and she ignored a pulmonary hemmorrhage all day because she didn't want to interact with us. At the end of the day it was an emergent reintubation in order to get his lung back up, this was after giving IPV treatments the previous day, and a pneumothorax that collapsed his other lung the day before that....all things that were ignored or done by the physicians as orders, on top of him having no nutrition, other than fluids. It was the biggest joke of a hospital I have ever, ever witnessed and it came with the most lack of professionalism I have ever known. I had a nurse actually say that Penn "got pissed off". Have you ever known a 3 month old child to get "pissed"? I haven't.

Unfortunately it was too late when we got him transferred. The tipping point was when the hematologist came in while I was away and told my husband while looking at all of the medications that Penn was on, "what are we doing here?" To which my husband responded, "you don't think he's going to make it?" The hema responded, "no, it's been too long." I came in after that physician left, and the cardiologist had come in and rasied hell. I told the cardiologist that if he had endured what our family had in the last five weeks he would leave his profession, and that our son had not even had nutrition for four days.

It was such a nightmare. I relive it over in my head every day and think that there has to be a reason that my husband and I witnessed all of the inadequacies of the system and staff that we did , and that there has to be a reason that our son suffered.

Hopefully, it's to help other families not make the same mistake we did by going to some place that is not specialized.

Today is a new day...expect change

2007-10-10T11:44:00.000-07:00

I just wanted to let everyone know that I have a blog site. I listed as "Children's Hospitals - Penn River" because I want people who are searching for a children's hospital to stumble upon this site. Hopefully it works.

In response to my son's recent passing on September 24th, 2007, I wanted to construct a place for people like me and my husband now after Penn's death, and those that were like us prior to his surgery to go.

My ultimate goal with this site is to inform parents of the necessity of checking out the hospital at which your child will undergo surgery so that the same things that happened to our son, do not happen to your child, or your friend or family member's child.

On July 27th, our son Penn River Harding underwent open heart surgery to correct an AV Canal, a congenital heart defect associated with his diagnosed Trisomy 21, spontaneous translocation.

He never made it home. We began our journey at Methodist "Children's" Hospital in San Antonio, TX. BIG mistake. We transferred him to Texas Children's Hospital, Houston, TX on September 6th, 2007, much too late. Had he began his journey at a hospital that is specialized in care for children, in a Cardiovascular Intensive Care Unit, like Texas Children's, he would be with us here today.

My big message is that despite your confidence in the surgeon, you must also do your research on the hospital at which your child will receive treatment. If a hospital is not dedicated to the care of children, such as Methodist Healthcare System, you are not going to get the best care possible, which is something you MUST do when considering a complicated surgery, like pediatric open heart.

If you have any questions, please email me at tadharding@hotmail.com, and I will be more than happy to get into contact with you.

"God grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference between the two." This biblical verse gave me overwhelming inertia while my son was hospitalized, and still guides me today.