Sunday, May 15, 2011

Update Eliana



I realized I didn't update on Eliana ! Our own sweet daughter . The love of our lives.
About 2 weeks ago we came back from Stanford. Eliana had a check-up catherization one year after her life saving surgery by Doc Hanley.
All looks as perfect as can be !
The part they tried to fix back home closed of , but she developed dual flow.
What a miracle .
She doesn't need anymore surgeries or catherizations until the conduit change . And that might be 5 , 10 or even 15 years down the road ! We hardly can/dare believe it.
We are so thankful.
The strange thing is that NOW all our fear comes out.
For 2 years we had to keep ourselves together like crazy . Now that all is ok ....we expect the next drama.....
Images of Eliana on ECMO.......sentences like "Suffered cathastrophic stroke " " Everybody has to die sometimes " and " You will burn many bridges " All spoken by doctors at home keep flooding our minds.
It will take a while , I think , for it to die down...
We did have a certain normalcy before going to CA for the catherization. We even had times we forgot about Eliana's chd ....but going and hearing Eliana scream "go, go , go away " when we had to lay her down on the operating table for the catherization brought everything back.
Also ; fighting for other children and waiting during their surgeries draws out deep emotions. I know we have to start living a normal life again for and with Eliana . And we will. The most vivid memories will go to sleep again for a while ....
And I will not go overboard on trying to save as many babies as I can.....
It will and does happen on its own already. Many times miraculously. Maybe the Angels on the picture taken at the Stanford Campus have something to do with this ! :0)

Finally I am not alone screaming in the desert !


Here is a post from facebook 1 in 100.
I am so happy to read this.
Finally I am not the only one screaming in the desert.....
The internet is a powerful tool. Hopefully more and more parents can get life saving information !

Post 1 in 100


1in100 Parental Oddity #20: This is about as direct a post as you will ever see here, so bear with me. Part of why 1in100 exists is to connect families. The first section created on 1in100.org was Medical Rockstars. Why? Because it was a place to list the physicians, medical teams and hospitals that have had the most impressive outcomes, particularly with the worst possible cases of CHD. So here it is: please, take the time to do your research and listen to the counsel of others. These families have walked down the CHD road. They aren't replacing doctors, but can offer help and wisdom on a specific diagnosis and courses of care. And they will share the good, the bad and the ugly. There are babies all around this country receiving medical care for critical heart defects that just are not in the right place. The more you know, the more you can do. Second, third and fourth opinions. They matter. #1in100ost 1in 1000

Image taken Febr. 2010 Stanford University Campus. Rodin Gate of Hell.
Will and I had our own private thoughts encountering this stunning creation.

Doc Hanley in the news.


http://www.businesswire.com/news/home/20110509005426/en/Famed-Surgeon-Repair-Kennadee%E2%80%99s-Heart-%E2%80%9COne-Complex

Here is the article !

In the picture is Doc Hanley ho;ding Eliana 10 days after her life saving surgery 2010.

May 09, 2011 09:00 AM Eastern Daylight Time
For Famed Surgeon, Repair of Kennadee’s Heart “One of my Most Complex Ever”

Dr. Frank Hanley Fixes Hearts That Can’t Be Fixed
Kennadee Albright plans her first birthday on May 21

STANFORD, Calif.--(BUSINESS WIRE)--Don and Shawna Albright had almost lost hope.

“Without these surgeries, the prognosis for her long-term survival would be close to zero”

Eighteen weeks into Shawna's pregnancy, an ultrasound showed deadly, unfixable problems with their baby girl's heart. Two referrals and two echocardiograms later, doctors said there was no way the baby would survive her complex heart defects.

"They all said it would be best to terminate," said Shawna.

Devastated, the Albrights decided to seek one more opinion. This produced a breakthrough by way of a Seattle doctor: a referral to pediatric cardiothoracic surgeon Frank Hanley, MD, at Lucile Packard Children’s Hospital, where Hanley repairs congenital heart defects that other doctors won’t touch.

Soon Don and Shawna were traveling from Washington State to Palo Alto, Calif., joining a roster of families from locations such as South Africa, France and Germany who have turned to Hanley to save their children's lives.

"It was an amazing relief," said Don. "This was the first time we had even a one percent chance of saving our baby."

In May 2010, Shawna delivered baby Kennadee at Packard Children's so that Hanley and the hospital's expert neonatology and cardiology teams could care for her from birth. Hanley soon realized the tiny girl was one of the most complex patients he had ever seen. Some infants have serious defects inside the heart; others have a hard-to-repair malformation of the artery leading to the lungs. Kennadee's case was even worse.

"Kennadee had the '10 out of 10' pulmonary artery problem, but inside her heart she also had a complex defect that is a 9 or 10 out of 10 on the cardiac side of things," Hanley said. The list of Kennadee’s diagnoses overwhelmed the Albrights: congenitally corrected transposition of the great arteries, severe dextrocardia, pulmonary atresia, major aortopulmonary collateral arteries, an atrial septal defect and a ventricular septal defect.

"Dr. Hanley was the right surgeon for Kennadee because of the rarity of the combination of her heart defects," said Kimberly Krabill, MD, the pediatric and fetal cardiologist at Seattle's Swedish Medical Center who referred the Albrights to Hanley. "When families say, 'Who's the best surgeon in the U.S.?' I have to be honest with them," Krabill said. "Expertise- and results-wise, Dr. Hanley is one of the top surgeons in the U.S."

Hanley laid out a surgical strategy for the Albrights. “It would take three open-heart surgeries to achieve a complete repair,” he said.

Kennadee's first two operations repaired her blood vessel problem. She lacked a pulmonary artery, the large tube that carries blood from the heart to the lungs. Instead, she had many small heart-to-lung vessels widely scattered throughout her chest cavity. Her first surgery, a four-hour operation at age two weeks, allowed more blood to be pushed through these little vessels, prompting them to grow. It was a key step to prepare her for surgery number two.

The second operation, in September 2010 when Kennadee was four months old, was a marathon repair that Hanley, its pioneering inventor, has performed more than 500 times. This “unifocalization” procedure involved gathering the many small arteries found throughout her chest and bringing them together to construct a single large blood vessel that mimics the normal pulmonary artery. Then, an artificial heart valve was installed at the junction between the heart and the new artery. Hanley likens this surgery to gathering branches scattered around a field and building them into a tree trunk. The long, arduous procedure takes such stamina, focus and experience that very few surgeons attempt it.

Packard Children's Cardiovascular Intensive Care Unit director, Stephen Roth, MD, MPH, who also worked with Hanley when they were both on staff at Children's Hospital Boston, confirmed: "Frank Hanley is among the world's small group of elite pediatric cardiovascular surgeons".

As Hanley made clear to the Albrights, no two children have identical malformations, so every surgery is a unique challenge. But Kennadee's 10-hour unifocalization went smoothly and she healed extremely well.

After that, Hanley needed to fix the last of Kennadee's problems. In her heart condition, called "corrected transposition," the left and right sides of the heart have swapped jobs. Although this anatomical abnormality poses no immediate threat to a newborn's life, it puts long-term strain on the heart and lungs. If the condition is not treated, both organs will fail.

So, in her third surgery in March 2011, in a re-plumbing of Kennadee’s heart, Hanley performed an eight-hour "double switch" procedure on the then-10-month-old. He moved her blood vessels to the correct positions, finally allowing her blood to circulate on a normal path through the right side of her heart, her lungs, and the left side of her heart and then the rest of her body.

"Without these surgeries, the prognosis for her long-term survival would be close to zero," Hanley said. "Now, all of her cardiac and lung physiology is completely normal."

Shawna added that when it was all over, “Dr. Hanley was as thrilled as we were. He was so happy for us.” As she outgrows her artificial heart valve, Kennadee will need replacements, but she faces no other restrictions, and the valve replacements are relatively simple procedures.

And now, Kennadee is looking good, feeling good, playing peek-a-boo and planning to celebrate her first birthday on May 21, an event that once seemed unimaginable. Her personality is emerging, too.

"She's not shy," said Don. "She's a big flirt with everybody."

Looking back at their refusal to succumb to the worst of all diagnoses, Don and Shawna are beyond grateful to the doctors who never gave up. “We are forever thankful that Dr. Krabill knew about the amazing work of Dr. Hanley.” said Shawna, who offered what could be lifesaving advice for other families facing a seemingly hopeless situation.

“Keep looking and don’t give up,” said Shawna, who had been told repeatedly that there was no one who could help. “That’s how we found Dr. Hanley, and without him we wouldn't have our daughter.

Wednesday, May 4, 2011

Baby Amberlyn still doing fine !


Baby Amberlyn is still doing great !
She is still in ICU , but awake . Just like Eliana part of her lung collapsed , but that will be ok in no time ! I have gotten beautiful pictures of Amberlyn being held in her mothers arms. So many memories come flooding back.

This is an excerpt of what Amberlyn's mum just wrote me .

You were right about the hospital. It is beautiful and the drs and nurses are nothing less than amazing. It is so different that what I am used to! Its great. Thank you again so much for posting about dr hanley. If I hadn't have seen that post I would have never known about dr hanley and I don't know if amberlyn would have been able to survive another operation in d.c. have you thought about a lawyer for what happend to your daughter at the md hospital? I mean pain and suffering would be a reason by itself. What do you think?