Thursday, July 31, 2008



my (getting) chubby little man :)






new pics



whatch you talkin' about willis?!


mommy- you are soooooo last week (lol)

first time he reached out to play :)

Tuesday, July 29, 2008

Poem written by HLHS mom

Twas the night that you joined us...
all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new..."Oh please tell me Lord...is this what you will do"?
God looked from the angel...to the baby's sweet face,
"Through him my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through his great courage...such true love will grow".
"Every hair on his head has been numbered you see.."
"It's my hope that through him... they will learn to see me.
"Oh my little one with a special heart..."
"Great love will see you through.."
"See look that is your family.."
"They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart.
And so we held you in our arms...
And thanked our Lord above..In you...we see the miracle,of His undying love.
So when it's Christmas morning,
And I watch my children play,
I'll need no great reminders,
For I see my gifts each day.

Stephanie(Mommy to Braeden, HLHS)

Doing good

Just wanted to say that Parrish has been doing fine since we made it home from the last hospital stay a few days ago. His weight is increasing and he is getting more and more active everday- and his smiles just melt your heart! Thanks for keeping up with us....

Heart Catheterization scheduled...

Parrish has been scheduled for his 'heart cath' for Oct. Below is info about the procedure:

Why perform a catheterization?

Heart cath helps cardiologists gain information needed to fully evaluate a condition and recommend treatment for your child. It is a test that shows how the heart chambers, valves, and vessels are formed, and how they are functioning. A cath also provides cardiologists with information about specific areas of the heart and lungs. For patients who need surgery, a cath provides surgeons detailed information not available through other testing, such as the precise location of abnormalities and the specific structure of your child's heart. A heart cath may also be used therapeutically, to treat a condition or to correct a problem.

What is a heart catheterization?
Caths are performed in a specially equipped cath lab by a cardiologist with the help of a trained team of nurses and technicians. It is similar to a surgical procedure, although there are usually no incisions or stitches. To prevent infection, the staff wears sterile gowns, hats, and masks and the patient is covered with a sterile drape. The patient is sedated and a local anaesthetic is used to numb the groin area. This injection is the only discomfort your child should experience during the procedure. The anesthetic is similar to Novocaine--used by your dentist. A thin, flexible tube, known as a catheter, is then inserted into a vein and sometimes an artery, usually in the groin.
Once the catheter is in the blood vessel, the cardiologist uses a fluoroscope (similar to an X-ray machine) to guide the catheter into the different areas of the heart. The movement of the catheter within the heart is not painful or uncomfortable. While the catheter is in the heart, several procedures are performed:

Blood presssures in different heart chambers and blood vessels are recorded.

Oxygen content of the blood in each heart chamber is evaluated.

Dye is injected through the catheter.

Angiograms (x-ray movies of the dye's movement) are filmed so that the details of the cardiac problem are recorded.

The cath lasts from one to three hours. Afterwards, the only outward sign of the procedure will be a pressure bandage applied to the cath insertion site. Before your child is discharged, the cardiologist will review the preliminary findings with you. Later, these data and findings are reviewed by cardiologists and surgeons . This gives your child's cardiologist "second and third" opinions for any decisions made in your child's care.

Saturday, July 26, 2008

Pictures

If you would like to see Parrish's journey, check out his album at:

http://share.shutterfly.com/action/welcome?sid=1QbOXLVwyZOXg&emid=sharshar&linkid=link5

That's How Strong My Love Is...

I wanted to add this song but couldn't find the link... so here are the lyrics :)

Otis Redding
That's How Strong My Love Is


If I was the sun way up there
I'd go with love most everywhere
I'll be the moon when the sun goes down
Just to let you know that I'm still around
That's how strong my love is, oh
That's how strong my love is,
That's how strong my love is, baby, baby,
That's how strong my love is.

I'll be the weeping willow drowning in my tears
And You can go swimming when you are here
I'll be the rainbow after the tears have gone
Wrap you in my colors and keep you warm
That's how strong my love is, darling,
That's how strong my love is, baby,That's how strong my love is, oooh,
That's how strong my love is.

I'll be the ocean so deep and wide
And catch all the tears whenever you cry,
I'll be the breeze after the storm is gone
To dry your eyes and love you warm
That's how strong my love is, baby,
That's how strong my love is,
That's how strong my love is, darling,
That's how strong my love is,
That's how strong my love is, so deep and wide,
Well, that's how strong my love is
So much love, yes so much love, oohh,
Yes so much love, yes so much love,A
nything that I can do, I'll be good for you,
Any kind of love you want,
I'll be with you....

A little snag...

Hello All,

Parrish was admitted Friday morning because his oxygen sats were low. But after the x-ray, echocardiogram, and blood work they all came back ok, so they were stumped as to why they were low. So they wanted to watch him for a few days just in case. The docs say that with heart babies that things can go wrong very quick. But he has done fine, and we hope to go home Sunday. They have gone up on his blood pressure medicine and said that another avenue they may try in the future if his oxygen sats stay low is to give him blood to up his hemoglobin count. But his sats my be low because he is growing also. More updates as we get more info :)

Tuesday, July 22, 2008

2 months old today :)

Parrish had his 2 month check up today and all the shots that go along with it :( He did great- and mommy did too lol. He weighs 9.02oz and is 22.25in long. He's GROWING! We have our next Single Ventricle Clinic appointment on Friday so I hope that goes well also. He seems to be getting more active everyday and i am addicted to those smiles :)

Sunday, July 20, 2008

Just some thoughts....

Today was a good day. Had a great family nap and otherwise just enjoyed time with Parrish. One of the online support groups I belong to listed one of the members as losing their baby on Friday. Their daughter was just one month older than Parrish and it just really was one of those moments that stops you in your tracks and reminds you of just how precious our time with him is. I hate having those thoughts about 'what if...' but they are there and I admit that in the back of my mind I am always a little afraid that 'something' is going to go wrong. People have commented on how strong I am and how I am handling things so well- but the truth is I have had my moments of weakness and if it weren't for the love of my supportive husband and family and friends- I would be a complete mess. Sometimes I even wonder how I deal with all of this and then I just look at Parrish, see him flourish everday and hope that tomorrow will be another lucky day- just soaking up every little bit of him that I can and never forget that he IS and will ALWAYS be our little MIRACLE.....

so, so true :)


Saturday, July 19, 2008

info about his condition


Hypoplastic Left Heart Syndrome




What is hypoplastic left heart syndrome?
Hypoplastic left heart syndrome (HLHS) is a serious problem that involves several parts of the left side of the heart. It is quite rare and occurs in about 1 out of every five thousand babies born. In the United States, about 1000 babies with HLHS are born each year. Two thirds of the babies affected are boys. Most babies with HLHS are otherwise healthy but some have other medical problems including other heart problems, neurologic problems, and Turner's syndrome.

In this condition, for unknown reasons, the left side of the heart does not develop properly while the baby is in the mother's womb. The parts of the heart that are usually affected are the mitral valve (1), the left ventricle (2), the aortic valve (3), and the aorta (4) In the normal heart, red blood returning from the lungs, flows from the heart's left upper chamber called the left atrium through the mitral valve to the left ventricle where it is pumped through the aortic valve and out to the body. In babies with HLHS, the left side of the heart is underdeveloped and cannot pump enough blood to meet the body's needs.
Without treatment, 95% of babies with HLHS die within the first month of life. Treatment means either three heart surgeries during the first two years of life or a heart transplant. Due to dramatic improvements in surgery and medical care, many children born with HLHS now do very well. However, these treatments involve many stressful experiences and risks. The treatments are not a "cure" and the children will need expert medical attention for the rest of their lives.


What are the effects of this defect on my child's health?


Like most heart defects, HLHS does not have an adverse affect until after the baby is born. Prior to birth, the baby's oxygen comes from the mother and the baby's lungs are filled with fluid. Blood pumped from the baby's right side of the heart bypasses the lungs by flowing through a blood vessel called a patent ductus arteriosus. Usually, one to two days after birth, this vessel closes. In a baby with HLHS, closure of the ductus arteriosus removes the baby's means of supplying blood to the body and results in shock and death. If the diagnosis of HLHS is made, a medicine given through the vein called prostaglandin is used to keep the ductus arteriosus from closing until the time of surgery. See the sections on heart transplantation and three stage surgical repair for information on health outcomes after treatment.
Participation in physical activities and sports: Children who undergo surgical repair of HLHS can participate in recreational physical activities but are restricted from competitive and vigorous athletic activities.


How is this defect diagnosed?


Prenatal diagnosis: The diagnosis of HLHS is made by an echocardiogram or ultrasound of the baby's heart and can be made as early as 16 weeks into the pregnancy. An echocardiogram of the heart is done when a possible problem is identified during a routine prenatal ultrasound or because of a family history of congenital heart disease. Left sided heart problems tend to recur in families where one child is affected. Estimates of having another child affected range from 4.5 to 13% (Boughman et al. 1993, Brenner et al. 1989). If there is a family history or if concern is raised during a routine ultrasound, the family is referred to a pediatric cardiology center where a detailed ultrasound of the heart is performed.
Clinical features: Most newborns with HLHS have mild heart related symptoms until the patent ductus arteriosus closes. This usually occurs within 48 hours of birth. Prior to closure of the ductus arteriosus, the baby's lips or fingernails may look slightly blue, especially when the baby cries. Babies with HLHS often breathe fast, have low energy levels, and/or have feeding problems. These changes can be subtle and can be difficult to detect in a newborn baby. When the ductus arteriosus does close, the baby may get very ill very quickly and develop symptoms of shock
Physical findings: The presence of a heart murmur, mild cyanosis (blue color from low oxygen levels in the blood), fast heart rate, and fast breathing rate are the first clues that an infant has HLHS.
Medical tests: The first tests often ordered are an electrocardiogram, chest x-ray and oxygen saturation test. The electrocardiogram may show decreased left-sided forces. The oxygen level in the blood is usually a little low. The chest x-ray often shows a bigger than normal heart and extra blood flow to the lungs. The gold standard for diagnosis is an echocardiogram. Cardiac catheterization is done if there are any questions not clearly answered by the echocardiogram.


How is the problem treated?


Treatment of HLHS means either a three-staged surgical repair or heart transplantation.
Three-stage surgical repair for HLHSThe surgical repair for HLHS is a series of three heart operations done during the first two years of life. The goal of these operations is to rebuild the heart so that the right side can be used to pump blood out to the body. The first operation is done during the first week of life, the second one is done when the child is four to six months old, and the last one is done when the child is about two years old.
In addition to the three operations, two or three heart catheterizations must be done. A heart catheterization is a heart test that is done by a cardiologist with the help of cardiovascular technicians. Soft, thin plastic catheters (tubes) are placed in the large blood vessels in the leg and threaded carefully to the heart. The catheters are used to take pressure measurements inside the heart and to inject contrast or dye so pictures of the heart can be taken. Overall, this is a very safe test and children can go home the same day.

Heart Transplantation for Hypoplastic Left Heart SyndromeHeart transplantation is one option for treatment of children with hypoplastic left heart syndrome and remains an option even after staged surgical repair. Heart transplantation means that the heart from a child who died is removed and used to replace the defective heart in someone with a very serious heart problem. The first heart transplant was done in an adult in 1967. While early results were encouraging, most people died within one or two years after transplantation because the immune system rejected the new heart. In the early 1980’s, a new anti-rejection drug called cyclosporine became available and proved to be very effective in preventing rejection of transplanted hearts as well as other transplanted organs. In 1985, Dr. Leonard Bailey at Loma Linda University demonstrated that heart transplantation could be successfully done in infants with HLHS and other serious heart problems.
Heart transplantation offers advantages and disadvantages in the treatment of children with HLHS. Unlike children who undergo the three stage reconstructive approach, children who undergo transplant need one operation during early childhood that results in a "normal heart", that is, a heart with four chambers that pumps in the normal way. The risks associated with the operation itself are quite low at most major centers. Operative risk with the three stage surgeries varies considerably across institutions and in some centers it is very high.
Disadvantages of heart transplantation include the lack of availability of donated hearts of a size suitable for an infant. Due to the numbers of children awaiting heart transplantation and the lack of availability, about 10-25% of children die awaiting transplantation. Other concerns include side effects from the life long need for anti-rejection medications, growth problems, and early onset coronary artery disease. Also, low-grade rejection is almost inevitable so that the average "lifespan" of a transplanted heart is about ten years. For more information on heart transplantation, click here.


What is the prognosis for children with hypoplastic left heart syndrome?


The outlook for children with HLHS has improved dramatically. While once uniformly fatal (with 95% mortality by one month of age) survival at 3 to 5 years of age is now about 60%. Most children enjoy a good quality of life without significant developmental problems Although the outlook has improved, decision-making about treatment is difficult due to the potential for suffering and distress associated with multiple surgeries and heart catheterizations and high medical costs, particularly in light of an uncertain long term outlook for the children. Our experience so far indicates that most children will reach adulthood in good health. Some children will need other surgical procedures such as a pacemaker for abnormal heart rhythms. Some children will need a heart transplant at some point in the future. Children are restricted from competitive sports and from very demanding physical activities but can otherwise do all the things that children enjoy doing. Overall, it is expected that these children have a good quality of life: have friends, play, and go to school just like other children.
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References
Brenner JI, Berg KA, Schneider DS, et al. Cardiac malformations in relatives of infants with hypoplastic left heart syndrome. Am J Dise Child 1989;143:1492-1494
Boughman JA, Neill CA, Ferencz C, Loffredo CA. The genetics of congenital heart disease. In Ferencz C, Rugin JD, Loffredo CA & Magee C (Eds). Perspectives in pediatric cardiology. Vol 4. Epidemiology of congenital heart disease: the Baltimore-Washington Infant Study, 1981-1989. Mount Kisco, NY: Futura, 1993:123-167
Goldberg C, Schwartz EM, Brunberg JA , et al. Neurodevelopmental outcome of patients following the Fontan operation: A comparison among children with hypoplastic left heart syndrome, other functional single ventricle lesions and the standard population. Manuscript in press.
Lloyd T. Prognosis of the hypoplastic left heart syndrome. Prog Pediatr Cardiol 1996;5:57-64.
Backer CL, Mavroudis C & Zales VR. Heart transplantation. In C Mavroudis & C Backer (Eds) Pediatric Cardiac Surgery. St. Louis, MO: Mosby, 1994, 571-583
Uzark K, Lincoln A, Lamberti J et al. Neurodevelopmental outcomes in children with Fontan repair of functional single ventricle. Pediatrics 1998;10:630-633.
Written by: S. LeRoy RN, MSN, L. Callow RN, MSN, CPNP, K. George RN, MSN, CPNPReviewed by: E.Bove, MD, D. Crowley, MDJuly 2000

Interesting article about the procedure modification Parrish had (Sano shunt)

Arch Mal Coeur Vaiss. 2006 May ;99 (5):452-6 16802734 (P,S,E,B)
[Value of the Norwood-Sano compared with the classical Norwood procedure in hypoplastic left heart syndrome]
[My paper] A Dragulescu, O Ghez, J Bouvenot, S Guillaumont, B Kreitmann, D Metras, A Fraisse
Cardiologie pédiatrique, Hôpital d'Enfants de la Timone, Marseille.
Palliative treatment of the hypoplastic left heart syndrome is rarely practiced in France because of the poor prognosis of the first surgical stage of the Norwood procedure. The recent modification proposed by Sano seems to give more promising results. The authors report their experience with the Norwood-Sano procedure compared with the classical Norwood procedure in 13 neonates with hypoplasia of the left heart. From 1999 to 2005, 8 patients underwent the classical Norwood procedure (1999-2001) and 5 had the Sano modification (2002-2005). During the preoperative period, there was 1 case of a very restrictive interatrial septum and 5 patients required mechanical ventilation. The patients were operated at an average age of 8.5 +/- 12 days. The results showed that survival after the first surgical stage was significantly better with the Sano modification (12.5% versus 80%; p= 0.03). All patients who survived the first stage went on to the second stage with a bi-directional right superior cavo-pulmonary derivation at an average of 6.1 +/- 2.4 months. Despite the infundibulotomy of the Sano modification, no arrhythmia or right ventricular dysfunction was observed after an average follow-up of 21.7 +/- 7.6 months. The authors conclude that the Sano modification improved survival of patients with hypoplasia of the left heart after the first palliative surgical procedure. The long-term follow-up of patients operated by this technique should particularly look out for arrhythmias and right ventricular dysfunction

Tuesday, July 15, 2008

to check out pics album from since he was born

http://share.shutterfly.com/action/welcome?sid=1QbOXLVwyZOXg&emid=sharshar&linkid=link5

when you have time- great article about Parrish's heart surgeon

To Save a Child’s Heart

Chuck Fraser and the Unbelievable Life of a Pediatric Heart Surgeon
by Tim Taliaferro

They keep it meat-locker cold in the O.R. It smells of sterilizing chemicals. The bypass machine, a maze of tubes and tanks, whirs quietly next to another machine that keeps the temperature of the patient’s blood below freezing, inducing hypothermia. It hums like a refrigerator. Several monitors show a continuously updated bank of color-coded numbers with coordinating line graphs. The surgeon’s saw, high pitched at first, drops several octaves when its teeth meet breastbone.
Today’s operation, a complete atrioventricular canal defect surgery, is a complex one, even for Charles Fraser, BA ’80, chief of congenital heart surgery and cardiac surgeon in charge at Texas Children’s Hospital in Houston. He’s one of only a few surgeons in the world who can repair hypoplastic left heart syndrome, a fatal condition where the left side of the heart, the one that pumps oxygenated blood to the body, doesn’t fully develop and must be rebuilt over three separate operations. In the course of a year Fraser’s team will do between 20 and 30 heart and lung transplants. This operation, he says, should last four or five hours.
You would never know if you met him socially that Fraser, Life Member, Outstanding Young Texas Ex, and a member of the Texas Exes Board of Directors, is one of the world’s elite children’s heart surgeons. Chances are he’d want to talk about you. Were you to follow him around for a day, though, you’d likely hear him discuss fly-fishing, his four kids, or anything having to do with his beloved alma mater. What he would never tell you is how good of a surgeon he is or how wholly dedicated he is to his patients and to his hospital. In fact, if you met him at a party, he’d probably just say he was a doctor and leave heart surgeon unspoken.
Were you to press him into talking about his work, you’d notice that while he reflexively dodges praise directed at him he’s perfectly willing to brag about his team. He’s happy to point out that U.S. News & World Report has ranked Texas Children’s as high as sixth on its list of the best kids’ hospitals in the country. He’ll gladly tell you that the heart surgery division, third on the Report’s list, has one of the lowest mortality rates anywhere. He’ll boast of the specialists and nurses who work in the division but leave out that one of the main reasons many of them came to Texas Children’s was to work with him.
Doc Fraser arrived at the hospital this morning minutes after 6 a.m., taking his customary circuitous route from his home in River Oaks to the medical center, avoiding traffic lights at all cost. In the past Fraser would ride his bicycle to work in the mornings but under enormous pressure from the hospital administration, worried that their superstar doctor might get hit, he stopped. Now he drives his white suburban with a big orange Longhorn silhouette on the door and parks on the ground floor. He greets the traffic cop by name as he steps into the crosswalk on his way to the hospital entrance.
The lights are off in the Congenital Heart Surgery office when he arrives. Outside, the sun remains a good half-hour from the horizon. After changing into his white doctor’s coat he heads upstairs to the cardio vascular ICU, where he meets with his fellow surgeons around a monitor. They check out the latest images, discuss progress, then head off in a pack to each patient’s room, where a nurse is waiting chart-in-hand to deliver updates. It is a deluge of information — a tsunami — one number after another, and the doctors stand, listening carefully, allowing it all to wash through their internal filters. Fraser asks the occasional question or calls on his colleagues for their assessments. They move along.
While Fraser is a force in the operating room, you have to see him with patients to understand what makes him such an extraordinary surgeon. Fraser doesn’t fit Hollywood’s surgeon stereotype, the cocky, glam, insensitive braggadocio. “Patients are not just cases for him,” explains his pastor and fellow Phi Gamma Delta Larry Hall, BBA ’65. “Chuck has a big heart. He feels deeply. He cannot avoid being emotionally engaged with the person.”
While he is by nature a compulsive fixer — problems have a way of consuming him — Fraser often reminds his colleagues not to treat a malady as though it exists independent of the afflicted. “I’ve seen him come home and cry countless times,” says his older son, Charlie, a sophomore at UT. “He gets really frustrated if people he works with don’t engage themselves emotionally with the patients. That really upsets him.”
Fraser’s medical philosophy draws heavily on the writings of Sir William Osler, a 19th-century Canadian-born physician often credited with having established the medical residency program. Osler was a medical humanist, extremely well read, who in instructing his students to treat the whole person could quote everyone from Plato to Matthew Arnold to King Solomon to Robert Louis Stevenson. One of Osler’s most widely read works, Aequanimitas, is a collection of lectures and speeches he delivered to medical students. “My dad lives by that book,” says Fraser’s older daughter, Laura, who in May graduated Phi Beta Kappa from Plan II.

At precisely 7 a.m. the pack of surgeons files into a conference room. Every Monday morning the pediatric cardiologists and the pediatric cardiothoracic surgeons meet in this room to review previous cases, get updates on current ones, and discuss candidates for surgery. It was one of the first changes Fraser made when he came to Texas Children’s in 1995. “They brought me here to change the culture and expectation of this hospital,” says Fraser. Oftentimes cardiologists and heart surgeons practice entirely independently, even in separate buildings on separate sides of town. Here he gets them together in one room.
The bulk of the discussion assumes the shape of a debate. When cardiologists have patients who they believe need surgery, the patients’ files are read aloud to the group and the case for surgery is made. The surgeons, who sit in the front row, ask a variety of questions about the patients, whose cardiologists then answer. A technician at the back of the room can pull up any medical record the group may want to see and project it onto the main screen.
It is a remarkably civil exchange, given the company and the propensity that people accustomed to being the smartest guy or gal in the room have for turning impatient when questioned. For the most part, the interlocutors start in with phrases like, “Are we sure that…?” or “Isn’t the issue really…?” or “While I see your point, doctor, from looking at the saturation data, I’m not convinced….”
Chuck Fraser, listening quietly up at the front, appears to possess ideal traits to lead this group discussion, what may well be the brainiest meeting of the minds happening anywhere in the world on Mondays at 7 a.m. If he has an ego, he keeps it checked. He’s calmly impatient — open-minded but allergic to redundancy. His credentials gleam: UTMB, Hopkins, a stint with famed children’s heart surgeon Roger Mee in Australia. Before Texas Children’s wooed him to Houston he was working at the legendary Cleveland Clinic.
Fraser sits directly in front of the main screen and immediately next to his father-in-law, Denton Cooley, BA ’41, Life Member, and Distinguished Alumnus.They are the gravitational center of the room. Cooley, 87, attends these meetings even though he no longer operates on patients and is not an employee of Texas Children’s. He’s Fraser’s guest, and even if he weren’t, no one would tell one of the first and greatest heart surgeons in history to get out. For the most part, his participation consists of occasionally leaning over and whispering a comment to Fraser, who nods or whispers an answer back.
Chuck first met Cooley’s daughter, Helen, at LakeTravis, on a blind date arranged by mutual friends. They spent three days together playing tennis and waterskiing. Helen, BA ’83, Life Member, grew up playing tennis, and so did Chuck, who after learning from legendary coach David Kent at MidlandHigh School played varsity at UT with Kevin Curren, Brad Nabers, Steve Denton, and Gary Block. “He was probably thinking, ‘This girl could use some work on her backhand, but man can she lay a blade down,’” says Helen.
He was in medical school in Galveston at the time, and the two dated long-distance. Helen would drive to Galveston, where her parents had bought a beach house, and she and Chuck would take turns early in the morning pulling each other behind the boat. “We used to ski for 30 minutes each,” says Helen. “Now we’re lucky if we stay up for five.”
Time by the water remains special for the couple. Like many parents whose work keeps them away, for Fraser, vacation is a time for family. “Whenever I can get away, I spend the time with my family. We go on a lot of trips,” says Fraser. The family goes on fly-fishing trips to Idaho or to their lakehouse near Austin as often as they can.
Fraser has always been a passionate and emotional father. “He’s very sentimental,” says Helen. “He cries at everything.” He has a tradition of writing his four children letters, sometimes to commemorate major milestones or holidays and sometimes just out of the blue. “He wrote me one while we were traveling together in Japan recently,” says Laura, whose eyes mist up at the thought. On Charlie’s bulletin board hangs his most recent one, a long letter spilling his pride in and expectations for his oldest son.
* * *
Despite his prominence, Fraser might be the most unassuming surgeon at the Monday morning meetings. From the way he asks questions of his colleagues and from the tone with which he addresses them, you can tell he respects them all. Throughout the meeting, he never once seizes an opportunity for self-aggrandizement. He’s content to let his juniors duke it out. Only when the conversation starts going in circles or has overlooked something entirely does he pipe up.
In one instance, after a particularly long discussion that appears headed toward resolution, Fraser suddenly speaks up. The case in question boils down to a choice between two options, one safer and less intrusive, another much riskier but with the potential to dramatically improve the heart’s performance. The group seems headed toward consensus on the first option until Fraser says, “The other piece of information that’s pertinent is that this patient’s dream is to play baseball.” While the less risky operation might lead to some clinical improvement, it wouldn’t result in any change in the patient’s quality of life. “I think perhaps we should give the parents and the boy the option to decide,” he says. There’s a moment of thoughtful silence before someone agrees, and then someone else, and just like that the consensus swings to offering the family the options. “What’s next?” asks Fraser, and a new discussion begins.

When Fraser arrives at 10 a.m. in the hallway just outside the O.R., he’s wearing his traditional burnt-orange Crocs. The five-month old has already been prepped and anesthetized. Once Fraser scrubs in and attaches his head camera, he reminds all 10 people in the room who the patient is and what surgery will be performed. Fraser likes his operating room silent. He doesn’t tolerate chit chat. You can feel the force of his concentration, a total, all-consuming focus. He’s a meticulous surgeon, preferring to make his way deliberately rather than quickly through the layers of flesh surrounding the heart. When he gives directions to his assistants it’s in that nearly inaudible voice one stop above a whisper. Everyone’s on their toes. He gets everyone’s acknowledgement before stepping up to the table, crossing his left foot over his right, and holding out his hand. “Scalpel,” he says.

Fraser counts himself a deeply religious man. “Faith is a big part of my life,” he says. Every morning he and Helen get up and read from the Bible together. He keeps a verse written on the whiteboard in his office. Whenever he’s not in surgery and can make it to church on Sunday, Fraser takes notes while Pastor Larry Hall speaks, jotting down questions that come to him so he remembers to ask his friend for clarification later. “He asks some hard questions,” says Hall. Once, before an emergency surgery, Fraser called Hall at 6 a.m. and asked him to come to the hospital. “We all held hands in the operating room and prayed before the surgery,” says Hall. Afterward Fraser called to tell him the surgery went well and that the patient survived.
He wasn’t always pious. Eight years ago, Helen had a spiritual awakening, and since that time Fraser has grown steadily more devout. “He started talking about things at work in a lot more religious terms,” remembers Charlie. The family began going to Hall’s St. John the Divine Episcopal church every week. Now they’re a staple in the church community. Says Hall, “They’ve been such a valued family. So gracious, so involved, so caring. They’re regular, constant people.”
* * *
Every heart surgery has four basic steps. The first involves opening the chest by cutting through the breastbone. Step two is getting the patient on bypass. For a surgeon to open up a heart, he or she must stop it, requiring a machine to then circulate and oxygenate the body’s blood. They call it bypass because the surgeon will insert tubes into the aorta and the inferior and superior vena cavas that will divert or bypass the blood away from the heart. Step three is stopping the heart and repairing it. Step four is getting off bypass and sewing everything back up.
Each step takes considerable time, and each has its particularly tricky moments. Choosing the size of the bypass tubes is one such moment: a tube that’s too big could damage the artery or vein, while one that’s too small might hinder bloodflow. And moments before you begin the bypass, the patient must be given blood thinners, which means from that point on any cut or puncture will be much harder to stop from bleeding uncontrollably.
Once the patient gets on bypass, the room goes totally quiet. The monitors that had been softly beeping go mute, and after an injection of potassium into the surrounding coronary arteries the heart very suddenly ceases beating. Now, with one quick movement, Fraser slits it open.
Even though he’s seen the insides of hundreds of hearts and has seen many scans of this one, Fraser can’t know exactly what he’ll find until he looks inside. No two hearts are exactly alike, and when dealing with congenitally defective hearts, anything is possible.
It’s easy to take for granted nowadays that doctors can open up a heart and fix it. The novelty of open-heart surgery has faded in the decades since it was first done. What was once a rare and brave new medical enterprise is now an everyday one. It’s not that it’s no longer impressive — it’s just not surprising anymore.
Yet something happens the first time you peer into an infant’s open heart, formerly beating, currently stopped, while a surgeon manipulates its innards, correcting with scalpel and stitch what went wrong when some tiny strands of genetic coding crossed. The sight defies belief. This isn’t a real 5-month-old on this operating table, with its chest sawed open and its strawberry-sized heart sliced down the center — it can’t be.
But it is. And not only that, but after hours of surgery, this child’s heart, stitched up and restarted, might well beat once again, sending blood and life and a future to a body that earlier this day was dying. What happens when you see this is something both unreal and hyper-real. It’s something awesome and emotional. Something spiritual.
You feel small.
Standing there, looking down into the atria and ventricles, the enormous scale of the operation hits — and the stakes. Hearts aren’t meant to be seen. When they are, it usually means someone has died or might soon. As far as treatments go, heart surgery represents the nuclear option, a bold final effort to save a life by bringing it to the brink of death. The risks are high.
What most people probably don’t realize is that, aside from the surgeons, there’s an entire hospital staff who in one way or another contributes to what happens on the 18th floor. Weeks ago a cardiologist diagnosed the baby’s condition and recommended surgery. Before any incision could be made, nurses prepared IVs, catheters, and monitoring devices. Before that there were people who admitted the child and comforted its worried parents. Someone cleaned and stocked the waiting area where they now sit, nervous and scared, not knowing how long the wait will last or whether those desperate hugs and kisses they gave their baby in the holding area will turn out to be the last.
Ten people in this operating room have devoted their lives to these sorts of surgeries, the very tip of medical cutting-edge. They went to school for years, endured grueling residencies, and outperformed their peers to do it. Some run the bypass machine, some control the anesthesia, some watch the echocardiogram. All respond to the direction of the surgeon on this April morning.
All these things hit you as you watch the painstakingly delicate handiwork a heart surgeon must perform to correct a problem without causing a new one. Infant hearts are tiny, the arteries and veins smaller still. There’s little room to maneuver the sharp surgical tools. The heart is bloody and slippery, and manipulating its shape or orientation to get at the chamber that needs attention calls for an elaborate system of strings, which must be passed through sections of heart muscle like a marionette then pulled gently to roll the organ left or right, up or down. Meanwhile, the baby’s life hangs in the balance.
On his way toward the heart, Fraser had cut a small piece of the pericardial sac, which surrounds the heart and lungs. From that he’ll create a patch to separate the two atria, another the two ventricles, and repair two valves that let blood into the heart. Measurement after measurement, stitch after tiny stitch, Fraser goes to work. His hands move rapidly and with purpose. He changes instruments often. An assistant squirts his hands down to keep the latex gloves from sticking. There are a few false starts, a couple of darnits uttered, but in time the patches are in and he stitches the heart back up. Three steps down, one big one still to go.
* * *
One of Sir William Osler’s sayings that Fraser quotes is: “It is astonishing with how little reading a doctor can practise medicine, but it is not astonishing how badly he may do it.” Fraser reads voraciously. The sitting room at his home is covered with books, everything from poetry to literature to philosophy. He recently finished Gabriel Garcia Marquez’ Love in the Time of Cholera. “You know he and Castro are buddies,” Fraser says.
Among his favorite articles is a 2006 piece in the New England Journal of Medicine called “Thoughts from the Transition Zone” by J. Terrance Davis describing an experience many surgeons have of flying across the country to harvest live organs for transplant. “It’s the most poignant description of what we do that I’ve read,” says Fraser.
When a person falls into a vegetative state, if she is a donor, her blood and body type are compared against the donor waiting list, and by some marvel of international medical administration, hospitals across the country with patients on that list are notified immediately. “When that happens,” explains Fraser, “we put a surgeon on a plane right away and one of us stays and prepares to do the transplant. It’s almost always in the middle of the night.” Then the hospital pages the patient on the donor list, who could be anywhere and have been hoping and praying for that pager to go off for years, and tells them a donor has been found. They then have a matter of hours to get to the hospital.
The midnight flights to and from the hospital where the donor lay unconscious are what Davis describes as the transition zone, and for Fraser they adopt an otherworldly feel. The jumping on a jet, walking through the foreign hospital wearing foreign scrubs, past the grieving family who knows exactly why he has come, harvesting the heart alongside other surgeons from other hospitals, who are harvesting the liver or the kidneys, then getting back on the plane and flying back to Houston, the organ stashed in a cooler between his legs, and arriving at his own hospital to find a completely different environment, one of great hope instead of great sorrow — all of it takes on a transcendental gravity for Fraser.
* * *
Three steps completed, one still to go. Getting the patient back off of bypass is no easy matter, and in a way it’s a moment of truth. The heart opened, the fix made, and the heart closed back up, this is the first chance to see whether it will work.
The heart is restarted. It’s beating fine. Fraser instructs the perfusionist, the person who runs the heart-lung bypass machine, to reduce bypass to 90 percent. “Yes, sir. 90 percent.” All’s OK. Then 80 percent. Something beeps in the background. Now 70 percent. More beeping. Fraser looks thoughtfully at the heart. The beeping gets louder, more urgent. Something’s not right. Fraser looks down again, then back up at the monitor. The patient’s vitals are falling. “Go back on bypass,” he says.
A great many people have arrived in the operating room. Some had been here earlier and left. Others are new. The atmosphere has turned tense, and everyone’s alert at their stations.
The patient is safely on bypass, but Fraser’s perplexed. “I’m not understanding this,” he says, between looking up at the monitor readings and checking around the heart. He’s wracking his brain. The minutes crawl by.
Every time they try to back off the bypass, the patient responds poorly. The problem doesn’t appear to have to do with the heart, which is beating fine. Apparently the lungs are to blame.
Fraser seems mostly frustrated at not being able to do something. There doesn’t appear to be a surgical fix for the problem, so he must stand there, his hands restless, watching the monitor, hoping in the seconds between each update that the numbers will improve.
As the minutes turn to half-hours, the experience drives home what an audacious idea the notion of heart surgery is. There’s no such thing as a minor surgery. It is risky, intrusive, Promethean work trying to fix what nature got wrong. And even the very finest surgeons in the world sometimes get stumped.
Fraser tries again to back off the bypass, this time in smaller, slower increments. Ninety percent. Stop, wait. A few beeps and a slight downward slope on the graph. Then steady. Now 85 percent. A few more beeps but no crisis. Slowly, and with caution, they back off the bypass completely, and in time Fraser is satisfied that the patient is stable. He begins the long, slow effort to stitch up the child’s chest and wire shut its sternum. At 6:15 p.m., he finally steps away from the operating table for the first time.
When surgery goes well, and Fraser manages to fix and restart the heart, ease the child off of bypass, and sew up its chest; and when, after eight nonstop hours of intense concentration, he finally steps back from the operating table; and when, hours later, the infant opens its eyes and sees its parents’ faces, the whole episode seems, in a word, miraculous.
For Chuck Fraser, this is why he became a surgeon. It wasn’t just because he had the brains, the hands, and the constitution for surgery. It wasn’t for fame, prestige, or money. He became a surgeon for those moments afterward when it becomes clear that a child’s life has been profoundly changed. “I became a surgeon because the results are immediate,” he says. “I became a children’s heart surgeon because the results last a lifetime.” It’s what gets him up every morning, what sustains him through emergency weekend-long transplant operations, and what makes the time away from his family worth it. His wife, Helen, says, “It’s the difference between a job and a calling.”
* * *
At a little after 7 p.m., he’s just passed the 13-hour mark and Fraser is sitting in his office on the 19th floor. He’s still in his surgical scrubs and hat, leaning back in his chair, elbow on desk, head on fist. He stares vacantly ahead: he’s just now coming down from the adrenaline high. Far from a hero’s welcome, several dozen e-mails await him, and he expects an hour of paperwork still ahead.
Shortly after 8 p.m. Chuck Fraser turns out the lights in his office. His secretary has long since left. He bids the crossing guard good night as he walks back to his suburban and drives his tortuous route home.
What amazes someone when this miracle is his daily grind?
Fraser’s not in the mood to talk about the surgery. Instead his mind is on fly-fishing. He tells the story of a time he fished Silver Creek in Idaho, a fly-fisherman’s mecca known for having water so clear that though you can see the fish, the fish can see you too. “The fish are very picky,” he says. “Sometimes they will bite only one kind of fly, and you have to present it to them perfectly. Once they see your line, it’s over, so you’ve only got one shot at it.”
When he first arrived at the banks, Fraser spotted a huge brown trout in the stream and decided it would be his target. Keeping to the brush and trees along the banks, Fraser stalked upriver, careful to say out of sight. Once safely upstream, he waded into the water and began the intricate weaving motion fly fishers make with their rods. Then, with one last swing, he cast the fly just in front of the trout, and it burst up out of the water and took it whole.
“It was amazing,” says Fraser. “Totally amazing.”

Monday, July 14, 2008

so lucky



We are enjoying having Parrish home so much- here are daddy and Parrish catching a nap. We have ordered announcements that should be coming soon- hope we ordered enough but will post online if not. We are so lucky to have this little miracle in our lives. People have commented to us that they don't know how we can handle 'this' and the truth is: looking into his beautiful innocent face, how can we not fight and do everything in our power to see him through this. It is a lifelong committment, and while we don't know if he will make it to college or to have children of his own- we can only focus on the fact that he is here today and hope we are lucky enough to keep having more tomorrows with him. We are so lucky to be in his life and he is lucky to have all of you caring and praying for him....

Red thought the baby's bed was HIS!


And STILL thinks that lol


My handsome husband in uniform


Playing around in Galveston at the army surplus store


It says "started with a kiss and ended up like this" lol

As promised-


ashley loves murvin oxoxoxoxoxxoxox


at the waterfall fountain near the galleria


my studmuffin :) xoxox


this says "i love mommy" on my tummy lol. i look amused don't i?!



proud parents to be :)

The Parrish update is that we went to the doctor and they said he was gaining weight and looks good. We finally had a bunch of disposable cameras developed so here are some pics of mommy and daddy before the titles ;D

Sunday, July 13, 2008

:)

I have a few days of updates to give. Friday was his first Single Ventricle Clinic visit. He had a chest x-ray done when we got there, and everything looked good. It was funny because right when I got his shirt off and put him on the table, he raised his arms over his head (assuming the position!) like he just knew what to do. It was so funny :) Next they took his vitals and it was interesting because the blood pressure was different between his arms and legs. He had an EKG done which went well, and they said the wound on his chest is healing well. Instead of having to come back in a week, they said we can come back in two weeks because he is looking good :)

Yesterday we had what we call 'family nap'. It was great- mommd, daddy, baby and two cats ALL get to have a nice long nap at the same time lol. We are hoping to make it a tradition.

This morning he started becoming interested in his activity swings and playmats. He figured out that kicking it makes the lights and music come on :) And I swear he is starting to SMILE. New pics to come soon- we finally took a couple of disposeable cameras to get processed so we have a variety to post- some of me pre-parrish's arrival :P

Thursday, July 10, 2008

Can I get a 'C' for colic?!

Well Parrish was just mr. fussyguss all day long. Even with all the new gadgets and contraptions to sit in or play with he was just fussy. Hungry and fussy should I say. Tomorrow is his weekly Single Ventricle Clinic appointment where they check stuff out for the week previous adn I guess make a new plan from there. I'm not too worried since he's been gaining sooo much weight in these past few days :) If you send me your email I can send an invite for you to get our pictures from shutterfly.com and i'm hoping to get some more up on this site soon :)

Tuesday, July 8, 2008

Back home- again

We were let out of the hospital again today. So of course I am happy and overwhlemed at the same time because I had barely begun getting the house into some kind of order when we had to go back in so this place is hella- messy! lol. He was discharged with a prescription for an oral antibiotic for his chest which looks much better than yesterday. Those doctors were just digging and squeezing on my baby- without pain meds- and I about fainted when they did that yesterday. Just like I almost fainted when they were 'fishing' for a vein to thread to draw blood and get and IV in. But, home at last and now the new task is re-attempting to get on a schedule of somekind... He gained weight again this morning so that's a good sign. That's all I can think of at the moment, more updates soon.

p.s. he was talking to his reflection yesterday and making little noises lol

Monday, July 7, 2008

the hospital is letting me go home with THEM?!?!


I am soooo proud lol....


Good and not-so good news...

We are still in the hospital, but hopefully checking out tomorrow. Waiting on the results from the cultures they took from his infected incision. They told me today that it was STAPH!?! I was like, what?! And apparently the last time his incision got infected it was staph then, too, but they didn't share that with us. So they need to see if the oral antibiotics are working or if the chain is resistant. Other than that, he gained weight again today and that is a good sign. He is tolerating his new formula that has been increased from 24 calories to 27 calories. He had an echocardiogram today and it went fine. His next appointment is on Friday. I keep trying to add photos on both of his pages and keep running into issues :(

Sunday, July 6, 2008

good news!

Thankfully we have GOOD news today. He gained weight! :) They have increased the caloric value again of his formula and he is tolerating it well so that should mean he can eat less because of its higher value adn conserve some energy. His lab work all came back good- no infection going on which is such a relief. We were sooooo worried after our ER visit. But I guess they have to give you worse-case just in-case.... tomorrow he has a cardiologist appointment where he meets with his single-ventricle team adn has a few tests. He will be coming back to TCH once a week, usually on Fridays for this team appointment adn we will continue the monitoring at home. His next surgery is tentativly still scheduled for OCT/ NOV so we have to try adn be extra cautious until then. Will try adn post tomorrow what his docs said and i think i have a few pics from before we got here Friday i'll try adn post later :)

ashley

Saturday, July 5, 2008

Hi there. Well, little Parrish has had a set back. He has been losing weight, and that apparently is not good. I called the doctor yesterday and they had me bring him into the ER. He had such a traumatic night- they tried 4 times to draw blood and start an IV and he was screaming his little head off- and the sugar water they gave to him only made him woozy. THEN- this surgeon tried to pop these pustules on the incision and the morphine they gave him hadn't kicked in yet.... i have NEVER heard such screams from our little guy and it got us both upset. A doctor told us that sometimes weight loss can be an early indicator of fatality which totally freaked us out. But they admitted him and we've moved back into the hospital. His blood work came back normal, so we are going to try adding higher calories to his formula and see how that goes. Keep him in your prayers he's had a tough couple of days.

Thursday, July 3, 2008

Yesterday was his first pediatrician appointment. She said he has grown 2 inches and is 8lbs :) So far things have been going good- he just has ALOT of gas! lol. I called to check in with his cardiology nurse to get feedback about our home monitoring to make sure we were doing it right, and she was a tiny bit concerned about his weight gain. I am supposed to call tomorrow to check in again because if he loses more than .03kg in three days OR doesn't gain more than .02kg in three days- it could mean there is something going on. He hasn't gained , so we will see how tomorrow morning goes.

Does anyone have any advice on how to get him on a feeding and nap/ sleep schedule?? Email me please at ashley_u233@yahoo.com or you can post on this site by creating a username and password :)

Will update tomorrow - hope everyone has a fun July 4th! Murvin has to work overnight so its just me and little man.

P.S. our cat Red has become very protective of Parrish lol. When he cries he gets concerned and checks on him, and when he's in his swing Red sits underneath and listens for him lol.

Tuesday, July 1, 2008

Our first day home...

Monday was a very long day. We were packed up and ready to go in the morning but didn't get to actually leave until almost 6 :P What took so long was that we had to wait on his pulse-ox machine. It measures the level of oxygen in his blood and his heart rate. We have a notebook that we have to record what he eats and when, his heart rate and oxygen stat and keep track of his weight. Its alot- but all this work is helping keep him healthy so its worth it. It made me so nervous when a nurse the other day told me that even when babies go home in good health sometimes they still pass away once they go home, and that really scares me. But we got all settled in, and my dad came to help out the first night and to get a few things we didn't receive at the shower that we needed which was very helpful! Today my mom and brother came to see us and help out and my friend came by last night and dropped off all kinds of clothes and activity things for him :) That was sooo nice too and helped save us a lot of money. It felt really weird having him home FINALLY after all the waiting. Our place is a disaster since we haven't been here for almost a month so I have a lot of work ahead of me :P But having our family together is just a nice, warm feeling. The cats are getting to know him- and Red even gave him a little nuzzle on the arm today! Tomorrow is our first pediatrician appointment, and then next week he starts seeing his cardiologist once a week until his next surgery which is tentatively scheduled for October/November.

Is everyone still able to get these updates? Since no one has posted on here I just wanted to make sure you are still able to keep up with him.

IF YOU WANT TO HAVE A MESSAGE TO PARRISH PUBLISHED IN HIS CAREPAGE BOOK, PLEASE ADD YOUR COMMENTS ASAP because the ability to make it into a book won't be available after July 31 and I want to make sure to order it- so POST BEFORE THE END OF THIS WEEK PLEASE!!!!!!!!!!!!!!

love to all!
ashley

100 Wishes for Parrish

  • 1.a handsome look- madeline
  • 2.adventure- nathan
  • 3.all the love in the world- uncle matthew
  • 4.best of health- uncle matthew
  • 5.bravery- mommy
  • 6.charming personality- madeline
  • 7.common sense-jane
  • 8.compassion-jane
  • 9.courage- daddy
  • 10.curiosity-daniel
  • 11. generosity- mommy
  • 12. gentleness- mommy
  • 13. health- mommy
  • 14. humbleness- mommy
  • 15. humor-nathan
  • 16. inner strength- mommy
  • 17. integrity-matt
  • 18. intelligence- daniel
  • 19. long, happy & fulfilling life- uncle matthew
  • 20. many caring people in your life that you can call family & friends- the cowleys
  • 21. no regrets- uncle matthew
  • 22. strength-matt
  • 23. true love- mommy