What you can do

A lot of people tell me "Let me know if you need anything" or "What can I do to help?"
Honestly, we need support. You have no idea how much it means to hear people ask how the baby is, or if we need any gas money. Just knowing that you are thinking of us moves us beyond words. And to the people who have sent us money: we are forever in your debt.

I want to send a super-uber-I-love-you to the guys and gals of Mount Olive Correctional Complex. For the past two days, they have held a hot-dog sale in our name and have raised a little chunk of change for us. The fact that they even organized a sale moved me to tears. I haven't met any of the officers, but I talk to them daily and I want them to know "you ROCK". Not only officers but office staff, kitchen staff, the front desk lady Debbie (thanks for the food!!), Shanna (you rock girl), and the guys who ask how the baby is when I call for Hubby. You all are amazing and Hubby and I could not be more appreciative and thankful for your support and your prayers. Thanks guys.

I have added a "Donate" button on my blog for those who want to help out. I am, by no means, asking or guilting anyone for money. It's just there as an option. I want to stress that any and all money donated will NOT be used for anything other then medical bills, gas money, or other hospital related needs (like food). We are eternally grateful for any donations.

Another option for those interested is to donate to the Ronald McDonald House in tribute to Peanut. Without this house, we would not be able to stay up here with him. They offer a room, food, laundry, a kitchen; the whole nine yards for only $12/day. Then at the end of our stay, if we are not able to pay, they will not ask us for any money. It is considered a donation if we do pay. My parents have covered our first 30 days here, but we have surpassed that already. You can even send food, clothes, baby toys, carseats, shoes...etc. and someone in need will be very thankful for your contribution. The Ronald McDonald House is strictly non-profit.

For more info:   http://rmhc.org/

To send donations or call:

Ronald McDonald House in Morgantown
841 Country Club Drive
Morgantown, WV 26505 USA

Phone: 304 598-0050
Fax: 304 599-0780

Looking back

Watching Monkey go home yesterday made me cry. I really miss that kid. It got me to thinking about when he was younger. I'm so thankful I was able to stay home with him for his first year of life. 
I was there when he stood for the first time:

His first split:

His first squishy face: 

His first escape attempt:

He has grown up so fast.


How the time has flown :(

I'm realistically optimistic...

Before all these tests, before the surgery, and before Peanut; I was a realist. I wasn't the one who looked at every situation like it was covered in paisleys and sunshine. I was the one who pointed out the storm cloud on the horizon. 
My theory was: If you don't have expectations, then you won't be disappointed. That theory has never failed me. 
But now, considering everything that is going on. I have to be optimistic, if only just a little. I wouldn't be able to sit here for hours at a time by myself and think negative thoughts. I would self combust from the overwhelming possibilities of things that could go wrong. On the other hand, I also cannot sit here for hours at a time and think sunshiny, bouncy, happy, bedazzled in candy hearts kinds of thoughts. I would die of a sugar high induced coma if I did. 
So I have chosen to be realistically optimistic.
I optimistically think that everything will be okay while still taking into consideration the fact that there are risks. Yes, he is having trouble getting enough oxygen, but he is sucking on his pacifier no problem! 
Yes, he is having a little setback, but he has made great progress!
I love my son too much to think negatively. I should not be allowed in here if I was that way. It's not good for me, for my family, and definitely not good for Peanut. Children depend very highly on the composure of their parents. If you are high strung, snapping at nurses, and causing a scene; then your child is going to get a whiff of your craziness and feel scared. You must, for the sake of your child, maintain composure and common sense. You must ask questions, stay informed and educated, and alert of what is going on. 
The doctor has started calling me "the Scribbler". Every morning at rounds, I have my little blue notebook out, pen poised, ready to take notes. I ask questions when I don't understand and I look up terms and medications when I don't know what they are. I have taken notes since the very first day and I don't plan to stop. I have had to correct doctors on occasion when they forget something. 
The other day when they had taken Peanut off the nasal CPAP and back on the nasal canula; he wanted to start tube feeding him breast milk.
"Um...Doctor? I though he was supposed to be on fat free formula for six weeks?"
And I was right.
You must be on your game when you are put in these kind of situations. Since this is a long term game, I have to be sure I follow what the doctors are saying and stay up to date on medications and feeding schedules. You never know when the doctor will look at you and ask "What did we do yesterday?".

Socializing does a body good

The longer I'm here, the more I am coming to understand that talking helps with everyday life.
You don't have to talk about the bad things, but just talking to other people helps you feel normal. Like you aren't 4 hours away from home watching over your sick baby. Instead you are a normal mother, chatting over spaghetti and Texas Roadhouse rolls.
I'm usually not the kind to sit down with a stranger and start a conversation. But here lately, I've been making an effort to chat with people and ask about their children. I've met a lot of young mothers, not all have a terribly sick baby, but some have kids that are worse off then mine. Hearing about those kids makes me feel grateful that my baby, heart condition aside, is healthy and thriving. Other mothers aren't so young. I talked to a woman the other day who told me about her baby who was born about 3 months premature. She had to be in her 40s, so it was a high risk pregnancy to begin with. Her daughter is a little over two pounds, but is doing very well considering she was only about a pound when she was delivered. The mother went on to tell me that they were in such a hurry to get the baby out, they gave her a c-section with the incision going vertically! I thought doctors didn't do c-sections like that anymore, but I stand corrected. Seeing the teen moms are what break my heart. I talked to a young couple who just had their first child at 18 years old. It makes me tear up to think that they have to go through. What should be a very happy time spent with family instead they are spending it in a hospital. Waiting and worrying if their child is going to make it. They told me their daughter had to have heart surgery as well. She had her surgery right around the same day Peanut did, so we will all be here about the same amount of time.
A woman that works here told me stories of very young teen moms that have had to stay here. Some as young as 14. I can't imagine being pregnant at thirteen...thirteen years old. That blows my mind. I barely knew about the birds and the bees when I was thirteen. That is way too young in my book, and should be in anyones book! To one: be sexually active, and two: and to have a sick child; it breaks my heart.

I know I will meet more families the longer I am here. Some are only here for a couple days, some are here for up to three or four months. As I'm working on my second month here, I understand what it's like to settle into hospital life. It's like having a job you don't really like. You go to sleep physically and mentally exhausted and you wake up, disappointed, that it wasn't a dream. You drag yourself to "work", sit around for hours at a time, then go back "home" to start it all over again. 
Those short moments when you are talking to other people, you forget for a moment why you are here. Those moments are what get me through the day. 
Those moments help me feel sane.

Month one

As this first month has flown by, it has gotten easier to deal with hospital life.
I have learned medical terms, doctor's names, heart medications, and where to get the best cheeseburger. I have laughed, cried, and been bullied by Depression. But most importantly, I have watched my baby recover wonderfully.
It hasn't all been easy. I battle daily with myself; trying to focus on his amazing progress instead of dwelling on his syndrome. Everyday I learn something new about Williams Syndrome. Some things are cute; like the inquisitive nature and asking questions you as a parent aren't prepared to answer. Other things are harder to deal with. The many medical problems, the therapists he will need, the bullying he will experience in school and the hardest yet: the look he will get when he realizes he is different from the other kids.
"I want to be normal like you mommy" A fellow Williams mother was told this the other day and I felt pain alongside her, knowing that someday I just might hear the same thing.
I try not to think about it but it's hard. I joined a Williams Syndrome support group on Facebook and for the most part it has been wonderful. The support these ladies pour out is amazing; they can answer my questions and join in my happiness as my baby gets better. But it is also hard. It's hard to see other children with Williams and know what Peanut will have to go through. Williams kids hit their milestones years after other kids. I read how some children are 5 and are still in diapers, others are 8 are still eating baby food. This scares me.

It's sad then you see other babies leaving the PICU, able to go home with their families, while Peanut has to stay. The step-down unit is almost empty. It's not as busy with so many kids gone, its quieter, and lonelier.
On a happier note; Peanut is recovering wonderfully. The doctors are working on weaning him from his medications and the oxygen. He has had tests done for other symptoms, and thankfully nothing was found. I am hoping that no other physical characteristics of Williams show up. So far, he only has problems with his heart. No kidney, gallbladder, or eye problems. He did fail his hearing test in his left ear but hopefully his hearing loss isn't too significant.

I don't do much during the day. My day starts around 7:30; I wake up automatically with no alarm. I get dressed, get in my car, drive across the parking lot and park. My commute is pretty short :) On nice days, I walk.
My breakfast is waiting on me when I get to the hospital room. Since I am pumping, they provide me (free of charge) breakfast, lunch, and dinner. I eat as I wait for rounds. The doctors usually show up between 9:30 and 11. By that time, I might as well wait on lunch. So I'm usually at the hospital from 8am to 1. I usually go out for a bit, just driving or shopping to relax and get away from the hospital.
It took me about two weeks, after we got here, to laugh without feeling guilty. I didn't want to go anywhere or do anything because I felt like a bad mother for leaving. People tell you that you have to take care of yourself in order to take care of your baby but I didn't hear them. I just see my sick baby and I stop thinking about myself. Now that things have slowed down, I can go get a bite to eat, or do some light shopping without feeling so bad.

I do have a lot of time to think. I think about when I was pregnant. Why didn't they notice anything in the ultrasounds? Can't they pick up on heart problems with an ultrasound? I had a perfectly normal pregnancy. No cramping, no bleeding but I wonder; what if they had seen it earlier?
I can't blame my OB though. She is an amazing doctor but she's not a cardiologist. I don't have any hard feelings against her, just sometimes I wish I could have known sooner.
And then I think: No, I'm glad I didn't know.
I'm glad I was able to take him home not knowing that he had a life threatening heart problem. I would have been a nervous wreck, not sleeping and constantly checking him to see if he was still breathing. Those 5 days I had him home with me were beautiful. I was sleep deprived and cranky, but seeing that tiny little boy made me smile. I love his cute little baby sounds and, of course, the way he smells. If they made a perfume of "Ode de Newborn" I would wear it every day.
I thank God Peanut survived those first couple days. The cardiologist we saw the first time told us he shouldn't have survived birth.
"He should have died when they cut the umbilical cord."
But he didn't.
He is alive and thriving.
He is my little Peanut and he's beautiful.

We still have at least two weeks here. By the looks of it, I will be spending my birthday in a hospital. I talked to the Counselor they have here yesterday, and she said she would make me a cake. :) She is really nice, and she listens as I blab and blab about anything and everything. Since Hubby is gone, I don't really have someone to blab to while I'm just sitting around. I know I have people I can call, but its nice to have someone here in the hospital to talk to.
The staff are amazing. They have a department called Child Life; their job is to come around and distract the kids while they are being examined or getting a shot. They come by and pass out toys and stuffed animals. The Child Life guy, Joe, is here specifically for the PICU. He stopped by yesterday to see if we wanted any toys or books.
"I think he's a little young for these Joe"
"Well, you're not! Take some..here, heres a book"
"Um, okay"
"And take some of these stuffed animals, take 'em all, where's your car?!"
"Har har."
Like I said, the staff are amazing.

I miss my firstborn, and my hubby all the time. I know its better this way; for Hubby to keep going to work and for Monkey to visit once a week. But I miss being there for everything. I've never been away from Monkey this long before. I'm missing him growing and I hate it. He's learning new words and actions, and is growing like a weed and I'm not there for it. I get the updates and hear his silly sounds over the phone but it's not the same. I'm just glad Monkey isn't old enough to really understand what is going on. He is just on one big vacation and is loving the attention. That makes it a little easier.

The support from friends and family is overwhelming. The staff at the prison where Hubby works have been so understanding; it makes it less stressful when Hubby wants to take some time off. They are organizing a Hot Dog sale to help us with our bills.
Which have started flowing in, by the way. We got the first of Peanut's hospital bills yesterday. Let the tally begin! Our insurance (SHOULD) cover up to 2 million, which I'm told we will reach quite easily. I'm going to keep everything and add it up to see how much Peanut's surgeries, medications, room stays, etc. are costing. I follow another blog of a newborn with a brain tumor (read more here) and one MRI cost $24,000. So I'm expecting a huge bill for his heart surgery. It should be fun!


I realized I never covered what exactly Peanut has in this blog, so here ya go.
His diagnoses are the following:

Interrupted Aortic Arch: a blockage within the aorta obstructing blood flow.
When we saw the Cardiologist the first time, on Feb 25th, he sent us to Raleigh General Hospital for Peanut to be put on Prostaglandin; a medication to keep his aorta open. ***I found this on Wikepedia so I cannot say how accurate it is but: failure to treat an IAA yields a mortality rate of 90% at an average age of 4 days.
For the record, Peanut was 5 days old on Feb 25th. (!!!!!!) Also, 50% of patients that have an IAA have DiGeorge Syndrome. Peanut was lucky enough to have Williams (which caused the IAA) instead of DiGeorge; as it is much worse. One of the doctors told me that they have never seen a Williams patient that has an IAA. Usually it is the DiGeorge patients, so this is really quite rare. He said he was confused and had to go look up Williams Syndrome again to make sure that the diagnosis was right. He also said that, with our permission, he would submit Peanut's medical information for other Williams patients to be aware of.

ASDs or Atrial septal defects: Multiple holes in the wall between the two upper chambers of the heart. This is a congenital defect that presents at birth and may fix on its own. The doctors are not worried about these and are hoping they will close on their own.

VSDs or Ventricular septal defects: a hole in the septum (partition between tissues or cavities) that divides the two lower chambers of the heart. These will have to be corrected with surgery; the date has not yet been set. They want to wait as long as possible for Peanut to get stronger, but they also have to do it as soon as possible because he can't live with holes in his heart for too long. So it is a delicate balancing act.

Double outlet right ventricle: This concerns the two holes in the wall of his right ventricle. This is why they had to put a clamp on his pulmonary artery. The pulmonary takes blood from the heart to the lungs and the two holes are causing too much blood to flow to the lungs. The clamp slows down that flow so that there isn't fluid buildup in his lungs. This could cause respiratory problems.

Atrial Tachycardia: Where the heart sends too many signals to beat and you end up with an higher then normal heart beat.

Prolonged QT: This has to do with his faster heartbeat as well. It is complicated but it concerns the electricity in the heart.

Williams Syndrome: This is quite long but it covers it well and is easy to understand.

The information in NORD’s Rare Disease Database is for educational purposes only. It should never be used for diagnostic or treatment purposes. If you have questions regarding a medical condition, always seek the advice of your physician or other qualified health professional. NORD’s reports provide a brief overview of rare diseases. For more specific information, we encourage you to contact your personal physician or the agencies listed as "Resources" on this report. 

Copyright 1986, 1987, 1988, 1989, 1992, 1993, 1995, 1996, 1998, 1999, 2000, 2002, 2003, 2006 

General Discussion
Williams syndrome, also known as Williams-Beuren syndrome, is a rare genetic disorder characterized by growth delays before and after birth (prenatal and postnatal growth retardation), short stature, a varying degree of mental deficiency, and distinctive facial features that typically become more pronounced with age. Such characteristic facial features may include a round face, full cheeks, thick lips, a large mouth that is usually held open, and a broad nasal bridge with nostrils that flare forward (anteverted nares). Affected individuals may also have unusually short eyelid folds (palpebral fissures), flared eyebrows, a small lower jaw (mandible), and prominent ears. Dental abnormalities may also occur including abnormally small, underdeveloped teeth (hypodontia) with small, slender roots. 

Williams syndrome may also be associated with heart (cardiac) defects, abnormally increased levels of calcium in the blood during infancy (infantile hypercalcemia), musculoskeletal defects, and/or other abnormalities. Cardiac defects may include obstruction of proper blood flow from the lower right chamber (ventricle) of the heart to the lungs (pulmonary stenosis) or abnormal narrowing above the valve in the heart between the left ventricle and the main artery of the body (supravalvular aortic stenosis). Musculoskeletal abnormalities associated with Williams syndrome may include depression of the breastbone (pectus excavatum), abnormal side-to-side or front-to-back curvature of the spine (scoliosis or kyphosis), or an awkward gait. In addition, most affected individuals have mild to moderate mental retardation; poor visual-motor integration skills; a friendly, outgoing, talkative manner of speech; a short attention span; and are easily distracted.

In most individuals with Williams syndrome, the disorder appears to occur spontaneously for unknown reasons (sporadically). However, familial cases have also been reported. Sporadic and familial cases are thought to result from deletion of genetic material from adjacent genes (contiguous genes) within a specific region of chromosome 7 (7q11.23).

Williams syndrome is characterized by a wide spectrum of symptoms and physical features that vary greatly in range and severity, even among affected family members. Individuals with Williams syndrome will not have all the symptoms listed below. Some affected individuals do not have heart (cardiac) abnormalities; others may not have elevated levels of calcium in the body (hypercalcemia). In addition, the severity of these symptoms often varies greatly from case to case. 

Some children with Williams syndrome may have a low birth weight, feed poorly, and fail to gain weight and grow at the expected rate (failure to thrive). Symptoms such as vomiting, gagging, diarrhea, and constipation are common during infancy. Some affected infants may have elevated levels of calcium in their blood (hypercalcemia), leading to loss of appetite, irritability, confusion, weakness, easy fatigability, and/or abdominal and muscle pain. Calcium levels usually return to normal around the age of 12 months. However, in some cases, hypercalcemia may last into adulthood. Linear growth may be delayed during the first four years of life. However, growth spurts usually occur between the age of five and 10 years. Most people with Williams syndrome are less than average height during their adult years.

Newborns with Williams syndrome have characteristic "elfin-like" facial features including an unusually small head (microcephaly), full cheeks, an abnormally broad forehead, puffiness around the eyes and lips, a depressed nasal bridge, broad nose, and/or an unusually wide and prominent open mouth. Additional features may include a vertical skin fold on the inner corners of the eyes (epicanthal folds), a small pointed chin, prominent ears, and/or an unusually long vertical groove in the center of the upper lip (philtrum). Some infants with Williams Syndrome may have dental abnormalities including malformed teeth (i.e., hypoplastic enamel), small teeth (microdontia), and upper and lower teeth that do not meet properly (malocclusion).

A star-like (stellate) pattern in the iris of the eye may be apparent in about 50 percent of children with this disorder. It is most pronounced in those infants with blue or green eyes. This pattern may be harder to see in those children with darker eyes or it may not be present. Affected infants may also experience inward deviation of the eyes (esotropia) and farsightedness (hyperopia). 

Children with Williams syndrome are extremely sensitive to sound and may overreact to unusually loud or high-pitched sounds (hyperacusis). Chronic middle ear infections (otitis media) are often present.

Motor development, (e.g., sitting and walking) and/or gross and fine motor skills (e.g., picking up an object) may be delayed. The development of secondary sexual characteristics (e.g., pubic hair and underarm hair) may occur prematurely (precocious puberty) in children with this disorder. Breast development and menstruation may occur earlier than expected in females with Williams syndrome. Individuals with this disorder may also have an unusually hoarse voice.

Congenital heart defects (CHD) occur in approximately 75 percent of children with Williams syndrome. The most frequent defect is supravalvar aortic stenosis, a condition characterized by the narrowing of the aorta above the aortic valve. The aorta is the main artery of the vascular system. Blood passes from the left ventricle of the heart, through the aortic valve, and into the aorta. In supravalvar aortic stenosis, the area above the aortic valve becomes unusually narrow. Symptoms may include fatigue, pain in the chest, dizziness, unusual heart sounds (murmurs) and/or temporary loss of consciousness (syncope). The amount of narrowing of the aorta may vary among affected individuals. 

Additional congenital heart defects associated with Williams syndrome may include pulmonary artery stenosis, and/or septal defects. (For more information on these heart defects, see the Related Disorders section of this report.) Abnormally high blood pressure (hypertension) is also common in adults with this disorder.

Children with Williams syndrome typically have a personality that is friendly, outgoing, and/or talkative. The appropriate use of language and vocabulary range may be unusually enhanced in some children with this disorder. Mild to moderate mental retardation may occur. However, some children are of average intelligence with severe learning disabilities. Hyperactivity and attention deficit disorder are also common, although most affected individuals have good long-term memory. Some affected individuals may have visual difficulties; they may tend to view a picture in parts as opposed to seeing it as a whole.

Older children and adults with Williams syndrome may develop progressive joint problems that limit their range of motion. Skeletal abnormalities such as backward (lordosis), front-to-back (kyphosis), and side-to-side (scoliosis) curvature of the spine may also be present. Some affected individuals may have a sunken breastbone (pectus excavatum) and inward turning of the great toe toward the other toes (hallux valgus). Skeletal and joint abnormalities may result in an abnormal manner of walking (awkward gait). Skeletal abnormalities may become worse as affected individuals age.

Additional abnormalities may occur in some individuals with Williams syndrome including kidney (renal) abnormalities, chronic urinary tract infections, an underdeveloped (hypoplastic) thyroid gland, and umbilical or inguinal hernias.

Most cases of Williams syndrome appear to occur spontaneously (sporadically) for unknown reasons. However, some familial cases of the disorder have also been reported. Ongoing research indicates that sporadic and familial Williams syndrome result from deletions of genetic material from adjacent genes (contiguous genes) located on the long arm (q) of chromosome 7 (7q11.23). This chromosomal region has been designated "Williams-Beuren Syndrome chromosome region 1" (WBSCR1).

Chromosomes, which are present in the nucleus of human cells, carry the genetic information for each individual. Pairs of human chromosomes are numbered from 1 through 22, and an additional 23rd pair of sex chromosomes which include one X and one Y chromosome in males and two X chromosomes in females. Each chromosome has a short arm designated "p" and a long arm designated "q". Chromosomes are further sub-divided into many bands that are numbered. For example, "chromosome 11p13" refers to band 13 on the short arm of chromosome 11. The numbered bands specify the location of the thousands of genes that are present on each chromosome. 

According to investigators, 28 genes within the 7q11.23 chromosomal region may play a causative role in Williams syndrome including those known as the ELN (elastin) gene, the LIMK1 (or LIM kinase-1) gene, and the RFC2 (replication factor C, subunit 2) gene. The LIMK1 gene is believed to be involved with visual-spatial problems associated with Williams syndrome.

In familial cases, Williams syndrome is inherited as an autosomal dominant trait. Genetic diseases are determined by two genes, one received from the father and one from the mother. Dominant genetic disorders occur when only a single copy of an abnormal gene is necessary for the appearance of the disease. The abnormal gene can be inherited from either parent, or can be the result of a new mutation (gene change) in the affected individual. The risk of passing the abnormal gene from affected parent to offspring is 50% for each pregnancy regardless of the sex of the resulting child.

Hypercalcemia, which is associated with some cases of Williams syndrome, may occur because of an abnormal sensitivity to vitamin D.

Affected Populations
Williams syndrome is a rare disorder that affects males and females in equal numbers and infants of any race may be affected. The prevalence of this disorder is approximately one in 10,000-20,000 births in the United States.

The following disorders may be associated with Williams Syndrome as secondary characteristics. They are not necessary for a differential diagnosis:

Pulmonary artery stenosis is a rare congenital heart defect characterized by unusual narrowing of the vessel that carries blood from the right ventricle of the heart to the lungs (pulmonary artery). This defect usually occurs in association with other heart defects, such as septal defects and/or supravalvar aortic stenosis. Symptoms may include unusual heart sounds (murmurs), difficulty breathing, chest pain, and, in severe cases, congestive heart failure.

Ventricular septal defects are heart defects that are present at birth (congenital) and can occur in any portion of the ventricular septum. The size and location of the defect determines the severity of the symptoms. Small ventricular septal defects can close on their own or become less significant over time. Moderately-sized defects can cause congestive heart failure resulting in an abnormally rapid rate of breathing (tachypnea), wheezing, an unusually fast heartbeat (tachycardia), enlargement of the liver, and/or failure to thrive. Large ventricular defects can cause life-threatening complications during infancy. (For more information on this disorder, choose "Ventricular Septal Defects" as your search term in the Rare Disease Database.)

Attention Deficit Hyperactivity disorder is a behavioral disorder of childhood characterized by a short attention span, excessive impulsiveness, and inappropriate hyperactivity. This disorder is usually observed before the child reaches the age of 4 years. In some cases, it may not be diagnosed until the child starts school. Symptoms may vary depending on environmental factors and typically worsen when sustained attention is required. Symptoms usually improve with frequent reinforcement in a structured setting without distractions. (For more information on this disorder, choose "Attention Deficit Hyperactivity" as your search term in the Rare Disease Database.)

Standard Therapies
The diagnosis of Williams syndrome may be confirmed by a thorough clinical evaluation that includes a detailed patient history and specialized blood tests that may detect elevated levels of calcium in the blood. Another test, known as fluorescent in situ hybridization [FISH], may be used to determine whether a deletion of one elastin gene on chromosome 7 is present. This deletion is believed to occur in the majority of individuals with Williams Syndrome.

Infants with Williams syndrome who have elevated levels of calcium in their blood may be placed on a diet that restricts the intake of vitamin D. Calcium intake may also be restricted. For those children with severe hypercalcemia, treatment with a corticosteroid drug (e.g., prednisone) may be considered on a temporary basis. After the age of about 12 months, calcium levels typically return to normal, even in untreated infants. It is recommended that children with Williams Syndrome also be evaluated by a physician who specializes in endocrine disorders (endocrinologist).

Affected children, who have symptoms related to heart defects, should receive a comprehensive evaluation at a hospital that is familiar with these rare congenital heart conditions. Specialized tests may be performed to determine the severity and exact location of congenital heart defects (i.e., EKG, echocardiogram, or cardiac catheterization). Some children with Williams Syndrome who have severe heart defects may require surgical treatment to repair the defect.

Centers for developmentally disabled children and special education services in schools may be beneficial for children with Williams syndrome to reach their personal potential. A supportive team approach may also be helpful including speech and language therapy, occupational and physical therapy, social services, and/or vocational training. Music therapy has been advocated, thought not proven, as providing enhanced learning and relief from anxiety in individuals with Williams syndrome.

Genetic counseling may be of benefit for people with Williams syndrome and their families. Other treatment is symptomatic and supportive.

The American Academy of Pediatrics released a policy statement in May 2001 on the topic, Health Care Supervision for Children with Williams Syndrome (RE0034).


I saw a post on the Williams Syndrome support group facebook page.
It brought me to tears and I wanted to share it. It was written by a woman with a special needs kids, but it applies to my situation as well.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This decribes how I feel so perfectly, it makes me cry every time.
I may have not planned on having a second child so soon, but after I got over my initial shock I was so excited! I planned what his room will look like, I bought clothes and diapers, I even crocheted him a baby blanket. I was so looking forward to the craziness of having two boys under two. I was excited.
I never thought this would happen.
I can't look at other people's babies without getting sad. I tear up when I see pictures of other people's children. And it's not like I can avoid it!
Babies. Are. Everywhere.
Babies in the hospital, babies at Walmart, babies on Facebook, babies babies BABIES! It breaks my heart. You never know how lucky you are to have a healthy baby till you have one with a disability. I know I took for granted how healthy Monkey is. He is the perfect little man; he reached his milestones earlier then most, he sleeps great, eats great, and is as smart as a tack. But there is no guarantee on how Peanut will grow, eat, sleep, or reach his milestones.
The doctors told us he would never play football. Soccer, maybe, but never football. They even told me he will never breastfeed. Do you have any idea how heartbreaking that is!? To hear you will never be able to nurse your child?! I just want to hold him and I can't even do that. I get to sit by his bed and hold his hand, I get to watch as they try over and over and over to get an IV in. I get to watch as someone else cares for my child. It's heart wrenching.
I worry so much about how his life will be when he gets older. Will he have mental disabilities? Will he get picked on? How will his older brother treat him? Will he feel left out from sports? How will he do in school? What about his heart condition, will he even live through high school?
There are so many different aspects of his life that will be effected and I worry.
But I also smile.
I smile because I have heard by many, that he will be the friendliest child that never meets a stranger. He will be great at music and will crave companionship.
Isn't is strange how a genetic disorder can effect personality?
So we will see how the future unfolds. Hopefully he won't have the harder side of this syndrome. Hopefully he will thrive and grow and never feel different. But we won't know for years.
I do know that I will love him no matter what. I know that I will love him regardless of football and good grades.
I know that I will grow to love Holland. <3


I had meant to explain this in an earlier post, but my memory is non-existent so here ya go.

When Dr. G, the Pediatric Cardiothoracic surgeon was talking to us in the NICU all those nights ago, about Peanut's surgery; he chose a very interesting yet heartwarming metaphor to help us better understand what he was talking about.
He was explaining that he would have to leave Peanut's chest open in case his heart swelled. Then he pointed to emphasize his point, touched my hand very gently and said:
"I like to use the metaphor of the oyster"
Hubby and I just looked at each other.
"A baby's chest is like the oyster, and their heart is the pearl, see."
"I have to leave the shell open so that if the heart swells it does not get crushed. Because the pearl is the most important part of the oyster."

I will never forget that conversation. It showed that this man, who was soon going to be cutting into my son's heart, was a human. He was a human with real emotions and one who could, if just for an instant, show us the depth of his own heart.
It was a very touching moment for me, whether or not the doctor realized it. It was then I knew that this man was going to fix my son.

And that is why it is the title of this blog. :D


I really don't know how I feel about this.
I just found out Peanut has Williams Syndrome. (read more about that here. )

Considering genetic disorders, it's not the worst. He will have problems with math, spatial relations, understanding social ques...left brain kind of stuff. But he will be amazing with music and incredibly friendly.

It's easy for me to say this now, but I honestly felt like something was wrong when I was pregnant. You don't want to say it at the time because saying it might make it come true. You don't want to jinx anything. But I really had this feeling...and it continued when I brought Peanut home from the hospital. His weight, for one, was a HUGE surprise. I was expecting another 8-9lb baby. But instead, they hand me this tiny 6 lb, 14 oz creature. I said it then and I will say it again...NOT NORMAL. There was something about having a baby that is 3 pounds lighter then his brother that didn't sit right with me. When I mention it to the doctor, "Oh, that's nothing to worry about."
THEN there was his breathing. Again, I had a feeling something wasn't right. He was breathing a lot heavier and faster then Monkey ever did. I said it then and I will say it again...NOT NORMAL. I mentioned it to every doctor I spoke to, and they all said "Oh, thats normal for newborns. It will go away."
THEN there were his eyes. My mom mentioned it at first and she was right. His eyes looked swollen. I said it then and I will say it again...NOT NORMAL. We mentioned it to the doctors, and again "Oh, that will go away."
Now. Someone, anyone, I DARE you to tell me my instincts were wrong. I DARE you to tell me I was silly for worrying so much.

Something WAS wrong. His breathing was an indication of his heart defect. His low weight and swollen eyes were an indication of Williams Syndrome.
I was right.

The Corbin Story: continued

March 2nd

Today I get to see my first born. :D
Today I get to hold my toddler. :D
Today I get to spend time with my whole family. :D
But first we have to go to rounds.

Hubby and I are sitting by the window when the doctors arrive. I'm looking forward to not only hearing what they have to say, but learning everyone's names. I have only met Dr. G, the Pediatric Cardiothoracic Surgeon (or Baby Heart Doctor as my dad says), and Dr. R, the Pediatric Cardiothoracic Anesthesiologist (Or Mr. Sleepy :P); so I'm eager to meet everyone else who will be working on my son.
I did not expect there to be a dozen people in my son's room.
Geez...they are really are on top of things here! There are people from Nutrition, Respiration, Pediatrics, Cardiology, Pharmacy, and God knows where else.
It's hard to read name tags from across the room.
I am keeping a journal so I can take notes during rounds and conversations with doctors. God knows I would never be able to remember all these medical terms on my own.
Dr. Rh, the Ped. Cardiologist, looks like Santa. He is short and round with a long beard that he likes to stroke when he is in a deep thought. Then there is Dr. M, his Intensivist (specializes in critically ill patients), Julie the Ped. Nurse Practitioner, and Dr. P, another Ped. Cardiologist.
The doctors ramble off all his numbers and stats for the night, what kind of meds he is on, and their plan for the day.
I write down quotes so I can pass them along. But only the good ones.
"ventilates great"
"stats are good for a mixer" (mixer meaning that the two holes in his heart are mixing the blood)
"better today then when he came in"
Rounds are fun! (only when the news is good of course)

Not too long after rounds my father-in-law, his girlfriend, and Monkey arrive to visit. My parents arrive soon after that.
We all gather in the PICU waiting room. I can't wait to hold my baby, but when I walk in all he does is grin at me then walk away! I had to chase him down just to get a hug out of him. He was obviously happy to see me but he was more interested in checking out the room and the dirty toys tossed in a corner.
Hubby takes his dad and his girlfriend to see Peanut, and when he comes back he tells me there are people waiting for me in the room.
I go back to the room and proceed to fill out paperwork on two programs that Peanut qualifies for and his Social Security paperwork. Turns out he qualifies, at ten days old, for a monthly check!

The rest of the day, we all hang out together, eating and talking. I try to spend as much quality time with Monkey as I can. He's not spending the night; he, my FIL and his girlfriend, and Hubby will all be going back home tonight. There isn't enough room in our little room for all of us to stay. Although people are allowed to, there is no way we would all fit. My parents are going to stay till Hubby is off of work again.
Hubby and I go back to the hospital before he has to leave. It's hard on him. He's almost in tears as he kisses his newborn one last time. We say our goodbyes and I head back to the house.

Over the next two days. The routine is the same. I set my alarm during the night to pump. I have to keep it up so that my supply doesn't dry up. My baby needs breast milk more then ever and I will do whatever I need to to supply him with that. I just wish they would let me nurse but I know that will not be for a very long time.
Mornings are rounds. His progress is good. They are slowly weaning medications and balancing oxygen levels. We are watching his urine output like hound dogs. The more he pees, the better he is doing. So they are giving him a water pill called Lasix. Although it's not a pill, its a medication given through the IV that treats water retention in heart patients.

I meticulously keep track and write down what the doctors are saying. I don't want to miss anything and I certainly don't want to be in the dark. I make sure to look up medical terms and what kinds of medications he is on. I write down Dr's names, what they do, their department. The doctors have noticed my note taking and are starting to slow down to explain things so that I can write it down.
The doctors and nurses here are fantastic and I have yet to run into one rude person.

By March 4th, his oxygen levels are just right and his stats are where the doctors want them to be.
They are ready to go back in his chest and tighten his pulmonary clamp.
They were worried about oxygen levels because it has to do with the pressure in his heart and lungs. If the pressure is too high, they don't want to tighten the clamp and make it higher. Then he will go into pumlmonary hypertension, which could cause more problems. But the pressure also can't be too low.

At 2:30 they are ready to operate. This go around, I'm very nervous. I know I shouldn't be. This operation is much less extensive then the last. All they are doing is tightening a clamp then closing his chest. But I feel so nervous...

About two hours later, they are finished. They tell me they couldn't tighten the clamp as much as they wanted but it is good enough. Dr. G, the cardiologist, tells me if he has to back in and tighten it some more, he will. But right now, it is good enough. He doesn't want to put the baby at risk and "good enough" is good enough for him.

I remain nervous because when I go in to see him some time later, his heart rate is really funky. It will be beating along like normal in the 140s, then it will drop to the 80s. Plus his blood pressure is really high.
Uh oh.
The nurse starts hovering over him. Then she calls in a doctor to consult. I find out that his heart is beating an extra beat. The electricity from the upper half of his heart is hitting the lower half, but the lower half hasn't recovered from the last heart beat yet. So it doesn't communicate back to the upper half and it makes his heart beat look half the speed on the monitor; but in reality it isn't. Dr. P explains this is completely normal and will get better as time goes on.

The next couple days, he is progressing like a champ. Of course there are times when a number or his chest tube drainage isn't where they want it to be. But they fix it and he keeps chugging along! He is one amazing little baby and I can't wait to take him home. :)

*The updates since his chest has been closed are posted on his website: http://caringbridge.org/visit/thecorbinstory

The Corbin Story: Surgery Day

I wake, feeling very calm.
"That's weird." I think to myself.
I know I shouldn't be. I should be biting my nails to the bone, pulling my hair out, close to sick, kind of nervous. My son is having heart surgery today. His chest will be opened, his aorta rebuilt, and he is only 10 days old.
Instead, I am filled with a sense of calm. An aura of "everything will be ok." I know he will make it through. I know, in my heart, he is going to be just fine.

If you have never prayed, you have no idea how much it does work. The power of prayer is amazing. I knew my son would pull through surgery and I know it was because God had heard my prayers. God had sent my calm mood on what should be the most stressful day of my life. It's surreal sitting there, knowing your newborn in laying on a table with his chest open, and not even being worried. You know you should be, but you can't even make yourself worry. You know it is due to God and all you can do is thank him, over and over.

Before the surgery, Hubby and I came over to the NICU at 6:30 so we would be able to hold Peanut one last time. He still had a breathing tube and dozens of wires, but as long as we sat close to his bed, we could hold him. He had come off of isolation the day before so we didn't have to wear gowns.
It was heavenly holding my baby. Once I got him situated, he was in bliss. He slept so soundly for the two hours I got to hold him; the nurses were laughing at him. He was sprawled out with one arm hanging off to the side and was snoring. They told me he hadn't been sleeping well the past two days and he was bound to be exhausted.
No one can do it like mama.
I loved it, I could have sat there all day staring at him. He was so peaceful, breathing calmly, snoring slightly. It was perfect.
But of course, everything must come to an end. The anesthesiologist came in at 8:15 to take the baby down to the OR. So I had to put him back in his little bed, watch as they moved wires and computers, then give him one last kiss before they rolled him away.
There were no tears, just love.

Waiting wasn't that hard. I was expecting at least 8 hours, if not 10. If it was sooner, I would have been surprised. We didn't do much, everyone had their computer or ipod to play with. My parents and I chatted while Hubby slept.
A long 7 hours later, we got the word that they were done, he made it!! It was then, I got a little nervous. I wanted to know if his ventricle was too small or not. That was the news that would make or break my day. They tell us it will still be at least two hours before we can see Peanut. They have to clean him up, bring him to the PICU, then get him settled in his room.

While we were waiting, we met a family who had gone through a similar experience. Their son, Scotty, had heart surgery when he was 11 months old and has lived, with the occasional close call, to a healthy 25 years old. It was very encouraging to hear a story where you can relate. His heart defects were much more extensive along with multiple complications in other organs. His doctor is Dr. G as well, so we felt confident that Peanut has a very good chance at making it through the next couple weeks.

A surgeon, Tammy, comes in to tell us how the surgery went. She explains that once they had Peanut's chest open, they realized they would have to completely reconstruct his aorta. It was way too narrow. So they used a graft and some sort of tube to open it and reconstruct it to the size it should be. She added that they found some arteries that were much thicker then they should be. She said that it could be a sign of Williams Syndrome.
My heart drops. "Uh, oh." I wasn't expecting that.
It is a genetic disorder that presents at birth. It is associated with a narrow aorta and thickened arteries.
You can read more about it here.
She tells us they will test for it, but she doesn't know enough to tell us if she thinks he has it. She goes on to say they could not tighten the pulmonary clamp like they had planned. They will leave it loose for now and try to tighten it in a couple days, before they close his chest.
Dr. G comes in, not much later, to talk about the surgery. He says Peanut's ventricle isn't too small, but he's also not sure if it's big enough. He says it is right on the line and they will have to see how he does. We ask about the thick arteries, and all he says is it's "curious." He won't go much into it, he only repeats that it is "curious", but also doesn't seem that worried about it.

A nurse steps in to tell us Peanut is ready and we can come back. I have been warned by the NICU nurses that it will be "breathtaking" how bad Peanut will look. So I'm expecting, I don't know what, but I'm expecting to be floored.
When I walk in, I'm like "Hey, it's not that bad!" He is hooked up to probably over twenty different machines but he doesn't look that bad. The amount of equipment is more overwhelming then his physical condition.

Starting from the right:
-The black moniter is keeping track of all his vitals. He has two moniters, the other is on the upper left, facing his bed.
-The pole with the white box looking things are medicine dispensers. They are automatic so the nurses only have to program them then leave them. There are FIFTEEN (15)!! There are four poles holding all the medicines; sedatives, pain relievers, blood pressure medicines, fluids, and nutrition.
-The monitor with the blue plastic tubes coming out is his controlling his breathing tube.

-The machine with the blue tank is his oxygen line.
Then of course, there are the huge lights over his bed. Those are for when the docs have to come back in and close his chest. This room is specifically for heart surgery patients. This way, they can come in and operate without having to take the baby all the way down to the OR.
Crazy huh?

Peanut is completely sedated. The doctor told us pain alone can kill a baby, so they are extra careful to make sure his is comfortable. The skin over his chest is pulled back to reveal his chest and heart and you can see his heart beating through the dressing. Although it is kinda gross, it's fascinating at the same time. I apologize if this is too much for you, but here it is:

I, surprisingly, don't start crying. I talk to him, telling him "mommy's here", hoping he can hear me. He is really swollen and my first thought is: "He looks just like Monkey!" Which makes me smile, thinking that maybe when they get older, they will look the same.
Hubby goes back to bring my mom and dad in. They give Peanut kisses and tell him they love him. I can't decide if I'm going to stay the night or not. My mommy half doesn't want to leave him, in case he gets worse during the night, but my other half is exhausted and just wants to go to bed.
I go up to his nurse, MJ, and ask her what to do. I can barely get the words out, I start cying. "What should I do?" I swear she tears up too which makes me cry harder.
"I can't tell you what to do mommy, but I will tell you these lights will stay on all night. There will be beeping and alarms at all hours. You need your rest too, to make milk. You have to eat and sleep so that you will be strong enough to take care of your baby. It's up to you mom, but that's what I think."
I can only nod. I give my baby one last kiss for the night, and we all head back to the McDonald house. In the lobby, Mom asks why I would want to stay.
Dad says "Because she wants to be there if he dies."
"Husband! Don't say that!" My mom exclaims.
"He's right mom, as bad as it sounds, that's why." I tell her, tearing up again. I feel guilty for leaving but I know MJ is right. I wouldn't sleep a wink if I stayed in his room, then what good would I be? He is in the best care possible, MJ is a remarkable nurse, and they will call me if anything happens.

Back at the house, Hubby and I get to our room. He sits on the bed and pulls me toward him.
We only look at each other, burst into big grins, and say:
"He made it!!"


We have just reached two weeks, here in Morgantown. It doesn't sound like a long time, but it feels like years. I feel like I've been here forever and will never be able to leave. Some days, I'm really depressed; snapping at my husband, ignoring my first born, and over all being a total black hole of depressed anger.
Other days, I feel great. My son is recovering well, he looks good, I feel good, and I'm happy. I am smiling and talking to nurses, laughing, and feeling totally uplifted by prayer. 
But Depression is always sitting in the back of my mind, ready to eat up all my happiness and replace it with stinking, nasty, sad thoughts that will bring me down the whole day. Depression and Anger are always following me around. Happiness is here too, but he doesn't like to mess with Anger...they can't be in the same room together.
This morning, Depression was king. If you couldn't see the stormy black cloud of never-ending sadness around my head, you could definitely see it in my eyes. Staring blankly ahead...consumed by sad thoughts, I was a sight. But then I wrote down how I felt...and it all went away. Happiness returned, relieved I had finally listened to my instincts and had put Depression back behind locked doors. 
This is why I blog.
This is why I share with you how I am feeling. I'm not going to put on here what exactly I was feeling this morning because I don't feel that way anymore. But I do want to share why I blog.
It helps.
Which is the tiniest, yet greatest treatment for me right now. To have something to do that gets all my thoughts out of my head, to keep Depression and Anger at bay, I write. They can't feed on my negative thoughts if those thoughts aren't in my head anymore.
So thank you for listening.
Even if I never get a response back...this helps.

The Corbin Story: continued

Sunday: 27th

It's a wonder of God I'm able to supply my baby with breastmilk. It didn't work with my first born; I just could not get the hang of it. So this time around, I ask questions and make sure I know what I'm doing. It just requires me to pump every three hours.
And let me tell you, it turns into a chore really fast. I have to set my alarm every night so that I can get up and pump. It makes the nights seem a whole lot shorter.

When we get to the hospital, the nurse tells us that over night, Peanut decided he did not need his breathing tube anymore and pulled it right out! They were planning on removing it soon anyway, but my baby was done messing around with that thing and did the job himself.
That's my boy!
When you are staying at the McDonald house, the doctors ask you to be around for rounds every morning since you are staying so close. So we wait and wait....About two hours later, they finally show up and go over his numbers. He is doing good, vitals and holding up, and they mention surgery may be Tuesday. Still no date yet though. Only speculation. Oh well...more waiting.

We go out to lunch then to Walmart to buy a GPS. Since Hubby will be going back to work soon and I will be left here with mom, I feel better having something to help us get around. Knowing myself and my mother, we would take one wrong turn and end up in Ohio before you could say "wrong turn."

When we get back to the hospital, they greet us with great news. Peanut will NOT have to have open heart surgery. YAY! I was so worried. Instead they will go in to bridge his aorta then wait two months to go back in and patch the holes.
They were going to put a PIC line in, which is a more permanent type of IV. That way they won't have to continually stick him for blood. They couldn't get it in so instead they put an IV in his head. I cringe every time they say IV *ugh*. They tell me that he took it like a champ though! He didn't even cry.
That's my boy!

Monday: 28th

As I am pouring my coffee in the kitchen of the McDonald house, I hear behind me the television. It's on the weather channel and apparently, there are tornado warnings for the area!
"Wha? We don't get tornadoes in the mountains?!"
Then I remember.
We're not in the mountains anymore. We are a so close up to Ohio, I could spit across the state line. Damn you flat country!

Rounds go well. His vitals are good, but his jaundice is getting worse so they decide to add another blue light. We finally get to talk to the Cardiothorasic Surgeon. He is short man with long, thin fingers. He kind of looks like the Monopoly man, hair and all! He wears small round glasses at the end of his nose and talks quietly. The nurses have already told us things about him, like how if you don't ask him a question he will just walk out. He is so concentrated and so smart, he doesn't waste time on niceties or chit chat. If you ask, he will answer to his best knowledge. But if you don't, he will just walk away. He talks very quietly and is know to mumble but he is amazing in the operating room.
This only makes me more nervous. I don't want to forget anything.
Hubby tells me later, he hopes he didn't shake the docs hand too hard, "that's his operating hand!"
We are bursting with questions, but he stops us and says:
"I see you have a list of questions, but I can't answer them. We have to get through this surgery, then everything else depends on how he recovers. We can't plan a month ahead, we can only go one day at a time."
Well crap.
That wasn't what I wanted to hear but I know he is the best there is around here and I have to trust him. He goes on to tell us that they are planning to bridge his aorta then put a clamp on his pulmonary artery to restrict blood flow to his lungs. There is too much blood flowing and it is causing fluid to build up. He says he saw on the echo that Peanut's ventricle is small. He emphasizes that he won't know if it is TOO small until he is looking at Peanut's heart. If it is, then this will turn into a whole other operation. If it is too small, then Peanut will have to live off of one ventricle and his chances of dying on the table go up 20%.
When he says "die", my heart drops.
I know there are risks, I just didn't think the chances were that high. He says if he has two good sized ventricles, then his chances of dying are 10-15%. But if he only has one good one, then his chances of dying are 25-30% and his life span will be till around 30.
At this point I start crying. But it doesn't faze the doctor. He touches my hand, once and very lightly, then continues on explaining. I stop thinking. All I hear is: death. It's too much. I can't hold it in and the tears flow.
The nurse brings me tissues as I try to calm myself down. Hubby only gives me a look of understanding. I try to get my concentration back on what the doctor is saying. He is saying that he can't tell us how long the surgery will last or when he will have to have his next surgery. EVERYTHING depends on what that ventricle looks like.

In a daze, we go back to the house to update family. Hubby and I are on the porch, talking, when we get a phone call from the hospital. The anesthesiologist has arrived and is available for questions. We hurry over and head to the NICU.
The anesthesiologist is also a quiet talker. But he is much more talkative then Dr. G, the cardiologist. Hubby asks him what the risks are, and he answers but doesn't really answer the question. You can tell he is very educated and knows exactly what he is talking about but it is hard to understand. Another genius.
Although there is a lack of answered questions, we are comforted by the fact that these doctors are one of the best on the East Coast. Kids get sent from all around to this hospital just for these doctors. I was told earlier, by another mother, that once your child sees Dr. G. He will never see another doctor in his life. As long as Dr. G is working, then Peanut will be coming here to see him. There was a 65 year old patient of Dr. G's in the PICU the other day. Tell me THAT'S not impressive.

My parents arrive soon after we get back to the McDonald house. It is great to see my mother. She knows how I am, and how I like to be comforted. No one can do it like mama.
We all go out to dinner to talk. When we are seated, Dad ask's me a question about the surgery.
"So, what did the doctor say?"
I can't answer him, I'm trying not to cry. I ask "Can we please not talk about surgery tonight? We will talk about it later, but not at dinner?"
And so we don't.
We talk about prison (Hubby's favorite subject) and my brother, and college, and memories.
And I laugh.

Day Seven

Saturday: 26th

After visiting our baby, we head back to our hotel.
The whole place smells like weed, but that's to be expected when Snoop Dog is in town. Plus I'm pretty sure he is staying in the same hotel as us. Considering it's the Hilton and there are two huge tour buses outside. Not to mention the big, scary, bodyguard-looking mugs that are walking around.

Anyway, we get to bed around 2:30 am. My internal alarm clock doesn't realize I don't have to get up with Monkey anymore and wakes me up at 7 sharp. I head downstairs, trying not to breathe in last night "festivities", and get myself some breakfast. For a Hilton, they sure don't give you much. If you choose to pay an extra $10, you can have a fresh-outta-Le Cordon Blue-graduate make you some pancakes. But for us stingy folks, you only get juice, milk, pastries, and coffee.

I go find a window to sit by and eat my breakfast. I realize, as I am putting jelly on my toast, that the guy sitting behind me must here with Snoop. He's talking about how they have another show tonight and how crazy it was last night. I'm not impressed though, with all that is going on, I have more important things to think about.
I know there is a Ronald McDonald house in the area, so I ask the front desk for a phone book, and give them a call. As the phone rings, I cross my fingers and pray "please have a room"...ring...ring...
"Ronald McDonald house"
"Yes, my son was just admitted to Ruby, what do I have to do to get a room?"
She tells me that they are full at the moment, but she takes my information anyway and tells me to call back around 2. She also says that even if they don't have a room available, that we can come by to use the facilities, shower, do laundry, and eat. They can also help us find a hotel at a discounted rate.
I hang up the phone feeling comforted. I know we can't afford $120/night to stay in the Hilton so it is so good to hear how much they are willing to help.
I head back upstairs, wake the hubby, and we pack up and leave to go visit Peanut. He is holding steady, his vitals are good, and there is no bad news. We spend some time with him then head over to the McDonald house.
Turns out it is right across the parking lot from the hospital.

They have a room! YAY! This is such a relief. After we fill out some paperwork, we get a tour of the house. There is a fully stocked kitchen and pantry, a huge living room and a play room for the kids. There is also a nursing room with two breast pumps I am more then welcome to use. We have our own locked cabinet to use, and a fridge. They only ask that we label the food in the fridge so others don't eat it. There is a laundry room and a game room we are free to use. The bedroom has two twins beds, a fold out bed, a closet and a bathroom. It is very plain but the rest of the house is gorgeous. As the girl shows me the quilt room, "pick some out for your boys!", I can feel the tears coming. The generosity and kindness that this house represents is overwhelming. The house is always full of parents whose children are suffering from illness or injury and it is completely run by donations.
She goes on to tell us, that by the end of our stay (which there is no checkout date) if we cannot afford to pay, then we are not obligated to. They understand that families come here with children who have costly medical conditions and they are not going to stick us with another bill. They only ask $12 a day, so it is very cheap, but families have been know to stay here for months at a time so it does add up. I'm so glad to hear this, I don't want to worry about bills right now.

We unpack our things at "the house" then head out for dinner. I know we can eat at the house for free, but the past couple days have been so hectic we just want to get out. We get dinner at the Roadhouse. It feels good to spend time with Hubby, laughing and making fun of people like we do.
But I also feel guilt. I feel so guilty every time I laugh. Every time I smile. I tell myself "you're not allowed to be happy! Your child is in the hospital, broken, and you are out having fun!?"
I can't stand myself.
And in the mornings when I first wake up, I forget just for an instant, what is happening. For the tiniest nanosecond I am happy. Then it all comes back...like a slap in the face...like a knife through the heart.
I remember.
I remember why we are here. In this strange hotel. With the hospital band still around my wrist.
My son is broken.

After dinner, we head back to the hospital to check in on Peanut. He is still holding steady, thank God, and his vitals are good. The nurse tells us that the doctors were talking about operating on Sunday but nothing had been decided yet. We ask her a bunch of questions she can't really answer, but she tries her hardest. She tells us to take those questions and write them all down so we can ask them to the cardiologist.

Back at the house, I sit down by myself in the living room to make a list of questions. I brought my ipod with me so I could listen to music but the songs are really getting to me. Specially "The long day is over" by Norah Jones. Even though it isn't about hardship or dying, the slow tempo and some of the lyrics make me cry. So there I am, curled up in a chair with my journal in my lap, crying. There are people across the room in the dining area eating. I just hope they can't hear me.
I can only cry and pray.
"Please God, don't take my baby. I want him here with me. Please don't make me a mother of a dying child. He's only 6 days old. I haven't seen him smile, heard him laugh, or watched him take his first steps. Please don't take my son."
My heart is breaking, the tears are falling, and my son is still sick.
I don't know how I'm going to do this.

God is amazing though. When I go back upstairs, after pulling myself together, I walk in on Hubby on the phone. It is a coworker of his, Joey, whose daughter has a heart condition as well. She has a condition called: cardiomyopathy-when the muscles in the heart are too big. When she was little she had to have heart surgery as well and her doctor is the same doctor Peanut has. Joey is telling Hubby that Peanut is in the best possible hands and if he doesn't know what to do, then no one will. He goes on to tell Hubby that he had his wife buy us some supplies in case we forgot anything. They had stayed in the McDonald house as well when their daughter had surgery. His wife will be coming through Morgantown on her way to Pittsburgh with their daughter. She has a doctors appointment the next day so they will stop by and drop off a bag of supplies.
What a guy.

After one more visit to the baby, we head back to the house and crash.
Hopefully, the next day will bring answers.