A step toward our happiness

 So I have made a step toward our rainbow baby...... an baby registry http://www.diapers.com/baby-registry/151056/Cassie-Thomas-Fuller....... I think its a good step forward

Welcome!!

For my New followers,

I am Cassie, I am married to a wonderful man Michael. In November last year we found out we were expecting our first child. In Febuary We found out the baby was a SHE and that she was a Heart baby. While going through mixed emotions and wondering if i could handle it, i had to revert back to  my faith. With my mom, sister and Michael holding my hand July 5th 2012 at 3:28pm a wonderful little angel made her way into the world. July 8th was her first surgery, just a stent. But July 9th was her first open chest surgery......at about 5pm her heart stopped. Kennedy was a fighter though we made it through it with the hand of Jesus. July 27, 2012.......at 3:28pm.....Kennedy Became an angel and went home to Jesus. Her book was short but its a story heard around the world. One little girl touched so many people. But our story doesnt end there......November 22, 2012 We found out we were expecting our second child....our due date July 27, 2013. No we werent trying, we had simply given it up to Jesus. Our journey with this baby has just begun, yes i have reservations but i have to let go of what i have no control over. Until then....TTYL

Anyones guess Now

Gender prediction based on how you carry

• If you are carrying your baby high, it's supposed to be a girl while low means a boy.
• If the weight is all out front, you are supposedly carrying a boy while if you have weight distributed to the sides and hips it's a girl.

Gender prediction based on Mom's appearance

• If your face is round and full, you're expecting a girl.
• When you have breakouts or more trouble with acne, you're pregnant with a girl.
• If you look prettier while pregnant, it's a boy. The theory is a daughter will steal your looks!
• If your right breast is larger, you're going to have a boy. If the left one is bigger, it's a girl.

Gender prediction during pregnancy

• Lots of morning sickness? Blame a daughter.
• Craving sweets? Again, it's a girl. Sour or salty? It's a son.
• Is the daddy gaining weight too? Then you're pregnant with a boy.
• Are you sleeping on your left side more than your right? You are expecting a boy.
• Are you dreaming of cigars, trucks, snakes, anything masculine or shaped like a penis? That means a boy. Dreaming of keyholes, fish, kitchen things, or beauty items means a girl.
• Are you especially moody? You are pregnant with a daughter.
• Cool and calm, you are expecting a son.
• Are you tripping all over yourself and dropping things constantly? This means you're having a boy while being smooth and graceful means a girl is on the way.
• Soft hands means a girl, while dry skin on your hands means you're pregnant with a boy.
• Who is less stressed in the pregnancy? Whoever is cooler determines the sex. If dad is chill, you are expecting a son. If mom is the cool cucumber, a daughter is on the way.
• Baby's heartbeat faster than 140 beats a minute supposedly means it's a girl while under 130 beats a minute is supposed to mean it's a boy. Between 130 and 140? Anyone's guess!

The Key TestIn this test a friend will hand the pregnant woman a key. If she picks it up by the wide round end, it's a boy that's on the way. If she picks it up by the narrow edge, it's a girl.

Dangling testDangle a wedding ring, key or pendant on a string over the pregnant belly. If the key swings back and forth it's a boy in there. If the key circles the tummy, then it's a girl.

What am I afraid of???

 

 

Why am i so nervous to get toclose, or even to prepare? I know i have a while buti want to get attached and love this baby. But i am so nervous. I love this child but its like something stopping me. If yall could help me please. I know i can handle just about anything but i want to prepare for the worst.  

 

I hope this expains....

What heart conditions are found most often in children?
The most common heart conditions found in children are structural heart defects. Congenital heart defects are those that are present at birth. Of all structural heart defects, ventricular septal defects or communications between the bottom chambers of the heart are most common. As a matter of fact, structural heart defects occur in roughly 8 per 1,000 live births.

What are the most severe or serious defects?
The most serious or severe congenital heart defects would include a significant left-sided heart obstruction. More specifically, this would be hypoplastic left heart syndrome. In hypoplastic left heart syndrome, or HLHS, the left side of the heart is under developed. The left side of the heart, the left ventricle, has the primary role of pumping blood from the heart to the rest of the body. When we se an underdeveloped left side, we often see a small aorta as well. We have gained knowledge over the years in terms of addressing infants with hypoplastic left heart syndrome. We have a three-stage procedure which infants undergo in attempts to repair this disease entity. This condition is fatal without either surgical repair or heart transplantation.

What percentages of babies are born with heart defects?
In 8 per 1,000 live births there is congenital heart disease. Many more fetuses are found to have congenital heart disease, perhaps three to four times the incidence just stated. However, many of these fetuses succumb to the congenital heart defect or perhaps other abnormalities such that the overall incidence in heart disease in live births drops to 8 per 1000.

Wolf's Parkinson's White.... can you explain this condition to me?
Supraventricular tachycardi or SVT is the most common abnormal tachycardia (fast heart rate) in children. SVT in childhood is usually associated with abnormal electrical conduction pathways. In the condition called Wolf-Parkinson-White, or WPW, there is an abnormal conduction pathway, which runs between the upper chambers of the heart or atria, and the lower chambers, or ventricles. This electrical signal can arrive at the ventricles sooner than normal, and this is how your niece can develop the WPW or tachycardia. This condition is actually named after the three people who first described it. We can recognize WPW by characteristic changes on an EKG. Many people with WPW have no symptoms at all, and many have no episodes of tachycardia. However, if the WPW is associated with tachycardia, we have medication that can improve the child's episodes of SVT. If medication is not successful, there is a procedure called radio frequency ablation which can actually eliminate the abnormal pathway by passing energy through a catheter. This procedure is done in the pediatric cardiology catheterization laboratory

If one child is born with a heart condition, what is the likelihood that the next child will be born with it as well?
The incidence of congenital heart disease is roughly 8 per 1000 live births. The risk of recurrence of congenital heart disease in subsequent pregnancies is slightly increased once there is a child or family member who has congenital heart disease. The recurrence risk is quite low, perhaps 3 to 5 times higher.

Why do congenital heart defects occur?Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.

Up to 1.3 million Americans alive today have some form of congenital heart defect.In the United States, about 36,000 children are born with a heart defect each year. At least nine of every 1,000 infants born each year have a heart defect. The causes of congenital heart disease are still under investigation, but there scientists and physicians are making progress.
Causes of Heart Defects
Unknown cause: We don't know the exact cause of most heart defects. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. So they're likely due to a combination of multiple genetic and environmental factors. There's usually a 2 to15 percent chance of a heart defect happening again in the family. The odds depend on what type of defect you have and whether anyone else in your family has a heart defect.
Genetic syndrome: Some people with congenital heart defects have a specific genetic condition that can include other health problems. They may or may not know that they have such a condition. The chance for their child to also have this condition can be as high as 50 percent. These conditions can vary widely in their severity, so children may have less serious or more serious health problems than their parents. Learn more about genetic counseling.
Single gene: Rarely, congenital heart defects are caused by changes in a single gene. Often when this is the case more than one person in the family has a heart defect. The chance for another family member to have a heart defect can be as high as 50 percent.
Environmental exposure: Heart defects can also be caused by something your mother was exposed to in her pregnancy with you, such as an infection or a drug. In this case, the chance that your children will have heart defects is no higher than that of the average person.
Taking part in research
As an adult with congenital heart defects, you may be able to help improve our understanding by taking part in research. There's still a lot that we don't know about why heart defects happen. It's possible that future research will discover these causes. Participating in research could help your family and other families better understand their heart defect and the chance it will occur again in the family. Ask your genetic counselor about research studies you could take part in.

NEC??

Necrotizing enterocolitis

Necrotizing enterocolitis is the death of intestinal tissue. It most often affects premature or sick babies.

Causes

Necrotizing enterocolitis occurs when the lining of the intestinal wall dies and the tissue falls off. The cause for this disorder is unknown. However, it is thought that a decrease in blood flow to the bowel keeps the bowel from producing mucus that protects the gastrointestinal tract. Bacteria in the intestine may also be a cause.
This disorder usually develops in an infant that is already ill or premature, and most often develops while the infant is still in the hospital.
Those with a higher risk for this condition include:

• Premature infants
• Infants who are fed concentrated formulas
• Infants in a nursery where an outbreak has occurred
• Infants who have received blood exchange transfusions

Symptoms

Symptoms may come on slowly or suddenly, and may include:

• Abdominal distention
• Blood in the stool
• Diarrhea
• Feeding intolerance
• Lethargy
• Temperature instability
• Vomiting

Exams and Tests

• Abdominal x-ray
• Stool for occult blood test (guaiac)
• Elevated white blood cell count in a CBC
• Thrombocytopenia (low platelet count)
• Lactic acidosis

Treatment

In an infant suspected of having necrotizing enterocolitis, feedings are stopped and gas is relieved from the bowel by inserting a small tube into the stomach. Intravenous fluid replaces formula or breast milk. Antibiotic therapy is started. The infant's condition is monitored with abdominal x-rays, blood tests, and blood gases.
Surgery will be needed if there is a hole in the intestines or peritonitis (inflammation of the abdominal wall). The dead bowel tissue is removed and a colostomy or ileostomy is performed. The bowel is then reconnected several weeks or months later when the infection and inflammation have healed.

Outlook (Prognosis)

Necrotizing enterocolitis is a serious disease with a death rate approaching 25%. Early, aggressive treatment helps improve the outcome

I feel.......

I feel lost. I feel pressured. I feel.......DONE.

I wanna walk away from everything, and throw my hands up and be done. I am trying to move on i am trying to get a job. I am working on being ok with our situation. I want to be ok over night but it just DOSENT happen like that. I have made strides to be better but it seems its not good enough.



I am lost in a crowed room of people.

What Is Marriage?

mar·riage (mrj) KEY

NOUN:

1. 1. The legal union of a man and woman as husband and wife.
   2. The state of being married; wedlock.
   3. A common-law marriage.
   4. A union between two persons having the customary but usually not the legal force of marriage: a same-sex marriage.

A wedding.

A close union: "the most successful marriage of beauty and blood in mainstream comics" (Lloyd Rose).

Games The combination of the king and queen of the same suit, as in pinochle

It is said that marriages are made in heaven and celebrated on earth. The popular belief is true to many extent, because it is a special bond shared between two souls, who tie the wedding knot after promising to be companions for a lifetime. It is the physical, mental and spiritual unison of two souls. It brings significant stability and substance to human relationships, which is otherwise incomplete. It plays a crucial role in transferring the culture and civilization from one generation to the other, so that the human race is prospered. The institution of marriage is beneficial to the society as a whole, because it is the foundation of the family, which in turn is the fundamental building block of the society.

While the concept of marriage remains the same across the globe, the way of solemnizing it differs extensively. Different laws have been formulated to legalize the ceremony, which proves to be an important turning point in one's life. Apart from the laws of marriages, the rituals following during the ceremony are in total contrast to each other. Something that is seen in the western countries cannot be witnessed in other nations in the developing world, primarily due to the contrast in the lifestyle and religious beliefs. One of the prime reasons for the paramount status of marriage is that it is the license for two individuals to live together in a society, without much limitations.

Coming to the subcontinent of India, marriage encompasses a number of meanings, apart from being a legalized way of uniting two people. It bears a lot of social significance. This is primarily because in India, marriage has been considered a way to bring the families of two individuals closer. Since the ancient times, marriages have been celebrated as ceremonious occasions, just like the religious festivals, wherein a number of rituals and customs are followed. A number of ceremonies are observed before, during and after wedding.

The key to successful marriage is love, understanding, mutual respect, trust, commitment and togetherness. While many couples are able to find all the key ingredients in their marital relationships, others find one element or more lacking in their bond. This gives rise to consequences that are not always expected, or desired. This is a reason why a number of couples face adverse consequences, like divorce. One of the visible reasons why married couples find marriage as an intimidating bond is that they face a number of problems, while being in the relationship. Lack of trust, mutual respect, love and understanding contribute to the deterioration of the bond.

 

 

A Marriage is like a child, It needs to be loved, Cherrished and treated right by both partys. If not you might not recieve the reward.

 

Sometimes being a brother is even better than being a superhero. ~Marc Brown

I got ask how we explained Kennedy to Stetsyn, seeing he was two years. Simply told hime she would be staying in heaven with her pawpaw and popi. Yea he still ask when she is coming home but we love those question because we get to explain God and Heaven to him, yes in kid terms but we leave that door open so he knows its ok to ask about Kennedy and her life. Yes eventally he will learn why he cant see her except only in pictures. Yes that will be a sad day but until then stetsyn doesnt think God is mean and Jesus is selfish, He thinks thatone day when his journey is finish he will meet his sister and they will play babiesand go shopping and beat up on eachother. Heaven to him isnt SCARY is a place that when you get finish here on earth you go to. He hasnt conceptualized the reality because he is only two.

Sometimes being a brother is even better than being a superhero. ~Marc Brown


Kids this age react to death in a variety of ways. Don't be surprised if your child becomes clingy, regresses in toilet training, reverts to baby talk, or suddenly balks at going to her familiar preschool. After all, her daily routines may have been interrupted, she's struggling to understand why the adults around her are so sad, and the world may suddenly seem ominous to her in a way that it hadn't before.
On the other hand, she may not show any reaction to the death at all, or her responses may be intermittent, mixed in with her usual cheerfulness and play.
This is normal, too. Children process grief in bite-sized chunks, not all at once. And many delay grieving until they feel it's safe to let those feelings out — a process that could take months or even years, particularly if they've lost a parent or a sibling.

Don't dodge her questions. It's normal for your preschooler to be curious about death, even if she hasn't yet lost a loved one. In fact, less emotionally fraught times are good opportunities for laying groundwork that will help your child cope when she does lose someone.
Answer her questions about death, and don't be afraid to read stories about children whose pets or grandparents die.
Give brief, simple answers. Young children can't handle too much information at once. At this age, it's most helpful to explain death in terms of physical functions that have ceased, rather than launching into a complicated discussion of a particular illness: "Now that Uncle John has died, his body has stopped working. He can't walk or run, or eat or sleep or see anymore, and he doesn't feel any pain."
It's also important to help a preschooler understand basics such as who's going to take care of her. "She thinks, 'If Mom dies, who's going to give me my bath?' " says grief specialist Michael Towne.
Express your own emotions. Grieving is an important part of healing, for both children and adults. Don't frighten your child with excessive grief, but don't make the subject off-limits, either.
Explain that grownups need to cry sometimes, too, and that you feel sad because you miss Grandma. Your preschooler is keenly aware of changes in your mood, and she'll be even more worried if she senses that something is wrong but that you're trying to hide it.
Avoid euphemisms. Common adult phrases for death — "resting in peace," "in eternal sleep" — are confusing for a young child, so don't say that Grandpa is "sleeping" or "has gone away." Your preschooler may worry that going to bed at night means she'll die, too, or that if you leave for the office or the store, you won't come back.
State the reasons for the death as simply as possible: "Grandpa was very, very old and his body couldn't work anymore." If Grandpa was sick before he died, be sure to reassure your child that if she gets sick from a cold or flu, it doesn't mean she'll die. Explain that there are different ways people get sick, and that we recover from minor illnesses like the ones your child usually has.
Tread carefully when discussing God and heaven. Explanations of death and the afterlife will of course depend on your own religious beliefs. If the concepts of God and heaven will enter into your conversation, think carefully about what you'll say, since words meant to comfort a small child may actually confuse her.
If you tell your preschooler, "Janie's happy now, because she's in heaven," for instance, she may worry: How can Janie really be happy if everyone around me is so sad? If you say, "Janie was so good that God wanted her with him," she's likely to think: If God wanted to take Janie, will he take me too? Should I be good so I can be with her in heaven, or bad so I can stay here with Mom and Dad?
Something along the lines of, "We're so sad that Janie isn't here with us and we'll miss her very much, but it's comforting to know that she's with God now," will reassure your child without adding to her worries.
Be prepared for a variety of reactions. Children not only feel sorrow over the death of a loved one, they may also feel guilt or anger. Reassure your preschooler that nothing she said or did caused the death, and don't be surprised if she expresses anger toward you, the doctors and nurses, or even the deceased.
Also expect that she may have tantrums more often, either as a way to get her own sadness out (though the tantrum may appear to be about something else) or as a reaction to the tension and sadness in your household.
Expect the subject to come up repeatedly. Be ready to field the same questions from your child over and over again, since understanding the permanence of death is a struggle for her.
She's also likely to come up with new questions as her awareness of death and her cognitive skills grow, grief counselors say. Don't worry that you didn't explain the death adequately the first time — your child's ongoing questions are normal. Just keep answering them as patiently as you can.
Memorialize the deceased. Children need concrete ways to mourn the death of a loved one. Your preschooler may not be ready to attend a funeral (particularly an open-casket wake), but she can participate in memorial services in whatever ways she might feel comfortable. She can light a candle at home, sing a song, draw a picture, or take part in some other ritual observance.
If she does want to attend the funeral or other service, carefully explain beforehand what the body will look like, what a coffin is, how other people may be acting, and as many other details about the event as possible.
It also helps to talk about the good relationship she had with the person who died: "Remember when you and Grandma went blueberry picking? She had so much fun with you."

I am....an OPEN BOOK!!

Why a rainbow baby so soon?

• Honestly once you loose someone as the days go on and you forget. I Can honestly say i have forgoten her smell and her cry. Yeah she didn't cry very much but the little that she did i have forgoten it. In the mist of greiving great things come from it, and out rainbow came from this.

About Kennedy's Heart....

• Hypoplasty Left Heart Syndrom-- Half a Heart, actually Kennedy had a "Very good pumping chamber"-Dr R. Normal cases only have one good pumping chambers, and yeah my daughter didnt want to be normal. It takes a three step surgery to help correct, not FIX but help correct it for the time being.
• Mitral Vavle Stenosis-- basically a smaller mitral vavle, which would need surgery to fix.

Where is stetsyn and Slyder in all of this?

• Stetsyn is only 2 and doesnt understand that once you go to heaven you cant really come back to play. He knows his "sister" through pictures and her video but other than that, that is probably our only regret is not allowing the boys to see her while she was in NICU.
• Slyder, He ask questions, we answer them to the best of our ability. But sometimes you just have to say only God knows why. Yes life reallyisnt fair and we are sorry you have to learn this so young but God has other plans for us and in order to fulfill that Kennedy needed to live in heaven.

What does kenni want for Christmas?

• We, her parents, would like everybody to buy a book and on the inside place a personal note on the inside. It can be to kennedy or our Rainbow, but we would love to see how she touched everyone. Including her cousins, yes they never got to meet her but she touched them. But as far as toys and stuff like that we are always open to them

What am I having?(our rainbow)

• Well we will have to wait until our 20 wks, but next week we go for our first sonogram.

Myth or real

The Facts about Pregnancy

Nausea and vomiting

• Morning sickness only happens in the morning. FALSE. The name ‘morning sickness” is a misnomer. Although you may feel worse in the morning, you may feel sick and vomit at any time of the day.
• Vomiting during pregnancy will harm your baby. FALSE. Vomiting in pregnancy is rarely a risk to your health or your unborn baby's health. It's common in early pregnancy. Excessive vomiting so you can’t even keep fluids down (called "hyperemesis gravidarum") can result in you becoming dehydrated and so needing admission to hospital. Even then your baby will not suffer.
• You're less likely to have a miscarriage if have excessive nausea. TRUE. This thought due to nausea correlating with pregnancy hormone (βHCG) levels. While the actions of βHCG are not known it is used as a maker of early pregnancy well being.
• Nausea will stop at about 12 weeks of pregnancy. TRUE and FALSE. About half of all pregnant women do suddenly feel better at the end of the first 12 weeks of their pregnancy. But for some nausea and vomiting can continue for bit longer and for a few remains throughout the pregnancy.
• You will have more nausea if you're expecting twins. TRUE often. Twins are associated with higher βHCG levels

Sex determination

• Drano test. Drano mixed with urine will tell you if you're having a girl or a boy by the urine colour change. FALSE Not only is there is no consensus on what colour equals which sex, but also there is no scientific basis for the test.
• Baby's heart rate. Girl babies have faster heart rates throughout the pregnancy. FALSE
• Your shape. Extra size out front means you are having a girl, while extra size around the hips and bottom means a boy. FALSE. There are many factors that determine a woman’s shape in pregnancy but her baby’s sex is not one of them.
• Your shape. Carrying low means a boy; carrying high means a girl. FALSE.
• Dark nipples indicate a boy. FALSE. This colour change has nothing to do with the sex of the child
• Nausea during pregnancy probably means a girl. FALSE
• Craving chocolate means you are having a girl, while craving straight lemon juice means a boy. FALSE
• Pregnancy symptoms are different this pregnancy compared to my previous pregnancy. That means the sex of my baby is different. FALSE
• Weight gain of your husband / partner in your pregnancy means you are having a girl. If he doesn't put on extra weight, then you're carrying a boy. FALSE
• Looking round and full in the face means you are having a girl. FALSE
• Breast size. If the right one is larger, you're having a boy while a larger left breast indicates a girl. FALSE. All women have one breast larger that the other. This has nothing to do with your baby’s sex,
• Swinging pendant or ring. If the necklace swings back and forth, you are having a boy. If it is more of a circular motion, then it's a girl. This can also be done by suspending a ring on a string above your belly. FALSE
• Acne. Getting acne during your pregnancy indicates you're carrying a girl. FALSE
• Picking up a key. If you've picked it up by the thinner end, you're having a girl and by the bottom, rounder part means a boy. FALSE
• Scissors and knife. If scissors are put under one cushion and a knife under another cushion and a pregnant women without foreknowledge sits on the cushion with the knife under it then she is expecting a boy and on the cushion with the scissors under it then she is expecting a girl. FALSE
• Mum knows. Ask yourself what you think you're having. This may be TRUE. In one study pregnant women who did not know were asked what they though was their baby's sex. 71% guessed the sex of their baby correctly

What is Grief? What does it mean to Grieve??

Grief is a multi-faceted response to loss, particularly to the loss of someone or something to which a bond was formed. Although conventionally focused on the emotional response to loss, it also has physical, cognitive, behavioral, social, and philosophical dimensions. While the terms are often used interchangeably, bereavement refers to the state of loss, and grief is the reaction to loss.

The nomads

Nomads have not yet resolved their grief and do not seem to understand the loss that has affected their lives.
The memorialists
This identity is committed to preserving the memory of the loved one that they have lost.
The normalizers
This identity is committed to re-creating a sense of family and community.
The activists
This identity focuses on helping other people who are dealing with the same disease or with the same issues that caused their loved one's death.
The seekers
This identity will adopt religious, philosophical, or spiritual beliefs to create meaning in their lives.


Death of a child
Death of a child can take the form of a loss in infancy such as miscarriage or stillbirth^[28] or neonatal death, SIDS, or the death of an older child. In most cases, parents find the grief almost unbearably devastating, and it tends to hold greater risk factors than any other loss. This loss also bears a lifelong process: one does not get 'over' the death but instead must assimilate and live with it.
Intervention and comforting support can make all the difference to the survival of a parent in this type of grief but the risk factors are great and may include family breakup or suicide.^]
Feelings of guilt, whether legitimate or not, are pervasive, and the dependent nature of the relationship disposes parents to a variety of problems as they seek to cope with this great loss. Parents who suffer miscarriage or a regretful or coerced abortion may experience resentment towards others who experience successful pregnancies. Because of the intensity of grief emotions, irrational decisions are often made.



If i do not greive the way you expect please keep that to your self. or Delete me. I could care less. My page is MY PAGE for a reason. I lost a child not a toy. how ever i have lost that too. Kennedy will never be forgoten. Please do not tell me to GET OVER it, I will live this nightmare the rest of my life, but WILL learn to handle it. I will learn to live again with her memory and her siblings.

4 is company!!

July 25(ish), 2013 we will be adding one more to the Thomas-Fuller family

Our rainbow baby
In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Went, going and Lived!!

Just a glemps of what we went through. What most are going throught, What others lived through.
Bumps and bruses but we are still alive

I am a Heart Mom

I just wanted a normal baby
With no tubes
And no oxygen


And no surgeries
And no beeping machines
I wanted to take my baby home in 2 days
And dress her
And lug her around to department stores in her car seat

I wanted to use her car seat

But instead, here we are
Stuck in a hospital room
Most are afraid to visit - it is awkward and sad

And then in parade the Heart Moms
Strangers
Strangers with babies like mine
Even babies who have finished their battle and are in Heaven
You can see it in their eyes -
They know

And they bring chocolate
And coffee
And Tears and Laughter
But mainly they bring empathy

And so they hold my hand and lift me up
When I cannot stand
And together we walk this journey

I am a Heart Mom
I know things one just should not know
I know what it's like to hear the words Edema
and Heart Failure.
I know that it takes 3 days for my baby's hunger pains
to go away
I know unpronouncible medical terms
I know that it is 29 centimeters from his nostril
to the top of his stomach
I know how to put a g- tube back if it comes out
I know that chest tube juice is impossible to get out
of baby clothes
I know the cry of another Heart Mom losing her child
I know what a running group of doctors means
I know what it's like to watch a machine
that has your baby's future written all over it
I know what it's like to wake in panic at beeping alarms
I know what it's like to feel like your baby
belongs to the hospital

But I also know what it's like
to leap with joy at my baby drinking half a teaspoon
to come out of 8 hour surgery and 45 days on a vent with good news
to defy the odds
to lift up another Heart Mom in tears
to be surrounded by Warrior Moms
to release a balloon in memory of an Angel
to survive a war
to be in the presence of a Miracle

So today I am a Heart Mom, I'm so proud to be .
And I wouldn't want to be anything else.

Thanksgiving!

Thanksgiving has come and gone. I have PERSONALY enjoyed myself. Yes it is possible. I tried to look past the elephant in the room and enjoyed myself. I am not fully "over it"...I have leared to live with my Angel daughter. She wouldnt want mommy and daddy to be sad, but yet move forward and spread awarness and tell her future siblings about her. She will always be our daughter but we need to live. Weither that be with her or without her we NEED to do that.


I Honestly the sence of normal this past holiday. It was NEW NORMAL.....YAY go US.

We did it honey one down one more to go...we can do it.

It just got REAL

Holidays Just got real.....

I have no daughter making it twice as hard to plan, No baby to worry about napping, No baby to get dressed up.

As you hussle around and grip about your child not behaving or having the attention span to pay attention..Be thankful you could not have your baby here to grip at.

First BIG holiday without Kennedy, The people who were there arent, the people that are are slim to none. It hurts know people who i thought was family hasnt called in a month. Havent ask if we were ok. But its ok I have more love then i EVER Knew

To My angel I love you more than you will ever know.

Andrew, I love you too, Happy 1st angel birthday!!

Whats it like

A while back someone ask whats it like being an angel mom? At the time i didnt know but now I know...Its like loving someone you cant touch or hear or have interacctions with. Try having a baby, Going home empty handed, then not having them there at ALL. I woke up to pump by alarm not by baby. I got to eat HOT meals not cold. I got to take showers however long i wanted not be begging someone to watch her soi can get the 3 day stench off. I have Memories not realality. I have pictures not HER. Being an angel mom is basicly like being in jail...talking through glass, no touching.

Thats what it feels like to be an Angel mom.

Letters to heaven

Dear Kennedy,
   
As I sit in your room wondering why its still clean.  Why it doesnt smell? Why your clothes still have tags? I sat and listen to a classical song Time To Say Goodbye by Emile Pandolfi. I never wanted to but had to. YOu left, I still have questions. I know in due time i will get them answered but you know better than anyone i am not patiant. I cant wait to see you and your perfect body. Baby girl you came and left so fast. I wonder everyday what your like, Who you look like, Me or your daddy? I try not to cry and not to miss you. but sweet angel i wouldnt be your mommy if i didnt. You were so anticipated and we longed to have you andlove on you. You were so brave, You dealt with more and under went so much more then i ever anticipated. I miss you, I miss your touch, your smile, your smell. Its the little thing i never thought i would miss untill you were gone. But Fly sweet angel, Fly with your perfect heart,Your PERFECT BODY! Love you until we meet again

Mommy

Looking Back.....

Ok so i was thinking.....How much can one peson handle? Is there a breaking point? How far until steel breaks? Is there a way to go on after you have been broken? Is there a "right way" to greive? If so, how can i prove you wrong?

I have lived my Worst nightmare and my best memories.

• April 1995--I lost granny
• March 6, 2007--Michael lost a grandfather
• July 2008-- I lost a grandmother
• Nov 12, 2008--I lost my Grandfather
• Dec 2008--I lost my Uncle Dusty
• Thanksgiving day 2009-- we lost Sarah
• Feb/Mar 2011--We lost a very good friend Michael Brisoc
• Sep. 6th--Married my best friend
• Nov 3th found out we were having a baby
• Feb 20t-- Found out she was a she and a heart baby
• March 15th--Cardio concult confirmed she was a heart baby
• May --Found out She Had HLHS and Mitral Valave stenosis
• July 5th--Kenndys Birthday
• July 8th-- Kennedys first open chest heart surgery
• July 8th--That night her heart stop, until yaya got there and then it started again
• July 8-12/13ish--Kennedy was on and came off ecmo
• July 11--Kennedys chest was closed
• July 17/18th-ish--Kennedy caguht a yeast infection in her cheast and blood Chest was opened again
• July 24-25th-- Her chest was closed
• July 27th-- WE were called to the hospital and told our little girl would not be leaving the hospital, We held her and loved on her untill we felt the time was right.
• Aug. 1st-- Kennedys memorial sevice
• Aug 23. Michaels 1 birthday as a daddy to an angel
• September 6th--  Our first Anniversery without our little Monkey girl
• Oct 4th-- My first birthday  as a mommy to an angel

Dont count your chickens before the eggs hatch....Has been my real life story....... Will i be afraid to get to close to our next child? How can there be a next child when the first isnt a year? Where do you pick up and go from here? How can I love a child that lives in heaven? How do you start to tell your others about kennedy?

When you look at yourlife and you start to think that everything is wrong.....Think it could always be worse.....YOu could love a child that now lives in heaven...and heaven aint a day trip!!!

A special day in Heaven

A fellow angel mom posted this and i thought i'd share with yall.......




A Special Day in Heaven~ Author Unknown~
Once upon a special day in heaven up above, the tiniest souls sat at God's feet, surrounded by His love.
The time was coming very soon, God said, "Don't be scared.Your family awaits your arrival,now let us get prepared." And so God looked upon these souls,in mute consideration. He knew the life each one would live, He weighed each situation.
...

The souls chatted amongst themselves and wondered who they'd be. They knew the day grew closer; soon they would meet their family.
How would you like to change the world? God asked each soul in fun. The chance to change a soul, a heart, is held by only one.
I'm going to make the world laugh, one soul said with a smile, for laughter heals a broken heart and helps us through each trial.Then take with you the brightest smile, and share your laughter well. The soul thanked God immensely and down to earth he fell.
And I'll remind the world to sing, a sweet little soul told the Lord. I have the gift of a beautiful voice, I can hit every note and every chord. You'll have the gift of music then, a voice, lovely and strong. Share your gift with others and let them hear your song.
I will show compassion, the next little soul raised her hand. Some people only need a friend, someone to understand. Compassion is a good thing. God said with much delight. For you, I will give mercy, you'll perceive wrong from right.
And so each soul shared every thought,vtheir plans, their hopes and dreams. And God explained that life, it is, much harder than it seems.
And as each soul began to leave in a scurry of laughter and fun, heaven became quiet and still, for left was only one. Come sit with me my little child, God said with a sigh. Do you know how many you will touch, in a world left wondering why?
Before your life comes to an end, you will know much strife, but you will teach those who know you, to cherish the smallest things in life. And some may only know you through a simple photograph. They'll never hold you in their arms, or memorize your laugh. Some may only know you through the words they read each day, but you'll do something wonderful, you will make them stop and pray.
The tiniest soul raised his head up, to touch God's firm, strong hand. Father, I am ready, for the life you have planned. And I will do the best I can without a word or deed, for you, Lord, are the planter, and I will be your seed.
He could already hear many praying,and although they had not seen his face, they were praying for his safe arrival, they were asking for mercy and grace.
What talent do I leave with Lord? What gift do you impart? All that you will need, God said, I've placed within your heart. And so God kissed this tiny child, knowing all that he would be, and whispered as he watched him go...... you'll teach them.... to love Me.

Guide Her Like you did me!!

" If i get to heaven before you have babies, I hug them and kiss them, Then I will send them to you SPOILD"

I vagly rememberthis but i do remember it. My Cousin(second but she is a cousin), had spina bifida, but it NEVER slowed her down. The drs told her she could do anything and she belived it. But from a young age i knew SARAH was differant but in my eyes she was her own kind of normal. Sarah never cared about what others thought, She loved like every day was her last. Sarah was everything i wished i could be. She went out with a bang just like she wanted.

When we found out Kennedy had a heart defect, i thought of sarah...I was going to teach her to fight just like she had done. That there was NO DIFFERANCE between you and the cheerleader doing flips...we would find away for you to do something if we had to. I knew i couldnt do it without sarah but she was guiding me and telling me i could, Just like we told her she could. I could she her face telling me that if i gave up she was going to kick my Butt.

Sarah, was our reason to fight. She gave me the greatest hope for Kennedy. I knew she gave me kennedy because she knew i would teach her to fight and fight and fight. Sometimes it doesnt feel like either one of them is gone. Yes LIFE IS SOOOOOOO unfair i have had to learn this the hard way but i learned it.

Tear and an EXPLANATION

Ok so tonight went as expected...Questions and tears!

Tonight for slyder it became real..she was a real baby with real problems. He asked about her "zipper" why she needed it, How much she weighted(the heart came in handy), what she liked, why she needed to tubes....He said "but its not fair she wasnt a year old"

Yor right life isnt fair think about how much fun she is having with JesusHeaven is just beyond the stars.

He cryed after i told him all the pennies he found means she misses him that mucha and when he dreams about her that mean she is thinking about him. after the pictures he realized that she is better off in Heaven even though he really wanted her here with him. Slyder got super excited when we told him we were ordering him a new one...did he want a brother or sister....

I mean how else do you tell him about someone that in his eyes wasnt real????

Knowledge Is power

Hypoplastic left heart syndrome (HLHS) is a birth defect that affects normal blood flow through the heart. As the baby develops during pregnancy, the left side of the heart does not form correctly. Hypoplastic left heart syndrome is one type of congenital heart defect. Congenital means present at birth.
Hypoplastic left heart syndrome affects a number of structures on the left side of the heart that do not fully develop, for example:

• The left ventricle is underdeveloped and too small.
• The mitral valve is not formed or is very small.
• The aortic valve is not formed or is very small.
• The ascending portion of the aorta is underdeveloped or is too small.
• Often, babies with hypoplastic left heart syndrome also have an atrial septal defect, which is a hole between the left and right upper chambers (atria) of the heart.

The Centers for Disease Control and Prevention (CDC) estimates that each year about 960 babies in the United States are born with hypoplastic left heart syndrome.¹ In other words, about 1 out of every 4,344 babies born in the United States each year is born with hypoplastic left heart syndrome




Surgery
Soon after a baby with hypoplastic left heart syndrome is born, multiple surgeries done in a particular order are needed to increase blood flow to the body and bypass the poorly functioning left side of the heart. The right ventricle becomes the main pumping chamber to the body. These surgeries do not cure hypoplastic left heart syndrome, but help restore heart function. Sometimes medicines are given to help treat symptoms of the defect before or after surgery. Surgery for hypoplastic left heart syndrome usually is done in three separate stages:

1. Norwood Procedure
   This surgery usually is done within the first 2 weeks of a baby’s life. Surgeons create a “new” aorta and connect it to the right ventricle. They also place a tube from either the aorta or the right ventricle to the vessels supplying the lungs (pulmonary arteries). Thus, the right ventricle can pump blood to both the lungs and the rest of the body. This can be a very challenging surgery. After this procedure, an infant’s skin still might look bluish because oxygen-rich and oxygen-poor blood still mix in the heart.
   
2. Bi-directional Glenn Shunt Procedure
   This usually is performed when an infant is 4 to 6 months of age. This procedure creates a direct connection between the pulmonary artery and the vessel (the superior vena cava) returning oxygen-poor blood from the upper part of the body to the heart. This reduces the work the right ventricle has to do by allowing blood returning from the body to flow directly to the lungs.
   
3. Fontan Procedure
   This procedure usually is done sometime during the period when an infant is 18 months to 3 years of age. Doctors connect the pulmonary artery and the vessel (the inferior vena cava) returning oxygen-poor blood from the lower part of the body to the heart, allowing the rest of the blood coming back from the body to go to the lungs. Once this procedure is complete, oxygen-rich and oxygen-poor blood no longer mix in the heart and an infant’s skin will no longer look bluish.

Infants who have these surgeries are not cured; they may have lifelong complications.
Infants with hypoplastic left heart syndrome will need regular follow-up visits with a cardiologist (a heart doctor) to monitor their progress. If the hypoplastic left heart syndrome defect is very complex, or the heart becomes weak after the surgeries, a heart transplant may be needed. Infants who receive a heart transplant will need to take medicines for the rest of their lives to prevent their body from rejecting the new heart.

4.5

Four and a half Months ago @ 3:28pm a little angel was born, Not to stay to long for God knew she would be leaving soon. She Fought and fought with the help of her mommy and daddy. She only hope what Jesus had told her wouldnt be true. She held on to the hope of her mommy and daddy. The day came...She cried and asked but Jesus you left them hurting, Jesus smiled and said "thats why you are here....to help and guide them from above it a job only you can do. Not popi or pawpaw could complete this for they are older souls, and you my daughter are younger and can fly quickly if need be." She smiled and said "i guess so, I dont like it, i REALLLY love my mommy she gave me kisses, and my daddy he made me fight, i wanted to jump in his arms and stay for ever." Jesus giggled and said " But Kennedy YOU can give your mommy kisses, and YOU can stay in your daddies arms, they feel you when you are there, they might not always see you but they KNOW when you are there." Kennedy Felt alot better.

For my Monkey Girl...I wake you becaues i know you would want me too. I am optimistic becaues you have taught me I can see the better side of life even when everything stinks. I love endlessly becaues there could not be a tommorow. I see becaues you have brought light in to my life. I fight becaues i know the true meaning of a fight. Thank you My daughter you are deffinantly MINE...I was that much trouble in 22 years, but you beat me in 22 days. Love and kisses to you as long as you are mine.

Every Storm Cloud Runs out Of Rain

What a rainbow baby?     The child you have afte the lose of another child. I never thought i would be trying to have a rainbow baby after having Kennedy...YOU get married, Have babies, grow old, your children bury you. Not the other way around. When you grow up you are never told that this could happen. I honestly NEVER would have thought something could go wrong with the heart, I was worried about other defects but the heart. Honestly I wasnt sure if i was ready to become "a Heart mom". The journey that God laid be for me, i wanted to scream "why my baby" what did i ever do to deserve this.....But i was soooo blind.

Having a heart baby really wasnt all bad. She showed me what TRUE LOVE was. Kennedy taught me sooo many lessons, I never would have know without her. I wanted a "NORMAL" baby but how do we know what normal is what if a Heart defect is "normal" in Heaven. I have met sooo many new friends that have become family "MY HEART FAMILY", while i lost my dad and most of that side of the family. I gained a new family the elite of the elite.

While i have lost soo many i used to call friends, i gain twice as many. Like the song says..."EVERY STORM RUNS OUT OF RAIN..." Just because I lost a child doesnt mean i cant be happy, theres no way my daughter would want me to cry, greive forever. I like to think when i have a "bad day" Kennedy is sitting next to me saying"momma i am right here and always will be".

I want everyone to know you can always ask questions about kennedy or our lives...ill answer to the best of my ability or ill find out the answers. I may cry but there not sad tears they are happy tears because you remembered her!!

To my angel, We love you and you are never far from our minds.

Holiday's????

As this hoiday season creeps up on us...i ask you to stop and pray for the familys that have lost a child or love one. Its harder than you think, Release a baloon or light a candle , But show them that you remember them.







Even though things are different I pray they stay the same.
Because the hours, the nights, the days; they just came.
I want the cold, the snow, the ice on the ground.
Time doesn't stop just because you're not around.
Shimmering lights, merry wreaths, and decorations on the tree.
But I hope, and I dream that you're thinking of me.
Candles that flicker, burn, and melt away.
Just like the words in my head that I need to say.
Familiar feelings, alone, and without you.
Even though it's old; it's still fresh, and it's new.
Light the logs, in the fire place, but don't let them go out.
I need to hold on to something bright to curve my doubt.
I want the gifts, and the presents underneath the tree.
Even if not a one of them is addressed to me.
Leave them wrapped, even after New Years they stay.
So there's always surprises, and a chance for a new day.

A few Poems i thought id share!!!

All written by Stephanie Husted

Some bonds cannot be understood...
Unless you have walked them before...
A path that I would not have chosen...
A future I just can't ignore.
We've all watched our children intently...
Memorizing each line...
And let them leave our loving arms...
And prayed things would be fine.
We've paced the halls awaiting news...
And wondered just what lie in store...
We've felt our own heart's racing as...
We walked through an ICU door...
We've seen the child we love so much...
Struggling to overcome...
The lines...the cords....the monitors...
No thoughts...no words...would come...
We've prayed for an improvement...
We've laid it in God's hands..
We've cried...we've hoped...we've worried...
We've wondered of God's plans.
We've learned just how a heart works...
Each valve and artery...
We've asked alot of questions...
We've faced each surgery.
And somewhere down this well worn path...
We've met more families...
Who know exactly what it means...
To live with this disease.
We've smiled at every triumph...
And shared in every sigh...
We've prayed for a child that struggles...
And each family that must say goodbye.
Some battles are fought with bullets...
And weapons made for war...
While these are fought in silence...
Behind a hospital door...
We've wondered what lies in our future...
We've been thankful for just one more day...
We've stopped and watched with tear-filled eyes...
Our children...as they play.
We've struggled with ounces and weight gain...
Why won't my child just eat?
But heart mom's ...we're a tough group...
We've learned how to face a defeat.
We've faced those moments...others do...
When life has got us stressed...
But it doesn't take long to remember...
That we are richly blessed.
We've taken on a whole new role...
One we we wouldn't exchange if we could...
We know that life is difficult...
We hold onto all that is good.
God chose each of us carefully...
I do believe he smiled...
Some bonds begin with strangers...
And just one special child.





Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.
Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.
Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.
Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...
Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".
Some bonds cannot be understood...
Unless you have walked them before...
A path that I would not have chosen...
A future I just can't ignore.
We've all watched our children intently...
Memorizing each line...
And let them leave our loving arms...
And prayed things would be fine.
We've paced the halls awaiting news...
And wondered just what lie in store...
We've felt our own heart's racing as...
We walked through an ICU door...
We've seen the child we love so much...
Struggling to overcome...
The lines...the cords....the monitors...
No thoughts...no words...would come...
We've prayed for an improvement...
We've laid it in God's hands..
We've cried...we've hoped...we've worried...
We've wondered of God's plans.
We've learned just how a heart works...
Each valve and artery...
We've asked alot of questions...
We've faced each surgery.
And somewhere down this well worn path...
We've met more families...
Who know exactly what it means...
To live with this disease.
We've smiled at every triumph...
And shared in every sigh...
We've prayed for a child that struggles...
And each family that must say goodbye.
Some battles are fought with bullets...
And weapons made for war...
While these are fought in silence...
Behind a hospital door...
We've wondered what lies in our future...
We've been thankful for just one more day...
We've stopped and watched with tear-filled eyes...
Our children...as they play.
We've struggled with ounces and weight gain...
Why won't my child just eat?
But heart mom's ...we're a tough group...
We've learned how to face a defeat.
We've faced those moments...others do...
When life has got us stressed...
But it doesn't take long to remember...
That we are richly blessed.
We've taken on a whole new role...
One we we wouldn't exchange if we could...
We know that life is difficult...
We hold onto all that is good.
God chose each of us carefully...
I do believe he smiled...
Some bonds begin with strangers...
And just one special child.



One day my world came crashing down,
I'll never be the same...
They told me that my child was sick..
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong..
It seemed my heart was breaking..
As, I'd loved him for so long.
I will not give up on this child..
despite your best "advice"..
I will give my child a chance..
No matter what the price..
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive!
And he'll needs lots of therapy?
And he just can't gain weight?
Alright God I can do this..
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed..
I watch him then, for quite awhile..
(I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why?
Oh Lord, I just can't know your ways..
No matter how I try.
And yet, I trust You hold his life..
(and guide us through each day)
My mind says savor each moment he's here...
But my heart whispers,"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good nights sleep..
to learning every med..
From... wondering will he be alright?
to watching him reach out his hands..
with every smile, my heart just melts..
(despite life's harsh demands)
For all who see that faded line..
I look to them and smile..
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..
(It's the door to his beautiful heart)
You must have known how much I'd love him..
(Just as You loved him right from the start)
A heart mom is always a heart mom..
(wise beyond all of her years)
And for those who have angels in heaven..
Our hearts share in all of your tears..
On Mother's Day I will remember..
You chose me for him(and no other)
And I will embrace that beautiful day..
When I became a "heart mother".

Harder

This move has proven to be harder than i thought.

EMOTIONALLY::: Its been very hard, trying to tel my self Kennedy is everywhere i am. Trying to find a "new" "normal.

I would love to go out and party but I feel guilty. Not for going out but that i didnt get a babysitter , or didnt call a grandparent. I would love to just to be care free but i cant...I AM A MOM. But my child is no longer with us but a mom none the less. I want to have a drink or two or more, but i know that wont make me feel better. to be honest i am afraid of alcohol. I just am.

I am happy to say me and Michael have grown soooo much more close...I guess you can say we went throught the storm and came out holding hands and stonger than EVER.

 

Me and Michael are SOOOOOO strong. Yes we have our weaknesses but we talk....Talk all the time. talk about everything from 8ball to our future.

 

The move has yet to be proven ok for me but i am looking for work something outside of daycare. i think maybe once i am not just sitting at home all by myself then ill be ok.

 

 

 

I am going to send an angel in front of you, to guard you on the way and to bring you to the place that I have prepared.
Exodus 23:20