::::::::JOEYS BRIGADE:::::::::: March 2005

OUR FORMATION

Joey's Brigade was founded after the births of our micro preemies, Joseph, who weighed 19 oz and was only 24 weeks in gestation at birth and Elly, born 25 oz. at 27 weeks of development. They both arrived during the second trimester of pregnancy but 8 yrs apart.

Though we all suffered through this journey as a family, we each had a different experience. Our daughters, Marie and Teresa, were very young when our first micro preemie was born. Their experiences were of familial instability and uncertainty, along with lengthy travel. I had a long stay at the hospital prior to the birth of Joey, causing the girls to think that they had lost their mommy. Marie and Teresa became extremely attached to their dad and were frightened of the possibility of "also" losing him. They could not understand that their daddy was only visiting at the hospital and that mommy would be coming home soon. Once Joey was born, the girls were subjected to long car rides as we traveled an hour each way to see him at the hospital’s Neonatal Intensive Care Unit or experienced the uncertainty of long separations when they didn’t accompany us. It was very apparent that it was a tremendous hardship for these little girls. It didn’t take long to realize that they were also little "victims" of the situation.

When Elly was born, the children had to endure further uncertainties. This time they were older and more capable of understanding the situation. Worries that their parents might never come home were not part of the situation; however, the knowledge that Elly faced serious dangers was indeed their reality. They had to deal with the emotional roller coaster inherent to their sister’s stay in the NICU. They had a more intimate knowledge of the anxiety that swirled about our household as my husband and I tried to handle the day to day existence of life while being consumed by the restlessness for our littlest one.

Although we consciously tried to provide the kids a normal family life during those days, it is impossible to escape the fact that there is nothing normal about being separated from your baby. For my husband and me, the despair associated with the tenuous hold on life that is the micro-preemie’s existence was unbearable at times. There are no words to express how difficult it is to live within the void of uncertainty that is your child's life as his/her health changes from one moment to the next. It is impossible to describe the pain we experienced as we watched our children fight for each breath of life. We had to maintain a moderate level of emotional control while life seemed to be spinning out of control. There is a saying at the NICU, "Never Trust a Preemie". What a wise saying. There are no givens and no certainties in the life of a preemie.

Long trips took a toll on us financially and emotionally. Not being allowed to hold Joey or Elly for weeks after their individual births, and the agony of not being able to be at their bedsides on a daily basis are, perhaps, the most difficult and painful experiences that I have had to endure. However, as we witnessed the hours of life turn into days, days turn into weeks, and weeks turn into months, we became strengthened by the love, hope and dedication of the York Hospital NICU staff, along with the bonds that developed with other preemies at this NICU and their loving families. The support and love of our families and friends during this time was also tremendous.

It is the whole of this experience that touches the lives of all who love these tiny babies. Although each NICU case may have unique elements, what we have endured is part of a common daily cycle that happens at every NICU. It is this reality which prompted our family to create the non-profit organization Joey’s Brigade to help preemies and their families on their journey. It is our mission to be of aid to preemies and their families; to offer comfort amidst the confusion.

Monday, March 07, 2005

Baby Bower

This is a message sent to me by e-mail from a friendMany thanks for your prayers offered on behalf of my cousin's first grandchild who was born prematurely. As you may recall, little Bower was in grave danger due to a serious bowel infection. After many, kind prayers from all over the world and very good medical attention, my cousin, Barbara informed me today that little Bower is going home! Praise God for His goodness, compassion, love, kindness and generosity toward Bower and his family. Please continue to keep Bower and his family in your prayers. As many of you know, children born prematurely need vigilant care.

May God bless you abundantly for prayers and thoughtfulness during the holy season of Lent,
tom
PS Little Bower is my third cousin...

Friday, March 04, 2005

How tiny are your feet Joey

Joey's foot was smaller than my pinky finger.

Joey comes home!

Joey at 4mths when we brought him home from the NICU.

After our first long journey at the NICU... Joey comes home. What a joy.

Newbies: A kangaroo lesson

Newborn preemies are often whisked away to spend weeks or longer in the neonatal intensive care unit. It's necessary, of course, but touch should be part of the healing too. With "kangaroo care," first introduced in the late 1970s and now increasingly popular, a mom spends several hours a day holding her premature baby skin to skin against her chest. (Dads can do this too.) Studies have shown that a preemie who gets kangaroo care tends to cry less, sleep better, breathe more easily, breastfeed longer, and gain weight faster. And moms report a deeper bond with their babies, and more confidence in caring for them.

Catherine Grillo writes about health for Self, Good Housekeeping, and Town & Country.

For Complete Story Read HERE for Article found in Parenting On Line

GAS CARDS

There are many families who live far away from the NICU . As the cost of gasoline increases, many families find that they must make a difficult choice:

1. Decrease the number of visitations to their child or children. This is a very painful choice especially when you consider that some of these babies fight for their lives on an hourly, and daily basis. It is a source of agony that no family should ever endure.

2. Go into debt by using credit cards or borrow money to purchase gasoline. No family should ever be troubled by monetary burdens when they are faced with the life and death of their child. There are so many emotional roller coasters in this journey but this should never be one of them.

As research has shown, Kangaroo Hugs are so important to the development of the life of a preemie, that the presence of their parents is essential. These little angels need their parents by their side to hold them. Some are so very tiny that no one else is allowed to hold them. Therefore, if they are not held by their parents they will not receive the Kangaroo Care that they so desperately need. Many preemie babies spend up to 4 months or more in the NICU.

Micro Preemies -( a baby that is under 1 3/4 pounds between 700-800 grams but can include babies up to 3 lbs- the tiniest of the tiny) are so tiny, that parents must wait weeks, even a month to hold them. Finger holds and laying hands on their heads or back are the only allowed form of touch. It is crucial that parents be there to be with their babies.

Daily visitations are not only helpful for preemies and the parents but they also allow for sibling bonding. It is so helpful to the siblings to see and speak to their new brother or sister. It gives them an opportunity to be a part of this family bonding experience.

Without outside help, the cost of gasoline is simply too much for some families to meet. The agonizing separation faced by these families can not be underscored.

Your donation will allow us to purchase gas cards so that these families will not have to choose between debt and separation from their child.

PLEASE BE GENEROUS AND DONATE TODAY

Joey's Brigade

P.O. Box 152

Arendtsville, Pa. 17303