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Thoughts
July 19, 2011
As I sit down to write this letter to our growing list of subscribers and members, I would like to begin with a heartfelt blessing for all who are reading it. May God’s blessing so fill your soul with gratitude and grace this day that your heart gives voice to the silent song within.
The past two months have been filled with life changing experiences, many brought about by the connections formed here at Preemie Prints. Some of the experiences have honestly made me stop, drop to my knees, and look to the Lord for comfort, guidance, and understanding. From the inception of this idea, to the daily activities that are making it a reality, we could not keep it all going without His control. The reality is that our work is scary, beautiful, and emotional. It is filled with anticipation, struggle, happiness, and tragedy. These are the intense emotions that families with babies in neonatal intensive care units (NICU) face every day across the nation. I think Allison Weaver, our Houston assistant director, put it into words beautifully when she recently said, "I just have to remember that there is so much struggling on behalf of the parents and babies, but even if I can be a small glimmer of hope or happiness, my work does matter". That sentence really sums up what our entire organization has set out to do, share hope and happiness in the midst of tragedy and struggle. The events surrounding these past few months have made that clear.
We as an organization are comprised of amazing dedicated volunteers and family members who are sharing in each others journey. We are offering support, connecting, and actually feeling, the ups and downs that families face while in the NICU. You may wonder how we can "feel" what a parent is going through even though we may be offering support online or over the phone and the answer is twofold. First is their emotional intensity. Merriam Webster describes intensity as an extreme degree of strength, force, or energy and that is what you see when it comes to the health and survival of your child. When a NICU mom is sitting by her baby's isolette wondering what is around the next corner, crying or smiling, we are there with her. Her intensity transcends all technology and as supporters we can feel it. The other part that allows us to feel, is the fact that many of us are past NICU parents and have experienced similar events, so when these emotional events come our way we are immediately taken back to our moment in time. The connecting of past and present NICU families is proving to make a difference. Richard Shaw, MD, and child psychiatrist at Lucile Packard Children's Hospital said, "NICU parents benefit greatly from advice from other parents who have gone through similar NICU experiences". This statement supports our mission! To witness one of our programs, the private online group for past and present NICU families and our angel group, flourish as they are just brings tears to my eyes. God truly has grand plans. We have 224 members in our private group all supporting each other, giving advice, asking questions, discussing, and connecting.
So what does feeling the ups and downs of the NICU alongside our member families make us do as an organization? It makes us want to give.
Give in so many ways. Give through the gift of prayer, photography, gift bags, gift cards, jewelry, NICU milestone beads, information, groups, and meetings. Give through our words, our community, our comfort, our friendships, and our love. We know what NICU families face daily and they need our support and love during this journey. If you do not yet know the many ways Preemie Prints gives, please take a moment to visit our website at www.preemieprints.org. We invite you to spend some time, download our brochure, and share it with someone you know.
There comes a time when everyone can and will give back in some form. You have many organizations and options to choose from. We hope and pray that when that time comes, you will remember the work we are doing to make a difference in the lives of so many and consider giving to Preemie Prints as your non-profit charitable organization. Supporters can give monetarily, through sponsorships, or by volunteering with us. You can also buy preemie awareness items from our shop, use IGive to shop online, become a volunteer photographer, sponsor a meeting or event through your place of business, or donate items for our gift bags. We are also currently seeking support through the donation of office space in the Brazos Valley. With your help we can continue to make this work a reality in local and nationwide communities, so please contact us if you would like to get involved. If you have a family or friend with a past or present premature or sick baby please send them our way, we promise we'll take great care of them!
God bless each of you,
Amber Collier
Founder/Preemie Mom
Volunteer Spotlight
A preemie mom is driven to help others!
by Sarah Doyle, Preemie Mom, Preemie Prints National Volunteer
Hello everyone, I would like to start with how honored I am to have been chosen to be in the “spotlight”. I am a mother of four under four! All preemies, (and all boys) which makes me very passionate about this organization and what it stands for. I started up as a volunteer this past March right after my twins Wyatt and Cole were born. (31wks on 2/22/11) My other two sons are Jaxson who is now 3, born at 36 wks and Joaquin who is 1, born at 30 weeks.
I started off helping as a prayer page coordinator for our prayer wall, helping those in need get the prayers they needed. Then the more and more I read and became invested with the other woman involved in the group, they felt like a family to me, and I just knew I wanted to help more!
I started making a preemie awareness jewelry collection with bracelets and a necklace, where the proceeds go to helping raise money for the foundation. I thought it was a great idea, because we all love our babies so much and are so proud of them, however when you’re going through it by yourself it’s hard to know what’s going on at the time. The awareness bracelet itself would be a way for others around you to maybe see it and comment or ask about it, and then spread the word. Of course wearing the shirts with it helps too!
After that things in our group started not looking so good, babies were getting very ill and we even lost some. This literally broke my heart as these women are like my sisters, and even though I haven’t met them in person there are still a few that I consider my nearest and dearest friends. I again wanted to do more to help, so I spoke with Amber about doing some research studies for the information blog. It was another way of giving back, or paying it forward for me. So much happens in the NICU and so many different terms are used, sometimes you feel like you’re a child re-learning everything again. I thought it was important to start off with the basics and then move into certain “specialized” topics, especially if I saw a couple of members struggling with a certain issue.
Currently amongst these things, I am helping with the “Beads of Hope”project and have started a Preemie Prints family map so we can all find people close to us to connect. All still a work in progress! I am also an admin on the group page so I continuously go there to offer my support for others and hope they know they can always come to me if they need to talk.
With all of that being said I will end with this, I adore this organization, and appreciate having an outlet to go to with just about anything on my mind. I thank God for being able to be a part of it and besides raising my four beautiful boys this ranks right up there with one of the most gratifying things I have ever done. Thank you all and God bless.
Information Infections in the NICU
Here is an informative article regarding infections in the NICU. The article is provided by our new partners at Pediatrix Medical Group, our primary source in medical information for NICU families. Thank you Pediatrix Medical Group for supporting and partnering with us!
About infections: Babies born early (premature) have a higher risk for infections. Infections can cause severe health problems for premature babies. Not all infections can be avoided, but knowing about them and ways to help prevent them can be helpful for your baby.
Why might the risk of infection be higher for my baby?
There are many reasons for this:
• For premature babies, the body system that fights off infection (the immune system) is not yet fully working and/or is weakened by illness.
• The skin of premature babies is very thin and breaks easily --- this allows the germs that cause infection to enter the body more easily.
• Babies who cannot have breast milk or colostrum (the mother's first milk) are at higher risk because breast milk helps make the immune system stronger.
• Babies needing special care may be treated with equipment that has tubing, or with needles that must be inserted through the skin to provide medicines and fluids. Use of this equipment may increase the risk of infection.
• Medicines used to treat infections may become less helpful (called drug resistance) — this makes the infection harder to treat in some babies.
Keep in mind that infections often result from a mix of factors, including the baby’s current health
Some babies may be born with an infection. In these cases, the baby gets the infection from the mother either while in the womb or during the delivery. Sometimes the mother may not have any outward signs of the infection and does not know that she has it. If the baby gets an infection while in the womb, it may cause physical problems in the baby. In other cases, the mother may have a type of germ that may not affect the baby in the womb, it may cause physical problems in the baby. In other cases, the mother may have a type of germ that may not affect the baby in the womb, but may be passed to the baby during birth. If the mother has an infection, doctors may advise that the baby be delivered by cesarean section.
What causes infection? Infections are caused mainly by three types of invading agents: bacteria, fungi, or viruses. Sometimes you may hear people refer to these simply as "germs" or a "bug." Each type of a germ causes certain health problems, which are treated with different method.
Candida [can-DIH-dah] is a fungus that may cause severe problems. It more often affects babies weighing less than 3.3 pounds (1,500 grams) at birth. A baby may contract this during the birth process or may get it after birth, especially if he or she needs antibiotics for a period of time to treat bacterial infection.
Group B streptococcus [strepTOE-kok-us] is a bacteria that is a common cause of infection in newborns. Many people carry this germ without getting sick from it. But if can affect babies within the first week of life or up to a few weeks after birth (called late-onset infection).
Methicillin-resistant staphylococcus [staph-y-loKOK-us] aureus (MRSA) is a bacteria that is resistant to some types of medicines. It may cause severe infection that is hard to treat.
How are germs spread? Infections can be spread to babies from other people through touching, breathing, sneezing, coughing, or from clothing. Germs may be passed to the infant from the mother during delivery. Medical devices used in the care of your baby may also cause infections. The intestine of a baby, which has many bacteria, is also a major source of infection.
Infections may vary in severity and in some cases can cause brain damage, problems with muscles and movement, breathing, and/or hearing loss.
What happens if our baby gets an infection? Treatment depends on the type of infection. Often treatment includes giving medicines. Antibiotics may be used for infections caused by bacteria and antifungal medicines may be used for fungal infections. With a few exceptions, most viral infections are not treated with medicines. Some babies may be treated for more than one infections while in the NICU.
How do we know if our baby has an infection? Premature babies often do not show common signs of infection, such as a fever. Also, the signs of infection may differ with each type of germ. Some signs may include problems with breathing or with feeding, and a general lack of activity in the baby. Tests of body fluids, such as blood, urine, saliva, and spinal fluid may be performed to confirm an infection.
Can infections be prevented? This is a complex question. Some types of infection can not be avoided but may be reduced. For example, a medicine may be given to the mother before the baby's birth and/or to the baby right after birth, before any sign of infection appears. This may happen if the doctor thinks the baby is at high risk for certain germs (such as Candida) and/or if the mother is known to carry a certain germ. In the NICU, infection prevention steps include:
• washing hands often
• removing the baby from devices that require needles and tubes as soon as the baby is healthy enough
• keeping the area very clean (sterile) while changing or cleaning the needles or tubes
• giving the baby breast milk when possible
Sometimes babies with infections that are spread by direct contact may be placed in a separate room to prevent the germs from spreading to other infants. You also may see nurses and doctors wearing gowns, masks, and gloves when they perform certain care tasks with your baby, such as working with tubing or needles.
What can parents do? Although many steps are taken to avoid infection, sometimes infections occur despite our best efforts. Studies show that taking active steps to control the spread of germs can help reduce the number of infections. Parents can take an active role in helping to control infection in the NICU by:
• learning about infections and how they are spread
• providing mother's breast milk or even colostrum when possible
• taking steps to control infection after you take your baby home
• working as partners with your health care team to follow all prevention measures
5 things you can do to help prevent infection:
1. Clean your hands.
2. Make sure health care providers clean their hands.
3. Cover your mouth and nose when sneezing and coughing
4. If you are sick, avoid close contact with others.
5. Get shots to avoid disease and to fight the spread of infection.
http://www.pediatrix.com/workfiles/medicalaffairs/A4_About%20Infections.pdf
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Sponsor Us, Donate, Endorse?
Many businesses and individuals choose national charitable organizations to support, but we invite you to consider and present Preemie Prints as a community based alternative choice! If you would like a media package to present to your employer or to consider yourself please email amber@preemieprints.org. This packet will detail our work and future endeavors and show why we are a great community based charity to support.
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Supporting Research
A future endeavor of Preemie Prints is to help fight prematurity and birth defects and to help fund neonatal intensive care research projects. A few projects we currently endorse and support are dedicated to performing clinical research that will improve the quality of life of infants and young children by optimizing brain development and long-term outcomes of extremely premature infants in a NICU. These research projects develop innovative bedside solutions with the hope of making significant impacts on perinatal and neonatal care. Other projects include research into finding a therapeutic treatment that will improve the intellectual abilities of persons who have Trisomy 21, the genetic disorder more commonly know as Down Syndrome.
Ethical Research Label
This label guarantees that the research projects we highlight and support respects human dignity. We undertake only to finance research that respects human life from conception. We do not support any projects that use embryos or human fetuses as research material.
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Watching Over Us
Our loved ones are only a thought away… when they pop into our minds or our conversations, they are saying 'hi.' When a memory flashes by they are telling us they are with us. Honor them, Celebrate them by living your Best Life, a life full of love, grace, forgiveness and peace. ~ from Ask Anya
Prayers for peace, strength, and faith to all grieving families who are facing the loss of their baby. Especially our close friends Amirah, Kesha, Emma, & Katie.
Tiny Angel Prayer
Little ones who have gone to be with our Creator, we ask that you help to watch over all babies in NICUs across the world. We know you are with your families everyday in spirit. It may be a butterfly, a hummingbird, or just the memory of holding you close. We pray this truth gives them strength to face daily life with peace, knowing they will one day be reunited with you in Heaven.
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No place like home!
A special congratulations to a few recent NICU grads:
Noah, Wade, Emma, Levi, Claire, Katelyn, Kathryn, Gabriel, Constance, Tyler, Ava, Ashlyn, Morgan, Bryson, John, Grace, Riley, Patrick, Michael, Elyse, Sarah, Jude!
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Coming Home Soon!
Preemies still fighting, growing, & healing in a NICU and other little ones needing prayers. Please keep them all in your prayers. Here are only a few of the many...Eva, Jayce, Gezell, Evan, Kannan, Gerald, Nate, Harper.
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NICU Fun Fact
Evidence-based guidelines for successful breastfeeding and kangaroo care for preterm babies are
two examples of ways to increase parental
involvement in the neonatal unit, in order to
promote parental choice and empowerment as
part of child and family-centred care.
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Keeping our antepartum, bedrest, and high risk moms in our thoughts and prayers!
Keep those babies cookin! Candace is a member mom who had a preemie not too long ago. She is expecting again (9 weeks) and already facing the same issues as she did before. Extra prayers are sent her way!
One of our volunteers,Mellissa, is also expecting!! She has a history of high risk pregnancies and is being closely monitored. She is currently 26 weeks and we are thankful for each week she gets a little closer to term.
A new member, Brittni, has recently joined us. She went into pre-term labor at 27 weeks and is now on strict bed rest. She is hoping to keep her little one nice and cozy for a few more weeks. We are thinking about you Brittni, stay strong!
To all other members and friends who are in an antepartum unit, on bedrest, or experiencing a high risk pregnancy: stay strong, continue to pray, and know we are here for you if you need us!
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