Help for NICU Families

By Sally Loesch
on June 22, 2017
14 comments

 


A couple of weeks ago, I shared information about some of the organizations that provide a place for parents of hospitalized children to stay when their babies are receiving medical care far from home. Of course, the financial burden on families is not limited to the cost of housing. Even when a baby is hospitalized near enough the family’s home that parents can make the trip to the hospital and back each day, the cost of gas, meals, and childcare for older siblings adds up quickly. There are many organizations that offer financial support to help cover those expenses. Here are some groups to look to if you need help making ends meet after giving birth to a premature baby:

As with questions about housing, the first person parents should talk to about financial assistance is a NICU social worker or family liaison. There are many local support organizations across the country that work closely with individual hospitals to provide gift cards and vouchers for NICU families. If there’s one in your area, your social worker can guide you through the process of requesting help.

Project Sweet Peas is a family support organization that provides care packages, peer-to-peer support, information, and financial assistance to families with premature babies nationwide. Their NICU Family Financial Assistance Fund provides monthly grants to help parents manage the many expenses of having a baby in the NICU. You can find more information about applying for a grant, or supporting the fund with a donation, on their website.

NICU Helping Hands is a preemie parent support organization that offers many services to families, including education, emotional support, and financial assistance. Their Family Assistance Program provides gift cards to families to cover the cost of groceries, restaurant meals, and gas while their baby is in the NICU.

Miracle Babies provides information for parents, support for research in the field of premature birth, and financial support for families in 15 hospitals in California and the Atlanta area. Their goal is to help with the cost of transportation, meals, and childcare to ease the stress of financial concerns, enabling parents to be with their babies, bonding with and caring for them. You can find out more about program specifics and contact information here.

These are just a few of the many organizations providing financial assistance to NICU families. If you'd like to make a donation to help parents in this way, check with you local hospital to find out if there's a group they work with. Little Giraffe Foundation is another  national organization that funds grants to support preemie parents, and is worth a look if you'd like to contribute. Have another suggestion? Let us know about you favorite preemie parent support organizations.

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When the NICU Is Far From Home

By Sally Loesch
on June 08, 2017
1 comment

Having a premature baby raises so many questions for parents. How long will the baby be in the hospital? What can we do to be involved in his/her care? What does my baby’s diagnosis mean, and what’s ahead? And unfortunately, for some parents: Where am I going to sleep tonight? The unpredictability of premature birth means that sometimes newborns need to be cared for in a NICU far from the family’s home. Whether labor starts unexpectedly on an out-of-town trip, or a family’s local hospital doesn’t have the capacity to treat the baby’s condition, some parents face the additional challenge of finding and paying for a place to stay. Here’s a look at some of the options parents have and how the rest of us can help support families in this difficult situation.

For parents: the first place to ask for information is your hospital’s social worker. She or he should be able to direct you to services in your area. As older NICUs are being renovated and new ones are built, some hospitals are incorporating spaces for families into new floor plans. Private rooms are becoming more common, sometimes with pull-out couches to give parents a place to stay right in their baby’s room. If that’s not an option, here are some of the independent organizations that provide places for families to stay.

Ronald McDonald House Charities is the largest nation-wide organization that offers housing to families with hospitalized children. There is at least one Ronald McDonald House in every state, and many more around the world. They offer a place to stay and home-cooked meals to families, regardless of their ability to pay, and are supported by volunteers, individual and corporate donations, and family contributions.

Some hospitals that provide specialized care have affiliated hospitality houses that offer lodging to out-of-town families at low or no cost. Believe In Tomorrow Children’s House at Johns Hopkins in Baltimore, Hubbard House and Perry Pavilion at Orlando Health, and Bannister Family House at UC San Diego Health are a few examples. The Healthcare Hospitality Network is an umbrella organization of hospitality homes and is a good resource for more information.

Hospitality Homes is a unique non-profit organization in the Boston area that pairs out-of-town families with volunteer hosts who offer a place to stay in their homes free of charge. Not only do families have a place to sleep without the stress of finding a way to pay for lodging in an expensive city, they also often make lasting connections with the generous volunteers who host them.

These, and similar organizations across the country, provide a much-needed service for families with hospitalized children. But there are often waiting lists, and even a minimal family donation can add up over an extended hospital stay. Supporting hospitality houses like these is an important way the rest of us can help care for premature babies and their families. For anyone who would like to help families with children in out-of-town hospitals, all of these organizations gratefully accept monetary and material donations, and often volunteers. Getting involved with a hospitality home in your area is a wonderful way to make a real difference for families with preemies.

Of course, a baby's hospitalization an hour or two from home also presents difficulties for parents, even if they are close enough to sleep at home. We'll talk about some of the help available for preemie parents in that situation in a couple of weeks. We'd love your input; if you'd like to share your experience, or let us know about an organization not listed here, we'd love to hear about it!

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Happy Mother's Day

By Sally Loesch
on May 11, 2017

We want to wish a very Happy Mother’s Day to all of the amazing moms we’ve had the privilege to meet over the years. Your courage is an inspiration. Mothers with newborns in the NICU, mothers of NICU graduates, mothers who have lost children - you all deserve an extra measure of appreciation and respect this Mother’s Day, and every day, for stepping up to so many unexpected challenges. When you spend long days with your baby in the NICU, when you dedicate countless hours to helping your baby learn to eat and sit and walk, when you grieve: you show the world what true love is.

We also want to recognize all of the mothers who have used their experience to support other families. Whether you’ve had a preemie and then helped a friend in the same situation, or started a preemie parent support organization: thank you! We love following the work of these moms who share their knowledge and perspective to support other families:

Natalie Estelle and Joi Turner of Preemie Moms Rock. These preemie moms started Preemie Moms Rock last year to offer healthy meals, emotional support, and opportunities to relax to NICU moms in Baltimore. Local organizations like this are so important to the life of a community, and what Natalie and Joi are doing is a beautiful thing. And the portraits of preemie moms on their Instagram page are awesome!

Martha Sharkey of Today Is A Good Day. Martha and her husband Paul have used their experience of premature birth and infant loss to comfort and encourage other families through listening sessions, financial grants, and care packages. Today Is A Good Day is involved with Abington Memorial Hospital in the Philadelphia area and is another wonderful example of how a family’s contribution to their community can make a big difference.

Jennifer Hall and all of the other mothers involved in Graham’s Foundation. From delivering care packages, to guiding parents to informational resources, to connecting families through their Preemie Parent Mentors program, Graham’s Foundation does so much to make the NICU experience a little more manageable for families across the country.

Kelli Kelley and all of the moms at Hand to Hold. Hand to Hold’s Preemie Babies 101 blog, NICU Now podcast, and parents' forums are all excellent resources for parents with questions on topics ranging from how to cope with feeling of guilt after giving birth prematurely to potty training a child with special needs. The women of Hand to Hold provide a wellspring of knowledge and experience and we thank them for it!

Know another mom who is making a difference in the lives of preemies and their families? We’d love to hear about her! And for all you mothers loving your babies through the tough times: stay strong! You have our admiration, respect, and best wishes this Mother’s Day.

With love,

All of us at Jacqui’s Preemie PrideSaveSave

Milk Banks

By Sally Loesch
on May 08, 2017

As the benefits of breast milk for premature babies are being formally recognized by major health organizations including the American Association of Pediatrics and the World Health Organization, major obstacles remain when it comes to getting donor milk to the babies who need it. I want to talk today about human milk banks and how we can all support efforts to provide the very best nutrition for preemies.

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The Octo Project

By Sally Loesch
on March 13, 2017
14 comments

Many of you have probably seen the adorable crocheted octopuses making their way into NICUs around the world. We are pleased to announce that we're organizing our own Octo Project here in central Maryland! We've been working over the past few weeks to get local crocheters together to make octopuses to be donated to babies in a NICU in our area. I wanted to update everyone on our progress and let you know how interested crafters can get involved.

The inspiration for this is of course The Danish Octo Project, the group in Denmark that has been featured in the news recently for their program delivering octopuses to babies in sixteen hospitals in Denmark and one in Greenland. They have found that when given these small octopuses to hold, premature babies are comforted by the tentacles that serve as a replacement for the umbilical cord they often hold onto in the womb. And with their hands otherwise occupied, the preemies are less likely to pull on their tubes and wires.

We're starting out small because we'd like to be sure that every family that goes through the NICU we're working with can be offered an octopus and there are only so many I can crank out in a day. But we would love to make this a larger project, so if you live in central Maryland or south central Pennsylvania and would like to get involved, we would welcome your participation! You can download the pattern here. It has been very slightly adjusted from the original Danish Octo Project version (which you can find here) for American crocheters. Please feel free to use it to make an octopus for a friend or loved one with a preemie. Or if you'd like to make one (or more!) to donate through our project, please contact me at sally@preemiepride.com and we can discuss details.

We are also partnering with The Knitting Cottage in Waynesboro, PA to make kits available, which include the pattern and enough yarn for an octopus (sold at the cost of the yarn alone). The shop is located at 6768 Iron Bridge Rd just south of Waynesboro, so if you're in the area and want an easy way to get started, please do stop by and see them. You can return the finished octopuses to the shop and we'll collect them to be packaged and donated to the hospital.

We're so excited to be working on this and are looking forward to sharing more as we progress. Stay tuned for updates and pictures of lots of adorable octopuses!Save

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NICU Terms To Know

By Sally Loesch
on January 13, 2017

    Neonatologist; orogastric tube; pulse oximeter; continuous positive airway pressure; necrotizing enterocolitis; patent ductus arteriosus. The neonatal intensive care unit is a busy place with a language of its own that’s often difficult for outsiders to decipher, even with context. When parents of a newborn find themselves in the NICU, the amount of new terminology that has suddenly become critically important can be overwhelming. If you are a new parent with an infant in the NICU, the best thing you can do is talk to the nurses and doctors. Be involved in your baby’s care and don’t be afraid to ask questions. Hospital staff can explain your individual situation and help you learn the terminology relevant to your child.

For family and friends of preemies, it’s helpful to learn some basic NICU terminology so that when you ask, “How’s the baby doing?” you’ll have a better understanding of the answer. The same goes for anyone expecting a baby, even with a low-risk pregnancy. Birth can be unpredictable, and even a passing familiarity with the world of neonatal intensive care will be a benefit in the event your baby needs to spend some time there. Here are some basic terms, conditions, and treatments used in hospitals to care for premature and sick infants. This list is an introduction to the NICU; for more comprehensive information, have a look at the resource links at the bottom.

 

Care Team Members

Neonatal Nurses provide most of the day-to-day care in the NICU. They are instrumental in almost every aspect of a baby’s care, including feedings and changings, monitoring the preemie or newborn baby’s vital signs, implementing a care plan, advising and carrying out a doctor’s orders, and supporting and educating families. They offer a wealth of information, experience, and support for families.

Neonatologists are doctors who specialize in treating newborns with medical conditions stemming either from premature birth or other complications in a full-term baby. The neonatologist is usually the attending physician who will manage the medical care of a baby, including making diagnoses, ordering treatments, and coordinating specialists on the medical team.

Pulmonologists are the doctors in a NICU who specialize in diagnosing and treating lung and breathing conditions. Because important lung development happens in the final weeks of a full-term pregnancy, preemies often require help to breath effectively. A pulmonologist will identify what is causing a baby's breathing trouble and recommend treatment.

Gastroenterologists are doctors who specialize in conditions of the stomach and intestines. Premature babies are sometimes born with conditions that cause complications in their digestive systems, making feedings difficult and increasing the risk of serious illness. Gastroenterologists diagnose and treat problems that arise involving a baby’s digestion.

 

Medical Conditions Treated In the NICU

Respiratory Distress Syndrome (RDS) is a lung condition that commonly affects preterm babies, especially those born before 35 weeks. Because a preemie’s chest and lungs aren’t fully developed, the baby may have difficulty breathing and take in an insufficient amount of oxygen. As a result, breathing is less effective and results in lower oxygen levels in the blood. Doctors and nurses pay close attention to the quality of a baby’s breathing and take steps as needed to make sure the baby is getting enough oxygen.

Patent Ductus Arteriosus (PDA) is a condition related to an artery that connects two large blood vessels that leave the heart. In a healthy newborn, this artery, the ductus arteriosus, narrows and closes naturally within a few days. If it does not close and remains large, it can cause too much blood to flow to the lungs, resulting in breathing and heart problems. Doctors and nurses in the NICU monitor babies carefully to make sure that the ductus arteriosus closes and take the necessary steps if it causes the baby distress.

Necrotizing Enterocolitis (NEC) is a serious condition of the digestive system in which cells in the lining of the intestines become infected and damaged. The risk is that the contents of the digestive system will spill out of the damaged intestinal wall into the baby’s abdomen, causing a potentially devastating infection. NEC is not completely understood, but babies who receive breast milk rather than formula have a significantly lower risk of developing it. Preventing NEC is one of the reasons that so much effort is made to provide preemies with human milk.

 

Common NICU Treatments and Equipment

Radiant Warmers and Incubators are the special equipment used in the NICU to maintain a baby’s temperature and, in incubators, a proper humidity level. They may be controlled by a sensor on the baby that monitors his temperature and adjusts accordingly.

Cardiorespiratory Monitor This is a device that monitors a baby’s heart rate and breathing and displays the numbers on a screen. If the heart rate or breathing rate fall outside of the normal range, the monitor with alert the NICU staff, who will check on the baby and make sure that everything stabilizes.

Pulse Oximeter This is another device that is connected to a baby to measure the amount of oxygen in the blood. It is usually wrapped around the baby’s wrist, hand or foot and shines a red light through the skin. The pulse oximeter measures the oxygen saturation of the blood and displays it, along with the baby’s heart rate, for monitoring.

Continuous Positive Airway Pressure (CPAP) is a treatment for babies who have difficulty breathing because of RDS or other breathing complications. A tube is secured over the baby’s nose and a continuous flow of low-pressure air, with or without additional oxygen, is pumped into the baby’s lungs. This keeps the airways open and makes it easier for the baby to breathe naturally.

Intravenous Line (IV) An IV is placed in a vein to provide a baby with fluids, nutrients, or medication as needed. Because the baby squirms, the IV may be jostled loose and its location might be changed frequently between the baby’s hand, arm, foot, leg, or scalp.

Orogastric and Nasogastric Tubes A small, flexible tube may be placed through a baby’s mouth (orogastric) or nose (nasogastric) and down the food pipe into the stomach. It is used to release gas or fluids that accumulate in the stomach, or to give feedings to a baby who is unable to take milk by mouth.

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The range of experiences in the NICU is vast. A family may be there for a couple of days for observation, or for weeks or months to treat a seriously ill baby. It’s a trying time for families in most cases. Learning about the baby’s challenges and treatment is an important way for parents to stay involved in his or her care. Extended family and friends can also benefit from learning about the NICU in order to understand what a family is facing and offer support. If you want to learn more or find out about a specific topic, many local hospital websites offer NICU information. Here are some other comprehensive resources:

From the American Academy of Pediatrics: https://www.healthychildren.org/English/ages-stages/baby/preemie/Pages/default.aspx

From the March of Dimes: http://www.marchofdimes.org/complications/the-nicu.aspx

From Graham’s Foundation: http://grahamsfoundation.org/wp-content/uploads/2015/02/NICU-glossary-b1a.pdf


The source I used for this article, which I highly recommend, is the book Understanding the NICU: What Parents of Preemies and Other Hospitalized Newborns Need to Know. Edited by Jeanette Zaichkin, Gary Weiner, and David Loren. Published by the American Academy of Pediatrics, 2017. It’s extremely helpful, informative, and encouraging.

Resiliency of babies

By Ralph Regan
on May 09, 2016

I heard an interesting story about Giants pitcher Madison Bumgarner. While doing yardwork, Madison saw what he thought was a rattlesnake. He uses an axe to kill the snake. His wife noticed that one of two baby bunnies that came out of the snake's stomach was still moving.  The Bumgarners took the bunny home, nursed it back to health, and then released it back into the wild.

At Jacqui's Preemie Pride, we hear so many similar stories of preemie survival against all odds. 1 pound babies, 6 month NICU stays, all sorts of medical procedures, etc. Our happiest emails are the success stories parents and pictures send us.

 

Our youngest grand daughter, Alice was born 1 year ago. She spent a couple days in the NICU with a minor lung tear. Our daughter-in-law had complications from c-section and needed a couple extra days. Her mother had to check into the hospital within hours of Alice's birth with intestinal issues. Three generations of women in the hospital simultaneously. Thankfully all are doing well now.

 

 

We would love to hear your stories!

Best, 
Ralph

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