Premmie RSV Stories

The National Premmie Foundation is holding National Premmie Day on Friday 25th July 2008. The theme will be an awareness week of RSV. The Foundation wants to put together a number of stories about prems, the risks of RSV and the effects it has on families. Would you be happy to let the Foundation use your child’s story?

What is needed in your recount is: birth details including the amount of time he/she spent in hospital following their early arrival, details of ongoing medical problems, the number of times he/she has been hosptalised for RSV/Bronchiolitis (including the length of each hospital stay), was your child tested for RSV on admission, were you given details of whether or not your child’s bronchiolitis was RSV positive, anything that the doctors might have said about your child being susceptible to the virus in the future, details of how your child’s hospitalisation has affected you and your family, whether you are or were aware of what can be done to prevent RSV (including any preventative drugs).

Please do not feel obliged to contribute, the decision is entirely yours. You can also provide photos of your child at birth, during any subsequent hospital admissions for RSV/bronchiolitis, and now. Your assistance would be greatly appreciated.

You can forward your story & photos to contact_us@prembaby.org.au

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www.prembaby.org.au

Sound Monitors Protect Premature Babies

NDIANAPOLIS — Warning lights hover over the snoozing patients in Riley Hospital for Children’s neonatal intensive care unit, ready to flash whenever sound levels creep beyond normal conversation. As decibels rise, the colors on the new monitoring system change from green to yellow to red, hushing chatty parents or doctors so the babies get the rest they need to develop.

Noise louder than roughly the level of conversation can cause premature or sick babies’ hearts to beat too fast or too slowly, said Dr. William Engle, a neonatologist at Riley. And interfering with babies’ vital signs or sleep can slow development and healing because their bodies do most of that work while they sleep.

“The function of babies is to grow and develop, and in between they eat,” he said.

Preemies also need quiet so they can learn their mother’s voice and their brains can figure out how to process sound, things that normally happen in the last trimester before birth.

“It’s definitely a great idea,” Dr. Bob White, a neonatologist at South Bend’s Memorial Hospital, said of the monitoring system in Riley’s neonatal intensive care unit, or NICU.

White, who is not involved in creating or distributing the system, helped write national noise standards for NICUs that have been adopted by the American Institute of Architects and are used in most hospital design.

Inventor Chris Smith hopes doctors around the country agree with White. He has sold his Sonicu system to several Indiana hospitals and wants to expand nationally.

Smith, 43, had no training as a sound engineer and no plans to become an entrepreneur when his son Sean was born five weeks premature in 2000. But he noticed Sean flinch in response to bright light in the NICU of St. Vincent Indianapolis Hospital, and he wound up designing a system to soften the unit’s lighting.

Then the nurses asked him what he could do about sound.

“That’s really when I realized that there was no good way out there to measure sound, other than your standard, hand-held meter,” he said.

Babies born too soon lose the muffling effect of the womb before their ears can filter sound, White said.

“The sounds … come from all different directions and all different sources, and they’re often associated with unpleasant sensations for the baby,” White said.

NICUs are rife with noise pollution created by employees, equipment and excited family members.

“There’s no good way for the nurses or doctors to walk up to a parent, tap them on the shoulder and say, ‘You’re being too loud,’” Smith said. “That’s confrontational.”

The former car mechanic filled hours of spare time in the evenings and on weekends researching sound standards and building a system.

Smith, who tinkered in radio and TV electronics in high school, hired an acoustical engineer to help. They created a ceiling-mounted system of microphones that picked up sound and funneled data back to a large control panel.

“There was a lot of wiring, a lot of labor, a lot of programming,” he said.

St. Vincent paid around $100,000 for the system, which it installed about five years ago. Smith had no interest in shopping his invention to other hospitals because the work took so much time.

Then Riley Hospital, also in Indianapolis, called a few months later.

“They basically said, ‘I want that,’” he said.

The latest version of Sonicu can feed a stream of both sound and light data digitally to a computer. It offers the cone-shaped warning lights and can quickly dim the lighting in a room that gets too noisy. It also can make lighting mimic the sun by brightening toward noon and then fading, which also helps babies sleep well.

White, the neonatologist who helped write the national standards, said he knows of no other NICU monitoring system that sophisticated.

Smith has sold systems to a handful of Indiana hospitals, so far to good reviews. He said the systems can cost anywhere from $40,000 to $400,000, depending on each hospital’s needs.

The monitors have taught hospital staff to limit the number of groups making rounds at the same time because having more than one group in a room raises noise levels dramatically.

Most NICUs are filled with noise that can’t be helped, White said. Fans in the heating and ventilation system have to operate almost constantly, and the monitors need to beep.

The Sonicu system reins in the main noise maker that can be controlled.

“People think, ‘Oh gosh, I didn’t realize, I’ll go over here so I won’t have to talk so loud,’” White said. “It really is something that addresses the human factors that we do have some control over.”

Story from Washington Post

National Premmie Day 2008!

It has been announced that the next National Premmie Day is Friday 25th July 2008! This is very exciting news and this gives everyone plenty of time to organise their gorgeous premature babies and hold an event in their area.

National Premmie Day is a day to celebrate all of those amazing premature babies out there in Australia who have been through SO much. It is also a day to celebrate those precious babies who are in hospital fighting for their lives to be with their families. Having a premature baby is an amazing, scary, heart wrenching, exhausting experience and a very long road for many parents. To be able to celebrate these “little battlers” on a special day just for them is inspiring.

The members at L’il Aussie Prems will be holding events around Australia. You will be able to find a list of premmie day celebrations on the premforum in the coming months. There will also be a list of events also available on the Premmie Foundations website also in the coming months. If you are holding an event of your own be sure to join the premforum and let all the parents know the details so others can join you.

We are sure everyone will have a fantastic premmie day and lets all join in celebrating our beautiful children!

For further details please see www.prembaby.org.au

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Premature Baby & Music Therapy

I remember when Ronan was in NICU and the music therapist came to see us. He was around 6 weeks old when she started chatting about music therapy and how it helps to settle premature babies in stressful situations. I listened to what she had to say but told her to come back as i wanted to have a think about it. This was one of the first decisions i was going to have to make for my newborn baby who was lying in a tiny humidicrib trying to fight for his life, so this was not something i wanted to make a decision about on the spot.

After doing a little research at home i realised that music might actually be a good thing for Ronan after being born prematurely. It wasn’t until he was moved down a bay and was more stable that i decided to contact the music therapist. She came in with a set of speakers, put them in Ronan’s bed either side of his head and softly turned on the music. She had a questionaire sheet that she filled out and gave one to me also. We sat there for about 20mins whilst the music was playing just watching Ronan’s cues to see how he would react. At first i don’t think he knew what was happening and seemed a little frustrated. After about 5mins of the music playing he seemed to relax and stop squirming so we decided to leave it in his bed for the time being.

The music was to only be played when he was having his “cares” and just after a bath so he could relax as these two events always seemed to stress him out. Over time we started turning on the music every time we left for the night and he seemed to settle straight away which was music to our ears!

To this day he loves music. I could turn on the radio and straight away he will look at me and smile no matter what song is playing. Whenever i sing to him he tries to sing/babble back and he loves his ocean aquarian we have left in his cot. He is also a very relaxed and calm child but whether this relates all the way back to music therapy and helped to pave the way for his calm personality i guess i may never know.

Did your premature baby have music therapy whilst they were in the hospital? Do you believe music is something that all premature babies should have?

Pregnancy, Baby & Children’s Expo (premmie foundation)

With the generous support of the PBC EXPO the National Premmie Foundation are offering free tickets to everyone who wishes to attend the Adelaide Expo in 2008 – FREE!!

The next Expo is in Adelaide on the March 14th. To obtain your free ticket and to meet some of the foundations parents of premature babies please print out your free ticket HERE.

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www.prembaby.org.au

If music be the food for premature babies, play on

On first listen, a pacifier that plays music to your baby sounds like just another product to put in the “useless baby stuff” file along with the Diaper Genie, the Wipe Warmer, hard–soled shoes, and infant hairbrushes. But for some babies, the Pacifier-Activated-Lullaby or PAL apparently has real value.

Some babies, especially those born prematurely, have great difficulty sucking and swallowing, making feeding at the breast or bottle difficult or impossible. Traditionally, these babies have been said to have a “weak suck”; however, in most cases, it has little to do with strength. The problem is a co-ordination issue: until premature babies reach 34 weeks gestational age, their brains have not developed the ability to coordinate sucking and swallowing.

Other babies, especially those on a respirator, develop an “oral aversion” and resist having things put in their mouths. It is not difficult to imagine that being intubated, which involves having a plastic tube inserted in the mouth and down the windpipe allowing air into the lungs, might make babies weary of having things in their mouths.

When these infants are ready to start breast feeding, it can often take a while for them to get over their aversion or develop the coordination to suck and swallow properly. Since a baby’s weight gain, and therefore general health, is dependent on feeding, good breast or bottle skills are very important. Moreover, until a baby learns to breast or bottle feed, they must stay in the hospital getting their nutrition through a feeding tube.
Pacifier-Activated-Lullaby

“I wondered if babies could be taught to feed properly with the right reinforcement,” says Dr Jayne Standley, a music therapist working at Florida’s Children’s Hospital in Orlando. Dr. Standley spent ten years developing the musical pacifier and conducting studies on its ability to teach babies how to coordinate their suck and swallow skills. “Turns out they will suck in return for the music.” Standley says premature babies at 34 weeks gestational age, who would normally spend another six weeks developing in the womb, respond and learn from the device in minutes.

PAL works like this: a specially-wired pacifier is connected to a small computer that contains a CD of female-voiced lullabies. When sensors in the pacifier detect the baby sucking properly, it instantly activates the CD player rewarding the infant with music. If the baby stops sucking, the music shuts off after ten seconds. When the baby starts sucking again, the music comes back on. In this way, the babies learn to suck, a lesson that is retained when bottles and breasts are given between the PAL sessions.

So far, two studies have shown PAL’s effectiveness at improving feeding and the device was recently approved by the US Food and Drug Administration for use with newborns.

“The main study showed that most babies with PAL training were feeding at twice the rate they were before, and better than babies who did not use PAL,” says Amy Cermak, a music therapist working at Florida Hospital’s Neonatal Intensive Care Unit (NICU) in Orlando. “Even after the first treatment you can see a big change in the feeding ability.” Another study showed the PAL trained infants gained weight more quickly and were released from the NICU sooner than babies not using PAL.

“If it works on improving sucking, swallowing, and breathing skills, I could see [PAL] could have value for premature babies who have yet to develop that coordination,” says Debbie Stone, RN and lactation specialist at Toronto’s SickKids Hospital, adding that this was a “unique group of patients”. Stone says in utero, many babies often swallow amniotic fluid and suck on their own thumbs and have mastered these skills on their own at birth. “Under normal circumstances, soothers should not be used until breast feeding has been well established.”

Cermak notes that since the device can be easily programmed, it can help with several different types of feeding problems. “Some babies can suck well but have endurance problems. For these cases, we gradually decrease the sensitivity of the device.” In other words, over time the baby has to suck a little longer for the music to begin which builds up their strength. “Once you know what the goal for the baby is, you set the function keys. It’s not that hard to learn to use [PAL],” Cermak says.

Perhaps not surprisingly, PAL has also been used to help relieve pain in newborns. Music therapy has long been under study as means for relieving pain. Moreover, what clinicians call “non-nutritive sucking” has been shown to reduce signs of pain in newborns. “We have used it to decrease pain after surgery,” says Cermak. “These babies don’t have to suck so hard to trigger the music and the music plays for longer than for a feeding. They become more calm and more pacified.”

Other studies validating PAL are under review and should be published later this year. In the meantime, several other hospitals are beginning to implement PAL programs.

Article from aboutkidshealth