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

premature baby, premmie, babies, premature labour, premature birth

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

Young Shaeley Moody brings dream to life for Tracy, 40

SHAELEY Moody is worth every second of her proud mum’s agonising wait.

After 18 years of trying to have a baby, encompassing four failed pregnancies and a horrific car accident, Tracy Moody, 40, still can’t believe it when she looks at her tiny, fragile daughter.

Shaeley was born 15 weeks premature and weighing less than 700g last Thursday. premature baby, born early, mercy hospital, premmie, born too soon

“I still can’t fathom that I have had her, having waited so many long years. She is so precious. She is like a miracle for me,” her mother said.

“She is perfect. She is all there — 10 fingers and 10 toes, and she is all mine.

“It has always been my dream of having a child, because I love kids to death.

“For 18 years, it was hard to keep faith, but if you have a dream you have to follow it and not give up. So that is what I did, and she is the end result: my precious miracle.”

Yesterday Shaeley’s underdeveloped lungs began working for the first time.

Staff in the Mercy Hospital for Women’s neonatal intensive care unit took her off a ventilator and put her on a continuous airway pressure machine to boost breathing.

However there will be plenty more nervous times over the next three months as Shaeley battles complications from her early birth.

Fighting for a child is nothing new to Ms Moody. By 1997, she had already suffered three miscarriages and an ectopic pregnancy.

Two days before Christmas 1997, as she was organising her first round of IVF, she suffered severe injuries to her left leg, lower back, neck and right shoulder in a car crash.

As she learnt to live with permanent disabilities, she was told she could never become pregnant. But for the next 11 years she tried, never giving up hope.

She said she almost collapsed on learning she had become pregnant naturally, and accidentally, last year.

However from the first day, there were complications. And her disabilities meant she could not give birth naturally; an emergency caesarean was done after six days of a dangerously early labour.

“It took me about three months to realise I was pregnant, and then all of a sudden she was here. She hasn’t given me much to time comprehend conceiving her,” Ms Moody said.

“It was touch and go, so I just thank God for every day she is here. And she seems to be getting stronger and stronger. It’s prayers every day and fingers crossed.”

The Mercy has organised Melbourne accommodation for the Alexandra resident so mother and daughter can spend every day together.

Ms Moody said she suffers panic attacks every night when she leaves the hospital.

“Emotionally, it just drains you,” she said.

“If you want something bad enough, you will wait and you will keep the dream alive. And that is what I have done.”

Article & photo from: Herald Sun

Premature Baby Dolls

Weebundles Hand Made Preemie Dolls

I have been speaking with the lady who makes the premature baby (preemie dolls) and what a lovely yet busy lady she is. Her preemie dolls are highly sought after not only in the USA but also here in Australia.

Weebundles Preemie dolls are made from 100% polyester fabric in five color choices. They have a fleece inner liner and are stuffed with a combination of all new stuffing and doll pellets (both metal and plastic). premature baby doll, premmie, preemie, premature babies, angels, support

• The joints are made with metal buttons.

• Dolls are made to the weight of your premature babies gestation or made to your premature babies real weight

• Faces can be painted, sculpted or left blank upon request.

• All dolls come with a hat and preemie diaper.

I have many momentos from Ronans stay in NICU from oxygen masks, premature baby nappies (huggies), his little CPAP beanie, milk bottles, expressing equipment, little sensor monitors he wore, my mothers day card made from the NICU nurses, ink pad and photos galore but i will never get my premmie back (trust me i don’t want another premmie), but having one of these dolls made to the size of what Ronan was when born would just complete the memories i have of him.

After having a premature baby, over the years the memories can start to fade and your memories of their size completely goes out the window especially if you have seen full term babies since then. A preemie doll would help you to keep those memories in tact which is why i cannot wait to have one made to size.

www.weebundles.com

(ships to Australia)

Premature baby Madeleine comes home for Christmas

THE Royal Children’s Hospital has given Stephanie and Michael Funke the best possible Christmas present.

Five-month-old Madeleine has made it out of hospital for the first time in her short life to spend Christmas with her family in Minyip.

Born a dangerous 14 weeks premature and rushed to Melbourne, Madeleine then suffered a perforated bowel.

Surgeons had to operate in the Royal Children’s neonatal unit because she was too unstable to be moved to an operating theatre.

Doctors also prepared her parents for the worst — which made Madeleine’s release from hospital even more special.

“Having Madeleine home after everything we have gone through is unreal,” Mrs Funke said.

“There were a few times we thought we’d never see this day. We cried when we went into hospital and we cried when we came out.”

When complications led to Madeleine’s extreme early arrival, Mr and Mrs Funke had to endure a harrowing 45-minute drive to the Horsham hospital. premature baby, baby, premmie, support, hospital, premature babies

The birth was followed by a trip to the Mercy Hospital for Women with the Neonatal Emergency Transport Service.

Their return home was far less dramatic and follow-up tests at the Royal Children’s this month have given Madeleine a clean bill of health.

And that has given the Funkes plenty of Christmas cheer — especially sister Caitlin, 3.

“Caitlin absolutely devotes her whole time to Madeleine,” Mrs Funke said.

“Caitlin is already saying when I grow up I want to be a nurse after all that she has seen in the hospital.

“The nurses were fantastic and let her do some of the bandages and rubbing in creams.” Grant McArthur

Article & photo from: Herald Sun

Bonding with my (micro) premmie Part 1

On my first day of full time, solo parenting I managed to clip the tip off of Miss E’s big toe while trying to trim her toenails—I’ve not touched baby nail clippers since that day. I think that was one of the first times I’d ever really felt like her mother. I’d made, what seemed like, this huge mistake and there wasn’t a nurse hovering over my shoulder to fix it up for me.

If bonding with a healthy, full term baby is difficult than bonding with a premmie must be a whole different ball game. This is the story of my attempts at bonding with Miss E while in the NICU.

Miss E was born via emergency caesarean due to severe preeclampsia. I’ve said before that after she was born they pulled her resuscitaire up beside me to show me her face. What I didn’t say was that I really didn’t care. I don’t know if it was a result of the drugs or an emotional response, but it’s a great source of shame, sadness and disappointment for me. I never expected to react like that to the first time I saw my own baby. After that she was whisked away and I didn’t see her again, while lucid, until two days later.

I barely remember seeing her that time, even though the drugs had worn off and the addled knowledge that I was going to die mingled with a desperate need for sleep had gone away. Two days later I sat by her Perspex box in a wheelchair because I still couldn’t get my legs to work, swallowing back tears as Miss E’s nurse uncovered her isolette and lowered it so I could see in.

There, in a nest of wires and tubes, was my little girl and I felt nothing but fear. How do you bond with a creature that looks nothing like any baby you’d ever seen? A baby you’re afraid to touch because her skin is so fragile that it tears when she has her diaper changed and you can’t bear to cause her more pain. Even if you wanted to touch you can barely see enough skin to make contact.

Beyond just the physical limitations I was still dealing with the loss of my pregnancy and the birth I so desperately wanted. Not to mention shock. I think I lived in a bubble of shock and fear for two weeks. Afraid to touch or even talk to her with the portholes open in case I was sick and didn’t know. My mantra became “you’ll never forgive yourself if she dies because of you”. I don’t know how much time I spent making up excuses to not go to see her. I would have done almost anything to stay away from that horrible place.

The next four weeks were spent in a blur of expressing breast milk, containment holding and reading fairytales. I thought I was bonding. At the very least I wasn’t avoiding her.

Part 2 to come.