Good to the last drop

The bottom drawer of our freezer (we have an “upside-down” fridge) belongs to Talia. It’s full of plastic tubs containing ice-cube-sized portions of stewed fruit, mashed veg, pulverised chicken, flakes of fish in cheese sauce etc. Wedged in the middle of this oyster of solids was a little pearl – the last remaining bottle of my frozen expressed breast milk (EBM).

I’ve rambled at length about the ups and downs of milk production. It wasn’t easy, but it was worth it. I wanted to do more, but now I’m happy that I did as much as I could. If I had to do it all over again, I would. So what’s the story with this bottle of EBM? Talia stopped breastfeeding exclusively last October, and ceased completely at the end of January. It’s now the end of March. This bottle of liquid gold was dated 21/6/07 – the day before Talia came home from hospital. This bottle of milk has reigned, happy and glorious, over the bottom drawer of the freezer for NINE months, as one by one all the other bottles (older) and baggies (younger) of EBM were defrosted and used up. (Don’t worry, my freezer is cold enough that it was safe to keep it longer than the usually recommended three months). This bottle was a testament to my hours of expressing but also a life-line which I had clung to for months in case of emergency, but which was no longer needed now that Talia is healthy and happy with formula and solids.

So last Thursday, a week after Talia’s first birthday, I liberated this vintage bottle from its cryogenic home and defrosted it. On Saturday, Talia’s bottles were half formula and half EBM, the final instalment of my first gift to her. It doesn’t usually happen, but she completely finished every bottle. That night we both went to sleep satisfied.

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

One year later – remembering Talia’s birth

I’ve been feeling anxious and emotional all day, and as the hours went by and it came closer to the anniversary of Talia’s birth the feeling just became stronger until here I am now, mid-evening, sitting on the sofa with a box of tissues and wiping away the tears.

This time last year I was in a shared ward with other expectant mothers. I’d had an ultrasound in the late afternoon which showed my baby’s feet clearly pressing down on my bulging, partly dilated cervix. As a result I’d been told to go immediately back to bed, keep my feet up, and not get up unless I needed to use the bathroom. My hopes of going home in a day or two were dashed, and I anticipated a long, boring period of bedrest waiting for “Tic-Tac” to grow and hopefully arrive close to her due date.

My lower abdomen was sore, and I mentioned it to every nurse who came to check on me, but each time they felt me they said it was still soft and it was nothing to worry about. I remember I was in tears that evening too, because I’d asked if they would call my mother if anything happened (like me going into labour) and they said they couldn’t guarantee it. I felt lonely and miserable. Around 11pm I felt I was unlikely to sleep with the pain in my abdomen and rang to ask for some panadol. The nurse who arrived to see what I wanted felt my stomach and immediately called for someone to take me down to a labour ward. As they wheeled me out I was begging them to call my mother.

Down in the labour ward I was in a big room by myself. I met a funky young midwife named Xena and was introduced to a handsome young surgeon whose name I forget, but in chatting we discovered we had both gone on student exchange. My labour pains were intensifying and they offered me morphine. Not knowing how long I would be in labour, and being a total wimp, I accepted it. In retrospect it was the only thing I regret, because I was a zombie for the following 24 hours.

Not knowing if the nurses had called or not, I asked Xena if she would contact my mother. However no sooner had she started to leave the room than in came mum. A nurse had called and left a message when she was asleep and didn’t answer the phone quickly enough. However the number they said to call back on was a wrong number, so mum just assumed the worst and got straight into the car and drove immediately to the hospital and buzzed security to be let in. It was around midnight. I remember holding mum’s hand really, really tightly as we waited to see what would happen.

It must have been close to 2am when the surgeon decided that it was too risky to let me continue labouring. With Talia in the footling breech position, if my waters broke her body might easily slip out leaving her head stuck, and there was a real risk of umbilical cord prolapse – which could lead to brain damage or stillbirth. I don’t recall the exact sequence of events following that, but I was moved to an operating theatre. I can recall going through a series of swinging doors, like you see at the start of medical dramas on TV. I met a couple of friendly anaesthetists. One was almost a stand-up comedian, he just had one joke after another as he supervised his more junior colleague painting my back with a cold liquid before he put in the epidural. By this stage the morphine had taken effect and I was not in so much pain, but everything felt not-quite-real, as if I was watching it all happening to somebody else. Sleep deprivation may have also been to blame.

I met up with my mother again in the operating theatre. The room seemed to be full of people – two surgeons, the midwife, the anaesthetists, three people from the NICU. I remember that I could feel nothing from the chest down, but from the chest up everything was shaking uncontrollably, as if I was cold although I don’t recall being cold. I didn’t even feel quite so frightened by that stage, just numb and vaguely annoyed that I couldn’t stop my arms from wobbling like jellies. I would have liked to actually see what they were doing but perhaps it was better not to. Mum could see some of the action reflected in the big silver light over the operating table as she held my hand again. She told me about the big blood clot which was behind the placenta, and possibly the cause of my premature labour.

I had no idea how long it would take but was still surprised at how quickly everything happened. They started at 3am. Within minutes Talia was out and being bubble-wrapped by the NICU team. It took a little longer to stitch me back up again, but even so it wasn’t long. A NICU person held a pathetic wrinkly red-faced bundle near me and I reached up to brush a finger on her forehead before they whisked her away. Mum stayed with me in recovery, but I only recall recovering long enough to finally fall asleep.

When I woke up it was morning, and the morphine was like a haze. I was in a private room, and someone had brought me a polaroid picture of my baby. I remember looking at the photo and feeling empty and slightly frightened because I didn’t feel any emotional connection, no rush of love, only blankness as if I was looking at a stranger’s baby. At the same time I felt physically empty too, because Talia had always been a wriggly baby who kicked regularly and I felt barren without the movement inside me.

The rest of the day was a blur. I recall very little, other than speaking to my stunned husband on the phone from Singapore, and my mother arriving with a bunch of striking blue orchids. In the evening I agreed for Talia to take part in a clinical trial, and someone showed me how to use a breastpump.

So much has taken place since then.

Today I made a cake, blew up balloons, got ready for the big day tomorrow. My husband is in Singapore again and it all seems a bit unreal. To celebrate the last few hours of her last day of being zero, I packed a bottle (of milk for Talia) and bought some takeaway and we sat in the park in the twilight and watched the ducks and the dog-walkers together. It was incredibly peaceful and such a beautiful contrast to the same night last year.

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?