Online Community for High-Risk Pregnancies

Today we launched an online Facebook Group 'Tiny Sparks WA High Risk Pregnancy Support Group'. The aim of the group is to provide a network of parents who have been or are currently facing a high-risk pregnancy. Families can share information, ask questions, be a listening post, and provide general peer support in what is a very lonely, scary time.

We hope you will join our community if you have been or are currently facing a high-risk pregnancy. Note that membership of this group is subject to approval by one of the Administrators, a Tiny Sparks WA volunteer. If you are not added by an existing member, you will receive a private message requesting you to provide background as to why you wish to join. Please check your 'Other Messages' folder and respond as soon as is practicable.

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Happy Father's Day 2014!

Today we celebrate Father's Day and recognise all those Dad's who are currently watching their baby in NICU or SCN, those Dad's who only have memories of their baby, those Dad's who provide and care for their families, those Dad's who get up early for their children's sport, those Dad's that get a phone call from their 'big babies' who have grown up. Happy Father's Day!!!

A small gift will be waiting for Dad's at NICU's and SCN's at King Edward Memorial Hospital, Princess Margaret Hospital 6B, St John of God Subiaco and Rockingham Hospital. We hope that this gift lets them know that we and all of our community are thinking of them in what is an extremely difficult time.

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City to Surf 2014

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Charlie's Story

Guest blog post.

My name is Eloise Thomas and I live in Perth WA. My ex husband and I found out that we were expecting our first baby in November 2007, just after our first wedding anniversary. We were absolutely thrilled and excitedly anticipated his due date of the 27th July. Throughout my pregnancy I had early pre-eclampsia, very high blood pressure and polyhydramnios. I was hospitalised for the final four weeks of the pregnancy on and off and had two amnio-reductions as I was producing way too much amniotic fluid and there was a chance that bub was having a “blockage of some sort”. We were told that “something was wrong”, but no one could figure out exactly what was wrong because the ultrasounds were showing a healthy baby who was growing well and not showing any signs of distress. I had a CTG every day for the final fortnight and bub wasn’t reaching the levels that were required, so I was booked in to be induced a week later on a Thursday.

Charles William Thomas (Charlie) was born just before 6am that morning by emergency c-section. My waters broke naturally at 2am and there was so much amniotic fluid, I felt like my organs were falling out. It was frightening to see that much fluid coming out of oneself (too much information, sorry). I think I even apologised to the midwives, who found that rather amusing as “it is what we do everyday” was their answer. I will never forget seeing our beautiful tiny little boy for the first time. He was brought up to my face so that I could see him and rub cheeks with him, but before I knew it he was rushed out of the room and the rest is rather foggy.

My ex-husband was absolutely amazing and went through so much while I was ‘fuzzy’ from the epidural and all of the other medication that I was on. All I remember from that day is being wheeled into recovery and immediately calling my parents and sister to share the news and to SMS every other person in my phone to tell them our joyous news. I had no idea what was ahead. I remember waking up a few hours later in my private hospital room when Charlie was brought in. He was attached to all sorts of different tubes, was lying on his stomach and inside a huge humidi-crib. He had at least five people around him, two of whom were Doctor’s, and they were rushing him straight to Princess Margaret Hospital where he required emergency surgery. I found out later that this was my opportunity to say ‘goodbye’ to him if the surgery was not to be successful. I don’t remember much of this, only what my ex-husband told me.

I have never been a Mum before and didn’t know what ‘normally’ happened after you have a baby.....did your baby stay with you? I’m sure that is what happened. Are all babies taken away for a while? I did know that something wasn’t right from the beginning but everyone was keeping me informed on a ‘need to know’ basis, rather than provided me with all of the information that perhaps I wasn’t ready to receive right there and then.

Charlie born full term with Tracheo Oesophageal Fistula (TOF)

Our Charlie was born a TOF baby. He has Tracheo Oesophageal Fistula, where his trachea and oesophagus were joined and leading to his lungs, so he had no tube going to his stomach and he could not swallow (this explained the excess amniotic fluid) and he had breathing difficulties. My little angel was rushed to the children’s hospital only a few hours after he was born. I saw him four days later. He was kept in the Neonatal Intensive Care Unit at PMH for his first ten days and we will never forget that time. A frightening time where we had no one there to support us and let us know that yes, our journey was a difficult one and that it was normal for us to be feeling like we were drowning and so completely helpless. It was a very lonely feeling for the both of us.

Charlie was tube fed for the first ten days of his life, so feeding was a huge obstacle that took a long time and getting him used to bottle feeding was a huge challenge. Breast feeding was too distressing for the both of us, so after much painful deliberation, I chose to put him on formula. He also had severe reflux, so required a thickened feed.  I begged my OB to discharge me from the hospital ASAP and we went to live in the parents quarters at the NICU to be close to our boy. I was called into the NICU every three hours to feed him, express my milk and then return to the parents wing to catch up on some sleep, all while in agony due to getting an infection in my caesarian scar. My body didn’t respond well to anything at this time. Every day I could watch him, touch him but could not hold him. He had so many tubes attached to him, it took one of the NICU nurses about 20 minutes just to change his nappy. He was so small and sickly looking. It was very surreal.

After 6 days his wires were slowly coming off, we were trying to establish feeding and we were able to hold him for the first time. What an occasion that was. One that I will never forget. After the 10th day, Charlie was transferred back to the original hospital where I had him (SJOG Subiaco) where he remained in the Special Care Nursery under close watch until we could establish feeding. I hired the Mothercraft room, right across from the SCN where I learned how to look after him and feed him, under the close watch and assistance of the amazing staff there. And after three weeks, we were allowed to go home.

From when we got home to when Charlie was five months old, we nearly lost him nine times due to ‘death spells’ where his trachea would collapse (due to feeding/crying and the normal things babies do). I was too afraid to put him for sleeps in his bassinet, so he would sleep on my chest during the day and we had him attached to a monitor for him to sleep in our room during the night. We couldn’t let him cry, otherwise he’d get distressed and have an ‘episode’ where he would struggle for breath and go blue. We had him attached to the heart monitor then at all times and had oxygen tanks on standby in case he required some help. We had eight hospital stays in this time, so that his medical team could monitor him. I couldn’t count the number of doctors, nurses, specialists etc that we saw and each was equally surprised when they saw his hospital ‘portfolio’ because it seemed to always be the thickest in the pile for a child so young. 

Charlie was put onto reflux medication and his feeds were thickened more, which helped a lot. He had regular appointments every month so that his medical team could keep a close eye on him and we still have yearly appointments with his team and he turns 6 next month. He has had appointments for surgical, neonatal general, monitoring, speech pathology, audiology, palette (he has a sub mucus cleft palate and a double uvula), physiotherapist and respiratory. He only had two dilatations (incredibly fortunate for a TOF kid), where they insert a rubber knitting-needle type object, dipped in oil and put down his throat right down into his tummy to ensure that the oesophagus remains stretched and open, to prevent any obstructions to add to his swallowing difficulties.

He wasn’t able to eat normal foods for a long time as his oesophagus was not as ‘coordinated’ as it should be, so he was on mashed up food for a long time and I may have done a happy dance in Coles when he was able to eat his first Milk Arrowroot bicky at 2 without choking. And we have been on a steady road ever since. His last episode was two years ago and Charlie is now a robust, strong and fast growing little boy who turns 6 next month. He has had no other health issues, is eating me out of house and home and loves school. After such a rough start, he has really shown us how amazing he is and we are so incredibly proud of him.

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Top Tips for Photographing your Baby in NICU

For many the NICU is a completely surreal world.  You feel overwhelmed by all of the machines, wires, probes, noise and how big it is with SO many babies.  This however is YOUR baby's story and for many it will be important to try and capture all that is going on so that you can share it with others who are unable to visit and also so that you have a record to share with your child when they grow up.

The NICU is a tough environment to take nice pictures.  Hopefully we can share a few tips with you to make those memories a little more polished.

Know Your Camera

It doesn’t matter if it’s a point and shoot, your iPhone or a professional DSLR.  Know how to:

• Turn it on and off
• Focus it properly, for most cameras that is pushing the shutter button halfway, for your iPhone holding it still until the yellow square appears and locks
• Turn the flash off.  Keep your flash turned off whilst photographing in the NICU regardless of the type of camera you have.

If your not an experienced photographer keep your camera on automatic settings for both exposure and focusing.  If you have more experience you should know to set your white balance, turn your ISO up and how to meter and choose the right depth of field for the shot you are taking.

Remember to hold your camera still whilst focusing, as the image is taken and for a moment after.  Consider bracing yourself against a chair, wall or table if you are a bit shaky.

*Note - some NICU's will not allow mobile phone use, other's require airplane mode.

Video

Almost all cameras and phones now have video capabilities.  Along with still images you may like to capture short clips of your baby moving and the sounds of the NICU.  Similar principles apply to taking video, know how your device works, keep as still as possible, move slowly, zoom slowly.

Keep It Simple

When looking to take your photo consider if there are things in the image that could be removed to keep the image simple, or consider if you are able to move yourself to change the angle of the image to remove some of those things.  Sometimes getting up high, down low or simply moving left of right will dramatically change the outcome of your photo.  The plastic from the isolettes will create some glare, again moving and shifting your angle can help to minimise or eliminate that.

As baby gets bigger and you are able to freely pick them up and move about within the nursery consider some images by a nearby window which will create some beautiful soft light and provide a change of background scenery.

Capture the Environment

Your baby may be spending days, weeks or months in the NICU.  Make sure you step back and take an image of their bay from a couple of different angles which includes all of their machines and monitors.  If they move bays or nurseries be sure to do the same again.  One day your child might like to know which machine was which and what they all did.  Even if you don’t know the answers a photo can help them understand.

Milestones & Details

As your baby moves through the NICU and reaches milestones like 1kg, 2kg, moving from an isolette to an open cot, first cuddle, first breastfeed etc make sure you are taking photographs to mark the occasion, these moments will never be firsts again.  Treatments and monitors change all the time in the NICU, take images that capture the details eg : blood pressure being taken, sunglasses for phototherapy lights, when they are finally IV free, tiny fingers and toes etc, remember this is your baby's story.

A sense of scale

Babies in the NICU are all different shapes and sizes, many are very, very small  Use your partners hand, a wedding band, a coin or a toy as a size comparison for your baby.  As they get bigger take further images so you can see just how far they have come.  As your baby will no doubt have restricted visitation no one will truly understand just how small your baby is unless you can provide that sense of scale.

Routine

Participating in baby's cares is one of the few things that parents can do for their baby whilst in NICU.  Changing that first nappy, massaging their head when their CPAP hat is off, giving them a bath when they are bigger.  These things are generally part of baby's overall daily routine.  Time your visits with your partner so that you can take turns in the cares whilst the other one captures the moment.  Don’t forget the quiet moments too.  Sometimes you will just sit with your hand on bub, sit quietly and read to them, or might hold them skin to skin (kangaroo care) these moments are just as important to immortalise and can create really powerful images for you to look back on.  If your partner isn’t available to take an image for you don’t be shy about asking the nurses, they will be delighted.  It’s important for you to be in the photos too.

Home Time

Finally going home is almost an equally overwhelming feeling as finding yourself in the NICU in the beginning.  Don’t get caught up and forget to document this momentous occasion!  Collect up all of baby's NICU mementos, show them in their car seat, at the doors to the NICU, at the doors to the hospital, in the car, at home in their bed and being welcomed properly into your family.

Once you have all of your images you may consider putting together an album or scrapbook which tells baby's story.  There are many ‘drag and drop’ sties which make this very easy to do.  For our readers we have managed to secure a discount from Blurb valid until 23 June.  When checking out enter 15%OFF (save 15% off on orders $50+*), 25%OFF (save 25% off on orders $100+**) or 35%OFF (save 35% off on orders $250+***).  Please see conditions at the end of this post.

A couple of things to note.  Many hospitals don’t like for their staff to be photographed so always check with baby's nurse that they are ok with being in your image.  Also always check with the nursing staff before moving baby or anything in or around baby.

All images appearing in this article were taken with a consumer point and shoot camera on automatic.

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*Offer valid through June 23, 2014 (11:59 p.m. local time). Valid for printed books only. A 15% discount is applied to your print book product total with a minimum purchase of USD $50, CAD $50, AUD $50, EUR €40 or GBP £35. Maximum discount is USD $150, CAD $150, AUD $150, EUR €120 or GBP £100 off product total. This offer is good for one-time use, and cannot be combined with volume discounts, other promotional codes, gift cards, or used for adjustments on previous orders.

**Offer valid through June 23, 2014 (11:59 p.m. local time). Valid for printed books only. A 25% discount is applied to your product total with a minimum purchase of USD $100, CAD $100, AUD $100, EUR €75 or GBP £55. Maximum discount is USD $150, CAD $150, AUD $150, EUR €120 or GBP £100 off product total. This offer is good for one-time use, and cannot be combined with volume discounts, other promotional codes, gift cards, or used for adjustments on previous orders.

***Offer valid through June 23, 2014 (11:59 p.m. local time). Valid for printed books only. A 35% discount is applied to your product total with a minimum purchase of USD $250, CAD $250, AUD $250, EUR €200 or GBP £150. Maximum discount is USD $150, CAD $150, AUD $150, EUR €120 or GBP £100 off product total. This offer is good for one-time use, and cannot be combined with volume discounts, other promotional codes, gift cards, or used for adjustments on previous orders.

World Blood Donor Day

Today is World Blood Donor Day and we'd like to take the opportunity to thank each and every person who has ever made a blood donation.  Did you know that 1 in 3 Australians will need blood or blood products in their lifetime?  We like to offer a huge round of applause to the Red Cross and the wonderful way that they run their blood donor and bank service.

Each year more than 3,000 babies are admitted to NICU/SCN in Western Australia.  Many of these babies go on to require blood transfusions whilst they are in hospital.  Premature babies have a low blood volume, some are born with less than 80ml of their own blood.  Each day blood is taken from them to test them for illness and to ensure that their blood gas levels are appropriate.  Unfortunately taking their blood for testing and their inability to make their own blood means that there is a deficit which makes them sick.  There comes a critical time when a blood transfusion may be necessary.  Many of these babies receive more than one transfusion during their NICU/SCN stay.

Some sick full term babies are also recipients of blood or blood products.  The reason for this varies from conditions such as rhesus disease, where a baby's entire blood volume may need to be replaced, to surgical procedures where babies need their blood volume topped up.

Obviously there is also a wider community need for blood and blood products.  People who are undergoing cancer treatment often need blood, those involved in accidents where there is significant blood loss also require blood.  Surgical patients of all ages may require blood.  There are many, many more reasons why people may require blood or blood products.

If you have never previously donated blood, or maybe it's been a while since your last donation, we would encourage you to phone the Red Cross on 13 14 95 and book a time to make a difference.  One blood donation can save up to three lives!

If you or your child has received blood or blood products we would love to hear from you.  Please leave us a comment.

Many thanks to Claire D for allowing us to share images of her daughter receiving a transfusion in NICU.