Anal Stenosis

Anal Stenosis... have you heard of it?  Mum Sheree shares her story.

“When my son was 5 weeks old, we noticed he always seemed uncomfortable. Sometimes his little face would go bright red and he would just wriggle with discomfort. He didn’t cry or scream - he just didn’t seem relaxed.

I took him to the doctor who said it was colic, and to try infants friend or gripe water. We bought everything we could find at the chemist and tried them all. He didn’t seem to be any different, so I took him to another doctor who again said it was colic and we would need to ride it out for his first three months. I absolutely couldn’t bare to think that my little man would have to be uncomfortable for at least another 7 weeks.

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When my son was born he had a small Exomphalos of his bladder. This is where a portion of the bladder protrudes the abdominal wall at the umbilical joint. He had this operated on the day after he was born. We had to visit his surgeon six weeks after the surgery to ensure everything was healing fine and to receive some tests results. I decided to take the opportunity to ask the surgeon if he had any advice on how to deal with colic. He asked me to describe the symptoms and when I explained that he just seemed uncomfortable all the time he asked to examine my sons bottom. I thought it strange but agreed. Upon the surgeon poking a finger into my sons bottom, a massive amount of poop exploded from my sons behind. I couldn’t believe it. The surgeon advised that my son had what is called anal stenosis. Anal stenosis is a narrowing of the anal canal, meaning that when my son pooped he wasn’t able to finish completely as it wouldn’t fit through his anal passage. He would have to have surgery.

The surgery was booked for two weeks time. I was so happy to finally have a solution to why my son always appeared uncomfortable, but I was frightened of the surgery. Any event where my little boy was put to sleep was not something I could be comfortable about. Having been 6.5 weeks premature he was still so small.

On the day of the surgery, I was a mess. My husband was trying to be manly and strong but he too was a little scared. We waited while he had the surgery, not speaking at all, as we were so nervous. The surgery was over within an hour and a half and our son was returned to us. He was emotional from being in a little pain and I think from being scared and not understanding what was happening. The surgery had gone well the surgeon assured us. It was such a relief to have it all over with.

I stayed the night with my son in the hospital and most of the night he just wanted to be held. By the next morning it was if nothing had happened and he was back to himself. 

Anal stenosis is not something I had ever heard of, but occurs 1 in every 5000 births and is common in boys.  My son is now 14 months old and so far he hasn’t had any issues to speak of. I feel so lucky to have had the appointment with the surgeon, as my son could have been in pain for some time as we continued to try different colic mixtures to no avail. If you feel there is something not right with your little one, follow your instincts.”

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Neonatal Unit Care Package Program Expansion

The Neonatal Unit Care Package program is expanding!

The Neonatal Unit Care Package program has been a flagship support program for Tiny Sparks WA, providing over 110 separate families with a Care Package at a difficult time in their lives. Funded entirely from public donations through Tiny Sparks WA fundraising or individual donations of whole Care Packages, these Care Packages have been well received by recipients and hospital staff, with wonderful feedback offered by recipients, a sample of which is below:

"Loved it at a time when nobody knows what to say or give as a gift"

"It made me feel very supported"

"It was an awesome gesture and really made my day"

"They are an amazing thing to receive, I will be donating"

We are now thrilled to announce a significant expansion of the Neonatal Unit Care Package program!

As of 1 July 2015 the distribution will increase to parents of babies born up to and including 1500g which will capture a significant number more families!

The expanded program has the potential to reach over twice the number of families in the next 12 months than the program has since its commencement in May 2014!

New Outfit Sizes

The original Neonatal Unit outfits that our industrious volunteers have been creating have been sized to approximately 1.2kg, therefore, the expanded Neonatal Unit Care Package program, which will reach babies born up to 1500g, requires a new size of outfit!

Newly posted on our Knitting and Sewing page are additional girls and boys patterns in 'up to 1.6kg' sizing. These have been listed under the 'low stock' heading as they are brand new - if you are able to assist in creating outfits in this new size and building our supplies we would be very grateful! 

Links to full instructions, pattern downloads and FAQs are all available from our Knitting and Sewing page.

We would like to thank all donors past, present and future for allowing the Neonatal Unit Care Package program to be a success and allowing its expansion! We would also like to extend a massive thank you to the key staff at KEMH who distribute all of the Care Packages and who are the crucial link between Tiny Sparks WA and the recipients.

Future Expansion

Yes, we want to keep expanding! Tiny Sparks WA acknowledges that it is not only premature babies that experience the Neonatal Unit, and as such, we are looking towards future expansions to other hospitals that will cater to the families of newly born babies requiring long term Neonatal Unit care due to illness or other reasons. Watch this space!

Full details of all Care Package programs are available on our Care Package page.

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Look at me now!

We are delighted to present you with a number of images taken for our 'Look at me now!' campaign.  This initiative is designed to provide a high impact, emotive image which shows in a very straightforward manner just how far the children have come since their stay in NICU/SCN.

These little super stars will be on display at most of our public events, their images will also be used on our website and in marketing materials.  A huge thank you to each of the families who participated.

Click to enlarge the images.

Mia born 23 weeks 4 days, 645g.  Came home on oxygen but is now a in pre-primary and thriving.

Twins Logan and Blake born at 26 weeks 2 days weighing 1070g and 945g.

Harley born 33 weeks, 1810g due to PE.

Hayley born 24 weeks 5 days, weighing 740g now a very happy kindy kid.

Aaleyah born 33 weeks 5 days, 2170g due to PE.

Aurora born 31 weeks 1 day, weighing 1410g due to HELLP syndrome.

Hayward born 27 weeks, 870g due to pre-eclampsia.

Mark born at term with stage 2-3 HIE, meconium aspiration and seizures.

Dakota born 32 weeks, 1700g, required full resuscitation at birth.

Noah born at term with a complete heart block requiring admission to NICU and fitting of a pacemaker.


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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)

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.

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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.

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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.

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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.

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