Solomon's Story

Guest blogger Manda T writes of her son Solomon's Story with Congenital Diaphragmatic Hernia (CDH). See bottom of blog for a definition of CDH.

When my son was born he wasn't that lovely shade of pink. He was grey. He didn't cry. He was lifeless. And the birth suite was so quiet, you could hear a pin drop. He was born on 23rd June 2014 with Congenital Diaphragmatic Hernia (CDH). 

Finding out at our 20 week anatomy scan was a huge shock. Solomon was our 4th baby. Our previous three, all girls, were born perfectly healthy. To this day, I'm convinced his condition is my fault. Mothers guilt is an awful thing. 

An hour after Solomon was born

Glenn's daughters meeting Solomon when we were told he was on maximum support

The morning after Solomon was born his Dr stopped us in the corridor to his bed. The words "end of the line" and "maximum support" are all I can remember. Or choose to remember from that conversation. He was on the high frequency oscillator, nitric and many different medications. He didn't respond well to being touched. Cares sent him into a tizzy. The numbers went down and up, up and down. Days passed. He was no closer to being transferred for surgery. My husband and I stayed in the parents room in the NICU. Only the parents of the sickest babies stay there. 

On day 7 his doctor took a chance and switched him to the conventional ventilator and it worked! Day 8 saw him be transferred to the children's hospital. Day 10 he had his repair. 7 or so hours went by so slowly. I caught up on sleep. My husband paced the room. Thankfully all went well. His hole was so large it required a patch to close. 

The rest of our journey seems like a blur. Though at the time I just couldn't wait to have our son home. He fought so so hard to be here and stay. He is my absolute hero.

Solomon was 16 days old when he started on tube feeds. 

He was 17 days old when they switched him from the conventional ventilator to CPAP. That was also the first time we heard him cry. 

At 18 days old, we had our first cuddles. 

After 22 days, Solomon was switched to hi flow oxygen

On day 25, Solomon was transferred back to the hospital he was born at. On the way, the transfer team stopped in the corridor so he could meet his sisters for the first time. 

Being transferred to PMH

Solomon after surgery

Cuddles with Mum

Cuddles with Dad

Day 29 saw Solomon taken off all breathing support. For the first time in his life, he was breathing unassisted. 

One tube to go!

The days following were filled with trying to get him to take full bottle feeds. Easier said than done. Solomon had severe reflux and would vomit at every feed. Eventually medication helped. He started gaining weight and taking full feeds. 

On August 15th 2014, day 53, my 31st birthday, Solomon came home. He will forever be the best birthday present I will ever receive. 

In two weeks Solomon will be celebrating his first birthday. I don't know how I'm going to handle that. Feelings have a funny way of creeping up on you. I have days where I feel fantastic and days where I want to crawl into a ball and cry. I still wonder why me? Why us? Why our baby? 

First family photo - Image Credit: Samantha May Photography

Once you're the parent of a CDH baby, your life is never the same. You watch your baby fight for their lives. Literally. While the scar my son bears shows the hell he's been through, I have no physical scars from my CDH journey. Though my emotional scars are cut just as deep. You cannot go through this experience unscathed. And you won't come out the other side the same. But with the love and support from our CDH Australia family, I know I'm not alone. And that makes it just that little bit better.

Definition of CDH - Source: CDH Australia

The diaphragm is a muscle that helps us to breathe and separates the chest cavity from the abdominal cavity. It develops in early foetal life. Congenital diaphragmatic hernia is the absence of the diaphragm or, more commonly, the presence of a defect in the diaphragm. It can occur on either the left or the right side but is most common on the left (80%).

As there is a defect in the diaphragm, the abdominal contents including the stomach, intestine, liver and spleen can be displaced into the chest cavity. CDH is usually an isolated condition, although other congenital anomalies, most commonly cardiac, may be associated and influence the prognosis.

Since these organs are in the chest cavity and not where they are supposed to be, the lungs have insufficient space to grow normally and are therefore smaller than they should be. The determinants of survival include the degree of underdevelopment/undergrowth of the lung and the supplying blood vessels with associated pulmonary hypertension, as well as the gestation of the baby.

"You won't remember, But I will....."

Introducing new regular blogger and Tiny Sparks WA Volunteer April Ratajczak

My name is April Ratajczak and thanks for taking time to read my blog entry today.  I am the mum to an ex 29+6 week premature daughter, Emily, who was born prematurely due to severe pre-eclampsia.  Emily spent 11 weeks and 5 days in the King Edward Memorial Hospital NICU.  Which means my husband, Wayne, and I spent 11 weeks and 5 days in the NICU as well.   From the moment I was hospitalised on Friday 6 June, 2014, we entered a new life we called “limbo”, especially after she was born.  I was no longer pregnant, yet at home we had an empty cot.  An empty cot which haunted me every single day that I walked by the room.  “Be thankful she is alive and doing ok!” I would try to tell myself, but there were still days that empty cot just was more than I could bear. This past Saturday marked one year since that date.  Once Emily came home and  life settled down (or as “settled” as it could ever be with a baby – prematurely born or not!) I felt the need to “pay it forward”.  Tiny Sparks and its merger company, Parents of Prems had been a massive support network to Wayne and myself during our journey so I felt like it was a no brainer of what I would do.  I would volunteer with Tiny Sparks!

When I made the decision to volunteer with Tiny Sparks, I was asked what I wanted to do.  I excitedly answered “ANYTHING!!  (Except sewing.... it’s not pretty when I attempt it!).   After the conversation with Michelle, the contributions I walked away with are Social Media two days a week and blogging about once a month.  I love to write so I was really excited about the blogging part!

Until it came time to write.  The first hurdle I faced was Emily’s first winter cold (have to “love” chronic lung!)  The second hurdle I had was a form of writer's block. I said my first blog entry would be my birth story.   Perhaps “writer’s block” isn't the right terminology.  The words are there, but putting the words onto paper is not something I have found easy to do.  Discuss and talk about it in person with basically anyone, no problems.  Writing it out seems to bring back a lot more emotions and memories and is so much harder.  So bare with me.  It’s “in progress” and I will share it... soon.  I hope.

In the meantime, I came across an article recently that made me smile, but also made me think of all the points not mentioned for parents of prems or infants who spend time in the NICU or SCN.  The article is called “You won’t remember, but I will”.  Perhaps you have seen this in your feed on Facebook.   If you would like to read it, the link is:

http://www.huffingtonpost.com/jessica-dimas/you-wont-remember-but-i-w_b_6357936.html

A lot of the points in the article are spot on... once we brought Emily home and started living our “normal” (or version of the word) life.  A couple though could not be more far from what some of us experience.  So I thought I would not delay the posting of my first blog any longer and list some of the things that for me, Emily won’t remember, but I will.

You won't remember the day you were born and the pure panic I had laying on the theatre table watching the doctors work on you.  It wasn't until one of the Neonatologists looked at me and gave a thumbs up that I knew you had survived delivery.  I can still see his face and anytime I saw him in the NICU or even now when we return for any of our appointments I instantly flash back to that very moment.   

You won’t remember the day I finally got to see you.  You were two days old.  As your daddy led the way to the back of the NICU, I was overwhelmed with the number of incubators and babies in the nursery.  Finally in the back corner, there you were.  Tiny but perfect.  I felt so many emotions, and despite being a nurse for many, many years, I never realised one could actually experience that much at once.  Love.  Pride.  Guilt.  Fear.  Oh, did I mention Guilt?  Let’s discuss that one next.

You won't remember that I felt so much guilt the first time I saw you laying in the incubator.  You weren't supposed to be out in the world yet.  All of these cords and monitors and wires would be unnecessary had my body cooperated, I thought.  I wanted to say “I'm sorry”, and while the words never came out of my mouth that day, they were in my mind and heart every single day for your entire NICU stay.

You won't remember the first time I held you after several days of waiting to hear the words “stable enough”.  It was a moment full of so many emotions at once, but in that daily cuddle, I found so much strength.  Those daily cuddles kept me going.

You won’t remember my visits to you at night while I was still upstairs on the ward.  I would often wake up to the sounds of the babies in the next room crying from the full term babies who were healthy and able to stay in the room with their mum’s.   Nurses in the NICU would kindly tell me I should get some sleep, but I knew I didn't have the strength to be honest about escaping the sounds of healthy babies crying and the emotions that was giving me.  Plus, there was something about the quiet and darkness of the night and the still of the NICU at 3am that gave me comfort being with you.  It felt like it was just the two of us.  It was "our" time.

You won’t remember the terror I felt every time your monitors alarmed.  As a nurse monitors were a part of my professional life for 15 years.  Not any of that was spent in the NICU.  I knew nothing.  I didn’t know what was normal, and I certainly didn’t know what was beeping when.  Between IV’s, oxygen saturation, respiratory rate, heart rate.... they all had a different beep and initially I had no idea what each beep meant.  (In time though, we became “beep” pros)

You won't remember all the pain you endured.  All the IV’s, blood work, scans, tests, etc.  I knew it was necessary but that never made it easy.  One day you needed an IV for antibiotics.  The doctors asked me if I wanted to leave the room.  “I'm a nurse, I'll be ok” was my answer.  This is when I learned I am no longer a nurse, I am now a mum.  Finally on the third attempt of the IV I broke into tears.  For years I had heard “it’s different when it’s your own child” and moments like this taught me that was one of the most accurate statements for mums. 

You won't remember the tears I cried on the way home from the hospital many nights, thinking “This isn't fair”  “This isn't natural”  “Why us?”  “What did I do wrong?!”  I still remember the darkness of the freeway on our long commute home.  I wondered if we would ever resume a life with you at home where you belonged.  I also wondered if there would be ever a time on this drive home where the backseat would no longer be empty.

You won’t remember the nights I couldn’t sleep so I decided to Google any medical condition you can think of to see if there was any link to premature birth and pre-eclampsia. (disclaimer: don’t do this.  Ever.  Ever.)

You won't remember the pure panic I felt when the phone wasn't answered when I called at 3am to check on you.   Realistically I knew the nurses were busy (their job is to nurse, not answer the phone after all) but that didn't stop the irrational thoughts from running through my head.  “Something is wrong, they should have answered by now!” 

You won't remember the day I watched your blue, lifeless body be resuscitated.  Very likely the absolute worst day of my life thus far.  I have never felt so terrified in my entire life.  Once you were moved back to critical care, my mother instinct said “hold your baby, let her know it’s ok”.  However you were back in an incubator in isolation and we could only touch you, but even then sparingly as to not over stimulate you.     

You won't remember how huge little moments were.  Moving off CPAP, off HI Flow, off PBF, your first bath, your first outfit.  All are quite little things to some, but not to the parents of a premature or sick baby in the NICU/SCN.  These are huge steps, and massive steps towards the finish line.  The finish line of going home!

You won't remember the day you finally came home.  Your daddy and I stopped outside the NICU with you securely fastened into your capsule to stop and have a quick hug as we both cried tears of joy.  We felt like we had won.  For the first time, we were leaving as a family of three and no longer saying goodbye to you for the night.  You were coming home.  Our life of “Limbo” was becoming a chapter in our past, and we were finally starting our next chapter.  You won’t remember,  but I will never forget.

 

April Ratajczack

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July/August 2015 Fun Runs

The Swan River Run and City to Surf fun runs are being held throughout July and August. For the second year, we are pleased to be entering a teams in both events.

After the success of the HBF Run for a Reason, we have set ourselves a challenging fundraising goal of $5,000 for each event. A total of $10,000 would cover:

  • 1,000 copies of a booklet 'Guide to Surviving the Neonatal Unit' to be developed, printed and distributed to all neonatal units across the state.
  • 100 NICU care packages for parents of babies born very prematurely.
  • 50 bed-rest care packages to mothers who unexpectedly find themselves in hospital on bed-rest in the second trimester/early third trimester period of their pregnancy, due to complications or risk factors associated with their pregnancy.
  • Development of an early years strategy as part of our 'Growing'Up' support program..

Swan River Run

Date:
26th July - Perth 

To join our team:
1. Head to the Swan River Run registration site www.swanriverrun.com.au/enter
2. Click the red box ‘Enter now’
3. Enter you email address.
4. Tick the box 'Yes' to the question 'Are you part of a Team?' 
5. Tick the box ‘No’ to the question 'Are you creating a Team?' 
6. Select 'Team Tiny Sparks WA' under the ‘Choose a Team’
7. Enter your personal details and select a distance (14km or 5km) and start group (please note if you are pushing a pram you should select the back group). Complete the remaining questions and click ‘Next step’.
8. The next page takes you to ‘Do it for charity’. Please head straight to the red button on the bottom and click ‘Next step’. You will be able to set up your fundraising page for Tiny Sparks WA at a later stage.
9. Select the additional cost items on the ‘Shop’ page as desired and click the red button ‘Next step’.
10. Continue to make payment.

To fundraise:
1. Head to www.everydayhero.com.au/event/swanrun2015 
2. Click the red button ‘Start fundraising’
3. Type ‘Tiny Sparks WA’ and click on the button highlighting us when it appears.
4. Create a supporter page. As part of creating your supporter page, you can select to ‘Join an existing team’ and type 'Team Tiny Sparks WA'.

City to Surf

Dates:
26th July - Karratha
2nd August - Gerladton
9th August - Albany
16th August - Busselton
30th August - Perth

To join our team:
1. Head to the City to Surf registration site http://www.perthcitytosurf.com/register-now/
2. Select the Location.
3. Select your distance.
4. Click 'Join a Team' and type 'Tiny Sparks WA Team'
5. Enter your personal details and start group. 
6. Under the fundraising section, select 'Fundraise as a Team' and the 'Fundraise for another charity'
7. Complete the remaining pages as appropriate and make payment.

To fundraise:
1. Head to www.everydayhero.com.au/event/ChevronCitytoSurf2015
2. Click the blue button ‘Start fundraising’
3. Type ‘Tiny Sparks WA’ and click on the button highlighting us when it appears.
4. Create a supporter page. As part of creating your supporter page, you can select to ‘Join an existing team’ and type in 'Team Tiny Sparks WA'.

Good luck with your training and fundraising efforts. If you have any queries or need support, please do not hesitate to contact us via our facebook page or email admin@tinysparkswa.org.au

It's a Wrap - HBF Run for a Reason 2015

Team for Tiny Sparks WA ran or walked the 2015 HBF Run for a Reason today, covering all three distances, the 1/2 Marathon, 12km and 4km.

Our team raised an incredible $5,061!!

Special acknowledgement must go to our two leading fundraisers, Michelle R and and Scott E who both have babies currently in the NICU. They raised $1,500 and $1,341 respectively. Brilliant effort! We hope they both got extra long skin-to-skin cuddles after their runs.

In terms of real practical deliverables, this fundraising effort will result in:

Tashana, a high-risk pregnancy warrior, at the start of the 12km Run, having raised a fantastic $330.

  • 1,000 copies of an information booklet 'Hope - A guide to surviving bed-rest' to be distributed to maternity hospitals and obstetricians across the state.
  • Free parent workshops to held each month in Subiaco for a year.
  • 40 NICU care packages for parents of babies born very prematurely.
  • 50 bed-rest care packages to mothers who unexpectedly find themselves in hospital on bed-rest in the second trimester/early third trimester period of their pregnancy, due to complications or risk factors associated with their pregnancy.

We cannot thank our team and their supporters enough. This has made a huge difference to what we can deliver to Western Australian families in only our second year of operation.

Workshop - The importance of music for the preterm infant and throughout the early years

We are pleased to announce our free June Workshop is now open for registration covering the topic "The importance of music for the preterm infant and throughout the early years".

Presenter

Rebecca Jane Flanagan is an early childhood education specialist and a children's storyteller and performer with a wealth of experience and passion. Rebecca is also mother to little Millie, a miracle premature baby who was born last September at just 28 weeks, weighing a tiny 795 grams. Before her role as "Mum", Rebecca ran (and still does now) her own highly regarded business "Musical Experiences For Children", where she puts her background in music and opera singing to very good use! She has been a Junior Primary school teacher for 9 years, and most recently educating the eager student teachers at a number of Western Australia's top universities. Her next exciting challenge will be undertaking the position of Head of Early Childhood Music, Dance and Drama at The University of Notre Dame.

About the workshop

Music has the power to evoke joy, love and happiness… Have you listened to a familiar tune before that instantly transported you to your childhood? Music and memories are entwined, as the section of the brain where memories of our past are found also serves as a hub that links familiar music, memories and emotion. To possess these childhood memories however, one must have regular access to such joyful experiences in the first place. Music can be the key to unlocking the door to learning difficulties, has been proved to reduce stress, aid relaxation, and a recent study has even shown that singing nursery rhymes provide hospitalised children suffering illnesses with a feeling of well-being and happiness. Preterm babies who hear lullabies sung by their mother are given incredible benefits, such as lowered heart rates and improved breathing saturation. Music therapy is one of the very best ways parents can support their child in the NICU / SCN. In addition, learning music from an early age enables those neural pathways to grow in ways that can help your child maximise the potential they were born with. Research shows that playing music can make significant differences to children's abilities related to learning, memory and social interactions.

Sound interesting? Come along to the session and Rebecca will talk more about the amazing benefits of music, especially for premature babies, and will give you the tools to bring music into the lives of your children simply and effectively.

The workshop will be held in Subiaco at the Tom Dadour Centre on Tuesday the 9th of June 2015 at 7pm.  It is open to all families affected by high-risk pregnancy, premature birth or having a sick newborn.  To register for this workshop please visit the registration page.