The Challenges Continue for Adison

This is part 3 of a 4 part series.  You can read part 1 here and part 2 here.

Bringing Adison home to our family was amazing.  His entire NICU stay he was unable to meet his siblings as the NICU has a strict parents only visitation policy.  The children were overjoyed at meeting their new brother but also cautious knowing just how fragile he was and how close he'd come to never coming home at all.

Around 6 weeks after coming home i became concerned for Adison's health.  He was lethargic, not nursing well, irritable and having grey spells when travelling in the car.  Both the local ER and his followup NICU paediatrician brushed off my concerns but i knew something wasn't right.  At our routine cardiology appointment it was revealed that Adison was in the preliminary stages of heart failure.  He had left the NICU with a patent ductus arteriosis (PDA) which had now caused pulmonary hypertension, meaning that the blood rushing to his lungs was at too high pressures thus putting his heart under extra pressure.

The cardiologist was confident that the pressures could be controlled with medication so that was organised and we were sent on our way.  The plan was for a catheter procedure to plug the PDA when Adison was around 1 year old or 10kg whichever came first.  Just 3 days later, after 5 doses of medication we landed ourselves in the local hospital ER.  Adison had rapidly deteriorated and had had an unprecedented reaction to the medication where the pressures drop too low, it was a scary time.  We were immediately transferred to PMH and the Doctors kept us waiting a couple more days whilst they worked out a plan of attack and made sure PICU beds were available.

Post op in PICU.  I had a mild irrational panic when i saw him, my baby, on a big bed, with no side rails.  He was heavily sedated and not going anywhere!

Post op in PICU.  I had a mild irrational panic when i saw him, my baby, on a big bed, with no side rails.  He was heavily sedated and not going anywhere!

Yet again we were at life and death cross roads.  I was taken to the surgeons office to consent to a thoracotomy and PDA ligation.  They would make an incision on Adison's back under his shoulder blade, enter between the ribs and manually tie off the offending artery which runs between the heart and lungs.  The surgeon made it clear that without the surgery Adison's heart would ultimately fail and he would pass away.  With the surgery there was a very real risk that the main artery to the heart may tear as they went to tie off the PDA which would cause him to bleed out on the table.  I had to trust in the steady hands of the surgeon and the strength of my son and sign the consent.  There was no other real option.  Russell and our other children were home in Australind and again I was faced with this confronting situation alone.

Whilst 6 months had passed since Adison's birth he was still a tiny 4.5kg.  Hours past and finally I was told that everything was successful and Adison would be spending quite some time in PICU ventilated and sedated until they were sure that everything would be ok.  10 days later we were discharged.  Adison was doing much better but this had been a significant setback that would take him many months to overcome.  Adison came home on a hospital apnoea monitor and nocturnal oxygen.  Damage had been caused to his lungs and he required additional support whilst sleeping.  He was also having regular apnoeas and no one was quite sure why.  Sleep studies later revealed the apnoeas were caused by his premature central nervous system.

Home oxygen.

Home oxygen.

I can sit!  1 year old and still tiny in size 000 clothes.

I can sit!  1 year old and still tiny in size 000 clothes.

3 years on and we have had numerous admissions to hospital for pneumonia requiring oxygen for many days, sleep studies, MRI, 2 sets of grommets and his adenoids removed.

Adison's gross motor skills were very delayed, he rolled at 9m, sat at 13m, and didn't walk until 22m.  He was on home oxygen until he was 18m at which time he could finally maintain stable levels of oxygen whilst sleeping.  Adison continues to suffer from chronic lung disease and is very susceptible to cold and flu bugs.  The challenges don't stop there, we attend speech, occupational therapy, physiotherapy and numerous specialist follow up appointments to help Adison become the best person that he can be.

In spite of the labels that follow Adison around the medical world, chronic lung disease, cerebral palsy, hypotonia, verbal & oral dyspraxia, dysarthria, sensory processing disorder, he is an amazing, bright, confident little boy who's catching up, every moment of every day.

Look at me now!  Just one of the gang.

Look at me now!  Just one of the gang.


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Happy Mother's Day!


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Were you greeted this morning by smiling faces?  Cards?  Flowers?  Freshly cooked bacon and eggs?  Wafts of coffee or tea?  We hope your family is showering you with love and affection.  Sometimes the best gift of all is simply a cuddle or a hug from your loved ones.

Today we honour Mothers everywhere.  Those snuggling their little babies tight, those with empty arms, those who’s ‘babies’ are now grown and have moved away.  We think of the children both big and small who no longer have their Mothers by their sides.

Gift provided by Tiny Sparks WA for Mother's Day

Gift provided by Tiny Sparks WA for Mother's Day

This week we organised 150 small gift's for Mother's Day.  The gifts were distributed through hospitals in Perth to Mother's of current NICU/SCN babies and high-risk, hospital bed resting soon to be Mums.  For many this will be their very first Mother’s Day and they will be spending it with their son or daughter in NICU/SCN, or still in their tummy with the unknown ahead.  We hope the NICU/SCN babies are strong enough for a kangaroo cuddle today and those still baking stay safe for many days and weeks to come.

Please leave us a comment and share with us how you are celebrating today.

Happy Mother’s Day!!


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Twins!

Guest post by Katrina B.

All together in the nursery, the day they came home.

All together in the nursery, the day they came home.

'Oh, I didn't see this coming...'
Those were the words from the sonographer that my husband and I will never forget at our first ultrasound viewing, which displayed two tiny hearts beating away. It was the biggest and best surprise of our life - we were expecting twins! 

As beyond exciting as this news was, it also brought with it a sense of concern too, as we were immediately told that as I was pregnant with multiple foetus, it was a high risk pregnancy, as not only would my body be carrying the pressure of two babies at once, it also brought an increased risk of pregnancy conditions to the table, as it put extra stress on my organs, for which I was checked every two weeks at King Edward Memorial Hospital, where they specialise in high risk pregnancies. Being identical twins, I was also having ultra sounds every two weeks (that part I loved - being able to see my babies so frequently!) as well, to ensure I wasn't developing Twin to Twin Transfusion Syndrome, where identical twins can receive too much or too little of nutrients, as they share the placenta.
Both of my boys were developing extremely well and my doctors even thought I'd make it between 36 weeks to full term with them and I was really beginning to see the picture in my head of sitting there in a hospital bed, cradling both babies at once - I couldn't wait to have my arms full of love.

At one of my usual appointments, I knew something was up as soon as I saw the look on my doctors face after looking at my routine results, and after half a day of many tests, I was told I had developed a pregnancy condition called pre-eclampsia, that my organs were starting to shut down, that my babies would arrive in anywhere from a few days to a month, so I was given a shot of steroids to help their lungs start developing sooner and told that a hospital bed on the ward was currently being prepared, where I'd stay until my babies arrived. I still really had no idea what was going on, it was a lot to process, I had nothing with me, nothing packed and was thinking of everything I now had to cancel (logic went out the window when the confusion came in!), including the baby shower my sister had organised for the next week. 

My husband and mother were amazing and brought me what I thought I'd need for the night and arranged to bring the rest the next day and got me settled into the hospital room, with my husband staying with me until late, as I tried to process the whirlwind that was that day. The next thing I knew I was woken in the early hours of the morning to my waters breaking where shocked nurses and doctors realised these babies were coming fast and that there was no time to give a second shot of steroids to help with their development. Two and a half hours after my waters broke, my beautiful tiny babies had arrived via a natural birth at 30 weeks, with doctors allowing me a swift kiss before they were taken to the NICU. The rest of the day was a blur, as I was taken to theatre to have excess placenta removed, then to to the Adult Special Care Unit (ASCU), as I was still in a bad state from the preeclampsia, where all I remember is begging to see my babies through states of being 'out of it'. 12 hours later, my husband, who had been shuffling between the NICU and being by my side with my mother all day, was allowed to wheel me down with my oxygen on, accompanied by nurses. It felt so odd being wheeled up to a box and being told that was your baby was inside there, hooked up to all sorts of wires and contraptions, then off to another section to do the same with your other child. I remember being worried that being separated after living in each other's space for so long, that this would cause extra stress on their tiny bodies. 

Just before the boys were ready to come home, that magic first 'double cuddle'.

Just before the boys were ready to come home, that magic first 'double cuddle'.

After several days, I grew strong enough to leave ASCU, then to the maternity ward and after a week in hospital in total, was allowed to go home, where I remember feeling so strange and extremely empty as I walked into our home, where just one week ago I had left with a belly full of babies, expecting to be home in a couple of hours, to coming home a week later empty handed for a while. Everyday I would travel to the hospital to be by my boys' side to encourage their strength, let them know it was going to be ok because mummy was there when she could be and to be there for the light care taking duties the NICU team would allow us to do, which made me feel like a 'real' mum. I was fortunate enough that the boys were just around the corner from each other, so I never felt too far away from either baby, but when one of my twin's was transferred to a different nursery when he started getting stronger before my other little man, that's when I felt unbelievably conflicted. Every day I spent approx. 10 hours at the hospital, but I never felt I was there enough for either of the boys, as the whole time I was going up and down the hallways trying to work out 'who needed me more at that moment'. Every time my eldest twin (by eight minutes!) progressed a little further I was so proud of him, but felt bad for my baby back in the first stage. Every time I was able to have the immense pleasure of holding my babies during kangaroo care, I was so trying to be in the moment, but I couldn't help but feel guilt for the baby that wasn't being held. The NICU staff were so incredible in every aspect, even  including helping me schedule cuddles with my boys between nurseries, feeds when they began to breastfeed and timed the care duties as much as they could so that I was able to help out with each baby equally. Only the parents and grandparents of the babies were allowed in the NICU and as my husband was having to work long hours, a lot of the time my wonderful mother was allowed to go to one nursery briefly while I was in the other when things like head scans were happening at the same time. 

After 3 weeks at KEMH, my boys were transferred closer to home in the SCN of Joondalup Health Campus. My boys were able to be in an open bassinet at this stage, and for the first time since birth, my boys were reunited and stayed side by side in the double bassinet. It was an absolutely magic moment to see them right next to each other, being able to compare 'how identical' they were, to witness them interact and to sit by their side at the same time. Just before they went home I experienced my very first and very longed for 'double cuddle', yet another incredible experience and, at 36 weeks gestation we walked out of hospital with our beautiful boys in tow, completely beaming and about to embark on the full on, but blessed journey of feeling like 'real' parents, raising our twin boys at home. 

Family pool time a couple of months ago.

Family pool time a couple of months ago.

That day was 2 years ago on the Friday just gone, and we now have two healthy, happy, cheeky sense of humoured, boisterous toddlers who bring an abundance of love to our lives everyday. For this, we are eternally grateful to the NICU/SCN's of WA for the tireless work they do day in, day out for all our babies, it brings home why it's so important to have associations such as Tiny Sparks, whose aim is to support the work of these hospitals, other associations around WA that help families and their different situations, such as the Perth + Districts Multiple Birth Association and of course, the families who experience the high risk pregnancies and what it means to have a child/children in the NICU/SCN.


By sharing your own story it helps others to know that they are not alone.  If you would like to share your high-risk pregnancy story please visit this page, or if you would like to share your NICU/SCN story please visit this page.


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A Look Back - April 2014

Editorial

We have been overwhelmed by the generosity of our community this month. After only a few short days fundraising for the HBF Run for a Reason we surpassed our goal of $1,000. Thankyou! Having reached our initial target we are thrilled to confirm that we will be printing and posting posters and flyers to hospitals, child health nurses and family planning clinics across Western Australia, to enable all families to be aware of and access the support Tiny Sparks WA provides. We have now set our second goal of a further $1,000. Our leading fundraiser is a family with a beautiful baby girl born at 23 weeks still in NICU, so we think a grant to Parents of Prems to provide care packages to families with micro and extremely premature babies is a fitting use of part of these funds. The remainder will be used for development of workshops specific to the needs of our community that we plan on rolling out over the next six months. There is still time if you would like to join our team.  Please read more on our fundraising page and our fun run blog

Community Conversations

We celebrated one of our community getting to 34 weeks after having an extremely premature baby. Chat about how parents celebrated each milestone.

We loved this response from Pamela J "I got myself a bottle of Edenvale De-alcoholized sparkling wine from Woolies and toasted our success every few weeks.  It is actually quite tasty and I tell all pregnant mummas out there to get one. It makes you feel really special, particularly if you drink it out of your fancy glasses, and it is safe for the baby :)"


Interesting Articles

Group Prenatal Care Boosts Pregnancy Outcomes - New results are forcing health care providers to reconsider the best ways for preventing preterm birth. (read more)

Messy Diapers Help Show Nutrition need for Premature, Full-Term Babies - Messy diapers are helping scientists to understand how nutrition helps babies grow into healthy children. (read more)

"Preterm birth is the single greatest cause of death and disability in young children in our society." We are so pleased to see  Women and Infants Research Foundation pushing hard to find answers and make changes in this area. (read more)


Handy Reminders

We have a Bunnings Sausage Sizzle planned for 7th May at Bunnings Claremont.  It isn't too late to volunteer your time please get in touch ASAP if you have an hour or two to spare.


Thanks for the Support!

5 families came along to our Family Photo Evening Fundraiser.  They had a fabulous time and were delighted with their images.  We plan to run this fundraiser again later in the year so please keep your eye out so you don't miss out.

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Erin Cooper Designs have continued their support this month donating 20% of their total sales until 30/4 to Tiny Sparks WA.


Requests for Support

Printing

Does anyone in our community work at a print/copy shop (think Snap Printing, Officeworks or similar) or have a partner, relative, friend etc who does? If you could e-mail abates@tinysparkswa.org.au we would love to chat to you.


Going Home News

Our congratulations are extended to everyone who took home their baby from NICU/SCN this month.  Special mention to the Draman family who took home their beautiful daughter just in time for Easter, article here.



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Adison's NICU Journey - Up Close and Personal

This is part 2 of a 3 part series.  Part 1 can be found here.

After the whirlwind that was my classical section birth at 4am, finally at 8pm that evening I was functioning enough to be wheeled into NICU to properly meet my new son for the first time.  Wow!  That was confronting on so many levels.  The heat from the NICU made me feel physically sick but I was determined to stay as long as possible and see my boy.  To find out what I could about all these tubes wires and machines keeping him alive.  It was noisy, bright and there were SO MANY BABIES!  I think the thing that shocked me most about NICU was the sheer number of tiny babies being supported and kept alive by the amazing staff and technology in the NICU.  After a very short period I couldn't physically stay there any longer, it was time to return to my room.  Adison was ventilated but stable.  They were treating him with prophylactic antibiotics as they felt he may have an infection and he was moving about, flapping his little arms and legs in his incubator.  In spite of all this Doctors had ordered feeds of 1ml of breastmilk per hour as tolerated in a bid to prime his gut.  We had also been approached to participate in two research studies which we consented to.  One was on genetic prediction of preterm birth, the other was on the type of lipids given in the NICU.

Meeting Adison 865g.

The next couple of days were about recovery for me and progress for Adison.  On day 3 the Doctors decided that Adison was breathing well enough to be taken off the ventilator and put on CPAP.  My milk had come in, I was in pain and was an emotional wreck.  My husband and children were staying with my parents.  2 of my kids were sick.  As I shuffled past the nurses station, holding the wall to help me balance and hunched over because the pain was too great, but struggling on because there was no one to wheel me to NICU a nurse popped her head out the window and said, "I think we'll send you home this afternoon."  I burst into tears and continued to walk to the NICU.  I could not contain myself, my thoughts.  How could they possibly discharge me when I can't even walk properly and my baby is in the NICU?  Where will I go?  Home is 2 hours away.  How will I possibly look after my other children when I can't even look after myself?  It was all too much.  When I got to the NICU I couldn't say a word.  I sat quietly and watched my baby and cried.  I returned to my room and was visited by an admin staff member and we had an argument about me staying 1 more night.  In the end I won.  I stayed 1 further night and was discharged the following morning.

As a rural mother I was offered accommodation at Agnes Walsh House.  I had never heard of the facility before, in fact I had never set foot on the hospital grounds until wheeled in by the ambos just days before.  I wasn't sure what the accommodation was like, what it cost, where it even was.  I asked for information, a hand out, anything, nothing came.  All I could find out was that it was for mothers only.

Very sick.

On day 4 I had my stitches removed and was discharged from hospital.  I went home to my parents house in the northern suburbs of Perth.  Adison was initially doing well on CPAP but as the days went on he moved less and less, he was struggling more and more.  On the evening of Day 6 I called the night staff before going to bed to check how he was doing.  This had become part of my routine.  The nurse looking after him said, "I'd be lying if i said he was doing well."

No words can describe the terror you feel when you hear words like that.  Overnight Adison became worse, at that point they didn't know what was wrong but suspected some kind of infection.  He was ventilated again and blood tests and a lumbar puncture revealed he had contracted a very nasty infection, heamophilous influenza which was now ravaging his body.  So we waited, watched and hoped.  Adison was pumped full of antibiotics, received the first of three blood transfusions and was on minimal handling to give his body every chance of recovery.

First cuddle.

Slowly he started to regain some of his strength and his CRP levels came down.  The treatment was working and he was getting better.  Finally on day 18 I had my very first cuddle with my baby boy.  Words can't describe how I felt.  At one point I thought that moment would never come.  I had sat by his bed and quietly whispered to him that it was ok, that if the fight was too great, it was ok for him to go, I would not make him suffer.

After three false starts over the coming week and 2 further lumbar punctures Adison finally made it off the vent and back onto CPAP.  Things were looking up.  He was tolerating his feeds and most importantly he was putting on weight and growing.

On the morning of day 28 I walked into the nursery and was surprised to see a big open cot in Adison's bay.  I immediately assumed Adison must have been moved overnight but thought I would just walk down to his bay to check.  

Adison and his favourite friend 'Blue Dog'.

To my surprise Adison had been taken out of his incubator overnight has he had progressively got hotter over the previous 24 hours and there was nothing to indicate that he had an infection.  They had turned his incubator off and opened all of the portholes and he was still hot.  They were left with no other options than to take him out of the incubator and into an open cot.  He had only just hit 1kg and I was told normally they waited a bit longer than that but Adison wanted out.  He had just moved onto full feeds which he was tolerating well and his TPN had finally been removed.  My baby was IV free for the first time in his short little life.

After 7 weeks of visiting the NICU daily it had become so routine that I had to remind myself that it was an intensive care unit.  My baby was growing but he was still requiring a lot of breathing support to keep him alive.  Without CPAP he was not maintaining his oxygen saturations.  Adison had become the healthiest baby in the NICU and there was rumour that he would be moved out to HDU (High Dependency Unit) that rumour was right and later that week he was moved.  I was so anxious about the unknown, but my fears were allayed, HDU was lovely and the staff just as friendly as the NICU.  Some of them the same faces.

First try on PBF oxygen.

Many more weeks went past and the biggest hurdle we faced was breathing.  Adison really wasn't ready to move off CPAP.  His head was suffering terribly from being squashed by his CPAP hat and it was decided that his head needed a break and he would be tried on PBF oxygen to give his head a rest.  It was decided they would try for 1 hour every other day to begin with and add foam inserts into his hat to protect his head more from the CPAP.  It was at this time that Adison began non-nutritive sucking where I would express off my milk and offer an empty breast for him to nuzzle.  He was so keen but could only manage 3 or 4 sucks before wearing himself out.

First cuddle with Dad.

My husband was yet to cuddle Adison.  He had returned to work in Bunbury so was only visiting on weekends.  Between juggling our 3 other children at the weekend and visiting Adison we'd not been to visit him together at all.  We finally made arrangements and Russell had his first cuddle.  Wow, what a way to get the emotions flowing that was!

Christmas was rapidly approaching and poor Adison seemed stuck.  He was still cycling off CPAP and onto PBF, he'd had a few set backs going back to full-time CPAP.  He'd needed another blood transfusion and was having a few breastfeeds here and there but was wearing himself out too quickly.  It was a waiting game yet again, and then quite quickly he decided to get a wriggle on!

First bath.

He managed to move off CPAP onto PBF and get a proper bath for the first time!  We was sucking more feeds and the door was looking closer and closer.  He moved from his big white cot into a smaller wire basket, passed his newborn hearing screen and continued sucking more feeds.

Heading home, 2.7kg.

But of course there is always a hitch with getting these little ones home.  Adison had an ingroinal hernia and as it was Christmas break there were no surgeons at PMH who could operate and he was not to be discharged without the repair.  So we waited, and waited.  Then he needed an extra eye exam, so we waited for that too.  In the end the Drs made arrangements for 3 babies to have surgery at PMH as they were all ready to go home and just waiting on hernia repairs to get out the door.  A lovely Dr returned from Christmas break early and conducted all of their surgeries.

Finally on January 8, 2 days before his due date and 100 days after he was born we left KEMH NICU in Perth and headed for home back to Australind.  We thought the worst was over, that now we would watch our baby flourish, but things change fast!

Part 3 of Adison's story can be found here


If you would like to share your NICU story with our community please get in touch via our personal experiences page.  Your stories help people through their own journey to know that they are not alone and that in spite of all of the obstacles facing their baby these little ones are true warriors.


You may also like these stories :

Adison's Birth Story

Adison's Birth Story

Pregnant with Blake

Pregnant with Blake

PTSD - One Woman's Battle

PTSD - One Woman's Battle

Writing is Therapeutic

Writing is Therapeutic


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