Let me tell you a little bit about my beautiful baby boy…

 

Lincoln Patrick Elwell was born on Friday the 27th November 2015.  He came into this world at 5:28pm weighing 7lbs 10oz. He was 37wks 5days and a perfectly healthy baby boy.  Little did we know our whole world was about to change, our family was on the verge of a powerful yet heartbreaking journey, one that we were unprepared for and one that we wish we never had to go on. 

 

On Day 3 Lincolns feeding started to decline.  I tried not to panic…but something didn’t feel right…something was making me feel uneasy.  I requested our paediatrician, the midwife and the lactation consultant to review Lincoln.  They agreed, he was a little disinterested but nothing they considered a problem at that stage.  He WAS only a few days old and in otherwise perfect health.

 

We headed home on the morning of Wednesday the 2nd December.  I was hesitant, I was nervous, Lincoln did not feel ‘normal’ to me…I was again assured he was fine, I was just feeling anxious. This, to be honest, was correct but my mummy instincts were on high alert.  I often wonder if I knew then, what I know now…could things have gone differently?  Thankfully my answer is; I don’t believe so.  I am one of the few that carry no guilt or blame as what happened to Lincoln was completely random, completely unpredictable and completely rare.

 

By Saturday 5th December, Lincoln had become quite lethargic and his poor feeding had increased.  We rushed him to emergency where he was admitted to the ward where his oxygen, heart rate and rhythm were monitored.  On Sunday morning at 6:30am, Lincolns heart rate peaked at 240bpm.  The ICU retrieval team at Lady Cilento Hospital were contacted and after numerous techniques to decrease his heart rate failed, they sent a helicopter to transport us to their paediatric cardiac unit.  Upon arrival in Brisbane, Lincoln was declining rapidly, and they had no choice but to place him onto an ECMO life support machine.

 

On Monday the 7th December, at just 9 days old, we were advised Lincoln had contracted an enterovirus that had affected his heart causing myocarditis and all his tiny ventricles to dilate. There was nothing they could do, no treatment they could specifically give, only drug support…it was a watch and see game.  IF, and that was a big IF, Lincoln ever made it off life support, we would all have a long challenging battle ahead of us…

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We fought hard for Lincoln for 20weeks. We were residents of Lady Cilento for 135 days. We gratefully never left his side. Lincoln had many wonderful and deeply treasured times with us, he beat the odds on numerous occasions and inspired us all to never give up. In this unimaginable situation we were actually one of the lucky families…we were able to see Lincoln smile, to laugh, to bath him, to cuddle him, to sing to him, to read to him. One of our proudest victories was on March the 1st when Lincoln was discharged to the cardiac ward! He spent a massive 88 days in PICU! He was free of IV lines, had surprised all the doctors’ countless times and was only on high flow oxygen…I was so so proud of all we had achieved, he had such determination and strength.   

 

We met the most amazing people and families at Lady Cilento Hospital. The Paediatric ICU was our home. The teams of nurses and doctors became our extended family. So many of them made our time bearable, there was laughter and memories but also gut wrenching tears and heart stopping moments that no parent should ever have to experience.

 

Sunday the 17th April was no different to any other day. Lincoln was happy. In the afternoon, we bathed him and played with him. I gave him a massage which he absolutely loved. He fell asleep with me cuddling him on the bed watching Thomas the tank engine. He woke up around midnight and was wide eyed, smiling at me. I rocked him and cuddled him for 2hrs. He was just the most beautiful child.

 

At 4am on Monday the 18th April he woke. A nurse came in to cuddle him so I could get some sleep. He looked absolutely perfect, his numbers were absolutely fine.

 

At 5am Lincoln went into sudden cardiac arrest. The teams worked on him for an hour. Everybody tried their hardest to save him. There was nothing that could be done. At 6am, our whole world came crashing down. A piece of us left with our baby, I felt so empty and numb, we felt broken and shattered.

 

Our beautiful baby Lincoln had passed away. We spent the day with Lincoln to say our final goodbyes. He had so many visitors come to see him...all his hospital family were in shock and full of sadness. Most of them considered Lincoln as one of their own, they were with us through the good times and the bad. He had always loved the attention; he was just the most gorgeous baby.

 

All the prayers, well wishes and positive thoughts we received from family to close friends to complete strangers…this, I genuinely believe allowed Lincoln to make it that far, to give us the pleasure of knowing him for 5mths, we feel so fortunate that we were able to have this precious time with him. 

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I have added a photo timeline to this page from Newborn to the Cardiac Ward.  Some might find it quite confronting, quite sad, I must admit watching photos and videos of my baby boy can at times send me into such sadness but most of the time, it makes me smile, it does this because I am so proud of how much progress we made, how far Lincoln came.  

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