It’s wonderful to have so many families stepping forward to share their stories and help support other families when caring for a child in hospital. It’s even more wonderful to have a father share his story too. This week Jason shares his experiences with his wife Nikkita and their son Ari who was born with Hypoplastic Right Heart Pulmonary Atresia.
He tells their story so beautifully, there is nothing more for me to do, than share it with you.
Hello families and friends that are living the hospital life at the moment or in the future. My name is Jason, proud heart dad to Ari, who was born with hypoplastic right heart and pulmonary atresia in August this year (2016). Ari was in hospital until just after he was 9 weeks old, he was taken to NICU straight away and then to PICU until Melbourne’s Royal Children’s Hospital was ready to do Ari first surgery which was to place a shunt into his heart to bypass the right side as it was not functioning the way it should. When Ari had his first heart surgery it was textbook according to the surgeon which as you could imagine was the most incredible uplifting news to Nikkita and I.
The days to come after the surgery did not go Ari’s way as he became septic, and when the surgeons told us that they needed to investigate his stomach and bowels because something was perforated, they had discovered that his appendix had burst which is unheard of in a newborn. After that, Ari’s diaphragm was not working the way it should so the cardiologists decided to operate to fix his work of breathing. So what was meant to be 1 surgery turned into 3 and over two months of recovery and for our family over 2 months of living in the hospital. There were other complications that seemed small in comparison to the 3 surgeries but still just as stressful that Ari had to overcome.
By far the hardest part of the hospital stay was having to sign the dotted line for each surgery were it states your child may die during surgery. There are no words to describe the true fear and pain inside that you feel when you hear the list of things that could go wrong and of course the worst being death.
When Nikkita and I first walked into the room after Ari’s first surgery and when he was becoming septic, to see him swollen and multiple lines coming out of his tiny body was like being in a living nightmare. Nothing can prepare you for that, and even when I think about it today my heart sinks.
How did us as parents cope? I have to honestly say it was purely off of Ari’s strength and will to live, there were days where we were scared to walk into the room because of what bad news was to come and then the days where you got good news was like having a party in your heart and mind because you can start to see the light at the end of the tunnel for our little one.
Some things that were helpful during this time, was getting to know the people that are looking after Ari. The fear of the unknown of putting a life in their hands can be too much to bare at times so I believe you should get to know their name and build a relationship where you feel comfortable to ask any questions that will ease your mind. If your are spending lots of time in an intensive care unit, then bring a book to read or what I did was had a blank art pad so I could draw pictures because you need something to keep your mind at bay while the professionals do what they need to.
The best advice I could give to families that are going through any prolonged hospital stay, is to look for the positive in everything.
The power of positivity is absolutely incredible and truly does wonders. If you have negative people in your life, as harsh as it sounds, try to distance yourself from them as they can suck more energy from you and during these times you already have limited amounts. Our family was truly blessed as we had an army of positive people family, friends, work mates all sending prayers and positive vibes Ari’s way during his ordeal.
Also what ever your faith or spiritual belief is, call upon them for strength and guidance. In our case we wrote on a little piece of paper to arch angel Michael to watch over Ari and help him and we placed that paper under Ari’s cot mattress. I also asked my dad, brother and nanna that had passed away to give Ari the strength he needed to get through this.
You don’t have to be religious, just ask whoever you turn to in your head at your lowest times in life. I believe this helps your mind cope massively. My last bit of advice that I would like to offer, is to take each day one at a time and each our at a time don’t look to far ahead as things in hospital can change in an instance and the more you look ahead the harder it is to deal with at the time. Be prepared for anything and everything.
I would like to finish by saying that Ari is doing great! He still has further surgeries to come In the future, but his strength will overcome all obsticals and Nikkita and I will be by his side all the way through with love and positivity as our guidance. A big thank you to all of our family and friends that have supported our family all the way through Ari’s journey so far. To the families that are going through the hospital life now or will be in the future I send my prayers and positive vibes your way.
For anyone who has a child that has been diagnosed with CHD (Congenital Heart Disease) Heartkids in Australia, is a great place to start for support and information. Alternatively, you can contact us here at Cocooned at any time.