“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
They say there’s a story behind every person…but your mother’s story of you is where yours begins. Let me introduce you to my son Harvey. He was born on the 21st of September 2016, 3 months premature and a complete surprise. He was born with a long list of issues. However, at the time of discharge, his current complex needs are Respiratory support, Nasogastric feeding, Global developmental delay; Congenital hydrocephalus and Arthrogryposis multiplex congenital neurogenic type. Each diagnosis comes with its own symptoms and risks.
Harvey was no planned pregnancy; in fact, I am one of the many women who carry for 6 months without knowing. Harvey gave me no pregnancy signs like my teenage kids (Marcus 16yo & Jazmyn 14yo) did in the first trimester and I had regular menstrual cycles.
In general, my life was busy. I worked long hours, did family stuff, hung out with friends, organised and assisted with church events and I even went on a Volunteer trip to Fiji for 9 days. When I returned back to Sydney, no weight had shifted and I came to the conclusion that I was bloated.
After a self-diagnosis on Google, I read that some women mistake bloating for pregnancy. My curiosity drew me to the doctor’s door for blood tests. Lo and behold, the Dr says "Congratulations! You're pregnant and please book in for an ultrasound scan, Thanks."
It was exciting and nerve-racking news because a lady of my age, 41 yo with a Bicornuate Uterus now has higher chances of a miscarriage within the first 8 weeks of pregnancy. So, it was in our best interest that we kept this news on Lock Down.
An Unexpected Arrival
On Monday 19 September 2016, we arrive at Sydney Xray and my calculations had put me at 8 weeks pregnant; the ultrasound scans revealed that I was 6 months pregnant. Jonathan and I just laughed with tears of joy rolling down our cheeks. Our news was no longer on Lock Down.
The surprise continued, 2 days later I was in Emergency with stomach pains, only to discover that I was 8cm dilated. Harvey was coming out bottom first, ready or not. He was born on the 21st of September 2016 at 11.17am, was 33cm in length and weighed 910 grams. And so, our 8-month Hospital journey begins…
Having Harvey in NICU at the Royal Women’s Hospital for the first 120 days was an overwhelming experience. He endured 1 surgery, 3 blood transfusions, 2 platelet transfusions, picc lines, concoctions of liquid protein, ROP, Chronic Lung Disease, on Respiratory support, PDA, Reflux the list goes on. There was a lot of praying, watching and waiting beside his humidicrib. Harvey was notoriously known for his bradycardia’s, desaturations and sleep apnoea.
At Full term, he was then transferred to CICU, Sydney Children’s Hospital, where he spent the next 84 days of his life. It was by this stage that we were coming to terms with his situation. We almost lost him a couple of times and had to face the reality that he was still fragile; his survival rate was bleak and will have a future of complications. The lowest point came when the doctors told us to consider Quality of Life and to sign a Do Not Resuscitate form. Praise the Lord, we never saw that form.
With continued prayers and taking each day in our stride, I took a Leap of Faith and took Harvey off his ventilator during the day, where he learned to breathe on his own. Time off the ventilator started at 20 minutes, then 30 minutes then 1 hour. This was against all odds but it warranted him a discharge referral note into Christopher Robin General Ward where he continued to grow bigger and stronger. After 56 days in the ward, and a total of 260 days in the hospital, Harvey was finally discharged on Wednesday 7th of June 2017.
Where We Are Now
Harvey has been living at home with us now for just over a month. My days with Harvey now consist of hour long feedings every four hours, constant sterilising and cleaning, exercising and strengthening his limbs and assisting him with developing his fine motor skills. Harvey continues to see several specialists at Campbelltown Hospital and Sydney Children’s Hospital, Randwick. It's a big job, but one that is totally worth it as our lives has been enriched by him. So, it’s hard for me to return to work.
With only 1 income coming in, we’ve had to stop and re-evaluate our priorities. Harvey has come a long way in his short life; he is by no means out of the woods yet and is going to need long-term treatment. The main concern we have now is affording his extensive medical bills and expenses. We're not classed as permanent residents; therefore we are not eligible for government assistance. Thankfully, Enable NSW and Nutricia are helping cover the cost of his X2 Trilogy Respiratory BiPAP machines and Feeding Pump but his ongoing medical supplies costs, medication, hireage of his pram and appointments are not supplemented. Monthly costs will vary, for June it was $500.00.
We are in the process of applying for a Skilled Independent (subclass 189) visa which allows New Zealand citizens to obtain permanent residence status which came into effect on 1 July 2017. The application for a family of 5, medical check-ups, and lawyers' fees will cost us around $10,000.00.
With all of the above combined, we call for your prayers and for any help in the form of donation that may assist in easing our financial worries, and keep us going as we apply for residency.
Thank You for taking the time out to read Harvey’s story!
- Tracy Keys
- Rayan Murib
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