As many of you know, the beginning of my son Kane’s life involved quite a bit of medical attention. We spent 54 days at the Neonatal Intensive Care Unit (NICU) at the Royal Alexandra Hospital here in Edmonton.
During our time at the NICU, I had hoped to take photos for others who were spending the beginning of their life as a new family in the same less than ideal situation. My thinking was that there are so few “normal” family experiences when parents have a premature or medically fragile baby and the opportunity to have baby photos to share with family and friends would be invaluable. Unfortunately, there was some beaurocratic red tape and I was never able to offer this to the families we became close to during our stay at the NICU.
This week was my first time. I headed over to the Pediatric Intensive Care Unit (PICU) at the Stollery Children’s Hospital to meet not one, but two, tough little people.
I want to thank Maverick’s family, Rachel, David, Colten and Brody, and Jazlyn’s parents, Jenine and Jesse for sharing their beautiful babies with me. This experience brought back a lot of the emotions I felt when Kane was in hospital. I am so grateful I was able to make a positive contribution to these families.
Before I released this post I sent a copy to both families to look over. This is what Rachel wrote back:
I thought I would give you a bit of Maverick’s miracle story.
On June 7th, 2013 Maverick was born a healthy 8lb 9 ounces. We found out everything was perfect except his heart. Maverick underwent open heart surgery on June 14th, 2013. The 5 complications with his heart were: double outlet right ventricle, narrowing of the aorta, coarctation of the aorta, ASD, VSD, and coronary complications. The 9 hour surgery went well until the following day when to our horror Maverick had a cardiac arrest where his heart stopped for 43 minutes. The amazing doctors at the Stollery Children’s Hospital of Alberta got him back, and put him on life support. From there this amazing little man continued to fight through a multitude of other battles to keep his young life. To give you a glimpse into Maverick’s journey, his mommy wrote a poem when he was just 2 months old.
They said, the surgery is long and risky. we prayed for a miracle. They said, the infection is bad, he will not make it. we prayed for a miracle. They said, he will not come off the VAD we prayed for a miracle. They said, his kidneys will not recover we prayed for a miracle. There were a billion other times~ we prayed for a miracle. They said, ‘he’s surprising us all!’ we said ‘ a whole army of host’s is a prayin’ for a miracle’. Now here he is after, 12 surgeries, over 200 units of blood 2 Cardiac arrests 1 right atrium hemorrhage
3 sepsis infections
1 heartbroken mommy
and a million other tests, scans, & things ~
our baby ~ a fighter has surely shown them to be our little miracle.
Maverick still has a long ways to go to get into his mom’s arms and home to his brothers. At 10 weeks he currently weighs 6lb 6ounces. He has won many a heart with those bright blue eyes & fighting spirit.
Thank-you Kristy for capturing these images for us & our family.
After seeing the blog, Jenine and Jesse wanted to share more of Jazlyn’s story as well. The following is the email they sent me.
As you know Jazlyn has been in the University of Alberta Hospital since June 19th, and in the PICU since June 25th, 2013. She is our first child, and Jesse and I knew she had a heart problem since I was 20 weeks pregnant. We were told she had a hole in her heart, and that it could be repaired when she was about 3/4 months old. We were given many options to terminate the pregnancy, and that the chances of her having Down Syndrome were high. Not once did it cross our minds to terminate. We told each other that we loved her no matter what the outcome.
On May 24th, 2013 Jazlyn Sara Yarish-Berezowski was born. She entered this world by an emergency cesarean section, due to a sudden heart drop. Everything went smoothly and a beautiful 6 pounds, 13 ounces came into our lives. She spent the first week of her life in the NICU in the Health Sciences Centre in Winnipeg. She was carefully monitored because she had a low oxygen level. Shortly after her birth was our first big meeting. We were completely overwhelmed by this meeting. Turns out the echocardiogram told us much more than a hole in her heart. Jazlyn was diagnosed with AVSD (Atrioventricular septal defect), DORV (Double outlet right ventricle), PS (pulmonary stenosis), TGA (Transposition of the great arteries), Right atrial isomerism, Hypo plastic pulmonary artery, and a narrow IVC (inferior Vena Cava).
After a scary first week of her life, we were extremely excited to bring our little princess home the following Friday, May 31st. We had her home for an amazing 2 weeks. and 5 days.
On June 18th we were suddenly flown to Edmonton for a CT scan and possible heart surgery. Jazlyn was admitted to the Stollery Children’s Hospital on June 19th. After monitoring her and doing several different tests, we were told on May 25th that we would be going home the next day. The surgery was cancelled and we were told about our options: either she will need a transplant, need a few surgeries (all of which were extremely complicated), or do nothing- which would eventually lead to her death. We were very upset to hear our options, but happy to know we could go home the following day. Not even an hour after that discussion Jazlyn started acting different. She was cold, blue, and having trouble staying awake. Before we knew it, she was getting rushed to the PICU and we were overwhelmed with what came next. We watched our baby girl get intubated (breathing tube down her throat) and then she crashed. Those three words I will never forget- “Stats are dropping!” It was like a scary dream. We watched people rush over and suddenly our little girl is getting CPR. They saved her life.
This is where the journey began in the PICU.
It has been an exhausting 11 weeks as Jazlyn is on life support and has been fighting for her life. She has been on and off the transplant list an uncountable amount of times. Each organ in her body has been affected by the machines and drugs, and now she is permanently off the transplant list due to a perforated bowel and unproductive kidneys. Her only option now is to go off the artificial heart device and hope and pray her own heart will work again. On September 13thJazlyn will be taken off the life support. Praying for a miracle.
She has had 7 surgeries (one of which was the first time done in Canada! And only 7 times worldwide). She has had 83 blood transfusions; given 5546 ml of blood. She has had 3119 ml taken from her for blood work. She has had 2427 ml of morphine! (Which is 2 liters of morphine!) 4351 ml of IV meds, 13 liters of TPN (which is her nutrition), and 4138 ml of breast milk. Yes, I have been pumping this entire time! I have a freezer full of my milk ready to give Jazlyn 🙂
This experience has definitely been a roller coaster ride. Each and every day presents itself with new surprises. Our precious angel has overcome so many hurdles and we continue to have hope and faith.
“But I trust in you Oh Lord, I say, you are my God; my times are in your hands.” -Psalm 31: 14-15
God has promised to never leave us nor forsake us. 🙂
Maverick and Jazlyn, my thoughts are with you.
This courageous little girl lost her battle on September 30th, 2013.
Kristy is an engaging, open, and honest Common Language DST trained digital storytelling facilitator. She has been speaking and teaching workshops on both photography & digital storytelling for 5 years. With a background in the education, healthcare, and non-profit sectors, she works with diverse audiences, prioritizing ethics in storytelling and storyteller wellbeing.
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