The Beginning of Project Protect
Posted on September 25 2020
At 5 1/2 weeks old (a Monday) I noticed Sienna was getting sick with more than normal vomiting and increased nappy changes. I visited the GP and Paediatrician and by Thursday she was completely unresponsive and lethargic. I took her straight to our local emergency room where a team of doctors proceeded to take samples from every angle. That was Day 1, 30 Nov 2017.
Day 3, Saturday 02 Dec - Sienna was getting worse, quicker than the local hospital could handle, her diarrhoea had increased and her vomiting had increased to the point full and multiple bed changes were needed, so we were transferred by ambulance to one of the major children's hospital in Brisbane.
They took one look at Sienna and knew she was in trouble.
Sienna was sent for multiple dye tests for the vomiting, she had X-Rays and ultrasounds and everything came back clear. Which is great right... but we still had not found a cause to her condition.
Day 5, Monday 04 Dec - We/I had to stop breastfeeding her and she was placed on a full drip so they could monitor and increase fluids based on her output, every nappy was weighed. At this point with multiple teams of doctors working on her, it was decided I would go on a Dairy and Soy Free Diet by the allergist team.
By Monday afternoon, Siennas poor little body started shutting down. Her cannulas started falling out and they were unable to get enough blood for tests due to dehydration.
Day 6, Tuesday 05 Dec - A decision was made that Sienna needed to go into surgery to have a PICC line put in her body so they could give her the fluids and antibiotics she needed, as well as gain access to the bloods they needed. As we awaited the surgery the next day, my little girl had her first hair cut/partial head shave so they placed a cannula in her head, a last resort before surgery.
Day 7, Wednesday 06 Dec - Sienna went into her first surgery at 6 weeks old to have a PICC line placed in her fragile body. They also had a team of doctors with cameras inspect and take samples of her insides for more clues to her illness (she passed with nothing appearing wrong or out of place, but her stomach was red raw and lost all the lining). By the book Sienna should be a perfectly happy healthy baby. Once she was out of surgery Sienna was taken straight to the Paediatric Intensive Care Unit (PICU).
Day 8, Thursday 07 Dec - They still didn't know what was wrong with Sienna and had to do blood transfusions to stabilise her electrolytes and subsequently put her on Total Parenteral Nutrition (TPN).
Day 9, Friday 08 Dec - I received my first smiles since before we arrived at hospital :).
Day 10, Saturday 09 Dec - Dad got to spend his birthday in her intensive care room lol He took a photo as proof so that he could remind her each year on his birthday :).
Day 11, Sunday 10 Dec - They tried her first bit of food by since stopping a week ago. 2ml per hour lol (slow and steady wins the race).
Day 13, Tuesday 12 Dec - In the afternoon Sienna graduated from PICU and was moved back to the ward.
Day 16, Friday 15 Dec - Siennas food intake was slowly being increased each day and tried her on bulk feeds instead of a continuous flow via drip. They also started adding my new and improved breastmilk which was dairy and soy free.
Day 19, Monday 18 Dec - Sienna had her very first feed from the breast (partial feed since my supply dropped dramatically over the past few weeks).
Day 21, Wednesday 20 Dec – The hospital decided to do a Dairy Challenge before we were discharged from hospital. At 12pm, Sienna has her first taste of full dairy cow’s milk formula. She passed the first two stages however by 3pm, she was back were we began, lifeless and vomiting uncontrollably all night. Let’s just say we weren't discharged as per the plan.
Day 23, Friday 22 Dec - Sienna was confirmed FPIES to Dairy and Soy Intolerant. Two days before her first Christmas we were released from hospital on a new food diet :)