On June 8^th at 11:29pm we welcomed Ella Freda Ewert into our family. Our beautiful baby girl came with some resistance but with her chin up. I feel like this may be a theme that will follow her through her life – swimming upstream but with a smile on her face. You see, with the joy of holding the newest Ewert came the lingering concern that she showed signs of Down’s Syndrome. As a mother I could only tell you that the eyes were the tip off to my intuition. When I mentioned this to the nurse, she tried to reassure me with the fact that Down’s syndrome children often had a line straight across their palms. Much to her surprise, when she opened Ella’s palm one more sign was revealed.  The next couple of days were filled with a mosaic of elation, anxiety, mourning and everything in between.  With a little extra time, Ella learned to nurse however still developed jaundice with a bilirubin level of over 300 micromoles. (290 is critical). So she spent a couple days in her little tanning bed. As the hours passed we were encouraged by Ella’s progress in nursing and activity.

On day three,  Ella was doing well overall however the doctor admitted that he too, had independently thought there may be a possibility that Ella may have signs of Down’s and that we should go to a specialist to have her tested. When you have these doubts, all you want is for somebody to tell you that you are paranoid and have nothing to worry about. My heart broke as I heard him talk about the genetics specialist, trips to children’s hospital and tests for heart abnormalities. My perfect, beautiful girl…what would this mean?

To add insult to injury, Ella’s bili levels had gone up even higher and with my bags half packed they told me we would have to stay another night. Finally on Friday, 5 days later they let us go home. I welcomed the chaos of 3 grandparents, my dear Soren, and my family… all at home at last.

The Alberta Children’s hospital was prompt in making an appointment for us to see the genetics doctor and on Wednesday June 17^th, we had our first outing.  The ride in was stressful to say the least. The unknown lingering beyond the surprisingly welcoming doors of the hospital was paralyzing. For a healthy child like Jakob, it was paradise but for the mother and newborn whose future was on the line, it was the last place I wanted to be.

The doctor welcomed us into an exam room and began to get a bit of our family medical history – no history of genetic disorders, no toxic exposure, overall, healthy parents with no apparent signs of disease. So in this case, it would random and a one in 900 chance – it almost makes me want to play the lottery. The doctor, in her gentle way, said that usually, after physically examining  a child she can say 90% yes or 90% no. In our case, she could not commit either way. Ella had some key signs like folded over ears, a line straight across her palm and of course her eyes. She did however have better tone than most babies with down’s, she was quite alert and of course there is no history of genetic disorders in our family. As a result of her uncertainty she made a requisition for a chromosome count. People with Down’s have one extra chromosome, so instead of 46, they have 47.

We were able to get into the lab right away and they took some of little Ella’s blood…she didn’t even cry…but mommy did.

After what seemed like eternity, on June 23^rd we received a call from the Genetics specialist confirming that Ella had the extra chromosome.

This is just the short version of our life the past two weeks. What the future holds, nobody knows. We just keep going as we would under normal circumstances, continuing give Ella as much love as we have and introducing her to the world. We know very little about Down’s syndrome right now, except that the symptoms can vary widely. Hopefully on Monday we will meet again with the Genetics specialist and make arrangements to have an ultrasound of Ella’s heart and other tests specific to children with Down’s.

Please pray for Ella – that there would be little physical and mental abnormalities, and that the Lord will protect her in these early days. And please pray for us as parents – that we would process this in a healthy way and know how to best raise Ella and Jakob likewise.