Today I have another guest post for you.  Today's post is from Eva, mom of Sajda.  She blogs at muslimdayz.wordpress.com.  Sajda was one of the girls featured in Our Beautiful Butterflies.  Today happens to be Sajda's first birthday!  HAPPY BIRTHDAY sweet girl!

Even from the beginning, Sajda was different; it started at my 19 week ultrasound where I found out that after 4 boys that I was finally having a girl! Tears of joy ran down my face only to change into tears of fear when I learned 5 mins later that something was not right with her heart. It would be two weeks later that we found out that Sajda had a congenital heart defect-Pulmonary Atresia with a Ventrical Septal Defect (a hole in her heart).

The rest of the pregnancy was hard to say the least knowing what was coming. But we prepared as best we could for what was coming. On February 24, 2011 I went in for my induction at Vanderbilt hospital. I had to deliver there because they had a children’s hospital that Sajda would be transferred to and kept alive till her open heart surgery. The delivery went well and we even got to hold her before they rushed her over to the NICU.



Welcome to the World!

The third difference was Sajda’s weight. She weighed 9lbs 6oz. She weighed 2lbs heavier than my other kids! I always say this was God’s doing because it was what she needed. This is because they ended up deciding that due to her size that she would end up having the complete repair when they did her surgery instead of two surgeries like they initially had planned on. I remember her surgeon telling me how pleased he was with the large size of her branch arteries. I also remember him informing me of the surgery and having to sign the hardest signature of my life to give permission for them to do her surgery. And most of all I remember the hardest day of my life, when they took my 5 day old baby girl to her open heart surgery.

She ended up doing really well with her surgery. And little by little she improved every day. Each day a medicine was lowered, a tube removed. And every day we got closer to going home. Finally at 22 days old, she was finally healed enough and was discharged. They gave us meds for her and she was on a special formula due to her surgery. Ironically the day we went home was March 17^th, St.Patrick’s day (She is part Irish :-) )



Sajda and mom in the hospital before her surgery

At one of her cardiology appointments later we found out her last difference. Our cardiologist had ordered a genetic test to find out if Sajda had a syndrome that caused her heart defect. This is important because it can also indicate other health issues that need to be dealt with. They expected to see DiGeorge’s syndrome because it usually has this congenital heart defect. Instead, a diagnosis of Turner’s syndrome came back. The cardiologist was surprised because this heart defect is usually not seen with it, yet she still felt strongly that the syndrome was responsible for Sajda’s heart defect. She also told us that Sajda had the Mosaic form of Turner’s syndrome, meaning that some of her chromosomes were missing the X and some were not.

Finally home from the hospital!

So far the only issues we have run into is her heart defect, which we will need more surgeries down the road to replace the conduit they placed. Physically, she has the small lowset ears, shield chest, and some of her toes are upturned.

But to us, she is the most beautiful girl in the world. She brings our family and all who meet her so much joy. And we are grateful God gave her to us just the way she is.

Sajda - 1 year old TODAY!