This blog is about love despite a prenatal diagnosis, grief & healing after baby loss, hope, faith, pregnancy after loss and Hydrops Fetalis awareness.

Tuesday, February 28, 2017

I love someone rare



Today was Rare Disease Awareness Day.

Hydrops Fetalis is a rare disease and Lily was not only rare, she was unique.

Yes, the causes to Hydrops are not always rare, but I don't know for sure what caused it for Lily.

I love someone who is rare.  Lily.






Friday, February 03, 2017

CHD Awareness

Congenital Heart Defect is the most common birth defect.  1 in 100 babies have CHD.

7 years ago, in 2009, my sister and I were pregnant!  Although we lived 12 hours apart, expecting together was fun, unexpected, precious and unforgettable.  My handsome nephew was born on the first day of November,  his cousin would be welcomed earth side 13 days later.  I remember calling my sister in the hours following and how excited she was that it was a boy! She could already foresee our boys playing together and becoming best friends, and that made me smile too.  Bliss was short lived. My perfectly healthy nephew had an undetected Congenital Heart Defect.  He was fighting for his life. When I learned how critical he was, I gathered my children and kneeled down to pray with them. The vision I had of my boy and his cousin growing up together was overshadowed at that point where my sister could loose her baby boy and our families would forever be changed.  I could picture family gatherings and how forever tinted by grief they would be.  I refused to accept that my sister could endure such a pain. So I prayed for a miracle.   I prayed for God, our Almighty Healer to fix my nephew's broken heart.  The Lord answered our prayers and the surgery was successful.  We celebrated Christmas together and photographed our wonderful boys together for the first time.



During those Holidays, my cousin's newborn son had successful surgery to fix his heart issues. Praise God!

Finally, in the fall of 2010, I learned that my neighbor growing up and his wife had lost their gorgeous baby girl to CHD.  She had fought for 5, almost 6 months.  I packed up all five of my children and went to the memorial service.   The next year I learned from friends closer to them than I was, that they had lost a second daughter to the same condition.  Heartbroken for them is not even an accurate word.  They had carried both their girls to birth despite their life limited prenatal diagnosis.
This is pure unconditional love, painful and beautiful all at once.  Back then I had not thought of all the "details" of getting a prenatal diagnosis and what would follow.  Now I see, now I know.

After Lily died, I came across the page of Cora's Story on FB.  Cora passed in her mother's arms while nursing.  She was just 5 days old.  She had a Congenital Heart Defect that went undetected. Her family is now devoted to promote awareness in an effort to detect CHD with the help of pulse ox screening before babies leave the hospital.

https://www.facebook.com/Coras.Story/



Like I wrote in my last post, I am still part of the Hydrops Fetalis support group on Facebook.  I still share about our journey and I pray for the babies and families affected by Hydrops.  This is where I started following Clara Ray (Prayers for Clara Ray) her Hydrops resolved but she had CHD, other challenges and very determined parents to carry her and to fight this with her.  On their page they shared about today being CHD Awareness Day.




So today we wore red.  CHD is the most common birth defect and 1 baby in 100 have CHD.  I will keep praying for Clara Ray, Piper Jae, Lillian and so many more.  I will keep praising God for my nephew and my cousin's son's recovery.  I will pray for God to comfort my friends and other families who live every day without their children because of CHD.


"Children are a gift from God, babies are a reward." Ps 127.3