Today has been a day of reflection for me. And I recently read a blog that has inspired me to share my thoughts.
Brooklyn-Monroe Scarlet was born July 16, 2013. We were so excited to be handed our beautiful baby girl. She was truly adored by all of her 5 sibling and many other family members whom patiently awaited her arrival.
The next day while enjoying happy times with baby and family we were told that during her time in the nursery Brooklyn-Monroe had stop feeding, was throwing up green, and had black stool. It was explained to me that my baby would be leaving the hospital by ambulance moving to the bigger hospital that would be able help diagnose her symptoms. The experience of joy to tremulous fear in a blink of an eye was hard on everyone.
I have a rare blood type that has caused my previous pregnancies to be high risk and require specialist care. Unlike my other pregnancies Brooklyn-Monroe was not high risk. Due to my past experiences she would still be monitored very closely for 9 month. Everything was perfect per the doctors. So you can imagine our surprise when we were informed upon her arrival into a world that I was advised she was perfectly ready to enter that she was being taken away.
The first hospital was unable to make a diagnoses. After 7 days (which felt like weeks) of testing the doctors decided to send her to Children's Hospital. Within 3 days she was diagnosed with Hirschsprung's disease. Hirschsprung's (HIRSH-sproongz) disease is a condition that affects the large intestine (colon) and causes problems with passing stool. Hirschsprung's disease is present when a baby is born and results from missing nerve cells in the muscles of part or all of the baby's colon. None of which could have been detected during pregnancy. Why the nerve cells stop growing is unclear. Some Hirschsprung disease is inherited, meaning it is passed from parent to child through genes. Hirschsprung disease is not caused by anything a mother did while pregnant. (I retrieved this information from WebMD)
On July 26, 2013 Brooklyn-Monroe had surgery, a colostomy. Brooklyn-Monroe came home August 7 after having a colostomy to wait for her reverse surgery. She went to her first follow up appointment August 27. The doctors decided that they wanted her to be 12 pounds before her next surgery and she was 10 pounds 1 oz at the time. Her next appointment was September 25. She was then 11 pounds 3 oz and the doctors scheduled the reverse surgery for October 11. We were all very excited. She would need to be in the hospital for 2-5 days and after that we would be on the rode to live a normal life. A life without ostomy bags. Just normal poopy diapers.
I hold her knowing that today we have a happy healthy baby girl. Hirschsprung's disease is something she will always live with. We monitor what she eats ( but we would have definitely had cake today) and we are so blessed that she like all foods! Fruits are so good for her diet and she loves them!
Today Brooklyn-Monroe is 1 and we celebrity life! I was really excited about giving her cake and letting her have at it but Brooklyn-Monroe is not feeling well. We went to the doctor this morning and she has an ear infection. So we will be postponing her "b"-day celebration. It is still a very Happy "B"-day!
Thanks for reading.