Mariya was born December 26, 2019. During my pregnancy we found out that our baby girl had a rare heart defect called Double Outlet Right Ventricle. Because of her heart defect, she would have to have open heart surgery shortly after birth. Initially, the cardiologists told us that after her surgery she would need to be in the hospital for about 2-3 weeks and then she could be discharged.
Mariya had her heart surgery on December 30th, at just 5 days old. After the longest 12 hours of my life, the surgery was a success! Mariya was in a deepsleep for several days, as they slowly weened her off certain medications. She was on a breathing machine for quite some time, lots of medications, but her chest was still opened due to swelling from the surgery. They closed her chest 5 days later. She had 3 chest tubes to drain excess fluids from her chest cavity, and around her lungs. An X-ray later revealed that she had a great amount of fluid on the right side of her chest, so they had to insert another chest tube. Her diaphragm also became paralyzed, and was going the opposite direction, causing her to breathe harder than she should have been. Another surgery was needed. On January 10th, Mariya undergo surgery of her diaphragm where the doctor explained it to me as “pinning it down like an accordion” so she would be able to breathe properly.
Mariya’s journey at the hospital continues, as we are still here, almost 6 weeks later. My husband had to extend his leave of absence from work, which is unpaid. Mariya’s time in the hospital is not only way longer than we expected but also very costly. Herjourney at the hospital has been spent in the NICU,Cardiac ICU for over a month, and most recently has been moved to a different floor, but will go back to Cardiac ICU tomorrow, as she has to have yet another procedure done. The right side of her heart is working much harder than it should, causing hypertension. Her resting heart rate is 185-195, when it should be 150-160. The pulmonary artery is narrow and they are trying to determine the best course of action to correct that. Her respiratory rate averages 95-110 when it should be between 50-60.
We also have 2 other children, Shaniya who is 6 years old and Antonio Jr who is 2 years old. My husband and I found out last week that we have to move out of our home, due to the landlord selling the unit. This is just added stress on top of everything elsethat is going on.
My husband and I are not the type to ask for help, but we are desperate. We do not really know where to start. With him being out of work longer than planned, we are in a financial crisis, not to mention all of the hospital bills are piling up. The money earned from this fundraiser will be used towards hospital bills and bills at home/rent. Any and all help is greatly appreciated!
Thank you so much!