Aaliyah Pineda – Trisomy 13
Aaliyah’s life is truly a blessing. She’s our angel. Our miracle baby. A hungry warrior.
My baby girl’s name is Aaliyah Esperanz and she has trisomy 13. Ummmm. We didn’t know anything ahead of time. I had a a normal pregnancy – no red flags.
She was born 3 1/2weeks early. When she was born, right away doctors noticed a lot of things wrong with her. But I couldn’t see her. I could only hear her cries. I saw her for like 3 seconds and they took her away. I was alone for about 3 hours. Then the doctor and my boyfriend came in.
The doctor sat down and let out a heavy sigh and basically just gave it to us. He said baby has a lot of things going on, made a sketch of her physical abnormalities. At the time he said it could be trisomy 13 or 18. But either way. She was only going to live for a few hours to a few days.
My heart broke. Being that it is COVID-19 time they only let one parent in to see the baby in the NICU for only 4 hours. I just cried. I felt like dying. She had her first surgery on her second day of life. She’s a fighter. She healed so well. Fast forward 2 weeks, we got the results on her genetics and the results were Trisomy 13. I felt so numb getting bad news after bad news. But my little girl was fighting everything. She was proving doctors wrong each time.
They started her on formula but said she was unable to drink by mouth because she would choke and her palate inside her mouth is too high. So she had a gastrosomy procedure. Finally after a whole month in the NICU she came home. We were doing bottle and gtube feedings. Little by little she was drinking more and more from the bottle. We don’t even use the gtube at all now. She drinks a whole bottle without any problems, my little warrior is thriving.
I love hearing all these other stories and gives me so much more hope as well as knowledge on the issues Aaliyah is dealing with. I can improve our lives with everyone’s story. It amazes me. Her story, her life is truly a blessing. She’s our angel. Our miracle baby. A hungry warrior. And I won’t ever give up on her. I can’t wait to read on more stories and meet other families going through the same. She is now 6 months. Almost 12 lbs. She is the most serious baby I’ve ever seen but when she smiles. It just melts your heart.