LAUREN ~ 5 YEARS OLDRetrun to 22q Stories
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My little bean has 22q11.2 deletion. We found out she had something wrong during a routine ultrasound at 25 weeks. My world was turned upside down. They found her heart defect of Tetchtoloy of Fallot. From there, we went to a fetal specialist where an amino was done. Genetic testing came back for 22q. From that point, I was scouring the internet to find out as much information as I possibly could. It was scary, and there were not many resources.
Little Lauren made her appearance early at 34 weeks due to my getting pre eclyampsia. She came out at 3 lbs. 14oz and breathing on her own. She went to the NICU and was placed on oxygen. That is when we found out her other problems, a sub mucosal cleft palate, one kidney, and low calcium. We had many ups and downs. She was released one month after she was born, but it was bittersweet. She ended up vomiting through her nose and aspirating all her feeds. Back to the hospital we went.
She was admitted and they did a nissin and placed a g-tube. Surgery went very well and she did great in recovery, until they moved her. She then coded 3 times in the next 4 hours. Finally she was stabilized in the cardiac unit. She came home 4 weeks later. She was on apnea monitors and oxygen until 6 months of age when she was big enough for surgery. She only weighed 10lbs at 6 months.
After heart surgery I was amazed at how fast she thrived. She began to gain more weight, she began to roll over and crawl then walk by 14 months. Today she is as healthy as she can be, she weighs 35lbs at 5 years old and is small for her age, but it does not stop her. She had speech delay, but now we cannot make her quiet!!! She loves to tell stories, play with her brothers and sister, and go swimming.
The road has been hard and long, but I would never trade her for the world. She has shown me strength that I never knew existed. This year we will conquer starting Kindergarden!!!