It is so hard to believe that five years ago today our journey started. Oh how our lives have changed. I certainly do NOT take anything for granted anymore. There were so many things that had happened and have happened to make me realize that we don't have the control over our lives that we think that we do.
My baby girl Kristen Marie Taylor was born today. Five years ago. We don't even have an accurate birth weight for her. I do know that her blood type is A+. Only because everyday I would ask, How much does she weigh? I had no idea how serious Congenital Diaphragmatic Herina's (CDH) were. He right lung was a 1/4 of the size that it should be. Her pulmonary hypertension put her on ECMO (heart and lung bypass) for 12 days. The ECMO along with the pulmonary hypertension caused her kidney's to fail. A pic line caused a blood clot in her left leg, causing a small stroke in her visual portion of her brain. The ECMO caused multiple brain calicfications. Her PDA being open caused her to stay on high frequency ventilation for almost a full two months. It also caused her kidney's to work harder until they fixed it. Within that week after the heart surgery she came off of ventilation, and dialasis. So excited over PEE!! LOL! The ventilation caused many years of feeding issues. The feeding issues caused failure to thrive threatening us with the possiblility of G-Tube feedings. We dealt with many issues around reflux (GERD, common with CDH). She never crawled, she butt scooted. Her hearing was taken from her when she about 6 months old, risks with ventilation and ECMO and CDH. We need to remember that ECMO saved her life. It may have done damages, but it gave me my miracle. She was implanted with a cochlear implant at 21 mths old. She eventually walked at almost 23 mths old. Her depth perception made her very cautious. She had troubles changing from one area to another when looking at carpet to laminate. She was diagnosed on the Autism Spectrum Disorder. I wished soooo hard to know, What is she going to be like at 5??!! I just wanted to rush the time so I could know! Well here we are FIVE years later.
Kristen is registered for Kindergarten in the fall. She is still working on speech sounds, but she is signing up a storm! She is pretty much always happy. She gets in trouble just like any kid does. She is a walking miracle. She is loved by her brother's, sister, mommy, daddy, and friends and family a like. Everyone around her is so proud to see the amazing changes that she has been making lately!
My little girl is FIVE!!!! Happy Birthday Kristen!
http://bobdoble.blogspot.com/2009/04/kristens-run-with-cdh.html
This link above will show a previous post that show's Kristen's story.
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