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18 Months Later: How My Daughter is Overcoming Congenital Diaphragmatic Hernia

Baby Milan Doing Well I wrote my last blog when Milan was just 3 months old. And although it hasn’t been an easy journey for us or for Milan, she is now a happy and healthy 17-month old. Milan was diagnosed with Congenital Diaphragmatic Hernia (CDH) when I was just 17-weeks pregnant. And after losing our first child to the same horrible defect, we knew we needed to take action immediately. We sought treatment at the Texas Children's Fetal Center where we decided to undergo an innovative fetal surgery. I truly feel that this intervention definitely helped Milan to survive. For a look back at the beginning of our journey, read my previous blog here. Milan has been beating the odds since before she was born: first by doing amazingly during surgery and delivery, and then by reaching all her milestones in stride over the past 17 months. One of Milan’s biggest accomplishments was getting off all of her medications, such as Sildentifl, that was needed to help her pulmonary hypertension. She used to be on so many medications. Her last Echo test in July showed that she does not have pulmonary hypertension and her heart functions were completely normal! That was exciting news! As any CDH parent knows, pulmonary hypertension is one of the huge battles we have to face. What blows my mind too is that Milan is really advanced for her age despite the fact that she had suffered a slight brain hemorrhage while on ECMO when she was 5 days old. Since Milan spent the first part of her life in the NICU, she wasn’t introduced to the bottle until she was stable at 3 months old. She was receiving her milk through the Nasogastric (NG) tube, so learning to take a bottle was not an easy task for her. She never did suck the bottle well. So we ended up getting the G tube when she was 6 months old to help make sure she get all her nutrients. With ongoing therapy, Milan has been eating and drinking by mouth. She is able to suck out of a straw and eat anything she wants. Some of her favorite foods are rice, mac and cheese, broccoli, cauliflower and noodles. As her food intake continues to increase, her G tube intake will decrease. She will slowly be weaned off the G tube. Our hope is that she will be G-tube free in the near future, but Milan will tell us when that time will be. This sweet young lady is pretty much like any normal little 18 months old who is full of energy, love and smiles. Another remarkable moment for our family was watching Milan take her first steps. Somehow, watching our baby girl reach this huge milestone helped solidify the fact that she truly is a survivor! And did I mention our baby girl is a talker? Her favorite words to say are “Big Girl!” She has spoken over 20 words and continues to explore and learn everyday. August marked the 1-year anniversary of our homecoming, and we feel extremely blessed to have been down this journey with Milan. We feel extremely blessed to have her home with us and to be able to kiss and hold her anytime we want. Our hearts are full of gratitude to the entire team at the Texas Children’s Fetal Center and the NICU staff at Texas Children’s Hospital.  We cannot thank all of them enough. You can learn about Texas Children's Fetal Center, here.
Jenny Torry, Mother of Patient