ANELISE JOSEPHINE MILLSRetrun to 22q Stories
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Anelise Josephine Mills was born March 15, 2007 in Cincinnati, OH. Anelise is my first and only child to date. Finding out I was pregnant was exciting and scary all at the same time. I could never have prepared myself for the ride we have been on sine 2006. I mentioned to my midwife that my thyroid felt enlarged and she decided to send me to an internal fetal specialist ” just in case” there was an issue with my thyroid. My first visit was at about 20 weeks. Blo od was drawn and a 4D ultra sound was performed. Everything looked fine according to the Dr. except that baby was being temperamental and not letting them get all of the pictures they needed. We were scheduled to come back in about 8 weeks and were sent on our way. My pregnancy was normal as could be no issues to speak of. At the next scheduled visit with the internal fetal specialist I started to get the feeling that it was not baby not cooperating. I am a nurse which is helpful and hurtful at the same time. Dr. Spence informed us at this time that she would like for a pediatric cardiologist to view the baby’s heart just to make sure everything is OK. Randall and I came home that night and I was a wreck. All I could think was “oh my god what if this baby dies” . We saw the peds cardiologist he did a quick ultrasound and said it was fine and sent us home Dr. Spence did not agree and sent us to have a second opinion. After another 2 hour ultrasound I was called a nd asked to come in to the office for results. This peds cardio bluntly told me that my child would have downs syndrome and the heart defect was called common AV canal. She also urged me to have and amnio…at 30 weeks! I was totally devastated again. Thought and fears raced through my head only to have Dr. Spence call and say she did not agree with either of the Dr’s diagnosis. She set up and appointment with Cincinnati Children’s Hospital Fetal Heart Program, it was not until this point that we started to see the full picture. After the an 4D scan we were told that Anelise was believed to have and inturrupted aortic arch, and large VSD a small ASD and a bi- cuspid aortic valve. They also told us that this particular combination of defects were associated with DiGeorge and Turner Syndrome. We scheduled a F/U visit in 4 weeks and began the 4 hour journey home. There were lots of tears in the car that night and life changed for our entire family. I could not help but look up every little thing I could on the internet and I would find myself sitting in front of the screen crying my eyes out as I read stories of families touched by illness in general. The nurse in me had to find out all of the details medical stand point. I was trying not to prepare for the worst but I did spend the last 6 weeks of my pregnancy wondering, worrying and questioning if I had done something to cause this. Anelise was induced two weeks early in Cincinnati and was perfect on the outside. I got to see her for about 5 min and then her and dad were taken to the children’s hospital. Randy was running back and forth between hospitals and trying to keep me informed. Anelise was scheduled for her first major open heart surgery at 6 days old. I was released the night before the surgery. Randy and I got to hold her and see her off to the OR and then we waited. Anelise got through the first heart surgery great. Her color was a little blue but she was stable. 4 weeks later we were discharged home with several medications and NG feeding tube. Anelise had no physical palate abnormalities but with almost all feedings she would vomit and it would gush out of her nose. Coming home was a huge adjustment, because I had never had children and there are no small children in my family I really had no “normal baby” experience to compare it to. If the tube came out I put it back in, when she would vomit I would clean it up and move on. Randy was and still is my rock. He keeps me grounded when my anxiety revs up. I monitored and documented daily weights and O2 sats, I stressed and waited. We knew more surgery was in our future. On Sept 13th at 6 months of age Anelise underwent her 2nd major open heart surgery and she did great! We were discharged home after 7 days. Life was back to normal with exception to the feeding tube.. I removed the tube at 9 months and began a day and night routine to get this child to eat normally an d with time, patience and support she is doing so well. She has been in therapies pretty much since birth and her dad and I have been teaching her sign language the whole time. We have regular cardiology visits and we also see genetics, immunology and endocrineology on a yearly basis. In November 2009 Anelise had two stents placed in the bovine conduit to buy some time until the next surgery. We are unsure of when this will happen, we do know that it will happen eventually for pretty much the rest of her life. Anelise loves music and playing any type of instrument. She is as normal as normal gets in my eyes. And for a little girl who doesn’t talk yet she sure has lots to say. Having Anelise has changed our family in ways we never could have imagined three years ago when this all began. Our family has been brought together and humbled by her presence. I am a better nurse, mother, woman, teacher and wife because of Anelise. I have no idea what to expect out of the future and I have learned a valuable lesson in the process. Getting what you expect, and accepting what you are blessed with are two very different avenues of thought. Randy and I have both been tested for 22q and not to our surprise we do not have it. We are hoping to have a second child in the next couple of years and I hope that when I am finished with school (very soon) I will be able to use my nursing skills and background to educate my community and help other families struggling with 22q. 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