Introducing Callie

My husband and I already had one child, Alissa. We had tried for years to have another child and finally after several rounds of fertility pills and HCG injections, we were having a baby.  After a very long labor, 32 hours, Callie was born on April 13,2012. Yes, Friday the 13th:) We had no idea prior to that anything was wrong with her. All of my many ultrasounds came back a normal,healthy baby. Immediately after birth the cyst on her neck was visible. At first the nurse said she had a skin tag on her neck. Skin tag, ok I can handle that. That is easily removed later on in life. However, when the doctor checked her out he informed us that she had not only one, but two cyst on her neck.  They are called branchial neck cyst. He told my husband and I that Callie would need to have an ultrasound on her neck to make sure they are closed on the inside but other then that she should be fine. At one month old my breastfed infant developed severe acid reflux. I only mention she is breastfed because breastfed infants are suppose to suffer from acid reflux less than formula fed because it is so gentle on their bellies. It would come out of her nose and mouth in projectile form. The night she turned one month old, I was in the kitchen and I heard her crying but it sounded very muffled. I went to check on her in the bassinet and she wasn't breathing. Her arms were swinging everywhere but still no sound. I picked her up immediately and noticed that her whole face was very wet . I started sucking out her nose and mouth trying to get her to just cry. Her eyes were watering and her arms went still. I have never been so scared in my life. After what felt like a life time but in reality was only a few minutes, yes a few minutes, she started crying. She was purple right before she started crying. I stayed up all night watching her and the next morning she was put on acid reflux meds and an apnea monitor. The monitor was  just in case she had another episode at night and I wasn't awake.
              When Callie was three months old she had another episode at night and my husband and I pushed for her to have an ultrasound to see what was going on inside to make her be spitting up so much. The doctor figured her valve wasn't closing all the way. Well we went to Vanderbilt children's hospital for the ultrasound. We found out it was BUT Callie was missing her right kidney. We were floored. How can a baby be missing a whole kidney and it never be picked up on prenatal ultrasounds. Of course I called where I had all my prenatals and they checked their files and said that Vanderbilt was wrong, she did have both. Hum.. Her Dr wasn't concerned and said we would recheck when she turned one and go from there. Well, at five months old we decided to change her doctor because she wasn't very organized and kept letting things slip thru the cracks. I will be forever grateful we did because that's when we finally started getting answers.
         For Callie's 6 months check up we went to her new Dr and went over Callie's history and our concerns. She immediately thought something was odd for her to have two birth defects and for them not to be connected. She got in touch with an ENT and he gave us the diagnosis that we so needed..but at the same time didn't want to hear. Our baby girl had BOR syndrome. Granted we had to go have it verified but she fit 2 out of the 3 parts of the syndrome. Off to the ENT to check our daughter's hearing which would be the 3rd part. Callie did pass her newborn hearing test but one of the things with BOR is the hearing loss can be progressive. She failed:( The ENT had hope that she failed because of a recent ear infection and that she really could hear. Callie could hear, right? She was already starting to babble. Could she do that if she was deaf? I didn't think so but what did I know. Well three weeks later, a long three weeks, her hearing was retested and she PASSED!!! YES! 90% of children have some kind of hearing loss with BOR syndrome so maybe, just maybe, she will be one of the lucky 10%. Only time will tell but for now she has 100% hearing in both ears.
     

More to come..Kidney Dr..and Genetic Counseling visit.