Update on Addison

Addison is a wonderful little girl. She has had quite a struggle her first 10 weeks of life. Addison was born via c-section on April 18, 2010 and spent 10 days in the NICU. She was born with very few problems compared with the struggles Alexis went through. She had jaundice, thickened walls in her heart, and extra rib and vertebrae on her right side. Her biggest problem while she was in the NICU was eating and the problem continued till when she was 10ish weeks old. Addison was two weeks early and was considered a preemie. The combination of an early birth and me being a diabetic, it made it difficult for her to learn to suck on a bottle. While in the NICU, feedings would last an hour at a time and usually ended with having to push at least half of the formula down a feeding tube. By day 5, all other issues she had been dealing with were not a problem. By day 7 the feeding tube was out but we were still struggling to get her to eat. Day 10 we were able to bring her home. Up until she was 4 weeks old she was a typical newborn. Fussy at times, sleeping a lot. We still struggled to feed her. She never took more than 1 or 2 oz’s at a time. Around week 5 we switched her from breast milk to formula in anticipating of me going back to work. That was when she started going down hill. She started spitting up A LOT. Projectile vomiting too. The biggest problem was getting her to eat. She would suck on the bottle then cry and suck then cry. When she was finished, she would cry and cry like she was in pain. She was never content. She wouldn’t even let Gary and I sit to feed her. We constantly had to be moving, bouncing, rocking or walking. I am surprised we didn’t wear a hole in our carpets! I finally decided it was time to take her to the doctors. We went and were told that she probably had Acid Reflux. We started with thickening her bottles with cereal, setting her at an incline to eat, sleep and play. None of this helped so back to the doctor I went the following week. The doctor put her on Previcad and finally we had a bit or relief. After two weeks of being on the medicine (which I HATED that she had to take!) she still wasn’t improving much. The crying had stopped and she was eating faster but she still wasn’t eating as much. Off to the doctor I went again and this time the solution was to change her formula. We began giving her Nutramigen. What an improvement!!! The girl started eating! She was happy and smiling! It was such a relief to Gary and I! At her 3 month appointment, we were able to take her off the Acid Reflux medicine as well. I now have the easiest baby and it is wonderful! As of right now, she is laying on the floor in my living room, not propped up at all, playing with her baby gym! Such a difference from a month ago!

 

All through this tough time we also were seeing a pediatric cardiologist and a pediatric surgeon. I will start with the heart doctor first. Addison was born with the wall between the 2 chambers of her heart to thick. When she was born, it was 10 mm thick. The normal is 2mm. We began taking her to a wonderful heart group in Wormleysburg. At 6 weeks the wall had shrunk to 5 mm. We have an appointment in October to check it again and the Dr. is expecting that her heart will be normal.

 

Addison was also born with an extra rib attached to a half formed vertebra in her back. Its called Lateral Hemi-Vertebrae. We headed to the Pediatric Surgeon at about 8 weeks. We were seeing the Dr’s at Penn State Children’s Hospital. While there she had a complete exam to make sure everything in her little body was forming, growing and placed where it was supposed too. The Doctor even checked to make sure that her little bum hole was in the right place! Everything looked great the Dr. referred us back to our Pediatrician. From there we were sent to an Orthopedic Doctor in the area last week. That Dr had no answers. He actually hasn’t seen this in a child since he was doing his residency. He told us that we needed to see a Pediatric Orthopedic doctor that specializes in spines. Its not something that is very common but he did know a Doctor at John Hopkins in Baltimore Maryland. So we are headed to see the head honcho of Pediatric Orthopedics on August 16th. I am excited to go and finally get some answers about Addison’s development, how it is effecting her and most important, will she have to have surgery.

 

Gary and I are praying for a creative miracle in Addison’s little body! We are putting our faith in that when she has x-rays again, the rib a vertebrae will be gone! Pray with us as we head on this new experience!