DEECON MOVES INTO A COTT

What a big boy.. we came into the NICU today and had to look twice. Where his incubator stood, there was a cott in its spot. It was a immediate sense of pride, my little man was now 1855grams which is 4 pounds 1 oz.. I so look forward to bath days to find out how much he has grown.. With each weigh in he growns so much, which in turn keeps his feeds increasing. He is now at 32cc's every hour and a half. They have been making his feeds larger at the same time as putting it in his belly over a shorter period of time. This is called bolus feeds. It helps Deecon prepare for regular full term feedings every 3 hours. The doctors have now challenged Deecon by finishing his Aldatizide meds for his fluid on his lungs as well as his sodium shot. Deecon did not like this challenge at first. He fell into a pattern of desaturating a lot, which made them have to increase his oxygen from 50 to 120. They say that this is just a rebound from the major medicine changes recently made, especially him not getting his Aldatizide. They say that it gets worse before it gets better, so we will patiently wait for the better to come. Deecon has previously been at high risk for a disease called Cogenital Adrenal Hyperplasia, it is an autoimmune disease. This is one of the 26 disorders that are tested in the new newborn screening tests. He had a high count during the first screen and we were awaiting the second test results. In my heart I feel that it is negative, he does not show any signs of this disease. So we waited for almost a month patiently for the results and again the second test came back positive. They still have not made a confirmed diagnosis, they now are testing him for a third time.. They are thinking as I am that he does not have it. This testing system can give false positives, and I am in hope's that my son is one of them. Sometimes babies are stressed out and they can produce high readings for this testing. So in another month we should get that last final negative result. I can't wait. This disease effects one in 10, 000 babies and my son is not one.. Some good news is that Physiotherapist came in today and said that his muscle tone and movement looks good and he is making his milestones so far.. she will continue to examine him and make sure continues to develop according to his age. Today was another bath time, boy do I love bath times. He is just a doll in the bath tub. He loves it soo much and is so awake and aware during and after. We usually kangaroo to get his temperature back up. Rub a dub dub.. my baby loves his tub:)