Saturday, April 25, 2009
Abe is not tolerating his feeds, he is having low oxygen and reflux. I have been telling them for a few weeks that he was refluxing however no one listened to me. The responses varied from, "yeah he probably does, most babies do" to "well when parents watch their baby for 6 hours a day see a lot of things". I noticed in that he coughed and had milk in his mouth during his feeds. There was inconsistency is in administering the feeds from 45 minutes to over an hour. Finally the doctor ordered for them to be over an hour. Now he is on continuously, 21 cc per hour which is still 16 oz daily however he won't get the full/empty stomach feeling. This will make it more difficult in the future for him to wake up to eat. On a more positive note he can do Binky training twice daily now if he is awake, his respiratory rate is lower than 60 breaths per minute and he does not have any signs or symptoms of respiratory distress. I am so concerned that he will require tube feedings to eat. I envision that he will need a permanent tube and won't be able to eat like a normal person. What is the quality of life then. We don't know this yet however he is now 38 weeks gestation and I am expecting to see what other full term babies would be doing. I am also worried that he will be over 6 feet tall and weigh over hundred pounds as a teenager. How the heck will I take care of him when he gets to this point. What if Glenn is deployed somewhere. Yeah babies and small children are cute even with special needs however the reality is he will grow up and some day be a adult. Will I have a life long commitment to care for him and will I be alone to do this? He has a PICU (pediatric ICU, not NICU) nurse today and reassured me that he sucks on his binky and took the 5 cc of milk by mouth. She said some babies can not even do that. She saw this as a good sign. She also mentioned to take small steps. Glenn is holding him right now.
Posted by Karen Goddard