Tuesday, September 29, 2009

Is it time to Eat?

Abraham is doing better. He still has the NG tube in however has only required 1 to 2 feeds that way. also he seems to have ab appetite without the use of the Periactin. he is still spitting up however less than last week. He is constantly wanting to eat and is taking less time to eat. Thanks for the prayers. He appeared to have a virus and is better now. I am nervous with the RSV season coming but he will get immunized to protect from this. This vaccination is reserved for premature babies or infants with chronic conditions like heart problems. RSV is basically a cold. A baby could be hospitalized for this because babies are not able to cough up the thick mucus. I had this my first year working at Phoenix Children's as a nurses aide. i was super sick but did not require what an infant would. I floated to all the units then and in the winter I spent most of my time on the RSV unit. abe covered his face with a blanket this morning since we got up early for Bible study. I will have Glenn post it later. it is very cute

Tuesday, September 22, 2009

Quality of Life

Abraham saw Gi doctor on Friday. The doctor felt that he is well nourished and if he gets too many fat rolls on him then that is not healthy either. His recommendation was to keep NG tube in until after winter months due to RSV season. Also to give Periactin twice daily and encourage oral feeds. Abraham has had a runny nose and cough. Is he not wanting to eat because he does not feel good or because the more mature portions of the brain would be taking over such as suck/swallow, ect at this point in time. If he gets to a point where he needs a G-tube (surgically implanted tube that feeds directly into the stomach) and is a complete vegetable I question why would keep going. He is responsive to sound/touch and is interactive at times however will this also become just a memory. If he won't have any quality of life then I question why spend all the energy and effort for him to stay here on earth. At least in heaven he would his quality of life would be much better. We are not at this point yet however in May 2010 we will have a better idea.May 2010 will be when he will be 12 months corrected age, 15 months actual. No medical professional is pushing us this way as they "see many kids with G-tubes" "many kids/people with different qualities of life". It becomes the normal when you work in that environment however in the community this is not the normal. I have meet former premature babies that walk, talk and play and have a good quality of life. If my son is dependent on diapers and artificial force feeding and not interactive with his world for the rest of his life, which might be 80 plus years, then why continue with all the procedures and interventions. We are not at this point yet however there is potential that we will be faced with such a decision.

Wednesday, September 16, 2009

Update on eating

Abe is still not eating very much. He lost a little bit of weight however the xray to check the shunt only showed a belly full of gas. It is difficult to determine with him if this is neurological sign: shunt failure or a virus. I noticed a runny nose, sneezing, foul smelling gas and stool. He was very fussy during home visit with OT so she had to leave. he is better now. I think it is a virus because he wants to be held or in his bed. He feels warm but I don't show evidence of a fever. I know that fevers don't also occur. His doctor is going to call me today. She called the neurologist at Children's to discuss her findings from the exam yestersday. I really don't want to add formula in if it is something that will pass. If he is not eating well I don't see how adding this to the mix will make a difference

Tuesday, September 15, 2009

Still not eating

In the last 12 hours he has not even finished one 4 oz bottle. He did breast feed at midnight however I don't think he got that much. He sees his doctor today at 1:45. I have been trying to figure out why he won't eat: is it infection, shunt failure or that he has reached an age where a different, higher functioning, portion of the brain would be responsible for hunger messages to be sent. What if he is tube feeding dependent. I question the quality of life if he will always require to be artificially feed for the rest of his life. He is responsive however is not meeting mile stones that other babies his corrected age, 4 months, are. I am also questioning why me, billions of women get pregnant, have healthy babies without any complications. Why were we selected to put through this? About a month ago I heard on the news that a 2 month old baby was found dead a few miles from the home. The mother was in jail. That child was not even given a chance. I am trying to live a normal life, clean the house, go to church, attend social functions, it just is difficult to go any where if he is not eating. I took some friends to the airport early today and would have been able to make it the women's bible study however I chose to stay home since he will eat better with limited distractions. I could not even get him to finish the bottle. What else can I do? I can't force him to eat if he won't (unless the NG tube goes back in). I am going to try to feed him again since he is waking up again.

Sunday, September 13, 2009


abe is not wanting to eat. i am not sure what is going on. he might be getting a tooth in. if he lost weight or did not gain then formula will be added and a medication to stimulate his appetite. i really dont want either. i have stressed myself out trying to get him to eat. i am so tired of pumping.some women r lucky enough to only have to pump a few times. i have been pumping 5 to 8 times daily for over 7 months. it makes it difficult to have a normal life. going to church some times is even overwhelming. i would stop but it is the best thing for him and i have fought tooth and nail for him to be only on breast milk. majorioty of NICU mothers stop pumping/ breastfeeding long before now. please pray that abe will continue to grow and thrive on the breast milk and that i will have the endurance to keep pumping or trying to get him to breastfeed. he is refusing to eat either by bottle or nursing. neurosurgery did not feel this was a shunt failure sign. increased intracranial pressure can cause poor oral intake. he is other wise happy with some periods of fussiness. i am typing this from my phone so it may be poorly written also it is very late.