Jac is getting more breast milk

Jac in what appears to be a quiet alert state looking right at me

The only change with Jac today was that his breast milk intake through his OG tube was increased from 1.0 ml/hour to 1.5 ml/hour this afternoon.

He also pooped a bit today which is good - the more milk he gets the more he will poop - more fun for Mom and Dad. His poops should change soon from meconium poops to breast milk poops which should be much easier to clean.

He is stable on the high flow nasal cannulae and his TPN has been reduced to 2.5 ml/hour and he continues to receive extra lipids.

Earlier today Jac had an echocardiogram of his heart. This is part of the NO2 study that we put him on - and as soon as the ultrasound technician showed up with no warning - and not hewing to Jac's schedule - I felt sorry we had agreed to the study. The echocardiogram took about 30 minutes during which time both Jac and I cried. Alexis tried to calm me down as I tried to alm Jac down. Jac calmed down long before I did.

During this procedure Jac's nurse went to lunch - which she should not have done - as Jac got very cold from the ultrasound gel and the length of time his isolette was left open. Initially I did not know how cold he was because the ultraound gel had gotten all over his sensor and it had come loose. I fixed the sensor (or tried) and when the nurse finally came back we replaced it - and he was cold. His skin temperature was 95.0 farenheit - cold! And I was mad! I told the nurse who was attending to another baby and she seemed not to be able to understand me - and I was madder. I got a warm blanket and as soon as I did so the nurse came back - we measured his temperature and he was cold - and put warm blankets on him and his hat. I had to leave during this as I was too upset. It took 30 minutes for him to warm back up but he finally did and his temperature is stable as I write this.

I am really starting to run into the frustration of being in the NICU. I truly want to care for my son - but he needs all of the medical technology and I am fully cognizant of the fact that had he been born 20 years ago he probably would not have survived. Unfortunately the intellectual knowledge does not change how I feel - and how helpless I feel when I can't do anything to protect him.

I have always had some bugaboos with doctors and nurses - I don't really know why but I have had them since I was kid - I think they may be rearing their ugly head now. If any of you have any ideas or suggestions of how to most effectively cope with this situation I would appreciate your comments.

I don't think I have ever felt as helpless as when my son is crying because he is uncomfortable/cold/disorganized and I can't do anything to help him except to hold his head and arms him as I have been taught to do and talk (very softly) to him. I am sure that I will know this feeling of helplessness for the rest of my life as I care for Jac (and future children!) but this process of adjusting to this feeling is wrenching.

I know the doctors and nurses are doing their absolute best for Jac and they are the reason he is alive but sometimes I can't help but resent their control over our lives even if it is in the cause of making Jac healthy and able to go home. I hope these are normal feelings which other parents can empathize with.