Roller coaster

These last few days have been frustrating to say the least. We were sent back down to picu on Sunday thinking Henry had NEC. All the doctors down in picu have agreed Henry does not have NEC despite radiology thinking he does (the power of suggestion; radiology was told x-Ray was to look for NEC so that's what they found). The concerning spots would move, so this has been ruled out for Henry's bloody stools.

The doctors have now decided it is either Henry's blood pressure medication or his diet (aka fortified breast milk). Although it's most likely the medication, we still were advised to change his diet so that hopefully we are not in the hospital forever. Henry is now on Elecare formula. In the mean time, I get to cut dairy out of my diet, continue on pumping, and wait 14 days to reintroduce breast milk in case Henry was having a dairy intolerance. As some of you may know, I am a big dairy person.  I love cheese, and ate ice cream all the time while pregnant with Henry. There were several weeks where I would go through two gallons of milk on my own in a week. We believe that if Henry was intolerant to dairy he would be showing other signs. I will be discussing this further with the nurses and doctors, but in the meantime I'll be cutting out dairy.  

Jason and I are also getting frustrated by the comments of "he looks great" and "why are you still here" by the various staff.  We know they mean well, but it's hard to hear as Henry has not looked sick but we are still playing this game of figuring out his medication.  We are thankful for how well Henry looks (babies with HLHS don't have the best color to them, and we know at some point Henry will start to look blue, an indicator he is on the verge of needing his second open heart surgery).  

One of the things Jason and I get asked a lot are "let me know if there is something I can do". While we are still in the hospital, there isn't a whole lot we are needing. One way to help is to collect the tabs off aluminum cans.  Jason and I are staying at the Ronald McDonald house. These can be turned in to the Ronald McDonald house where they will recycle and use the funds to help support the houses like we are staying in. We are glad that we can stay at a place close to the hospital, but still allows us to get away for awhile and get a good nights sleep.