Jinxed Again

We’ve had quite the few days.

We’ve gone from getting ready to bring Brinnlie home to now looking at a few more weeks.

Last Thursday I went to spend the afternoon and evening with her and feed her.  When I got there the nurse said that they had taken a chest x-ray ‘cause she had been breathing fast and needed more oxygen.  They found fluid in her lungs and thought that she had aspirated when eating or because of re-flux, which put her at risk for pneumonia.  So they took labs to check for an infection and they were all normal and were going to watch her and check again Friday.  Same on Friday.  Come Saturday I received a call from the NP telling me she was doing okay, but had to go up again on oxygen.  Then he said that another issue had come up…the nurse that day had given her one feeding of breast milk, not realizing that it wasn’t mine.  How in the world this would happen and how she’d get it mixed up, we don’t understand.  To make the story short, Brinnlie has to be tested for communicable diseases that may be transferred through breast milk and the “donor” mother tested as well.  We have been reassured that the risks that something could be transferred are slim, but there’s that chance.  We’ll receive results in a couple weeks.

Sunday the NP called to give an update and had some concerns about Brinnlie eating and not eating and still needing more oxygen.  She asked if there were a possibility that I could go stay for a week to see if she would steadily eat for me and me learn the just of the NG tube so if her eyes vascularize before she takes all her feeds from the bottle, she could come home.  So we had been making plans for this to happen this next week.  We also voiced our observation that when Brinnlie had her fractures but they weren’t discovered yet, her respiratory and heart rate went up, causing her to need more oxygen too.  The NP made a note and said they’d check it out.

Today.  Call from the NP saying they took more films, found no more fractures, but did see that Brinnlie’s lungs were still inflamed and had more fluid than before.  They are going to do an EKG and sonogram of her heart to determine the extent of Pulmonary Hypertension.  The way I understand is the pressure in her lungs is higher than the rest of her body, making it hard for the heart to push blood(oxygen) through, which causes the build up of fluid, which explains her need of more oxygen.  Her need for more oxygen is hard to regulate because she can’t have too much or too little still because her eyes are not out of the woods yet---catch 22.  They started her on meds to help regulate her blood pressure in her lungs, which will over time help clear them of fluid…it may take a few weeks or a few months.  For now, our time table of home has increased and we’re back to the waiting game, coming down from our high on the roller coaster ride we’ve been on the past 5 months.  My stay will be put on hold until she gets a little better.

If I sound a little dire and to the point, I am.  Honestly, I’m having a rough time.  If it’s not one thing, it seems like it’s  another.  I’m trying and am hanging in there the best I can.