The Story of Lillian Part III

Things were better back in Albany.  For one we were home and only lived five minutes from the hospital.  We continued to stay with my parents, I had not been able to work and we were seriously out of cash.  We made daily trips to the hospital and we hoped it would only be a week or two at most before she was home.  It appeared no damage had been done to her through this entire ordeal.  A few days later we arrived and found her again, distressed.  She was breathing heavy again and her heart was racing.  The doctors thought it might have been a reaction to everything thus far and gave her steroids to open her airways, when that failed they determined it might not have anything to do with her lungs, but her heart.

They called for a Cardiology consult and an EKG was done.  The doctor called us in and said that her heart was severely swollen, most of the valves and flaps were broken, one side of her heart was pumping madly, while the other side did very little.  Essentially blood was just swishing back and forth between the two sides of the heart and the heart was working like crazy to pump the excess fluid out and keep the rest of her body going.  Looking at her she was white, porcelain white.  He explained the skin is not deemed vital by the body and thus had reduced blood flow.  At this point my wife nearly fainted, her response was “is there anything we can do, like surgery or something?”  He smiled and said “Yep.  We are going to give her a diuretic.”  “Huh?”
was our response.  Essentially she had too much fluid in her.  The Cardiologist explained that infant hearts are not like adult hearts, this was fatal to an adult, but infant hearts just snap back into place (and that is exactly as he described it).  She would however have to go back on the ventilator (she had only just got off it) to help regulate her breathing and get her to relax.

The next day we arrived and the NICU doctor in charge that day (the crazy guy) called us over, he wanted to show us something.  He pulled up an x-ray of Lillian’s chest the day before and there was this large white mass which took up most of the picture. “That..” he said “…was her heart.” and then he showed us a picture of her from this morning and there in the center of the picture was this tiny little white dot.  “That’s what her heart is supposed to look like.”  On the diuretic she lost over 1lb of liquid during the night and her recovery continued. 

Weeks would drag by and we still couldn’t bring her home.  She had mysterious high blood pressure that didn’t go away and took time to try and figure out the right dosage of medication.  My wife went in twice a day to nurse her and hold her.  She quickly outgrew the NICU incubator and they had to get her a regular bed from pediatrics.  She also got the isolation room all to her self.  Because she was unique (usually 1 month olds are not in the NICU unless they are pre-mature), they had to actually find her pj’s, a mobile and a bouncy chair.  She spent many a day traveling with the nurses to visit the other babies.  Finally a month after she was born, we finally got to take her home.  And that would begin yet another journey with her.

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