We brought Pookie home to 'figure her out,' as the cardiologist had advised. Her diagnosis was meaningless to us at the time. The doctor had drawn a picture of her heart and pointed out what areas were problematic. He informed us that surgery was necessary and that she needed to weigh about 10 pounds before it could be performed. He said to take her home and learn her breathing patterns and what eating would mean for her, and he scheduled an appointment for follow-up.
Do you know what she's talking about?
I was a new mom. Of two babies. I had no idea what any of what he said meant. We took our 4 pound and 5 pound babies to a pediatric hospital the very next day to have Pookie's blood tested for genetic issues. I'll never forget how my co-workers at that hospital gawked at the tinyness of my babies. Their legs were sausage thin. Their fingers little brittle bits. I didn't know that then. They were beautiful and healthy and home. Well, not the healthy part so much. At least not for Pookie.
Within days, we were back at the hospital, this time in the ER, worried about her breathing. The cardiologist had said we would learn her breathing patterns. She seemed to breathe very fast. Any information I had read about babies was that they should be breathing slower than Pookie did. So I called the pediatrician who sent us to the ER. In hindsight, she was just surviving. She was just breathing. But I hadn't learned that yet.
Life with two newborns was a challenge. Neither baby nursed well, but I tried valiantly. At every feeding, I taped straws to myself with 2 ounce syringes rigged up with more tape to the back of my rocking chair and latched and unlatched and retaped and latched and unlatched and...it was a nightmare. At night, I would sit for an hour trying to succeed at feeding one baby. Then sit for a second hour trying to feed another baby. And then I would sit for another half hour trying to pump to fill those tiny syringes. Then I fell asleep for 30 minutes before waking up to feed one of the babies again.
And fussy! Pookie fussed. She was only happy when I paced up and down the hallway with her for hours and hours. As soon as I put her down, she would begin crying again. I was exhausted. And frustrated.
We tried different bottles to feed her. Different nipples (I eventually gave up nursing - but still did what I needed to to ensure both babies received breast milk. Pookie's milk was enhanced with powdered formula to increase the number of calories she consumed in each tiny feeding. More often than not, she didn't eat, or if she did eat, the milk came right back up all over anything in its path.)
Days were filled with frequent trips to the cardiologist to watch her progress with her weight and how her heart sustained its extra work to keep Pookie alive. By 8 weeks, the cardiologist had seen enough. He hospitalized my tiny daughter, added another medicine (I don't even recall how many she was on already at that age), and had the nurses place the first ng-tube down her tiny little nostril and into her tummy. Her heart was suffering and her weight gain was negligible. The surgeon needed her to be 10 pounds before he could successfully repair the holes in her heart. She only weighed 7.
To Be Continued...