A Dad's Perspective: Baby Steps
Another one, written by my dad about early life with a child with PKU. This post is to let people who are having a hard time with their special needs children know, that it's normal to have tough days, weeks, and months, and you're doing great:
"After our baby's PKU diagnosis and a two week stay in Children's hospital, it was back home to "normal" life. Keep in mind, we had only been parents for a month and half that time was in a hospital. This was our first child, and we were still just learning to be parents. Now we had to complicate things with PKU management.
As an infant, a child gets all its nutrients from mother's milk or from baby formula. Although there are recommended amounts, most mothers just feed their babies when they're hungry. Seems pretty simple.
For a PKU baby, the amount of special PKU formula they can have in a day is pre-calculated. You can't just make copious amounts of it (our child's "Juice" came in a powdered form for many years) and give the baby as much as it wants. The child must have a predetermined amount each day for best results. If the child is a small eater, then getting the set amount of formula into them in a day is a real challenge. If the mom wants to enjoy the experience of breast feeding, it makes it even more complicated.
How well you are feeding your baby is closely monitored by blood tests. While in the hospital, our baby was getting blood tested daily. Upon leaving we were instructed to go to a local lab to get blood work weekly. We were happy to be able to go to a lab near our house rather than to drive the 20 kilometers to Children's Hospital. The lab technicians looked at our baby and looked at each other with concern. They weren't used to finding a vein in an arm not much bigger than a grown man's thumb. After several attempts and holes in our baby's arm, and much crying (from baby and us), we took her out of there and drove to Children's Hospital. Watching them trying to get blood from our baby was one of the the toughest things I've ever had to do.
When we walked into Children's Hospital, we were greeted by friendly staff that were excited to see a healthy baby in their lab. Obviously, the lab has to tend to many sick children. Although Sam's arm was now a mess, they easily found a vein and drew the required blood. A couple of the techs down there were particularly good, and we made it a routine to go see them every Monday until Sam started school. She was a happy child and enjoyed going down to the hospital to see her friends and play with their toys. The staff always seemed excited to see this happy, healthy infant/baby/toddler/child.
Introducing solid foods was another challenging complication. Of course we weren't able to give her any animal products. That was the easy part. Everything we gave her had to be weighed, measured, and calculated to make sure she was not exceeding her daily limits. Once a meal plan was made, she HAD to eat it. The plan could be adjusted on the fly, but that was not easy for us at first. Too much math! Of course, her formula intake was modified and adjusted as solid foods were introduced. When Sam was three years old, she went through a period when she didn't like her formula. It would take us all day to give her the three small bottles she was required to drink a day. It got to the point where we were exhausted from constantly trying to feed her all day. We took her back to the hospital where they admitted her for a couple days. We tried various combinations of juices and formula to try to get her to drink. We knew that if she wasn't eating and drinking properly, it would adversely affect her brain. We felt like it was our fault. If she didn't drink, they would have to give her fluids through a feeding tube.
We were in a ward with several very sick children with monitors going off several times during the night, and nurses attending regularly. We had a couple of sleepless nights on a cot on the hospital room floor. It was the toughest time we ever had with PKU management."