When Lily was first diagnosed with PKU, Dr. Hoganson asked what I wanted to do in regards to her feeding schedule. He was very open to the idea of nursing, but I was hesitant. Fortunately, Diane (dietitian) spoke up for me and told Dr. Hoganson that I wanted to keep trying. Trying is the important word here. Lily must receive some phe daily but not too much. It is a fine line, especially since the amount of phe that she receives can determine her brain development. Breast milk is something that can not be properly measured. Sure, I can pump into a bottle but there is no set amount of phe per ounce of breast milk. It is a true guessing game.
At first, Lily struggled with taking formula (Periflex Infant) in a bottle. I wasn't able to nurse her for a week, so that her phe levels could come down. The normal range for a person without PKU is under 2. After 5 days of life (strictly breastfeeding), Lily's phe level was 75! It took Lily almost a week to bring her phe levels into a PKU friendly normal range (2-4). So during that time, Lily wasn't able to nurse. This led to confusion between my and a bottle. After about 2 weeks, Lily fortunately was able to switch between the 2 with no problem. However, she did give up the pacifier!
Dr. Hoganson said that we could try it and would most likely have to make many changes along the way. Lily started her "diet" with approximately 30 phe per day. We started with me nursing every other feeding. I would take 2 blood samples per week and wait for the results. If the results came back low, then I would up the nursing. If the results came back high, then I would lower the nursing. My clinic has told me that most Moms don't nurse as long as I did with their PKU kids. I was a bit surprised by this statement and think some clinics do not want the added hassle of a breastfeeding variable. Unlike other foods, breast milk can't be measured and accounted for as easily. Every week is a little game... how much did Lily nurse? And was her medical formula enough for that day? As the numbers fluctuate up and down (nothing drastic, though) our clinic has to adjust and readjust her "diet:" plan. Luckily we have found our groove.
**Each week, we take 1-2 blood tests from Lily. Yes, I said we, but let's be honest...
it is mostly me. In Lily's one year of Life Ryan has taken 3 blood tests in comparison
to my approximate 90! To take a blood sample, we ahem I clean her heel with rubbing
alcohol and then prick her. I need to fill 2 circles on special paper. I then send it to
UIC and wait for the results. They come in about 8 days. At times, the 8 days seem
like forever.
I'll try to add a video of this wonderful process soon!
As Lily began eating foods, her phe levels increased. Lily's phe levels should be between 2-4 in order for her brain to develop properly. Over time if her levels are too high, then Lily can develop irreversible brain damage. If Lily doesn't receive any phe then she can have other developmental problems. Like I said, it is a fine line. Fortunately, Lily didn't have any problems. It was a miracle for me, because I didn't have to worry about how she was doing. Each call from Diane was confirmation that Lily was in the "norm."
We had 3 months where Lily's phe results were less than 0.5. This worried us, but Dr. Hoganson reassured us saying that Lily was continuing to stay on her growth curve. I was worried because she was delayed in some of her other areas- she wasn't doing well with tummy time, she couldn't roll over, and she wasn't babbling. The mom in me was terrified. Was all of this because of her PKU and her low levels? Dr. Hoganson and Diane again reminded me that each baby develops differently and that Lily was not the same as Andrew & Chloe. Yes, I knew this but I was still concerned.
In the end, Lily continued to nurse and her levels eventually evened out. My best advice for new parents would be to have a discussion with your clinic right away. Please work with your clinic if you want to nurse and don't be afraid to advocate for yourself and your new baby.
~Written by Kelly Nestler
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