Maternal PKU: Weeks 1-8

This is part of a series of posts related to Maternal PKU. These will be post-dated since pregnancy made me a bit behind on my blogging. I am not a medical expert and this is my experience only. Pre-pregnancy I was already on Kuvan for about five years with a tolerance of 30 grams protein/day. (Pre-Kuvan my tolerance was about 500 mg phe/day or 10grams of protein)

~Positive Test!~
The entire time my husband and I were trying to get pregnant, we sent in blood levels every other week. Then one Saturday in early December, we saw a positive test. We were officially having a baby! After the joy and excitement, I started to freak out a little. Thanksgiving was only a week earlier and I was fairly certain I had done some "cheating". We took a level the day after we found out I was pregnant, and it was 2.5 mg/dl. I was safe (granted, I didn't know that until almost two weeks later because the results took forever to get back!).

First thing Monday morning, I e-mailed my geneticist and called my OBGYN.

The geneticist was apparently out of the country when I tried to contact her, so it was over a week before I heard back. As soon as I did, she scheduled an appointment with me the next day (at about week 5). At the appointment, we went over my levels, she requested weekly levels instead of very other week, she ordered another Amino Acid panel, and we discussed having follow up appointments every other month. We also discuss morning sickness and the important of keeping my formula down. At this point, I had no issues yet, but she suggested we discuss it with the OBGYN and make him aware.

We had already told my OBGYN about PKU and he had basic information about Maternal PKU. We scheduled an appointment with the OBGYN at what would be 6 weeks. For the most part, it was just a typical appointment anyone pregnant would have. We were already able to hear our babies heartbeat!
He went ahead and prescribed Ondansetron (Zofran) just in case I needed it for morning sickness later on. The only  other PKU-related issue was discussing and confirming that the OBGYN and the geneticist were communicating with each other.

~Morning Sickness~
A week later the Zofran became an essential part of life. Morning sickness is a deceitful name. I was sick all day long. I started taking Zofran and the second it wore off, I would feel sick again.

In hindsight, I learned a few things. First, the prenatal vitamins I was on made me sick. I switched brands a few months later and felt better. Than I switched back to the past vitamin and was sick immediately. I guess I had never noticed before how often I would get sick within about 30 minutes of taking them. It may not be a bad idea to try different brands if you are having problems.
The second thing is that formula almost always made me feel sick and the Kuvan did as well. This made it very difficult to keep food down. I learned to time the formulas well- to be sure to take my formula at least an hour after taking the medicine or an hour before it wore off, or else the formula would be lost! (This continued from Week 7 until Week 19). and I learned to avoid certain foods (tomato sauce on anything for example), and managed to keep formula and food down most of the time even if I still felt ill. It was a long journey!

Levels (mg/dl)

Week 2- 2.1

Week 4- 2.5 (Positive Test)

Week 5- 4.1

Week 6- 7.7 (no idea what happened there?)

Week 7- 5.1 (morning sickness started)

Week 8 - 4.6