Michelle Hobbs, a PKU patient from Seattle and mother-to-be, shares her pre-conception and pregnancy journey. This is the third post of a three-part series on her experience with maternal PKU. If you wish to follow Michelle’s third trimester progress and life experiences with PKU you may visit her blog Eat.Run.Live.PKU. Learn more about maternal PKU here.
This is my advice for any pregnant PKU’er:
Take it one day at a time.
It is easier to focus on a single day at a time. It easily becomes overwhelming, especially during the first trimester, when you start to contemplate the rest of the pregnancy. There were days and still are, where I freak out in my own mind despite knowing levels are in range. I think this stems from childhood and it being drilled into my head all that could go wrong with a PKU pregnancy. Add in the fertility struggles and the general variables in pregnancy and it’s amazing to me that I have not pulled all my hair out at this point, it will all be worth it.
Find an OB you feel comfortable with.
Make sure you have an OB that you have a good rapport with, listens to your and has your best interest at heart. Someone who shows the willingness to work with your other healthcare providers and be given a little direction.
Choose a PKU clinic you feel comfortable with.
Good communication with your PKU providers is essential. I live in Washington and go to a clinic in Portland, Oregon. It is a bit of a commute but we communicate very well over email and they happen to have “My Chart” a hospital based online portal to communicate with patients regarding blood results, messages, etc.
Be your own health advocate.
I believe in being my own health advocate, I do not expect every doctor to understand PKU to the degree I do. Doctors have specialties and if they were a “jack of all trades,” they would not be a specialist. Outside of my PKU clinic I make sure I inform my doctors about PKU and I even brought in an envelope full of maternal PKU information to my OB. We did meet with him before we even started “trying” and made sure he would be willing to work with us, my PKU clinic and up for the overall “challenge” since I would be his first PKU patient. To our surprise, 3 years later, we walked in…pregnant and he was already working with a pregnant PKU’er…he has 2 of us at one time!!
Build a support system around you.
I am very fortunate to have a very supportive husband. He even cooks for me from time to time. This has been very helpful when I have been too tired to cook myself. I also have a very supportive family and amazingly supportive friends.
Have a system set up.
However you track your phe intake, have a system in place for tracking phe, preparing and carrying formula, food preparation and knowing what you have on hand for food ingredients. Being organized and prepared is a huge help with the PKU diet.
This concludes the three-part guest post by Michelle Hobbs on pregnancy and maternal PKU. If you wish to follow Michelle’s blog, visit Eat.Run.Live.PKU.