Sweet Baby Girl

Sweet Baby Girl

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Sweet Baby Girl

July 30, 2010 in Uncategorized

Hello. My name is Jessica. I am the mother of a sweet baby girl who is 11 weeks old. After brining my "perfect" baby home from the hospital about a week later I got a phone call from the Dr. telling me she had PKU. The next few weeks were a blur (as if they weren't already from having a newborn). We were going to the hospital every day and it was very tiring. My heart was broken when I started reading about PKU. It just didn't seem fair that an innocent baby should have to deal with something like this the rest of her life. Sometimes it is like it doesnt exisit until every Wednesday and Sunday evening rolls around and I have to prick her heel to send in her blood samples. It tears my heart to pieces to listen to her and watch her cry so hard. I stress out often about how PKU will affect her life when she gets older - school, friends, cooking, etc. Any encouraging advice from anyone would be great. I would love to meet other parents to young children with PKU. Thanks!

10 Reviews of Sweet Baby Girl

  1. Registered: Aug 22, 2007

    Posts: 0

    southbury, Connecticut

    I am a mother of twin 13 year old girls with PKU. I remember when they were born and we got the news. It was scarey and devistating. If I only knew then what I know now. My girls are as healthy as their friends. They play basketball, soccer, and are excellent students. Our children are growing up in a world where being a vegetarian or being on a special diet is very common. When they were small I remember reading an article in the PKU News. It was written my a 17 year old boy. He said the thing that has kept him strong and on diet was mother’s attitude when he was growing up. He said she had a very “matter of fact attitude”. She was not an alarmist. This made him strong. Good luck. Things will be fine.

  2. Registered: May 1, 2009

    Posts: 0

    Lee, Massachusetts

    you came to the right place for advice and encouragement, the people on this site are awesome and have a lot of experience.I don’t know what i would have done without the advice on this site getting through the first year. I know just how you feel, my son is now 15 months old now and is doing well… but the reminder of that awful phone call that so many of us have gotten still gives me a yucky feeling in my stomach..it gets better…i still worry about when he gets older, but many adult and teenage people on this site do really well. You still have a beautiful little girl and you really will get to enjoy her just like any other little baby. My son is wonderful and developing well…good luck where are you from?

  3. Registered: Feb 1, 2010

    Posts: 0

    Tucson, Arizona

    I just wanted to say my “congratulations” on your little girl! I know that you are repeating the feelings that a lot of people have voiced (including my parents, nearly 28 years ago) when getting “the phone call from the doctor”. Like the parents who have already commented have said, it will get more natural and you will learn to make the choices re. her diet. Like that 17 year old mentioned, my parents’ attitudes as i grew up made a HUGE difference in how I viewed my PKU. As your daughter gets older and starts eating more foods, I’m sure that it will begin to “click”. I graduated from High School with an academic scholarship to the University of Arizona. I now have 2 bachelor’s degrees and work as a nurse on the maternal-newborn unit at a local hospital. There are many of us who have been on diet that are doing wonderful things–some in med school, some with PhD’s, etc. Don’t hesitate to ask questions and get support from the people on this site. I’m always happy to answer any questions you may have!

  4. Registered: Sep 12, 2006

    Posts: 0

    Franklin, Wisconsin

    My name is Breanna. I am nineteen years old, and like your daughter I have PKU. I can reassure you that perfect little girl that you brought home from the hospital eleven weeks ago is still perfect. Your daughter will get her own personality with likes and dislikes, and she will develop and grow just like any other baby. My opinion on PKU has always been that everyone has something, and PKU was just what we were given.

    Despite having PKU I am a happy and healthy. I am currently in college studying nursing. I hope to someday use my nursing degree to help others who have PKU. I love to dance, bike ride, and read. Until you sit down to eat with me you would never know there is anything ‘different’ about me. I also have two younger sisters that were born with PKU (I have a grand total of eight siblings). They are eleven and two years old and some of the happiest little girls you will ever meet!

    Please use this site. There are so many parents, adults, and teens here that can be a great resource when you are scared, confused, or overwhelmed. Pretty much every parent here has gone through the same exact feelings you are experiencing now. If there is anything I can do to help please feel free to send me a message.


  5. Registered: Aug 22, 2007

    Posts: 0

    southbury, Connecticut

    Also….I just noticed your profile. My twins have Mild PKU also. It makes it much different. Do you know how many Phe’s she can tolerate yet?

  6. Registered: Jul 22, 2009

    Posts: 0

    Fairhaven, Massachusetts

    Welcome!! There is so much support out there. The resources via internet and local PKU clinics are huge.

    Our son came to us with PKU as we adopted him at the age of 5. I, and a few others, have come into the PKU world that way. We did not get that dreaded phone call. But, we were scared about handling the diet. People reached out to us and made it so much easier.

    This site is wonderful. Also think about the listserv if you have not joined already.

    Enjoy your precious time with your baby. My baby is turning 9 and I have no idea where all those years went!! My PKU son is turning 16 in 2 weeks!!! GULP! Savor the moments!!


  7. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Your daughter is beautiful! Congrats!

    My name is Katie and I am 25 living with PKU. I know in the beginning it is terrifying hearing that your baby has PKU. I promise you that your baby can live a very healthy and happy life. There are many people on here that can prove it for you.

    In the past 25 years, there have been tremendous medical advances. I remember only having one formula choice and very limited food options. There is a variety of choices out there for your daughter now as she gets older. I believe that it will continue to improve as well.

    If you ever need anything, please do not hesitate to ask. For the time being, continue to learn about PKU and how you can best help your daughter. Most importantly, enjoy your time with your daughter. Before you know it, she will be 25 too!

    My e-mail is katiemag16@aol.com if you ever want to talk!

    Katie, 25, NY

  8. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    well i had Maverick in january….he is 6mths old….i felt the same…he was perfect, i could have never imagined anything was wrong with him…i remember feeling the same as u do, just ached in my heart to know this was something he was going to have to deal with forever…and we just started him on baby cereals..the hardest thing so far with his diet….but on the upper hand, hes so smart, hes already trying to crawl, hes doing everything b4 his big brother did… (gavin is 3..non PKU) and blonde hair and blue eyes…perfect porclin skin…hes just beautiful! i would do nothing to change him!

  9. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Hi Jessica
    Your daughter is beautiful! Congratulations. The first year is the most difficult, but things do get easier. All I wanted was to fast forward and see Molly at 5, know that she was ok and then rewind and enjoy her –instead of worrying so much. Molly is almost 10 now. She is at the top of her class. She is bright, funny, and an absolute pain in my butt — like any other girl her age. I will not lie to you and tell you that she does not struggle with the social difficulties of being on a restricted diet, but I will say that it has made her a very determined little girl. Here is a link to your fast forward:

    Best of luck with everything!
    Brenda mom to Molly 10 CPKU and Jack 8 non
    Founder of Cook for Love

  10. Registered: Oct 3, 2006

    Posts: 0

    Wethersfield, Connecticut

    Hi My name is Beth and I have a daughter Payton who is 4.5 yrs old. Congrats on your beautiful daughter! I know exactly how you feel. Everyone told me in the hospital that my daughter was perfect. Then I got that call!!! The first year was actually the easiest for usbecause our daughter was mainly on formula. Then there are times that are easier and harder. Everyday is new experience with a toddler/preschool. From 1-2 yrs old Payton ate all the veggies and mixed her cereal with her formula. She loved it! 2-3 was really tough for me and watching her eat. She seemed to eat the same thing everyday. Then my pediatrician told me that if I got on really good meal in her a day that was huge for toddlers. We started talking to Payton about her PKU very young. Showed her the protein content on packages. We go to parties and back her lunch or dinner and she eats much healthier than any of the other kids there! Don’t stress about what anyone else thinks there are so many children out there with allergies or have dietary restrictions. Payton is reading by herself, loves playing outside, she is the arts and crafts queen! I stress out about certain things she does and I think is that a normal toddler or is that because she has PKU. Just remember as long as she stays on her diet and blood phe levels are good she will be fine I am sure you will be a great parent!!! Do you know how muchphe she can have? Is she classic PKU, or mild? Payton is mild. She can’t not eat meat at all but can have some dairy!

    Hang in there!

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