Taking Marigold's Phe Levels

     I've only taken Marigold's levels a handful of times myself, but not once has she even so much as whimpered when I've taken them! I've had a few parents ask me how I do it so I figured I'd make this post. I'm going to go through and explain everything I use even though any parents of PKUers would know what most of the things are, just incase anyone who doesn't have first-hand experience with PKU or a parent who hasn't yet taken a heel prick is reading!

    

                                       

                  Pictured above from left to right are a blood lancet, gauze, a Band-Aid, and an alcohol wipe.  

     The first thing I do is get all the materials together:

 

 

1. Blood lancet
2. Gauze
3. Band-Aid
4. Alcohol wipe
5. Blotter card
6. Pen
7. Envelopes
8. Rice heat wrap
9. Bottle if Marigold is grumpy

  The first thing that I do is warm up her foot with a heat wrap that I made myself...

                      

       This wrap was really easy to make! I just bought some flannel material and cut it into a rectangle that was about 2 feet by 1 foot. Then I sewed the bottom and two sides of it together while it was inside out. After that I sewed through the middle three times to make four sections so that the rice doesn't all fall to one side if I'm using it for something besides her heel pricks. Then I sewed along the top, just leaving enough room on top of each section for a funnel to drop the rice in. I added the rice next, then sewed along the top again. There may have been an easier way to make this but sewing is not a skill of mine!


     So like I said, the first thing I do is warm up her heel with a heat wrap. This is done to get the blood flowing better. Every time that I've taken her heel pricks I've only needed to fill one space on her blotter card! I think that warming up her heal well help a tremendous amount! After her heel is warm I wipe the area that I'll be pricking with the alcohol wipe and use sanitizer on my own hands.

     Before I prick her heel I have my husband hold her so that her back is against his chest, and she is sitting on one arm while his other arm is on her belly/chest supporting her.

                                   
               This is the closest depiction of how I have my husband hold her that I can find in a photo of mine.

If she is in an extremely grumpy mood I have him feed her with a bottle while I do the prick. It's rare for Marigold to be grumpy but it does happen! It helps her to not notice what I'm doing while she is already in a bad mood. If she is in a good mood I smile and talk to her while I do it.

    Next I use the lancet on the inner or outer side of Marigold's heel. I wipe the first drop of blood with the gauze because the alcohol from the wipe is still on her heel. I let the next drop fall into one of the circles on the blotter card...


                                


     The circles are on the right-hand side of the card. The goal is to fill about 3/4 of the circle. I've been told that it is perfectly okay to not have the blood all inside the circle, that they are just a guideline, but I do my best with a wiggly baby to get the drop in the center!

     Usually Marigold's blood is really flowing because I warmed up her foot, so sometimes I will fill a second one just because, but if I choose not to then I have my husband hold the gauze on her heel, adding pressure to stop the bleeding while I get the Band-Aid ready.

      After I put the Band-Aid on I set the blotter card to dry for 2 hours and write the time and date that I took the sample on the card. Then I put it in a waterproof envelope, then in an express envelope from the post office.


                    
                                       Waterproof envelope and express post envelope.

    
      So here is a list of steps to take Marigold's phe levels:

1. Gather materials
2. Warm heel
3. Get her into position
4. Wipe her foot with alcohol/sanitize my own hands
5. Prick her heel with the lancet
6. Wipe the first drop of blood with gauze
7. Let the second drop fall into a circle on the blotter card (continue this step until a circle is about 3/4 full if the first drop isn't enough)
8. Apply pressure to her heel
9. Cover the area that I took the sample from with a Band-Aid
10. Let the blotter card dry for 2 hours minimum (Not in the sun!)
11. Write the time and date on the card
12. Pack in envelopes I was given from her clinic and mail it out!

Finding Support

      Exchanges, phenylalanine, blotter cards, µmol/L... Phenylketonuria. None of these words meant anything to me two months ago. Now they're a part of my daily life. Even though Marigold hasn't started eating solids yet I look up the phe content for everything I eat, and everything that she might eat one day online or on an app I found on my tablet. I found a Facebook group where parents are always posting foods and their phe content, I really need to take everything from that group and make a list out of the posts! Marigold's clinic really hasn't proven to be helpful! My husband and I are considering moving as soon as we can just to have the opportunity to work with a different one. The people who work there speak with such a thick accent that it is impossible to understand them, and they talk down to my husband and I constantly. I'm not sure if they think that we are uneducated since we're in our twenties or what but we both are equally if not more educated than the nurse and dietician. I reminded them at our last meeting that I understand all the biological aspects of PKU perfectly thanks to my education but they continued to treat me like a complete moron. Like I said, we're hoping to move!

     The biggest help has definitely come from the Facebook groups I joined! PKU is so rare that I don't know anybody who lives near me who has experience with it. Social media has allowed me to come in contact with older individuals with the condition and parents of children with it as well. That support has helped more and been more informational than anyone at Marigold's clinic! I definitely recommend looking for support from people with first-hand experience with PKU!

Sweet Girl

    How on Earth are you two months old already? I can't remember what it was like the first few days you were home, it seems like so long ago.... but at the same time it feels like you were born just yesterday. I am so in love with you, I can't imagine my life without you now. You make me laugh every single day, and my life is so much happier with you in it. I've been meaning to write you a note for a while but I've been busy cuddling you and soaking up babyhood. I just  cannot believe that you aren't a newborn anymore! How does it happen so quickly? You seem so big to me, you're a whole three pounds heavier than when I first met you! Then we go out in public and I see other babies and realize that you're still my little baby, and that makes me happy. You are perfect in every way baby girl. You love to eat and snuggle, you don't cry when I take your heal pricks, and you wake up smiling every single day! You are swinging right now, all wrapped up in your pink blanket that has hearts and zebra stripes on it. You're fast asleep and so beautiful, I still don't understand how I made something so perfect. I'm going to wrap up writing this and go kiss you, I love you.

The Diagnosis

     My husband and I were so excited to take Marigold to her first doctors appointment! She was 6 days old and absolutely perfect. She never cried, slept more than expected and made nursing about as easy as possible. When we got there we were told that she had gained plenty of weight and looked healthy! The doctor told us that we were free to go, but that she wanted us to go re-do her heal prick test because a result had come back abnormally, but not to worry because it was extremely common to get false positives for the test she was referring to. I don't think that she even told us what Marigold had tested positive for, she didn't seem worried so I wasn't either. We went and re-did her heal prick, she didn't even cry much to the nurses amazement! Then we were on our way home for what would be a week full of cuddles and not worrying for a minute that something might be wrong with out little girl.

     When Marigold was 12 days old it was time to take her back to the doctor for her 2 week checkup. This time I had to go alone because my husband had gone back to work. She had gained more weight and the nurse joked about how strong she was before the doctor came in. I had played in my mind once or twice how it would go when she told me that the test she had us re-do came back negative and that all was fine. That isn't what happened though... Right when she walked in with a stack of papers for me I knew what she was going to say. All of a sudden she was using words that I didn't understand, and talking about doctors, nurses, dieticians and geneticists I would have to see that week. All of a sudden my world was upside down. I remember kissing my little girl and crying after the doctor left the room and texting my husband "She has PKU...".

Welcoming my flower child.

 I had not-so-patiently been waiting for you to make your arrival for weeks. I was walking everyday that was above 35 degrees, I was bouncing on a dumb exercise ball, I had eaten Chinese food... I'd even tried Castor oil. I was convinced that you weren't going to make your debut without medical intervention. Your dad and I decided to take advantage of what was hopefully going to be one of our last movie nights alone and rented Catching Fire and Dallas Buyers Club. I couldn't really focus, I was exhausted and couldn't get my mind off of you and wondering when you were coming. I was having very infrequent contractions, but had been for a week so that was nothing alarming! They started to change though, not any more painful, just different. I just wanted to be left alone, so your dad laid down on the floor while I took up the whole bed and half-heartedly watched Catching Fire. Your dad was getting annoyed because he had to work in the morning and I was keeping him from sleeping, but I knew deep down that he would not be going in the next day. The contractions went away and I let your dad go to sleep. That's when I noticed that I was leaking a little bit of fluid... Again, nothing that seemed concerning, it didn't seem like much of anything at all. I told your dad and he too was not worried since he'd heard it before. He went back to sleep and I just laid down, restlessly getting up to check for any changes every so often. At some point I fell asleep, but it couldn't have been for more than 20 minutes or so. I kept convincing myself to wake your father up, then would convince myself that it couldn't be my water that had broken since there was so little of it, and that I could not be in labor since I hadn't had a contraction in hours. I decided to wait until the sun came up and then go in if anything changed....

Nothing changed but I decided that we needed to go to the hospital to see what was going on. The nurse was very rude and quite honestly I'm still waiting for that first hospital we were at to send me a survey so I can express my mind in a non-crazy way. The doctor told me there was no way I was in labor, but guess what! He was wrong. I made him test for amniotic fluid and that is when we found out that you were on your way!

We left in the early afternoon for the hospital that I would be delivering you at. It was a busy day in L&D! I was put in a small side room until a large room was ready. They hooked me up to a machine to monitor your heartbeat and went to tend to other patients. I listed to country music while your dad read, we both assumed it would be a while before we met you. The doctor asked for me to be checked soon after, and I was already at 4cm! Everyone figured things would move slowly still though with you being my first baby and all. Around 3 a delivery room was finally ready for us. I went for a walk first and that is when I had my first really painful contraction. Your father and I quickly rushed back to the room, I made him blow up that exercise ball again and tried bouncing but it didn't seem to help. The nurse checked and I was at 9cm! I moved around, and kept ending up in the bathroom or leaning against the bed during contractions. The nurse asked if I needed to be checked and she was surprised that I was ready to go! I pushed on all fours for 5 minutes or so until the doctor got there, then for 20 minutes and you were FINALLY here! You, Miss Marigold Kathryn were born at 4:00pm on March the 15th of 2014! I will never forget the look on your dad's face, or how warm, wiggly, and beautiful you were.