PKU.com Community Discussion Forum Parent support cpku and mamma who wanted her child to have breast milk

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    Avatar of carrie
    clenk
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     http://researchedparenting.blogspot.ca/2011/02/200-pounds-of-life.html

    Have you guys read this? 

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      Do you know how much 200 pounds really is? If you had something that was 200 pounds you likely couldn't pick it up, and if you could carry it , it probably wouldn't be very far. Some of you get on the scale, or have at one point in your life, and seen the 200 pounds looming closer than you'd like.

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      Last year 200 pounds changed my life- but this isn't a weightlossstory, and this isn't an adventure story, this is a normal every day story being played out in communities across my country and yours. In commemoration of our daughter's birthday I'd like to share it with you.

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      Feb 23 saw the arrival of our third daughter- she was 8 pounds 3 ounces and perfect. Since I
      'd had great success nursing our two other girls (until about 18 months and 16 months)I had no worry about nursing. I enjoyed nursing – and i was proud to watch my girls grow and feel that *I * did that. I had been through the ups and downs of nursing (thrush, mastitis, blanching, etc) but i still truely loved it and the bond that it created. In fact I was one of of those people that was so pro nursing it probably irritated everyone else- I dared the women of the world to just try it because I believed in the power of nursing.

      7 days after she was born at 8:45 am my life changed. I was just finishing up breakfast with my older girls, my husband had gone back to work, my mom had already left for the trip back home and my dad was finishing a project in the basement but he was about to leave as well. I got a phone call from my doctor saying that my baby had tested positive for PKU on the newborn heel prick screen and that I needed to get into the city (40km away) to the hospital by 10:00 am so that she could be tested again and the results had to be couriered off by 10:30am. She told me not to nurse anymore as the breastmilk was poisoning my baby. In tears I yelled to my dad to come watch the girls, called my husband and then threw a couple of sleepers in my hospital bag (from birth that i hadn't unpacked) and grabbed my baby and walked out the door still in my pj's. I met with a team at the StolleryChildren's Hospital that were amazing and we were admitted and plunged into the strange and scary world of the metabolic diseasePKUMy daughter has PKU which means that her body cannot properly process one of the amino acids found in protein. This meant she needs to rely on a specialized formula for most of her diet and she will stay on that formula for the rest of her life. But she is allowed a small measured bit of breastmilk (or other source of protein) each day. The trick is to make sure she didn't get too much because that would cause brain damage- and that she didn't get too little because that could prevent her from developing properly (and also could end up in brain damage) . It sounds so simple here in black and white- but it was scary and overwhelming.

      Once admitted to the hospital they taught me how to pump and suggested that I continue pumping 6x a day – every time i gave her a bottle of formula- so that i wouldn't lose my milk supply.I was able to nurse a little (used a scale at first and then timed how many nursing mins per day) . If I could maintain my supply for that little bit of protein she was allowed I would have breastmilk for her. I pumped day and night at first and then started slowly weaning down to 5x a day and then 4x a day. But my freezer was full and every time i opened the door I felt reminded of the fact that I couldn't exclusively feed my own baby. And I've never had a feeling of helplessness like that. I had to order the special formula from the hospital and I was terrified that one day I might run out (I'm still terrified that one day i might run out). I felt overwhelmed and like a failure- I was angry and hurt and confused- I had made nursing out to be the greatest thing ever and when i couldn't have the relaxing experience I was so anxious for I really struggled with accepting our new reality. And it was a vicious mental battle- I mourned the life we couldn't have.

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    • Of course PKU also brings its own stress and i was often consumed with dealing with the illness. I didn't know what to do with this white gold. I didn't want to throw it out- I couldn't admit that I was pumping for nothing…..but what do you *DO* with it? I had looked into donating at Vancover where they have Canada's only milk bank- but i needed to pay my own shipping costs and they suggested it might be around $75-100 per month based on how much i was pumping. So I called theLLL leaders and asked if they knew of anyone desperate and they guided me to an online yahoo group and the next day an urgent request came in. There was a two week old baby in the hospital-mamma couldn't produce enough and baby had a bad reaction to formula. I was standing in my kitchen reading the email and I started to cry. I started to pray. I prayed that this baby might use my milk because i NEEDED someone to.

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    • I prayed that there was a reason that my daughter was suffering – that her 
      PKU would mean that there was enough milk to help another baby in need. Within a week or so I gave my first freezerful. I continued to pump for this family for 6 months and helped try torecruit other donor mammas. They are a wonderful family- and I felt compelled to try to help – after-all I know how it feels to have to rely onsomeone else to feed your baby- and it is one of the worst feelings in the world.

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      Pumping took me about 2 1/2 hours a day between pumping,sterilizing, storing the milk, etc and I hated it. I didn't have that time- i had three very young girls to care for and I was overwhelmed. But i didn't know what else to do. I needed to keep pumping or else I knewI'd lose the little milk I needed for my own baby girl. So every day I'd keep pumping – probably averaging 15-18 ounces most days- sometimes as much as 25 ounces a day and sometimes a little less. It wasn't a lot of milk day to day but it added up to about 200 pounds and it changed the way I saw my daughter's illness, it changed the way i saw my community and it changed the way I saw us as women in general and it changed the way I saw myself.

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      What do we live for, if it is not to make life less difficult for each other? ~ George Eliot.

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      Unfortunately the stress of our own situation was taking its toll and at the 6 months mark i started slowly weaning down. I'm no longer pumping now and my daughter will be one tomorrow. She is still getting the breastmilk and I have a small freezer stash but she'll be off of it by summer. We as a family are doing well- I believe that being a donor 
      mamma gave a reason for the struggles we've had with PKUand saved me from post -partum depression. It gave me something positive to focus – something good I could do for someone else when I wanted to despair about my own situation. It wasn't always easy and required a great deal of patience and understanding from my family and friends but I'm so thankful that I was able to be a part of it.

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      And if you want to be a part of this kind of a story- go to your local Human Milk 4 Human Babies – previously eats on feets group onfacebook and find your local chapter. There are women sharing milk and sharing stories and sharing hope.

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