Monday, February 21, 2011

200 pounds of life

  • 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.

    Last year 200 pounds changed my life- but this isn't a weightloss story, 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.

    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 Stollery Children's Hospital that were amazing and we were admitted and plunged into the strange and scary world of the metabolic disease PKU.
    My 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.

  • 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 the LLL 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.

  • 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 to recruit 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 on someone else to feed your baby- and it is one of the worst feelings in the world.

    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 knew I'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.

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

    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 PKU and 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.

    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 on facebook and find your local chapter. There are women sharing milk and sharing stories and sharing hope.


    1. An inspiration to all

    2. Absolutely an inspiration to all. Your honesty is painful and amazing and your daughter chose well, choosing you.

      Be well, Mama.

    3. Mama, you bring tears of hope, joy, grief, gratitude, and admiration to my eyes. My heart goes out to you and your daughter and the rest of your family. This precious gift we receive and give, this sense of duty to provide for our children and our fellow humans...yours is a story that illustrates so eloquently the importance of such a connection. Great big hugs.

    4. thank you so much for sharing your story!

    5. Thank you for sharing your beautiful story. What an amazing example of sacrificial love you gave your daughter. Two and a half hours every day! That's just incredible, and such a gift.

      For some reason, it has the same feel to me as donating a child's organs--in the midst of a great loss (simple feeding and your nursing relationship), making the decision to give someone else the gift of life. Much love to you all from Michigan.

    6. Wow just wow! It is so amazing the strength this took. What an amazing job you did...... Not many people would have done what you did. Congrats to you for being such a great person and a wonderful mommy. Hugs!

    7. As someone who receives donor milk to feed her own baby, I salute you and thank you. My baby thanks you. My family thanks you. People like you mean the world to people like me.

    8. You are an amazing woman! Thank you for sharing-- I hope your words inspire more giving. <3

    9. Absolutely beautiful. Thanks so much for sharing. A few months ago I first was exposed to milk sharing. The idea was odd because it was so foreign. It is so common, so normal, and so right to me now - thanks so beautiful stories like yours. You are a lovely and loving woman and mother.

    10. That is such a wonderful gift you gave to that family and it is so great that you found it to be just what you needed to get through it all for yourself also. You are a gift to this world.

    11. Thank you for sharing this. I cried. We have had over 20 moms donate milk for our twins and it has meant the world to me, we have even been told that keeping Sammy--the smaller of our twins--on breastmilk and not formula saved his life.
      What you have done by donating your milk is amazing and it is so cool to see how it blessed you too.

    12. Thank you so much for being brave enough to share your story. You sound like a wonderful mama and a wonderful woman. I'm happy to hear that another family was able to benefit from your dedication.

    13. Thanks for this story. Breast feeding my young daughter (CPKU) was certainly a challenge for me too. All of the pumping, and the weighing before and after feedings, was definitely not what I imagined it to be like. In the first month or so I had a freezer full and started the donation process, but unfortunately my supply dropped drastically soon after and we quickly used up the freezer stash. Even had to supplement with reg. formula by the end, which felt completely defeating, but I was proud I was able to pump and provide at least some until my daughter was 11 months. I haven't heard from a lot of breastfeeding PKU moms and appreciated hearing your experience!

    14. Wonderful story, I was in tears. I had a very similar story. My daughter is now 4 1/2 with Classic PKU. ( I also have 3 daughters , she is the middle child). I was a strong believer of Breast feeding. I lived in a huge overwhelming cloud that 1st year trying to keep my freezer full of milk. Weighing and measuring everything. I actually rented a scale so that I could put her to my breast and carried that thing on trips and playdates just so I wouldn't have to pump all the time. Its crazy what we do to make it through. I also donated my milk to a family that had adopted a baby and it was one of the best feeling I could get during that time knowing my milk was going to serve another family.
      God bless and hope we can meet up one day at a PKU event :)
      Franklin TN
      Mom to
      Edie 6 non
      Ellis 4 CPKU
      Evin 2 non

    15. What a wonderful story - I can relate as my oldest girl also has PKU and I was breastfeeding too. You are an angel on Earth for so many.

    16. As a 28 year old person with PKU herself, I never really realized what a mother could go through not being able to breast feed her baby. Hearing these stories makes me sure appreciate everything that my own mom went through when I was diagnosed with PKU. It is wonderful that you used your gift of abundance and shared with another child in need. One day I am sure your daughter will tell you that too.

    17. The fact that you used your situation to help another family is amazing. When my son was first born, I did not know donor banks existed. I've since learned.
      I used to work at a summer camp which holds a PKU week every summer. It wasn't until I worked there that I had even heard of PKU. Parents came to the camp and learned more about the disorder. It really opened my eyes as to how hard it is for families with a child with PKU.
      It really is inspirational that you were able to help someone else instead of, as you said "despair about" your situation. I'm glad to hear that you, your daughter, and the other family are doing well.
      If you want more information about the camp, let me know. I know they had families from all over the country attending.