PKU.com Community Discussion Forum Parent support Breastfeeding and PKU

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #8641
    Avatar of Nicole
    AceMommy
    Member

    My son is 10 days old and we have been living with PKU for three days:)  I truly believe the hardest part for me right now is the fact that for the first 8 days of his life he was pretty much a professional breasfeeder!  I felt so proud of the fact that he was getting what he needed and gained a full pound in one week.  According to his blood levels he only needs 10 ounces of Phenex-1 a day at this point and I was instructed to begin each feeding with 1 ounce of Phenex and then allow him to breasfeed as long as he wanted.

    Giving him that first bottle was traumatic for me, all you hear for nine months is how breastfeeding is the best gift you can give your baby and how it is going to be a lot of work and it is something you and your baby both have to learn.  I don't want to brag:)….but it was easy for both Ace and I and I feel like that joy has been taken away.  I also know that he needs the Phenex and I am MORE than happy to give it to him.

    I am determined to breastfeed Ace as long as he wants to and I am hoping that can be a year.  Has anyone out there done it?  Pumping is completely new to me and I just had it set in my mind that I was never going to have to do it.  Before PKU Ace would breastfeed for 15-20 minutes every 2-3 hours.  Now he has the formula and only feeds for about 5 minutes.  I don't want to lose my milk.  How often should I pump?  Should I always let Dad or someone else give him the bottle so he doesn't get confused.  Are there any bottles out there that will help avoid nipple confusion?  Please help…..

    Thank you!

    #8642
    Avatar of Breanna
    BreaMarie91
    Member

    My name is Breanna. I am eighteen, and I have PKU. First of all congratulations on your new baby boy! Try to enjoy him the best that you can, because although I know times might be trying right now he'll only be little once. If you ever have any questions please feel free to ask, and I will try to help when I can.

    I am sorry that I cannot be much help with this topic,  but my mom has breastfed my two younger sisters who also PKU along with our six siblings who do not have PKU. She also teaches child birth education classes as a living, so this is by far not a foreign subject for her. If you want to send me a message I can give you her email address if you would like to talk to her. I am sure she could offer you plenty of ideas both PKU and not PKU related.

    Take care, and as always let me know if there is anything I can do to help.

    #8643
    Avatar of Nicole
    AceMommy
    Member

    Thanks for the reply.  You were right on about trying to enjoy him.  I feel so guilty because I keep thinking back to the first eight days when he didn't have PKU.  In my head I know the truth, but I just feel like I let him down.

    I would love to talk to your mom….she sounds like a very strong woman!  Please give her my email:

    daisynh@hotmail.com

    Thank you!

    #8644
    Avatar of Breanna
    BreaMarie91
    Member

    I know it must be hard right now, but please know that there was nothing you, my parents, or any of the other parents here could have done to prevent PKU. This is just one of those things that happen, and we have to make the best of our situation. In the end as Ace grows up his PKU will be nothing more than a special diet. He will be able to do everything that his peers can do and maybe even more!

    I sent my mom your email. If she doesn't email you right away you can email her at .

    Take care!

    #8645
    Avatar of Grace
    gracie1605
    Participant

    I know just how you feel my son is now almost 9 months old and we found out about his pku when he was 5 days old it was the worst call ever and the two days after that he was only to have the pheyl free formula and it was the worst two days…I had a realy hard time with not being able to nurse like i wanted…i nursed my 5 year old until he was 14 months and i was happy to be able to do this with my second son…I never thought there would be a reason i would not be able to give him this wonderful head start on life..

    .My son has classical pku it son't like your son has MPKU and not CPKU my son't level on only breast milk was

    #8646
    Avatar of Grace
    gracie1605
    Participant

    I know just how you feel my son is now almost 9 months old and we found out about his pku when he was 5 days old it was the worst call ever and the two days after that he was only to have the pheyl free formula and it was the worst two days…I had a realy hard time with not being able to nurse like i wanted…i nursed my 5 year old until he was 14 months and i was happy to be able to do this with my second son…I never thought there would be a reason i would not be able to give him this wonderful head start on life..

    .My son has classical pku it son't like your son has MPKU and not CPKU my son't level on only breast milk was

    #8647
    Avatar of Grace
    gracie1605
    Participant

    sorry i did that on accident

    well anyway his level was 26 when we went in when he was 5 days old…It is good you got a least a good week for him to establish nursing, so i hope you are able to keep up the nursing i would get as much as you can in the freezer, get a double breast pump and you might want to consider investing in one of the medela ones they are expensive but I think it was worth it for me…I would suggest after he is done nursing at each feeding pump for about 10 minutes to each side or the double breasted pumps are the best…this is really important in the next few weeks and really months because you are building up the supply that you need and what you will have the next few months and if you don't pump your body will not make the milk you want to have and it is soo hard to try to get yourself to pump more when he is older now is the best time for this…it is great he will get to nurse each time they had me alternating feedings and my son lost interest in the breast quickly, i think he was just too lazy and just got really frustrated when it was not a bottle and it was heartbreaking for me. I pray you will not have that problem…but i don't really think you should. As long as he is still latching on well and drawing you mild out I think you should be ok. You sound as though you have a really good outlook and are very optamistic and being diagnoses so soon I think you need a round of aplause because I know I did not take it that well…good luck with everything I know it will work you for you and your beautiful boy…I hope this helps some

    #8650
    Avatar of Nicole
    AceMommy
    Member

    Gracie,

    Thank you for your reply…..you made me realize that I am lucky to have established good breastfeeding with Ace before we found out about the PKU.  I am truly sorry that the joy of nursing was taken from you, I never thought I would enjoy it as much as I do, nature is truly amazing.

    Thank you for your advice about the pumping.  I do have the Madela double electric pump but I have been afraid to pump.  The community nurse told me that if I pump too much I will become engorged.  And I know that I have read that if woman exclusively pump they will eventually lose their milk.  I guess I have been hesitant because I don't know how much and how often to pump for sure and I don't want to mess things up?????

    Sometimes after Ace has his ounce of Phenex he nurses for 12 minutes, sometimes only 2 or 3.  Should I pump after every feeding or just the really short ones?

    Also, do you have any advice on giving a breastfed baby a pacifier?  We haven't given him one yet and he really only cries when he is hungry but I also think he really likes to suck and a pacifier would comfort him?  But now that he has to have a bottle I don't really want to add a third type of nipple into the mix.

    Thank you so much for your reply…..I look forward to getting to know you!

    #8651
    Avatar of Grace
    gracie1605
    Participant

    I am glad you have that pump it really is the best, I would say if he is nursing 12min on each side you don't need to pump but I would if he is not feeding 10min on each side, ot at least on the side he did not nurse on. I would not worry about engourgement with this situation I mean you may get engourged but then you can pump and freeze the milk, the milk is good for 3 months or longer in a chest freezer.

     I was praying to get engourged when my son was like 2 months old because I just couldn't produce enought because i wasn't pumping like i should have in the beginning…I know it it really hard to pump sometimes when you are so tired… But given my experience if pumping and nursing is really important to you i would try as hard as you can…in the end if you can't try not to be upset and feel bad you gave him still an awesome start for as long as you were able to.

    I agree if you pump exclusively you will not produce milk and you will dry up..so defenetly let him nurse as much as he wants as often as you can and then pump after he is full…Honestly I did give my son the pacifier and I think if I went backn now I would have waited in my situation i would have rather he nursed or got all his sucking from me to encourage and create my supply…you could give him one but in the best interest of nursing because you already have to give him nipples for the bottles I might wait. I know my son did have nipple confusion and became lazy so I had to put even his breat milk in a bottle…best of luck… 

    #8657
    Avatar of Rachel
    dmw19
    Member

    Congrats on your baby boy!!!  He is precious!!!  I just wanted to tell you that I know exactly what you are going through.  My son, Dylan, was born on Oct 5, 2009, and it was the happiest day of my life!!  I never really felt like I would be good at breastfeeding, but I decided to give it a try.  Dylan did wonderful!  Then, when he was only 4 days old, we got the dreaded phone call.  We had to take him to the clinic the following Monday and at 7 days old, he was diagnosed with classical PKU.  His levels were so high, that he had to go 3 days with just drinking Periflex.  I never thought that I would be so upset about not being able to breastfeed, but I felt like something special had been taken away from me.  I started pumping for those 3 days, but starting having problems making milk.  I was so upset and stressed and started avoid all the foods that Dylan won't be able to have, b/c I was scared that the food would have an effect on his levels if he was breastfeeding.  After 3 days, his diectician told me to start adding breast milk to his Periflex, but I made the decision to change to Similac.  I commend you for sticking to breastfeeding, b/c it is definitely hard to do, especially when you have to deal with everything else.  I can't give you much advice on breastfeeding since I stopped so earlier, but my best friend is an expert!  She breastfeed both of her children for 15 months.  They did not have PKU, but she did have to pump for them when she returned to work.  She used Dr Brown's bottle/nipples, and they worked great for her.

    Well, congrats again on your son!  I am always here if you need someone to talk to.  I am definitely not an expert yet, but I am going through the same thing you are, I'm just a few months ahead of you.  I will tell you that I was a basket case for the first few weeks.  I cried everyday; I couldn't eat or sleep; and I just felt like i was getting punished.  Over the last couple months, I have really had a change of heart.  I know that there are so many worse things that Dylan could have been born with.  Also, I know that he is going to live a normal, healthy life, but he will just have to eat differently.  I am also praying that there will be a cure during his lifetime (preferably within the next few years!!!)  I feel much stronger than I did the first few weeks of his life, but I still have bad days where I start asking why and feeling like Dylan didn't deserve this, but then he laughs or smiles at me, and I forget all about it!  He is still the most precious and perfect baby and I can't even remember life before him!  He is definitely what gets me through every day!

    Once again, please send me a message if you ever need to talk.  This website has made me feel so much better about Dylan's future and I know it will do the same for you!
    Have a great day!

    #8685
    Avatar of Cook4Love
    Cook4Love
    Member

    Congratulations on your son.  Know that things do get easier as time goes on.  I pumped exclusively for Molly for 11 months.  My milk supply was low but there.  I think the exhaustion, not taking care of myself, not taking enough liquids and the overall depression at the diagnosis decreased my supply.  If you are nursing at all, you should be able to maintain your supply if you take care of yourself (which is hard to do under the best of circumstances when you have a newborn).   Good luck!
    Brenda

    #8686
    Avatar of Ruth
    Ruth01
    Member

    Hi – congratulations, your baby looks beautiful.

    I breastfed my daughter, Isla (now 2 and a half) until she was 10 months old (which was when I went back to work).  I had to give her the formula on its own for about three days and then reintroduced the breast milk.  I pumped for the three days she was just on the formula, then I would just give 30mls formula before each feed, and let her nurse until she was full (sounds similar to your regime, I am based in the UK and we did not have to express /  measure out the breast milk, I think it was just guess work!).  

    I did most of the bottle feeding as well as the breast feeding, as I was on maternity leave and my husband had to work,  and Isla didn't get confused, she just adapted!  I was so pleased I was able to carry on breastfeeding as I was also really upset at the thought of not being able to do it.  I never really did much pumping except for those first three days, and I found that my body just started to produce the right amount of milk.  I suppose we were lucky that we had found breastfeeding quite easy in that first week, and then we just adapted to the bottles fairly quickly.

    I know the diagnosis is a shock but I really regret the fact that I did not take time to enjoy my first few weeks with Isla (I even refused to open our baby congratulations cards for a few days after the diagnosis because I guess I was grieving about not having a perfect baby) – now I can't see why I wouldn't have wanted to celebrate my beautiful daughter because she is such a blessing.  So I guess I just mean take time to enjoy your son and not think too much about the PKU, it will just become a normal part of life. 

    #8702
    Avatar of Nicole
    AceMommy
    Member

    Ruth01,

    Thank you for posting! Thank you for the advice to enjoy my little guy….I am trying my best to do so. It sounds like all mothers seem to have that mourning period and I did as well. I still find myself feeling that way sometimes, but as this forum as taught me, everyday gets a little easier.

    My clinic has told me that as long as I am willing we can just do breastmilk and formula and wait to introduce foods until 6months. She said that when you start the food he has to have to food and he has to have formula so the breastmilk is usually the first thing to go. I am hoping he has room for breastmilk after six months though. Any thoughts on adding the food?

    We have been doing five minutes of breastfeeding, then the formula, and then as much breastfeeding as he wants. The thought is that he works harder for the breastmilk so we do that first. I have also been pumping for five minutes after the first morning feeding just to keep up the supply. But like you said I don’t really think I need to do that….my body seems to make what it needs. He really seems to be doing great!

    #8706
    Avatar of Grace
    gracie1605
    Participant

    thats awesome, congrats….you are doing an awesome job…I also introduced food to my son at 6 months but we just added in a 4-6oz serving of breast milk into his allowed amout of phe. see if you can do something like that or even more breast milk…

    #8707
    Avatar of Breanna
    BreaMarie91
    Member

    When my mom introduced my now eighteen month old sister to baby foods she simply skipped breastfeeding when my sister ate baby food. If she fed my sister three jars of baby food, then my mom would skip breastfeeding her approximately three times. This way she didn't get too much phe, but my mom was still able to breastfeed. Take to your sons doctor and see if something like this might be possible if you still want to breastfeed.

Viewing 15 posts - 1 through 15 (of 19 total)
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