So we got a call that patricks PKU showed that he had a VERY rare liver disease. It's like 1 in 60,000. I had to immediately switch him to soy formula and stop nursing him. This has been so hard. I am pumping and holding onto a bit of hope that the further testing done will show that the first test was wrong and I can go back to nursing again.
He has been doing a lot better since we put him on the soy. It breaks my heart that this could be a reality.
thank you all.
One thing you might want to ask your doctors if it is confirmed is the possibility of partial breastfeeding, there might be something about this on the LLL website as it's in their magazine that I've read of things like this. It's hard work as it generally involves regular testing of the levels of whatever it is the baby can't deal with as normal, but it means they can get the benefits of breastmilk without being harmed. Obviously it will depend on which disorder it is.
Since you now are having to buy formula, I have been saving all the formula coupons that I have gotten in the mail. I'd be happen to send them to you. Some are as much as $8 off. I've got them for Similac, Enfamil and Good Start. I know it is so expensive. Let me know if you would like them.
How sad for you!
My DD has also has a rare liver disease. I was able to nurse her, but she had to have major surgery at two weeks, and faces a real possibility of a transplant her whole life. I really sympathize!
I would second the thought of asking about partial nursing. Is there a level of milk that he can handle? What are the consequences of feeding him milk?
There is always the possibility that the test is false, but if it is not, and you have to feed him formula, he is still going to be your sweet little baby who you can hold and feed, and thank goodness you will have access to food that will allow him to grow and thrive.
Super mom to a 5 1/2 year old girl, almost 4 yr old girl, and 2 year old boy.
the retest results took over two weeks! they were normal. thank goodness. my supply was a little low i guess. he stayed attatched to my breast for the first 3.5 days after i started nursing again. this is the 5th day, and it is better now. yesterday he was doing really good and seemed satisfied.
we are having a slight nipple confusion issue. but that too is getting better with more nursing sessions, i think.
thank you for thinking of me.
I'm very happy Patrick is doing fine now!
Weary SuperMama to my amazing neurodiverse 6 y.o. DD and to my on-the-go neurotypical 3 y.o. DS
Mama to two sweet boys, a 7yo and a toddler .
The intuitive mind is a sacred gift and the rational mind is a faithful servant. We have created a society that honors the servant and has forgotten the gift. - Albert Einstein