This morning Marleigh was extremely gassy, she was moaning in her sleep, was congested, & was getting a rash. I guess I got my sign. Marleigh can't handle the "liquid gold" either. Then around 1:15, my Uncle Bryan & Aunt Karen stopped by to say hi. I had just finished feeding Marleigh. About 10 minutes later, Marleigh just started screaming & crying. Her little tummy hurt. She was inconsolable. It just breaks my heart to see her like that. I immediately took her to the dr. When I go there, they mentioned all these "gentle" formuals to try. I went through Marleigh's whole history & told them that she couldn't handle any milk or soy based formula. Sometimes I feel like doctors & nursed think I'm stupid! I asked again about Neocate. The ARNP said they had never heard of it. She left for a few minutes to do some research. She came back & said that we should try it. It has no protein whatsoever. It just has amino acids. We ordered some from the pharmacist. I thought the alimentum was expensive.... whew!!! Like, I've said before though, I don't care what it costs as long as Marleigh feels better.
They put me on reglan to try to increase my breastmilk. It can have some not so fun side effects, but I'd gladly take them if it can help Marleigh.
Please pray for us. This is our last resort. I'm not sure what we're going to do if this doesn't work.
Just sending you a ((HUG))! I can totally relate to your formula issues...Just one more thought...you probably have tried this, but have you given her straight Alimentum w/ no BM? Just wondering if she allergic to something you are eating??? I'm sure you've already done that...but just thought I'd suggest it. SO sorry you guys are having to deal with this...frustrating and hard for all of you!!!((HUGS))
ReplyDeleteI have heard of breast milk banks where people donate breast milk for babies in Marleigh situation. Don't really know any more about it then that but you might talk to them at hospital to see if anything available. We have everyone at church here praying for you. God will provide a way! Love you All! Aunt Pat
ReplyDeleteHang in there Sarah. You are doing everything you can and God will answer your prayers. Marleigh is one tough little girl. At least she is telling you that it is bothering her and you know all the signs. Again, hang in there. It will get better.
ReplyDeleteLaura Roy
Not sure if anyone has suggested this, but have you contacted your insurance carrier to see if they would cover some or all of the cost of the formula? Our state mandates that it be covered if it's medically necessary, as in Marleigh's case.
ReplyDeleteGretchen Van Mater
We've been using Elecare in the unit as a last resort after Alimentum. I don't know how close it is to Neocate, but that might be another option. Hope it gets better!
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