Update Email From Brandy (Posted With Permission): Subject Line “Jaeli’s NeoCate Trial and Milk Bank Milk Secured”
I wish I could have emailed before now. I wasn’t able to use my computer much for the past three days, especially now that my three-year old daughter is staying in the hospital with me. Thanks to Angela England’s help, and those who have responded to her petitions on our behalf, we have a buffer for getting Jaeli milk long-term and finding a caloric intake plan that will work so the hospital will release her.
We’ve secured some 24 calorie milk from the milk bank that is due in tomorrow morning and will be transported from my home an hour and a half away to us here in the hospital. We would have shipped it directly here, but the hospital’s receiving department has no protocol for handling breast milk and the risk of it sitting there too long and going bad is great. In the meantime, we’ve been forced to start a trial run of NeoCate hypoallergenic formula, started this afternoon, with the purpose of presenting a case to Vermont Medicaid in an attempt to get them to pay for this uncovered benefit. This is a formula she did not tolerate, but it was never documented in a hospital setting.
She’s beginning to struggle more on NeoCate than on breast milk to keep feeds down. She requires more maintenance and had a choking episode this last (fourth) feed that passed fairly quickly, but she’s not critical.* I’m not sure how the doctors will evaluate this info, but I’m reporting every change to nurses who are recording it. I’m hoping doctors will see this plainly as not beneficial for optimum growth and well-being and move on.
I’m unsure if we’ll be testing the soy formula after NeoCate, but we will definitely be testing the milk bank milk. Standard breast milk is 20 or lower calorie, so the milk bank milk at 24 calorie, which requires special permission to get, should help Jaeli grow more than standard milk. This is a huge reason we need to go with banked milk first (the other reason is that it takes away donor milk safety issues). But it costs a lot of money.
A couple of milk banks are donating each a box of milk that should take Jaeli twenty days total, and the money raised thus far will give us a few more weeks. After that, if a long-term sponsor isn’t found** and Vermont Medicaid won’t pay for the banked milk, then we’ll need donors to meet her supply. (I have milk but am unable to express most of it and doctors want Jaeli to get 30 ounces scheduled G-tube feeds a day atop any nursing she does, so they know what caloric intake she gets.) This is why we’re looking for and screening donors.
Ang, thank you for being our advocate and doing what I cannot. I love you!
To everyone who has spoken prayer on Jaeli’s behalf, sent an encouraging word or thought, called out the humor hounds, or donated time or money or phone calls, THANK YOU!
* Angela’s Note – As per a phone conversation with Brandy one hour ago, Jaeli is more pale with mottled-looking skin and the amount of fussiness is increasing as her intestinal discomfort grows in reaction to the NeoCate. She’s also been spitting up more frequently. Pray the doctors will note the changes and feel comfortable discontinuing the trial before Jaeli takes an even bigger turn for the worse.
** Note regarding Nestle – After a conversation via Twitter, Nestle gave me an email address to submit a sponsor proposal to them via email, for Jaeli’s feedings. They also said anyone could email and encourage them to sponsor Jaeli’s feedings whch would insure her access to the higher calorie, screened milk that would be better for her, even if Medicaid fails to come through. Email Nestle at firstname.lastname@example.org and ask them to sponsor Baby Jaeli. We’d love to see this formula company prove their assertion that “breast is best” with their checkbook on Jaeli’s behalf. The address of the milk bank is posted on Baby Jaeli’s Donation Page – they can send money directly to the Mother’s Milk Bank of Ohio.