All- As you know, Nora has been in the hospital since her birth on October 26th, 2014. We are hoping she will go home soon, but we are running into another road block with Nora and I truly need your help-- whether it is advice, connections, or anything else. Here is what is happening: I pumped religiously when Nora was born. However, when you attempt to pump and are unable to breastfeed before you milk is in, it is nearly impossible to get a good return- which is what happened in my case. As a labor and delivery nurse and someone who acknowledges the benefits of breastfeeding, it was very hard for me to accept that pumping was not going to work given the situation we were in with Nora. When Nora was finally able to eat, she ate the small amount of breast milk I WAS able to store like a very happy bird. However, since it was such a small amount of milk it did not last long. She then was switched over to formula. Nora know what she likes apparently, and absolutely REFUSED to eat the formula which is why her NG tube stayed in place for so long. What she refused to eat, they had to dump into her belly to ensure she was getting her nutrition. This is also why her TPN stayed on for so long--- because she still needed the back up calories through her IV. Well as a nurse I got creative and realized that donated breast milk is what premature babies get in the NICU. Donated breast milk is milk that goes to the national milk banks across the country and is then put through the same screening process as blood to then be given to babies. Premature babies are the ones who typically get the donated breast milk as they benefit most. What I should say is that premature babies are the ONLY ones to have ever received donated breast milk at Riley. But as a nurse, I also know how to advocate (particularly for my baby as she is the best patient I have ever had) and explained to them that although giving the donated breast milk to a full term baby has never been done, it does not mean it cannot be done. They told me it was going to be impossible to get the milk bank to give me donated breast milk once Nora was home which would prove problematic because if she refused the formula at home then we would be back to square one. I asked them if I could do my own homework and if it proved easy to get the milk bank to agree, then I will go home with the milk bank donation. They finally (after coaxing) agreed. Well it was as simple as calling the Indiana line and getting a packet mailed to me to fill out and get a prescription to get the donated breast milk outside of the hospital. So we gave her the donated breast milk and she has since eaten like a champion and that is why she has had such a quick turn around--- no more NG tube, no more central line-- NOTHING. They told me she would have to go home with an NG tube to feed her when she was refusing the formula, and now the doctors have accepted the milk bank packet from me to give to other moms in the hospital. Here is where my problem is: I am the first person to ever want to go home on donated breast milk with a full-term baby. Thus, insurance is refusing to cover the donated breast milk. They will pay for the formula and NG tubes as this is necessary part of her medical needs but because donated breast milk banks are such a new thing, they refuse to cover that. It is the equivalent as a medicine-- that is why HOSPITALS are able to get it for their babies. I, however, am viewed differently as an outpatient and medications are coded differently outpatient than they are inpatient. The breast milk is $18/bottle--- at this time Nora eats at least 8 times/day. To go home on an NG tube with formula would cost A LOT more money than this as it would require supplies galore and not to mention is not as good as a solution as simply giving her breast milk Do you see how frustrating this is? I have contacted Children Special Health Care Services which is a special program for children with special needs and they cover what insurance does not. However, their grant writing is very specific and their hands are tied as well--- they are unable to get the breast milk covered. The only way to get it covered is through legislation. I have contacted the Indiana state legislator but this will obviously take years to pass-- which is fine as this can benefit other mothers. However, this does not help us in the current situation. Do you know anyone or a program I have not thought of that would be willing to help us cover the financial costs at this time? If you could donate any of your own resources, too, that would be incredibly generous of you and much appreciated by us--- one step closer to going home!: gofundme/gskkyg Please let me know. Thank you! PS-I would love if you could also send the representative in your area the letter I sent and send it on behalf of me by saying here is an e-mail from a family friend and this is a very important issue that does not stop in Indiana (so you do not have to be contacted) would be awesome Simply google: FIND MY LOCAL STATE REPRESENTATIVE and put the state in which you live in after the representative ( Ex: find my local state representative Indiana) and then email the letter. The more awareness about this situation is made, the better-- just like with the outcomes of cystic fibrosis (cff.org). Here is the link to the e-mail you can simply copy and paste it into the email to your rep: https://docs.google/document/d/1oDuhksFSBEAmgI8iHGxyALXJEJhVBLV8pzK3cxIKZ0w/edit?usp=sharing
Posted on: Thu, 04 Dec 2014 14:19:36 +0000
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