Assistance for hospital stays for mom's w/ preeclampsia: information, resources, financial assistance

Lew9109
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Re: Assistance for hospital stays for mom's w/ preeclampsia: information, resources, financial assistance

Postby Lew9109 » Sat Jun 11, 2016 07:48 pm

Hi Casey,

First, I would like to say that I am sorry that you and your family are dealing with this. I will say that you have come to the right place. The forums through the foundation are a great way to get reassurance that you are not alone in dealing with pre-eclampsia. I would encourage you to keep asking questions on these forums and know that support through the foundation and fellow survivors is always here for you and your family!

I had pre-eclampsia & Hellp in 2009 that was a very severe case and again in 2012- pre-eclampsia with no hellp. Like your fiance, we were going about our days with a healthy pregnancy and one day things changed very very quickly. I will say that there were signs there ahead of time that were left unaddressed due to the lack of awareness so our situation could have been a lot different.

1. As far as where to look for answers........
In 2009, pre-eclampsia was not a term/condition we were very familiar with and to be honest our doctors that were caring for us had a general knowledge of it,yet, we found the most helpful information through our own research and through the foundation. We reached out to fellow survivors. Some stories were very similar to ours and others were vastly different so take what you can from each survivors story and see how it can apply to what you guys are going through.
Here are some things we did during our care: We did request the care of a cardiologist to monitor our care along with the OB team because we felt that they would better manage the blood pressure medications we were prescribed. As well as, monitoring us since my blood pressures were very labile and critically high. A high risk OB is most likely already in place of your care but if not they need to be. So I would make sure that a Periantologist is part of the care team for your fiancé and baby. Other suggestions with in patient care, is to make sure they are looking at your fiancé's case individually. What is a normal blood pressure for one person, may not be for another. Be your own best advocates. If your fiancé notices or feels anything that is new or different, don't be afraid to have a voice. Things that should be monitored is your fiancés urine ( for protein), blood pressures, reflexes, vision changes, any belly pain ( upper right), nausea, vomiting, or a general feeling of "something just isn't right". Swelling, headaches, etc. They will also be checking or should be checking her liver enzymes, kidney functions, and platelet levels. As far as nutrition, a plan that provides a greater selection of whole foods and less processed foods. Our cardiologist also had us follow a diet that was lower in sodium and did not exceed 2,000mg per day! For blood pressure medications, we were given labetalol and hydralazine.

2. Learning and researching about pre-eclampsia.......
I would say what is most beneficial is to ask fellow survivors. If there are specific questions you have, please post them and I would be happy to walk you through them and answer them. Awareness of the condition is very key to identifying symptoms that may go unaddressed if someone is not aware. So please ask. Like I said, I would be happy to address them in detail. Researching on the internet, you can get a wealth of information but being that it is the internet I would make sure the source is credible. WebMD, The Pre-eclampsia Foundation, The Mayo Clinic, etc.

3. Extra Support......
It is wonderful that you both have such a strong support system. As far as financial concerns, there are few things that you could do. These are things that helped us. We utilized my PTO time through work, which were extra hours that I acquired over time. We utilized that. I also accessed my short term and long term disability. As far as the financial bill with the hospital, I would have the social worker speak with you further about assistance programs the hospital can offer you. Payment plans, etc.

4. NICU.......
Visit the NICU. I know you mentioned that you did. If it brings you comfort to see it more than once ask to do so. When you are there, ask the nurses as much as you need to to make yourself and your fiancé feel more comfortable with the care your baby will receive. Inquire if there are any Preemie Parent Support Groups where you can meet other families that are in the NICU. Browse the Preemie forums to post your questions and concerns. Also, the bump is another pregnancy site that you can access boards on pre-eclampsia, early deliveries, and the NICU experience. I would also ask your hospital to see if you have the ability to sign in with your iphone or ipad to monitor your baby when you are not there. Hospitals are now having this as an option for parents and I know in our area they have already started utilizing this!

I hope that this answers some of your questions. I am happy to help further. Like I mentioned, please post your questions or concerns and I can help answer anything further you might have! Please know that you and your fiancé are not alone. Be your own best advocates. Ask questions. If something doesn't seem right, don't be afraid to question it. Use your voice! And, know that fellow survivors through the foundation are here to support you and your family!!!!

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caryn
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Re: Assistance for hospital stays for mom's w/ preeclampsia: information, resources, financial assistance

Postby caryn » Wed Jun 08, 2016 03:57 am

Casey, welcome. I'd also like to apologize for the delay; I was traveling out of state and it's just been a busy last several months for me. Which is irrelevant to you!

I think the links in my .sig file are a good place to start trying to make sense of the information you're getting, but please also holler on this thread and I'll do my best to answer.
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy

laney_p
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Re: Assistance for hospital stays for mom's w/ preeclampsia: information, resources, financial assistance

Postby laney_p » Mon Jun 06, 2016 03:35 pm

Hey Casey,

Sorry for the delay in response! I was out of the office this past week. So first of all, I'm so sorry for all that you and your fiance are going through. Have they moved forward with delivery yet, or is she still being monitored? We'd love an update on how all three of you are doing.

Secondly, for all your questions related to preeclampsia, you can definitely post them here or email us at info[at]preeclampsia.org. Unfortunately, there are not a lot of treatment options for preeclampsia at this time besides doing their best to control the mom's blood pressure with anti-hypertensive medications, then delivering, often prematurely. Delivery starts the healing process for the mom's body, but it can continue in the postpartum period, and your fiance may have to be on medication for a few weeks or months after delivery to keep her blood pressure under control. It makes me really happy to hear that you are having an overall positive experience with good communication from your providers. That's the best case scenario for a really difficult situation!

Regarding financial assistance programs, because of the number of cases that we see here at the Foundation, that's not a support service that we provide, but we advise families to talk with their local hospital or healthcare department about financial assistance programs that are available in their community. There are sometimes hospital donor funds or local community organizations that may serve for this purpose. Some families also choose to set up a gofundme.com account or other family-and-friend-driven fundraising site to help with the costs. There are also some great local organizations that send care packages to NICU families as well, so ask your social worker contact about that!

I'll also ask some of our Patient Support Network moms and dads to hop on here and talk about navigating the NICU experience, but in the meantime, check out this website http://support4nicuparents.org/ for a lot of great information that should prove of help.

Looking forward to hearing from you with an update.
Director of Community Relations for the Preeclampsia Foundation
*does not provide any medical advice*
for more information, please visit www.preeclampsia.org

La Directora de las Relaciones con la Comunidad
*no ofrece consejo médico*
Se habla español
Para mas información, por favor visite: www.preeclampsia.org/es

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CaseyJohnson
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Assistance for hospital stays for mom's w/ preeclampsia: information, resources, financial assistance

Postby CaseyJohnson » Thu May 26, 2016 08:08 pm

Hello everyone,
My partner and I received the news that she is affected by preeclampsia. Two days ago, my fiance was headed to Maple Grove Hospital in Minnesota. We were preparing for a routine, comforting, and informative evaluation of our little girl's progress within the womb up to the 30 week point. With a blood pressure check and an analysis of my fiance's blood and urine, the doctor on call came into the room and relayed some startling information: "...we received some test results that are troubling and we would like to keep you here and monitor your blood pressure and a few other things. There are signs that your are going through a condition that may warrant an early delivery."
Two days later, we are still in the hospital and my fiance is relatively stable and in good spirits. There are nurses monitoring her vital signs and a slew of medical professionals coming in to comfort us and update us with specifics regarding our preeclampsia. A social worker visited as well, and opened discussion regarding the payment aspect of our stay at the hospital. Although we are focused on the health of mother and baby, I am reaching out on my family's behalf to inquire about potential assistance programs or methods through which we could receive guidance and assistance as we go through this process with preeclampsia. The medical staff is going to keep my fiance in the hospital until delivery, and that could be tomorrow or six weeks from now. We have a tremendous support system. However, this condition known as preeclampsia is completely new to us both, and I am seeking guidance as to where to ask for help with information and how to get involved with the process of researching and treating the condition.
We are in full confidence in the medical staff's ability to care for our premature little girl. We are exploring the NICU this afternoon to see where our baby will spend the first weeks of her life. However, we are reaching out to the preeclampsia community for guidance on how to deal with this all: information, guidance, means for financial assistance, and preemie love and care. Any direction in which you can point us in extremely appreciated. I have been exploring the preeclampsia foundations website and find it helpful. However, I have always been of the mind that a sound referral from a person is much more credible and trustworthy than something you read independently.
Thank you for reading our post and we sympathize with you all who have encountered preeclampsia and are thankful for anyone who has paved the road in dealing with it.
Best Regards and Thanks,
Casey


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