NICU Stay Financial Information

The NICU stay can be a stressful time emotionally, and possibly financially! Here's some info to read on the financial aspect of a NICU stay:  http://handtohold.org/resources/helpful-articles/how-to-pay-for-your-nicu-stay-national-edition/ and http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children

 from http://handtohold.org/resources/helpful-articles/how-to-pay-for-your-nicu-stay-national-edition/:

How to Pay for Your NICU Stay – National Edition

by Erika Goyer, Hand to Hold’s Family Support Navigator and preemie mom

Call Your Employer

Let them know what is going on.  If you are a working parent you should ask to speak to someone in Human Resources or Personnel about the following:

• Your insurance coverage.
• What time off you have available or accumulated through flex-time, sick time, and vacation time.
• Whether or not you have temporary disability insurance through your employer.
• Whether or not your place of business offers time off through the Family Medical Leave Act.

If you have recently been laid off or fired you may still be able to access health insurance from your former employer. To find out more about COBRA (Continuation of Health Coverage Act) and whether or not it is a good option for your family call 1-866-444-3272.

Ask about Perinatal Coverage

Maternity Leave Resources

To find out more about your rights in the workplace, visit the U.S. Department of Labor’s resource: “What to Expect When You’re Expecting (and after the birth of your child)… at Work”
Baby Center’s (Johnson & Johnson’s) web resource: “Maternity Leave: The Basics” (Also available in Spanish)

Whether you are in the hospital waiting to deliver or already in the NICU, you should be thinking about your perinatal care as well.  Many states offer free or low-cost programs for mothers. They will help you cover your patient care as well as your postpartum follow-up appointments. Call your State Department of Health Services or the WIC Perinatal Program to ask questions.

• For a list of free or low-cost prenatal and perinatal insurance programs contact your State Department of Health Services or call 1-800-311-BABY.
• Find Your State’s toll free WIC Perinatal Program number online or call the Federal Office at 1-703-305-2286.

Find Out if You or Your Child Qualify for Medicaid

Even if you have private health insurance, it’s good to have Medicaid as your secondary coverage. It will help cover expenses after you have met your annual limits on treatments and therapies. The Children’s Health Insurance Program (CHIP) provides health coverage to children in families with incomes too high to qualify for Medicaid, but can’t afford private coverage. Visit www.insurekidsnow.gov to learn more.

• Medicaid 1-877-543-7669
• CHIP – Children’s Medicaid 1-877-543-7669

If your child qualifies for Medicaid or receives CHIP they also qualify for free routine check-ups, immunizations, hospital care, dental care, and lab and x-ray services.

Look at Alternative Routes to Qualifying for Medicaid

Your state may have Medicaid programs which will allow you to receive Medicaid for your child without meeting the strict income limits and financial guidelines. Some benefits are offered only to children who are born at a very low birth weight or who have extended hospital stays. Others will help you pay your private insurance premiums, deductibles and co-pays.

• SSI Disability – If your child is in the NICU and was born at or below a certain birth weight or were small for their gestational age they may automatically be eligible for Medicaid through SSI Disability. Remember, if your child qualifies for even $1 of Social Security Disability Income they will receive full Medicaid. Visit www.ssa.gov and click on the SSI tab to find out more or call 1-800-772-1213.
• Institutional Medicaid – Institutional Medicaid pays for medical expenses for a child who has a hospitalization longer than 30 days regardless of birth weight or family income. Programs vary from state to state and may not be offered where you live. You must apply for Institutional Medicaid prior to discharge. Speak to your NICU social worker or your hospital financial assistance office.
• Medicaid Buy-In for Children – This program is for families who have a child with a disability, but earn too much money to get traditional Medicaid. Through this program, families can “buy-in” into Medicaid coverage by making monthly payments. Visit your State Department of Health Services website to see if your state offers this program.
• Health Insurance Premium Payment Programs – HIPP is a Medicaid program that pays for the private health insurance premiums for certain individuals with high medical costs. HIPP programs are not offered in every state and eligibility requirements vary. Generally, to participate in a state’s HIPP program, you must qualify for Medicaid and have an existing medical condition that has been determined to be a cost-effective condition for the HIPP program. For more information contact your State’s HIPP program.
• Medicaid Waiver Programs – Even if your family does not meet the strict financial requirements for Medicaid your child may still be able to get coverage. Federally-mandated, state-run Medicaid Waiver programs exist to help families of children with special health care needs access comprehensive care for their children. Visit www.medicaid.gov and click on your state for a list of waiver programs and direct link to your state’s health agency for more information.

Research Other State Programs

WIC – Women, Infants and Children Program (1-703-305-2286) – The USDA’s Food & Nutrition Service underwrites the Women Infant Children nutrition and breastfeeding program within each state. Their website lists toll-free numbers and contact information for each state’s nutrition and breastfeeding coordinators. This program will help you pay for any specially-prescribed formulas, may be able to lend you a hospital grade breast pump and can help you get healthy food for you and your baby. Benefits are usually extended if you are breastfeeding. Peer breastfeeding counselors are available to help. Fathers can apply for their children to receive benefits too.



from http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children:

SSI benefits for premature children

Print

Email this page

Share

Is it true Social Security will give Supplemental Security Income (SSI) benefits to children born prematurely?

---

Social Security provides SSI disability benefits to certain infants born with a low birth weight whether or not they are premature.  A child weighing less than 1200 grams (about 2 pounds, 10 ounces) at birth can qualify for SSI based on low birth weight.  A child weighing between 1200 and 2000 grams (about 4 pounds, 6 ounces) at birth and considered small for his or her gestational age also may qualify. 

To satisfy our criteria, the following chart shows the gestational age at birth and corresponding birth weight.

Gestational Age                   Weight at Birth
(in weeks)
37-40                             Less than 2000 grams                    
                                   (4 pounds, 6 ounces)

36                                1875 grams or less                      
                                   (4 pounds, 2 ounces)

35                                1700 grams or less                      
                                   (3 pounds, 12 ounces)

34                                1500 grams or less                      
                                   (3 pounds, 5 ounces)

33                                1325 grams or less                      
                                   (2 pounds, 15 ounces)

If the child was not born prematurely or with a low birth weight, he or she may still qualify.http://ssa-custhelp.ssa.gov/app/answers/detail/a_id/368/~/ssi-benefits-for-premature-children

And, finally, from an email a friend received from the March of Dimes:

• The March of Dimes has other resources that your family may find helpful.  Our NICU Family Support Program (https://www.marchofdimes.com/baby/inthenicu.html) exists to help families cope with the experiences of parenting a preemie in the NICU and afterward.  We suggest that you contact the local chapter of the March of Dimes where your baby’s hospital is located and ask if they have a NICU Specialist who can assist you. You can find your local chapter here: 

http://www.marchofdimes.com/contactus/contactus.html .

 

• Many times parent-to-parent support groups can be of enormous help in sharing their experiences and their resources list. The March of Dimes has created a website for parents of preemies and children with medical conditions called Share Your Story (http://www.shareyourstory.org/) where parents help each other with all kinds of information.  We also have a section of our website dedicated to prematurity with lots of good information: https://www.marchofdimes.com/mission/prematurity_indepth.html .  

 

• NICUs usually have a social worker or patient advocate who can recommend resources to help families with financial and other stressors. We suggest that you meet with that person to discuss your concerns. 

 

• The Ronald McDonald House provides low cost housing to families when their children are in the hospital. We suggest you see if there is a house near the hospital where the baby is hospitalized. Their website is: http://rmhc.org/ .

 

• This is a link to the Patient Advocate Foundation to help you maneuver through the health insurance assistance maze:  http://www.patientadvocate.org/index.php.

 

• This is a link to the Patient Access Network Foundation:  https://www.panfoundation.org/

 

• Here is a link to the Disabled Children's Relief Fund that provides some information on different types of assistance available: http://www.dcrf.com/ordereze/default.aspx.

 

• This link will give you information on possible assistance with certain hospital bills: http://www.hrsa.gov/osp/dfcr/obtain/CONSFAQ.HTM .

 

• Here is another link to a vast number of resources from The Morgan Project: http://www.themorganproject.org/wp-content/uploads/2011/07/2012-New-Resources-updated28Feb12.pdf.  Perhaps you will find a resource here.

 

• This website lists many organizations that help families with children with special needs: http://www.especialneeds.com/funding-resources-special-needs-adaptive-equipment.html

 

• Easter Seals caters to early intervention programs for babies and toddlers, so they may be able to advise you as to where you can go for help. Please visit their website: http://www.easterseals.com/site/PageServer?pagename=ntl_early_intervention.   You can download their manual on caring for a special needs child, including the financial aspects of care, at:  http://www.easterseals.com/site/DocServer/WithOpenArms.pdf?docID=69583.

 

• I suggest that you read more about what health care reform means for you and your family here: http://www.marchofdimes.com/advocacy/healthcoverage.html .   You can go to http://www.healthcare.gov/foryou/individuals/index.html  to explore the different options available in your state. The U.S. Department of Health and Human Services also has a Web site to help parents determine if their children are eligible for free or low-cost health coverage under the reauthorized Children's Health Insurance Program. Visit http://www.insurekidsnow.gov/  for more information.

 

• Here is a link to an excellent list of agencies, organizations and support groups that address disability-related issues in children: http://www.nichcy.org  (just click on your state). 

 

• The SSI Children’s Project:  Another option is for you is to contact the American Bar Association (an organization of lawyers). They have a Children’s Project which has compiled a list of hotline numbers for families to obtain free legal help in obtaining Social Security benefits. Families can call a number specific to their state for a referral to free legal assistance, including legal services offices and private attorneys who are working for free on these cases. Call the Social Security Administration at 1-800-772-1213 to obtain the number for your state.

 

• Health insurance benefits by state:  http://www.benefits.gov/?_nfpb=true&_nfpb=true&_nfls=false&_pageLabel=gbcc_page_locate_state

 

• Premature Baby - Premature Child is a parent support organization that may also be of assistance.  Here is a link to their web site: http://www.prematurity.org .  And here is a link to another similar site: http://www.preemie-l.org/ .              

 

• The Lindsay Foundation is a non-profit organization whose primary goal is to assist families with resources necessary to provide medical treatment, therapies and rehabilitative equipment in order to improve the quality of life for their special needs children. http://www.lindsayfoundation.org/

 

• Pediatric Angel Network:  http://www.pediatricangelnetwork.com/aboutus.html

 

• Livestrong.com:  http://www.livestrong.com/article/287615-financial-help-for-children/

 

• Miracle Flight – Financial aid for travel for children to get lifesaving care and also for second opinions:  http://www.miracleflights.org/about-us/mission-vision-values/

 

You might also consider doing a Google search for financial assistance for health care expenses in your town. Often, small non-profits are dedicated to providing help to individuals.

Things we wish we knew... Good things to know that may help emotionally, financially, & medically!

Here are some things that some of us discovered from the momo journey… hope this helps you financially, emotionally, and medically!  We are by no means experts, just a group of moms that has went through the momo journey. We are not medical professionals or social workers ~ Always seek your medical expert's and social worker's advice before doing anything!

1. If your babies are in the NICU over 30 days or below a certain weight they may qualify for Medicaid ~check with your Social Worker.

2. You don't have to have a Hep-lock (IV) in the whole time you are inpatient (for the most part). Ask your doctor to write an order stating that.  You may not even have to get blood drawn every 3 days.  Again, check with your doctor.  If you do have to have a Hep-lock (IV) in then consider getting a PICC line instead so you don’t have to have the Hep-lock changed every 3 days.

3. Ask to see if you can have a "day pass" to leave the hospital for a few hours. Or at least ask to get out for a little bit of time each day (to walk or go to eat).

4.  You may qualify for Medicaid while pregnant.  Once you go inpatient your household earning may decrease if you were previously working.  You may qualify for Medicaid and it could cover anything your primary insurance does not. 

5.  If your babies don’t qualify for Medicaid or other state benefits they may qualify for WIC.  Work with your Social Worker on this as well.

6.  You are your own and your babies best advocate.  You need to have a say in when you go inpatient and when you deliver.  Research and contact other momo moms for advice and then fight for what you think is right for you and your family!!! 

7.  Anything your nurses do or make you do that you don't like or don't want to do, talk to your doctor. He can write an order and then the nurses have to follow doctor's orders.  If your nurses don’t seem to be informed about momo protocols help to educate them and if possible show them a cord photo from delivery to show them the severity of the pregnancy and why you are there for monitoring.

8.  AFLAC may be a great insurance (supplemental insurance) to have for the pregnancy and for the babies.  Some people have been extremely satisfied with AFLAC.  You may have to get it early in the pregnancy or AFLAC may not take you on.  It is also possible the only real way AFLAC would cover a momo or any other high risk pregnancy is to have had it before you ever got pregnant. They cover "routine" pregnancies so unfortunately it may be too late to get AFLAC once you find out you have momos. 

9.  Consider hiring a professional photographer to capture those newborn moments in the NICU.  Or have one scheduled right around the due date to get those adorable twin newborn pics. 

10.  In some states if you apply for Social Security benefits while your child is in the NICU, you automatically qualify because they can't check your financial accounts.

11.  If you have to pay for parking at the hospital check with your Social Worker if you can get discounted or free parking.

12.  Check with your Social Worker or nurses to see if your NICU has meal tickets that  you can use  ~ some offer free meals in the cafeteria and some offer a set daily amount.

13.  Visit the NICU while pregnant so you know a bit what to expect.  Also consider getting a book on preemies since you know you will have preemies.  (check out our resources page for a few recommendations; here’s a link to a book to start with:  http://www.amazon.com/Preemie-Parents-Companion-Essential-Premature/dp/1558321349)

14.  Consider receiving counseling from the hospital’s psychologist to prepare for inpatient and NICU journey.

15. Meet the Social Worker for the Fetal Treatment Team/Neonatal Ward prior to going inpatient (can schedule a NICU tour or meeting with hospital psychologist too).  Your Social Worker can become your best friend and advocate while inpatient and while in the NICU. 

16.  Every baby is different!!!  Schedules work for some babies but not for others.  For some, baby book advice may not work and you might not be able to manipulate your baby into a routine or force them to sleep through the night.   For others, the NICU routine works well in the transition to home. 

17.  Read up on what silent reflux is....so common in preemies and often not diagnosed by pediatricians. 

18.  If you are considering breastfeeding do a bit of reading on it before your babies arrive.  Once they arrive you will be so exhausted that it will be good to have gotten an idea on what to expect before you have to pump.  (check out our breastfeeding page for more info).  Ask to see a Lactation Consultant while you are inpatient or another time when visiting the hospital.  A study found that hand expression after each pumping session in the first three days postpartum may help increase milk supply http://newborns.stanford.edu/Breastfeeding/MaxProduction.html Breastfeeding/pumping does not work for everyone though ~ You need to do what is best for you and your family and don’t feel guilty if you aren’t able to breastfeed or pump!

19.  Post partum depression is real and nothing to be embarrassed about.  If you feel you might have it don’t be afraid to seek help and guidance.  A momo pregnancy is very stressful so the possibility of having PPD may be greater than normal. 

20.  You have the right to ask to bring your placenta home although some hospitals do not allow it.

21.  Sign up for every formula brand out there, the sooner the better and start collecting free samples.  Have family or friends sign up too if you want to collect more formula.

22.  When in the NICU, make sure the rules the nurses apply towards you are applied towards themselves. The nurses frequently applied the 'no cell phone' rule on us (for germ reasons) but the next second they would whip out theirs & start texting!

23.  Educate yourself on vaccines while pregnant.  The NICU will probably give the HEP vaccine before discharge; educate yourself if this is something you want immediately or want to wait on for awhile.  Also if your babies are in the NICU for some time they may need to get some of their newborn shots.  Again, educate yourself on what you want to get or wait on if you are considering a delayed vaccination schedule.

24.  Get the scoop on bed sheets being changed. Some hospitals only want to change 3x/wk but you can request/insist on daily since you are in bed most of the day and the sheets get sweat, ultrasound gel, food, etc on them! 

25.  Research research research! Talk to your friends and email us (monoamniotictwinmoms@gmail.com) if you have any questions.  Some things to consider…  vitamins, insurance, counseling, circumcisions, vaccines, breastfeeding, organic/natural foods...

26.  If you live far from the NICU, or even if you don’t (since you can’t drive immediately after a c-section), see if your Social Worker can set you up in nearby lodging such as the Ronald McDonald House.  Some hospitals even have “mother’s rooms” available for moms that will be at the hospitals while their children are being treated for several weeks.  

27.  You should consider every qualified hospital in your area and interview doctors and get tours to see where you should go.  Call and speak to the head nurse and ask what doctor she would recommend.  Don't just accept the first practice you were referred to is the best or delivers at the best facility for your 100 day stay.  Also, it is usually recommended that women expecting preemies 32 weeks or earlier should be close to if not at a facility with a NICU that can handle the babies. That more than anything should determine where you deliver.

Delivery Decisions ~ 32 weeks vs. 34 weeks

Once you are inpatient (YAY!) you and your partner should discuss with your doctors when you will deliver.  Some doctors strongly advocate 32 weeks.  Others recommend 34 weeks.  This decision is highly personal and only YOU can make the decision.  It also depends on how your monitoring has been going, how your babies have been growing (equally, concerns about TTTS, possible IUGR, etc), your doppler flows, possible cord entanglement. 

We are not neonatlogists or perinatologists.  We strongly recommend you discuss the decision of when to deliver with a trained medical professional who can discuss the pros/cons of delivery at each gestational age.  Here are some things to consider though and are based on our observations of fellow momo moms who had babies at various gestational ages between 32 and 34 weeks.

• The risk of mortality may increase each week your babies remain in utero beyond 32 weeks
• At 32 weeks most of the greatest risks associated with prematurity are no longer a major concern
• 32 weekers, on average, have about a 1 month NICU stay
• 34 weekers, on average, have about a 2 week NICU stay
• 32 weekers often need additional breathing assistance, to include a ventilator; and may require oxygen for several days or weeks (normally down to CPAP or nasal cannula within a few days)
• 34 weekers often breathe on their own, but still may need breathing assistance, to include a ventilator
• 32 weekers can still suffer brain bleeds
• 32 weekers can have Necrotizing enterocolitis (NEC)

Hospital Survival Tips from Momo Mom

Thank you to my fellow momo mom Shelby for allowing me to share this!!! Shelby just spent 8 weeks in the hospital on continuous monitoring before the arrival of her healthy (and big!) momo babies.  She wrote this to help other moms that may find themselves in the hospital for a long time period of time while waiting on the arrival of their baby or babies.  Thanks again and way to go Shelby!

"Dear Long Term Mom at Carle Hospital,

My name is Shelby and I called room 1056 at Carle Hospital my home for eight weeks awaiting
the birth of my twin girls. I thought I could maybe share a few things that helped me to survive
this journey as it isn’t always easy. Of course, you’ll need to consult your care providers to
ensure that it’s safe for you and your baby (or babies) before going ahead with any of these
suggestions.

Tips for you

•  Bring your own towels, pillow and blanket
• Ask about being upgraded to a long term bed. The bed you start with is likely intended for labor and delivery and isn’t necessarily very comfortable
• Get dressed in regular clothes, put on makeup and do your hair if you can. It helps so much to feel “normal.” But, don’t feel guilty for taking days off either
• Try to utilize all the people who are available to you. I met with the dietician,physical therapy, social workers, lactation consultants, pastoral care and consulted with the NICU team at various times throughout my stay
• Take this time as an opportunity to learn about parenting. You may not be able to go to the “All About Baby” classes, but talk to your nurses about having them cometo you or provide educational materials.
• See if you can have Jacuzzi time. It does wonders to alleviate the aches and pains associated with pregnancy
• Ask your doctor if you can have “wheelchair rides,” it’s amazing what a little fresh air can do for your frame of mind.
• See if from time to time you can have meals in the family lounge with your visitors. Eating at a table is something most of us take for granted
• If you’ll have a lot of fetal heart monitoring, bring in some of your favorite lotion to use in lieu of the ultrasound gel. I liked to use a cocoa butter cream to help combat stretch marks, plus it made the room smell good too
• Again, if you’ll be doing a lot of heart monitoring, sometimes you’ll need to use props to get just the right angle. Request mesh panties over wash cloths if you can, they are much softer on your skin
• If you’ve got to wear the ‘flowtron’ compression stockings because of limited mobility, from time to time, give your skin a break and wear leggings under them instead of pants over them."

Inpatient Stay Tips

Inpatient Stay Tips (from momo mom after first week of Inpatient Stay) 

 

1. Take the first two days just to soak it all in. It's emotionally and physically exhausting because I couldn't sleep. I didn't do much else.

2. Have your husband or a family member stay with you as much as possible the first week.

3. Pack comfortable clothes but make sure you feel good in them/stylish. I'm glad I brought some "cute" clothes to wear during the day and with visitors.

4. Get yourself into a daily routine by the end of the week to remain as "normal" as possible. (I.e. organize, read, visitors, snacks, meals, naps, walk (if you're allowed), shower... Find a consistent time slot for each activity)

5. Be extra kind to every staff person in the hospital. Housekeeping, dietary, and especially the nurses. They will go out of there way to bring extra snacks, free meals for family, answer questions if you're a "good patient". 

6. Ask questions about everything the nurses/docs are doing so you can be totally informed or if you think of a question write it down right away so you don't forget. Even though there is a "plan" not everyone is always on the same page, don't assume that everyone is your advocate, you have to speak up if something seems questionable or you don't have total clarity on something 

7. Ask your OB to put in an order for dietary and physical therapy to come and see you.

8. Bring in things from home. I brought in a reading lamp and it makes a world of difference in the evening or early morning not to have the harsh fluorescent hospital lights on all the time. 

9. I made a paper chain this week counting down the days to my delivery date. Each day I tear off a link (like the one you made in elementary school)

10. Bring in pictures to tape on your wall, your pillow from home, and a cozy blanket. If you are in around the Holidays then bring something Holiday themed to brighten up your room.

What to pack while inpatient

Many momo moms choose to go inpatient between 24 and 28 weeks with goal delivery dates of 32 to 34 weeks.  That can mean up to 10 weeks in the hospital!!!

What should you pack to make your time in the hospital as comfortable as possible?? Here's a list to start...  Make yourself as comfortable as possible and enjoy your stay ;)   You shouldn't have to be on pregnancy bedrest while in the hospital so request time out of your room daily (at least 15 minutes to walk and another 15 minutes to shower) and even possibly off campus (once a week).  See if you can not have an IV in the whole time (it gets very uncomfortable) and ask your doctor if you can get less frequent blood draws (many have a policy of taking blood every 3 days).  Good luck, you CAN do it!

This list is compiled based on the suggestions of multiple moms!  If you packed all of this it would take you a day to move in! But you may be there for 10 weeks so pack as much as you think you'll want/need/use!  

1.  Comfy clothes and shoes (large shirts/tanks/yoga-stretch pants/sleeping pants/shorts/socks/sweatshirt) ~ you may get bigger than you expect so bring some BIG shirts, hospital rooms can be cold so pack some cooler weather things like sweatshirts and warm socks! Some moms also liked to dress up a bit so maybe an outfit or two (jeans/nice shirt).
2.  Camera (document your growing belly!)
3.  Laptop/tablet  (most hospital rooms should have wi-fi)
4.  DVDs (or download a few shows to your laptop/tablet)
5.  Healthy snacks (and maybe a few not so healthy ones for a quick pick me up!)
6.  Pillow and pillowcases
7.  Sheets (may want to bring your own/soft sheets)
8.  Blanket/comforter (one to make bed more comfortable (twin size) and a small one to cover up during monitoring sessions (throw size))
9.  MP3 Player/small speakers or docking station
10.  Books/crossword puzzles
11.  Night clothes
12.  Craft activities (the hospital is a great place to learn how to knit or crochet and you can make a few cute hats for when you babies are in the NICU or for your newborn photo shoot)
13.  Scrapbook materials (work ahead on the baby books since things will be busy once your babies arrive!)
14.  Toiletries (toothbrush, toothpaste, brush, face cleanser, lotions, shampoo, soap (bar and gel), conditioner, floss, lip balm, razors, loofah, hair items (bobby pins, straightener, curler, hair ties), q-tips, make up, shower cap, tweezers, nail clippers, nail file, nail polish/remover, vitamins (although many times the hospital won't let you take your own, you will have to take ones they provide))
15.  Water bottle (keep filled to remind you to drink water!)
16.  Notebook/pen/cards (extra cards to write to notes on antepartum wing as thank yous)
17.  Photos & Photo Frames (family, favorite ultrasound pics to keep your eye on the prize(s)!)
18.  Cell phone
19.  Alarm clock/watch
20.  Ear plugs
21.  Eye mask
22.  Laundry bag
23.  Shower shoes
24.  Slippers 
25.  Zip lock bags
26.  Scotch tape/fabric tape (to tape things to your walls)
27.  Sheet protectors (to put pictures and art projects from your kids in)
28.  Glade plug in (or other scented item)

29.  Memory foam pad for twin size bed

30.  Body/pregnancy pillow

31.  Towels (soft ones!, fun patterns or bright colors to brighten up your bathroom)

32.  Journal/pens/stickers
33.  Small plant 
34.  Chain/Necklace to keep rings on (fingers may get swollen during inpatient stay)
35.  Salt and pepper shakers (to season food as desired); other spices you love
36.  Baby wipes (help wipe off monitor/ultrasound gel)
37.  Mini fridge (if allowed) to store healthy snacks (many floors also have a fridge available to inpatient moms that is stocked with milk)
38.  Fan (white noise/room may get hot) 
39.  Chargers for all electronics (cell phone, M3 player, laptop, tablet, camera)
40.  Headlamp (to read in bed without bright lights on)
41.  Febreeze/Diffuser
42.  "Nurse Trap" (snacks/cookies/candy to entice nurses to stop by more often and get to know your nurses!) 
43.  Toilet paper (nice and soft if you don't like the hard stuff in most hospitals) 
44.  Calendar (to countdown the days!)
45.  Exercise ball/band 

Things to ask your doctors

Once you receive the initial monoamniotic diagnosis you will probably have a thousand questions running through your head... but when the time comes to ask the doctor some questions you'll probably forget them all!

Here are a few things to ask your doctor(s).  Your OB should refer you to a high risk OB (Perinalogist/MFM (maternal fetal medicine) so many of these questions are ones you will ask the first time you meet with your Perinatologist/MFM.  Some questions are ones that you will ask when you are further along with the pregnancy.

1.  Which Perinatologist /MFM practice do you recommend?
2.  When can I get a high resolution (level II) ultrasound to get the momo diagnosis confirmed?
3   What is the standard practice of care for momo twins?  How often will I be seen for an ultrasound? When and where will I go inpatient?
4.  How often will I receive ultrasounds before I go inpatient?  How often will I receive ultrasounds when I am inpatient?  What will be looked at during each ultrasound?  Organ development? Cord flow measured through dopplers?  Growth measurements?
5.  Can I still get pictures/videos of my ultrasounds? (some of us didn't get many pictures/or any videos because the ultrasounds... we wished we had more pictures)
6.  Is it possible to get a 3D ultrasound? (We've seen some awesome 3D ultrasounds from momo twins...  it was never offered to some of us though but may have been a possibility).
7.  What is the outcome for babies of each gestational age (you may want to meet with a neonatologist to discuss this).  What are some typical issues you know of for preemies at each gestational age?  This will help you make your decision on when to go inpatient (see #8 below!) as well as delivery (see #10 below!). 
8.  When do you recommend going inpatient? (24 to 28 weeks is "standard” in the United States and Cananda, other countries protocols vary but many in the UK and Australia have successfully fought to go inpatient).
9.  What will my day consist of when I am inpatient.  What will my monitoring be like while inpatient?  3x a day seems to be the most common but there are other variations including continuous monitoring or a NST every 2 hours.  How often will I receive ultrasounds while inpatient (either to check cords or for growth measurements). Ask if your doctor can write an order so you won't be bothered in the night for vitals' checks and ask if you can get a waiver on the heplock and blood draws.  Will you be able to go for short walks while inpatient? Any possibility of leaving the hospital for a couple of hours once a week or at least getting outside?
10.  What gestational age do you recommend delivery? (32 to 34 weeks is pretty "standard" for momo twins... more on this in another post!).  If things look good at 32/33/34 weeks will you consider taking it on a day by day or weekly basis to go a bit further?
11. What will require an emergency delivery?  A dip in heartbeat for one twin to below 90BPM for 5 or more minutes?  3 or more decels below 100BPM in an hour period?  Cord flow being compromised?
12.   How will the c-section go? (many of us did not know anything about c-sections prior to having our babies... this would have been something great to know before delivery!  One thing to ask is how you will be sutured ~ with staples or sewing?)  Who can I bring with me in the delivery room? Can I have my spouse/significant other/friend take pictures of the cords (great memory down the road to have a picture of the cords!).  What type of anesthetic will I receive? What will determine whether I receive general anesthesia or a spinal?
13. Will I receive steroid shots?  How long does a dose of steroids last and if I receive steroids when will I get the shots?

14.  Where will I deliver and what is the quality of NICU there?

15.  How many momo twin deliveries have you dealt with in your career? In the past 5 years? What were the outcomes for the momo twins you cared for?
16. What is the CVS test and an Amniocentesis and would you recommend those? What are the risks?
17.  What are the odds on finding a membrane later on?  I’ve heard membranes are often found up to 20 weeks or so. If a membrane is found later and my babies are modi, what does that mean for my care and my babies? How is that different than momo?
18.   There’s a study that shows “Sulindac therapy reduces AFI (Mean Amniotic Fluid Index), leads to more stable fetal lie, and may prevent intrauterine death by diminishing the risk of constricting cords that are already entangled.” (http://www.ncbi.nlm.nih.gov/pubmed/17001748)? Is this something to consider? What are the benefits/risks?

19.  How can I give my babies the best chance?  What diet do you recommend?  DO you recommend extra protein and if so how much? What are your thoughts on activity level; is daily exercise ok? Can I keep working?
20. Is there any new research on the care of monoamniotic pregnancies?   Any new standards of care as far as inpatient stays and monitoring or delivery dates?

When deciding where to go inpatient (if you have a choice) try to talk to a Perinatologist at each hospital as well as tour the NICU.  You may spend up to 10 weeks in the hospital but your babies will most likely be there for about a month or so (give or take a few weeks depending on when they arrive).