General Tips

• Trust your judgment about what your baby wants, you've spent a lot of time watching them in the NICU and when they got home.
• If you're not sure what to do, ask someone - another parent, a doctor, a nurse, or a friend.
• Sleep when you can.
• Keep a journal. Use it as a way of remembering, but also as a way of venting and expressing your hopes, fears, joys and dreams.
• Don't feel guilty when you don't want people to visit the baby. Only do what you feel comfortable with, not what other people want.
• Be a strong advocate for your baby, you are the one who has to take a stand for what kind of care your child gets.
• Mom and Dad will hold and handle the baby differently. Try different ways of holding your preemie, you probably won't do it the same way as your spouse but that's okay because the baby knows its you holding them.
• Don't compare your baby to others of the same age. Each baby is different and special.
• Keep a journal of what's going on. Write down how much your baby weighed today, what the doctor told you, or the latest achievement of your preemie.
• Be strong for your family when you have to, but make sure you talk about your grief and fears as well.
• Ask that the doctors address and talk to both parents, so each parent gets first hand instructions and information.
• Take one day at a time.

Tips for time in the NICU

• When your baby is still in the NICU rest while you can; don't feel guilty for not being there constantly. You're baby is in good hands.
• Don't be afraid to ask questions and have things explained to you in "non-medical" terms. Sometimes the doctors and nurses forget that they are using unfamiliar terms.
• Find out when your baby's "touch times" are. This is when the nurse changes the diaper, takes the temperature and rotates the baby (usually every 4 hours). You can plan to be there for "touch times" and actually do it yourself. It makes you feel useful and involved, especially if you can't hold the baby much due to medical reasons.
• Once your baby is medically stable ask how siblings can see or visit the baby. Each NICU has specific rules about the age of visitors.
• Place a picture of you and your family in the isolette - you can put it in plastic to keep it clean.
• Put your baby in preemie clothes as soon as you can. Many babies can wear hats and socks pretty early on.
• Get to know your babies stress cues. These cues may include hiccups, apnea, bradycardia, or holding the hand in front of the face. Ask a nurse to help you.
• Participate in kangaroo care with your baby.

Tips for Home

• Don't be afraid to ask visitors to wash their hands upon arrival or to stay away if they are not feeling well.
• Keep a pad or notebook for doctor's phone numbers, appointments, and medication doses. It's a lot to try and remember.
• Try to include siblings as much as possible in the care of your preemie: have them bring you a diaper at changing time, make funny faces to entertain the baby, sing, etc.
• The Graco Travel System is really great for preemie moms. You can totally enclose your preemie (forming a bubble) to protect your baby from germs at the doctors office.
• Use your preemies adjusted age as long as necessary to judge their developmental stage. For example, a if your preemie is 6 months old but is only 3 months old adjusted age they won't be ready to start solid foods yet.
• Dads should try using exercise and massage as a way to interact with your preemie. It helps connect with the baby and gives you some "Dad time" while helping build muscle tone for the baby.

Feedings

• Prop up babies with reflux for 20-30 minutes after feedings.
• Make a note of the last time and how much you fed the baby so when your spouse gets up for the next late night feeding they know what you did without waking you up.
• Try breastfeeding but know that some babies don't take to breastfeeding easily after being fed intravenously and by bottle for a long time.
• Rent or buy a breast pump so you can provide milk for your baby even in the NICU.
• Remember to clean the parts of the breast pump well.
• Let Dad or a family member feed the baby if they are bottle fed so Mom can rest for a few hours.

Medications

• If possible, pull medication in as many doses as you can so it's available when you need it. Ask your pharmacist or your doctor for extra syringes.
• When preparing to go home from the NICU, be sure to place and pickup your preemie's prescriptions several days before coming home. Ask for the prescriptions in advance.
• Many of the prescriptions for preemies need to be compounded, which can only be done at a few pharmacies. You may need to search around before finding a pharmacy that does this. Ask the NICU staff which pharmacies might have the typical preemie medications on hand in the right format.
• When giving medicine to your preemie, try putting the tip of the syringe toward the inside of a cheek and slowly release the medication. That will help avoid having it go down too fast and cause choking or gagging.
• If your preemie seems to really dislike the flavor or the medicine ask your pharmacist about Flavor RX. For a small fee (insurance may or may not pay for it) they will draw up the prescription with a nice flavor to make it less bad tasting. You may have to repeat the request with each refill of the medication.
• Use a chart to track what medicines your baby has taken and when. This is especially helpful and limits confusion when more than one person is giving the medications.

Insurance

• Get organized
  • Keep notes in a notebook on everything as it progresses.
  • Get a large envelope or a set of manila folders so you can divide up the insurance Explanation of Benefits by provider and organize from there.
  • Write up a list of the various providers, their phone numbers, their addresses, and their office hours.
  • Make copies of your and your child's insurance cards.
• Working with medical providers and insurance companies
  • All conversations with providers should be polite and professional.
  • Update medical providers on issues with insurance.
  • Take notes on each and every phone call and make sure to include the date, time and the person you spoke to (ask for full name and be clear you need a correct spelling of the name)
  • You have the right to challenge a denied claim, so if a simple phone call to the insurance company won't work then move onto writing an appeal letter.
  • Medical providers may already have information typically used in appeal letter; give them a call to check and see if they could assist you with the letter.
  • When mailing an appeal letter, take a simple but important step of sending the letter certified with return receipt so that you can make sure that the insurance company got the letter.
  • Follow up on issues/questions/appeals often to be sure they are dealt with in timely manner.
  • Ask the human resource department of you or your spouse's company to help you with insurance issues; some have ombudsman or liaisons to help employees.

Therapy

• Make sure to get recommendations about therapy before leaving the NICU as well as contact numbers for local therapy resources.
• Check with your insurance company and your local city or county to determine what therapy will be paid for or offered.
• Be ready to describe what your preemie likes to do/can do/ cannot do to give the therapist an understanding of your child.
• Ask questions if you don't understand the therapists' recommendations.
• Have the therapist explain the results of any developmental testing.
• Participate in your child's therapy sessions so you can repeat the exercises and games between therapy sessions.
• Ask if at home setting or a therapy center setting (or both) would be better for your child.
• As your child near age 2 start looking at options for continuing therapy; frequently age 2 or 3 is the cut off for some services and the beginning of other services.