by Laura Nathanson, M.D., FAAP,
It's natural to have mixed emotions when you take your baby (or babies!) home from the Neonatal Intensive Care Unit. You're thrilled to have Cherub all to yourself, but struggle with doubts: Can you really care for this fragile being? Do you really understand what that care consists of?
Here are some guidelines to help inspire you with the confidence you need.
Make Arrangements Ahead of Time to Take the Medical Records With You.
True, you may never need them in an emergency; but if you do, it may be crucial to have them instantly available rather than sitting in a computer or on a file shelf. Moreover, it's best to read them over to make sure there aren't any surprises or errors lurking in there.
To obtain them, go to the Medical Records Department of the hospital, and sign a permission slip. You need to present photo ID, and you'll need to pay a copying fee. If possible, make sure you get the following documents:
Admission history and physical examination
- Most recent specialist evaluations -- the reports on the state and follow-up of the eyes (ophthalmology), heart (cardiology), brain and nerves (neurology) and so on.
- Discharge summary: This is a summary of the entire hospital stay, and may not be available until after discharge. Ask the NICU doctor "covering" your baby when to expect it to be ready.
- Discharge orders: These are written and signed by the "covering" doctor on the day of discharge. You should be given your own copy (make sure it is signed), and should include the following:
- Feeding instructions
- Medication instructions, including oxygen administration
- Monitoring instructions, with the settings of "normal range" for each monitor, how to reach the company supplying the monitor, and what to do in the case of monitor malfunction
- Equipment instructions: catheters, feeding tubes, dressings: how and how often to change them, where to purchase them, and how many to get
- Things left undone in the NICU:
- Your baby should have had a hearing test: If it could not be done, or is not a "Pass," a second test should be done in the near future.
- Your baby should have had the routine, State mandated blood test to screen for treatable, inherited conditions. Some call it the "PKU" test. In all the bustle of the NICU, sometimes this routine test goes unperformed.
- Follow-up instructions:
- Specialist follow-up appointments: Doctor's name, phone number, date of appointment (or range of dates in which to make appointment), and reason for specialist.
- Studies (x-rays, ultrasounds, blood work) with accompanying order forms stating when, where, and what is to be studied, and why.
- Flag on studies that have been performed during the NICU stay whose results have not yet arrived. Tests on chromosomes and for "metabolic" or chemical abnormalities may take days or weeks to complete. Date of expected return of results, and how to obtain them.
- Pediatrician follow-up: your very own "baby doctor," charged with coordinating specialist care and providing routine baby care.
Get Everything in Writing
- Be sure that the discharge instructions are clear, complete, and specific. If you are going to be administering medication, even vitamins, make sure you know whether it needs to be increased as the baby grows, what to do about a skipped dose or overdose, or if the baby spits it back at you.
- If your baby needs special equipment, make sure you are comfortable with handling it. If your baby has been on one kind of equipment in the Unit, but will be on another type of equipment at home, make sure you understand why. Ask about the proper use of the new equipment. (This is particularly common if a baby is being treated for jaundice with "light therapy." The home version may consist of a suitcase-like contraption or a blanket.)
- If your baby has a problem that needs follow-up care, ask for an information booklet on that problem. This is particularly important in these conditions:
- Your baby required oxygen AND either was born younger than 35 weeks gestation, or has been very sick. In this situation, the back of the baby's eyes (the retina) must be checked until it is fully mature, which may not happen before discharge. This is because oxygen can interfere with normal maturing of the retina. When this happens, this abnormal maturing must be diagnosed and treated very promptly, or it can proceed rapidly to severe eye problems or even blindness. If your baby is scheduled to see an eye doctor as a follow-up to this problem, MAKE SURE YOU KNOW EXACTLY WHEN AND WITH WHOM THIS IS SUPPOSED TO OCCUR. (The medical name for this is Retinopathy of Prematurity, or "ROP.")
- Your baby is taking a crucial medication to prevent brain seizures ("fits"), to aid the functioning of the heart, or for any other major condition. Babies can outgrow their medication doses rapidly, once they start to thrive.
- Your baby has had a condition that will probably improve but might not do so, or even get worse. This includes anemia (low blood) and jaundice (yellow skin and whites of eyes). New parents can't, and should not be asked to, tell by looking at the baby how things are going.
- Your baby has any condition that might impair development, such as some kinds of seizures, fluid on the brain, or abnormal muscle tone. Many such conditions respond to prompt non-medical treatment, such as "early intervention" physical and occupational therapy.
- Your baby has not had, or has had an abnormal, hearing test screen. The sooner a hearing-impaired baby is diagnosed and treated, the better the outcome for language and learning.
Once You've Caught Your Breath, Review the Medical Records You've Brought Home
You're not being paranoid or distrustful, just vigilant.
- The Discharge Orders you already have should include everything mentioned in the Discharge Summary, once it becomes available. Look at the last part of the Summary, usually labeled "Plan," to check this.
- The entire Discharge Summary should agree with your understanding of your baby's problems, course, and treatment.
- The Admitting History and Physical should be accurate. You should find the baby's birth weight, circumstances of pregnancy and birth, family history.
- There are no surprises -- no mention of an incident or diagnosis that you aren't aware of.
- Your own information (name, phone number, address etc.) is accurate, in case the hospital needs to reach you for any reason.
If you find an omission, error, or inconsistency, make an appointment with your pediatrician and take the papers and your notes with you.
There. Now you have done your homework, and can concentrate fully on Cherub.
Dr. Laura Nathanson is the author of What You Don't Know Can Kill You (Published by Collins; May 2007; $15.95US/$19.95CAN) and The Portable Pediatrician (Collins, 2002), as well as several other books. She has practiced pediatrics for more than thirty years, is board certified in pediatrics and peri-neonatology, and has been consistently listed in The Best Doctors in America. For more information, please visit Dr. Nathanson's site.
Copyright © Laura Nathanson. Permission to republish granted to Pregnancy.org, LLC