Many a baby with Down syndrome will tour the Neonatal Intensive Care Unit (NICU), even if only for evaluation and observation. That means you will get to spend some time there too.
What Your Baby Might Look Like in the NICU
Evaluating your baby might call for a series of tests and monitoring that will require wires and tubes that are attached in various ways to your infant. It can be pretty daunting to see your baby this way, and your post-delivery hormones won’t help. Here is a picture of what my daughter looked like the first time I saw her there. (Click on it for a large view.) I burst into tears. I will explain below what all the attachments are.
Some newborns have difficulty maintaining body temperature, so the NICU staff may place the baby in an open metal and Plexiglas bassinet that has a heater above it. To properly monitor body temperature, the baby is naked save for a diaper, and a tiny thermometer is stuck to the baby’s chest or stomach area. That is the gold circle on my daughter’s tummy.
Oxygen (O2) support is provided for a baby who is not maintaining the correct O2 saturation. There are several types of O2 support but in this picture you see a high-flow O2 nose cannula. To continuously monitor oxygen saturation levels, a tiny monitor inside a band-aid type material is placed against the infant’s foot or hand. It is then wrapped again in stronger material which you can see on my daughter’s left foot.
Our hospital’s better-safe-than-sorry practices required that our baby receive intravenous antibiotics until a blood test confirmed that no bacterial infection was present. This is what you see wrapped in tape on her right hand.
This is a good time to mention that general hospital staff are very quick to react to neonatologists’ and NICU nurses’ requests, so test results and specialists appear in record time. (Not always so in PICU, but that is another post.)
It is important to monitor the baby’s heart rate and this is done by sticking small monitors on the baby’s chest area. These are the little white and blue stickers on either side of my baby’s chest.
What you do not see pictured here is a nasogastric (NG) feeding tube that may be placed in your baby’s nose and the bili (spa) lights that might be placed around your child if his bilirubin levels are too high (the cause of jaundice.)
With numerous monitors attached to your baby, you can expect to hear them sound off every now and then, usually for no bad reason. If the O2 saturation monitor isn’t tight against your baby’s hand or foot, it will sound an alarm. If your baby wriggles around and loses a heart monitor sticker, you will hear an alarm. If you are holding your baby away from the bassinet, the temperature monitor might complain loudly. You will get used to these bells and eventually stop the mini panic attacks every time you hear them.
While all of this looks scary and overwhelming, none of it is painful (ok, except that initial IV prick) and none of it indicates that there is anything wrong with your baby.
Who You Will and May Meet in the NICU
Neonatologist - This doctor is specially trained to evaluate and treat newborns’ medical needs. In addition, neonatologists are experts in using the equipment that is designed specifically for the tiniest patients. There will be a neonatologist in or nearby the NICU at all times. (Again, not true with the PICU equivalent, but that’s another post.)
NICU Nurses - These nurses are specially trained to provide excellent medical care to newborns. They will provide general care to your baby, administer any necessary medication, and monitor vital signs. Along with caring for your baby, they will provide care, support and education to you as necessary. If your baby will be in the NICU for more than a couple of days, a primary nurse may be assigned to him. This nurse will make it her business to know everything that goes on with your baby. She can tell you how much he ate, peed, and slept today, as well as any changes in medications or other medical updates. A good primary nurse will get to know your child’s rhythms and can spot trouble before anyone else does.
Your Pediatrician - Your baby’s pediatrician will likely do rounds at the hospital and will check in to see how your baby is progressing. While your baby is in the NICU, the pediatrician does not call the shots but she can make suggestions or provide you with explanations of (read "decode") what the neonatologist may have already told you.
Respiratory Therapists - NICU respiratory therapists will handle all aspects of your baby’s O2 support to ensure the doctors orders are carried out to specification. They will drop by every few hours to check the equipment and your baby’s breathing.
Specialists - Any number of specialized physicians may stop in to check over your baby. We were visited by cardiologists, pediatric surgeons, our daughter’s heart surgeon, a gastrointestinal (GI) doctor, and many more.
Social Worker - A hospital social worker will stop by to see you in your recovery room or in the NICU to give you information about local Down syndrome groups, Medicaid, SSI, and many more things you will probably not be ready to hear (not because the information is bad but because things are already mind-boggling, and remember, those hormones aren’t helping.)
PCAs - Personal Care Assistants - otherwise known as "baby rockers" are sometimes called in by a busy nurse to soothe a crying baby whose mother isn’t readily available. PCAs provide only non-medical care in the NICU and you can request that they not be placed with your baby, if for any reason you prefer that.
NICU Pros and Cons
Most hospitals pride themselves on their well-staffed, state-of-the-art NICUs, so you can be assured that your baby is receiving the best care the hospital has to offer. The staff can be very knowledgeable and encouraging, and you may find it helpful to have this much support as you figure out your newborn.
Some hard parts about having your baby in the NICU would be that there is very little privacy in the NICU due to the setup (which is designed so that the nurses can see every baby at all times.) It can be frustrating and difficult to breastfeed your baby there even with a privacy screen that a nurse will set up for you. If a baby nearby yours is having a procedure, you may be asked to leave the NICU for a while. Visitors are limited and in some NICUs, children under a certain age are not allowed in at all. Once your baby enters the NICU, he may have to prove he can eat a designated amount of milk or formula every three hours before he can be discharged. Not being able to hold and snuggle your baby without a bunch of stuff attached just plain sucks. And my personal worst thing about NICU was being discharged from the hospital before my baby and having to go home without her. The separation was painful and I felt as though I had no say over my own newborn child.
Doing time in the NICU can be tough, but remember it is not forever. You are strong, and you and your baby will get through it.