Prematurity and the NICU

I am adding to this page often so please check back.

I'm hoping that it can help be a good resource of information for any new parent/family/friend helping to care for a special someone born premature.

From www.preemiehelp.com 

Preterm infants are at greater risk for both short and long term difficulties. The tinier and earlier a preemie is born the greater the risk for complications.

Premature babies are not just tiny; they are at risk for a number of health concerns, including breathing difficulties, brain injury, eye disorders, infection, bowel problems and heart dysfunction.
The issues surrounding preterm birth can be complex but we have tried to cover everything you may want to know. If you have any questions please ask them in our forums.

Read more about Preemies & Allergies by preemiehelp.com  

If you find yourself a preemie parent or a friend/family member of someone going through this, I hope this can be a little cheat sheet for you.

Please know that the NICU jargon is overwhelming at first but you'll be speaking/understanding it faster than you know. 

The following has been extracted from the March of Dimes:

What happens when babies are born at less than 28 weeks?
Fewer than 1 percent of babies in this country are born this early, but they have the most complications (1). Most of these babies are born at extremely low birthweight (less than 2 pounds, 3 ounces). Almost all require treatment with oxygen, surfactant and mechanical assistance to help them breathe.

These babies are too immature to suck, swallow and breathe at the same time, so they must be fed through a vein (intravenously) until they develop these skills. They often cannot cry (or you cannot hear them due to the tube in their throat) and they sleep most of the day. These tiny babies have little muscle tone, and most move very little.

Babies born this early look very different than full-term babies. Their skin is wrinkled and reddish-purple in color and is so thin that the blood vessels underneath can be seen. Their face and body are covered in soft hair called lanugo. Because these babies have not had time to put on fat, they appear very thin. Most likely, their eyes are closed, and they have no eyelashes.

These babies are at high risk for one or more of the complications discussed above. However, most babies born after about 26 weeks gestation do survive (about 80 percent at 26 weeks), although they may face an extended stay in the newborn intensive care unit (NICU) (13).

Survival rates can vary greatly depending on factors other than gestational age. Factors that can improve survival rates include higher birthweight, female sex, history of prenatal treatment with corticosteroids (drugs that speed lung development) and singleton birth (not part of a twin or other multiple birth) (14). Unfortunately, about 25 percent of these very premature babies develop serious lasting disabilities, and up to half may have milder problems, such as learning and behavioral problems (15).

Premature babies are at risk of many serious medical complications. One of the most common of these is respiratory distress syndrome (RDS). Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by two-thirds.

Many babies with RDS receive additional oxygen and mechanical breathing assistance. These treatments, though lifesaving, can contribute to lung injury and a chronic breathing problem called bronchopulmonary dysplasia (BPD). Up to 50 percent of the smallest survivors (under about 2 pounds) develop BPD. 

Our twins were born at 28 weeks but because of the medical issues they were already dealing with IN the womb, they were the size of 26 week babies. 

Our babies struggled with the breathing and eating issues more than anything else and for quite some time. Alex was in the NICU for 102 days and Nicholas for 107 (but who was counting?) Three years later we are still having side effects/complications from the very treatments that saved their lives but we are still the luckiest people I know. 

The only thing from this list we were blessed not to have to learn intimately about was the IVH although the threat held over us for those first several weeks. 

Looking back there is not ONE thing that we would have done or chosen differently during our three month long stay in the NICU. Well nothing except breathe a little deeper and trust in God a little more. 

one tip for parents of multiples someone had shared with us:

Use different colored blankets in each of the babies NICU beds

so later in pictures you know who was who. 

We used Green blankets for Alex and Blue for Nicholas. 

Here are some of the common NICU terms you might hear

all extracted from the March of Dimes:

Adjusted or corrected age: In our NICU we frequently heard "day of life ____" and what their adjusted age would be. Quite simply you subtract however many weeks/months your child was born early. For example our babies might have been six months old from the day they were born but their adjusted or corrected age was only three months. Babies born premature tend to look and act more like this adjusted age until approximately two years old. Although in our experience severely premature babies tend to take even longer to "catch up" developmentally and often times physically. 

Anemia: From March of Dimes: "Premature infants often are anemic, which means they do not have enough red blood cells. Normally, the baby stores iron during the later months of pregnancy and uses it late in pregnancy and after birth to make red blood cells. Infants born too soon may not have had enough time to store iron.

Babies with anemia tend to develop feeding problems and grow more slowly. Anemia also can worsen any heart or breathing problems. Anemic infants may be treated with dietary iron supplements (drugs that increase red blood cell production), or they may require blood transfusion". This was unsettling to hear and our babies needed frequent blood transfusions in the early weeks but we later learned was quite common. 

Apnea: periods where the baby stops breathing. This can happen even when your baby is on a ventilator, especially in the early weeks after birth. Your baby will be hooked up to a machine that will sound an alarm whenever this happens and they are monitored closely. This is very scary but unfortunately premature babies are very prone to this. Can resolve on its own or the NICU staff will intervene. (I swear I STILL hear the "alarms" in my head in my sleep sometimes and its been almost three years since we left the NICU).

Blood gas: a common blood test in the NICU used to assess oxygen and carbon dioxide levels in the baby. This is checked regularly and whenever they needed to see if they needed to change the levels on the ventilator settings (either more or less). 

Brady (Bradycardia): periods where the baby's heart rate slows. Usually associated with Apnea spells. You will often hear a NICU staff talk about the baby's "A's & B's". This is monitored by an alarm that will sound and often the baby's heart rate will come back up without intervention. In the early weeks, our babies were given caffeine treatments to keep their heart rates up until they could do it better themselves. 

Chronic lung disease (also called bronchopulmonary dysplasia or BPD): "Chronic lung disease most commonly affects premature infants who require ongoing treatment with supplemental oxygen. The risk of BPD is increased in babies who still need oxygen when they reach 36 weeks after conception (weeks of pregnancy plus weeks after birth adding up to 36 or more weeks). These babies develop fluid in the lungs, scarring and lung damage, which can be seen on an X-ray.

Affected babies are treated with oxygen and medications that make breathing easier. Sometimes they require support from a ventilator and are weaned slowly from the device. Their lungs usually improve over the first 2 years of life. However, many children with BPD develop chronic lung disease resembling asthma."

Continuous Positive Airway Pressure (CPAP)-"Supplemental oxygen or room air delivered under pressure though either anendotracheal tube (tube that goes directly into the infant's lungs) or small tubes or prongs that sit in the nostrils. Delivering oxygen under pressure helps keep air sacs in the lungs open and also helps maintain a clear airway to the lungs. Nasal CPAP (NCPAP) is commonly used immediately after removing the endotracheal tube to treat apnea and/or prevent the need for an endotracheal tube and ventilator."

When our boys graduated from the ventilator to CPAP, it was actually harder for us to see. It looks even more cumbersome but it is gentler on the baby's lungs.

Incubator/Isolette: Their first "bed." Provides warmth as premature babies can not hold their body temperature yet and also provides protection against illness, noise, and light. I'm kicking myself for all the times I propped the coverlet open to stare into one the babies. I've since learned that babies born at 28-30 weeks can get quite stressed from light/noise. Think of how dark and quiet (or at least muffled) it is where they are "supposed" to be. 

Intraventricular hemorrhage (IVH) or brain bleed): "Bleeding in the brain occurs in some premature babies. Those born before about 32 weeks of pregnancy are at highest risk. The bleeds usually occur in the first 3 days of life and generally are diagnosed with an ultrasound.

Most brain bleeds are mild and resolve themselves with no or few lasting problems. More severe bleeds can affect the substance of the brain or cause the fluid-filled structures (ventricles) in the brain to expand rapidly. These severe bleeds can cause pressure on the brain that can lead to brain damage (such as cerebral palsy and learning and behavioral problems). When fluid persists in the ventricles, neurosurgeons may insert a tube into the brain to drain the fluid and reduce the risk of brain damage." Our sons were monitored closely for this but fortunately were spared. I know of several very premature babies who had small brain bleeds and went on to function very normally. 

Infections: Premature babies have immature immune systems that are inefficient at fighting off bacteria, viruses and other organisms that can cause infection. Serious infections commonly seen in premature babies include pneumonia (lung infection), sepsis (blood infection) and meningitis (infection of the membranes surrounding the brain and spinal cord). Babies can contract these infections at birth from their mother, or they may become infected after birth. Infections are treated with antibiotics or antiviral drugs.

Intubation: "Inserting a tube into the trachea (windpipe) through the nose or mouth to allow air to reach the lungs". Commonly associated with ventilators. 

Jaundice: "Also known as Hyperbilirubinemia. Jaundice comes from the accumulation of a natural waste product, bilirubin. As red blood cells and other tissues are replaced in the body, the waste products of their breakdown are normally eliminated by the liver. Bilirubin has a yellow color, and when the levels are high it stains the skin and other tissues.

A little jaundice can be expected in all newborns. If the jaundice is higher than usual, it can usually be treated with phototherapy (special lights). Phototherapy is so effective in helping the liver excrete bilirubin that elevated levels are rarely a problem. Prematurely born infants may have elevated bilirubin levels for several weeks". Our boys and many of their NICU friends were in/out from the phototherapy lights several times. 

Kangaroo care: "Skin-to-skin contact between parent and baby. During kangaroo care, the baby is placed on the parent's chest, dressed only in a diaper and sometimes a hat. The baby's head is turned to the side so the baby can hear the parent's heartbeat and feel the parent's warmth. Kangaroo care is effective, but it's limited to babies whose condition is not critical". We had to wait several weeks to be able to do this until our boys were stable enough. This is a very difficult test in patience because all you want to do is hold your baby(ies) especially after they are born and watching them go through a litany of tests/procedures. Our babies could not keep their heart rates and blood pressures up well (LOTS of A & B alarms) so any movement/stress made this worse. Yes I fought the case that being up close against their mother could ONLY benefit them. It only took ONCE for them to sort all the wires, cables and tubes and finally have one of my boys in my arms and watch him turn blue 30 seconds later that I realized as much as I was ready, he was not yet. 

If you have a micro preemie (a baby born less than two pounds) you will likely have to be patient about this. I initially held Nicholas the first time at exactly a week old. It was a blissful couple minutes but even cuddled up against me he lost his body temperature very quickly and he struggled to keep his sats up. Babies at 28 weeks are meant to be curled up safe and undisturbed in the womb, not taken in and out of their plastic "wombs". 

Nasogastric Tube (NG Tube)--"Narrow, flexible tube inserted through the nostril, down the esophagus, and into the stomach. It is used to give food or to remove air or fluid from the stomach". My boys had these for most of their three month stay until they could handle enough liquids by mouth. 

Nebulizer Treatment--"A nebulizer humidifies air and/or oxygen that is passed to the infant. At home, a nebulizer is a way of delivering medication — it transforms medicine into droplet form for inhalation. Used for a variety of lung problems". It is just a mask and easy to use. Very common to come home with these treatments as well. At almost three years old, both of my boys still need them. 

Necrotizing enterocolitis (NEC)---"Swelling, tenderness and redness of the intestine caused by an infection or decreased blood supply to the intestine. The seriousness of NEC varies: it may injure or destroy parts of the bowel, or it may affect only the innermost lining or the entire thickness of the bowel". Both boys had several scares with this. Alex in particular had many concerns of the length of his NICU stay until it was finally determined that his GI tract just moved very slowly, not that uncommon with babies born with Spina Bifida. 



Oximeter (Pulse Oximeter)--"Machine monitoring the amount of oxygen in the blood. A tape-like cuff is wrapped around the baby's toe, foot, hand or finger. This machine allows the NICU staff to monitor the amount of oxygen in the baby's blood without having to obtain blood for laboratory testing". Many people also take one home with them as well, especially if the baby is still needing oxygen. We certainly had a love/hate relationship with ours. 

Patent Ductus Arteriosus (PDA): "PDA is a heart problem that is common in premature babies. Before birth, a large artery called the ductus arteriosus lets blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus arteriosus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen.

When the ductus arteriosus does not close properly, it can lead to heart failure. PDA can be diagnosed with a specialized form of ultrasound (echocardiography) or other imaging tests. Babies with PDA are treated with a drug that helps close the ductus arteriosus, although surgery may be necessary if the drug does not work."

 The medications were given several times to each of our boys but unfortunately they both ended up needing the surgery. It sounds terrifying, anything to do with the heart but it was a very quick surgery and the boys both recovered very well. 

Retinopathy of prematurity (ROP): ROP is an abnormal growth of blood vessels in the eye that can lead to vision loss. It occurs mainly in babies born before 32 weeks of pregnancy. ROP is diagnosed during an examination by an ophthalmologist (eye doctor) several weeks after birth.

Most cases are mild and heal themselves with little or no vision loss. In more severe cases, the ophthalmologist may treat the abnormal vessels with a laser or with cryotherapy (freezing) to protect the retina and preserve vision.

Sepsis---"A potentially lethal infection of the bloodstream which occurs when the body's normal reaction to inflammation or a bacterial infection goes into overdrive. Certain lab tests, cultures, and x-rays can help diagnose this condition, which is treated with antibiotics. Also known as Systemic Inflammatory Response Syndrome (SIRS).

Septicaemia is sepsis of the bloodstream caused by bacteremia, which is the presence of bacteria in the bloodstream, but this term is also sometimes used to refer to sepsis in general". 

Our son Nicholas was found to have sepsis just after he graduated the first time from his isolette into an open crib. We literally watched him deteriorate in a very short amount of time. He couldn't keep his oxygen levels up, his heart rate kept dipping and he suddenly looked very ill. The NICU is a very scary place to be and this was one of those moments that took me to the edge. They had to put him back on the ventilator and tried several different IV antibiotics over the course of a week but he finally recovered. 

Tachycardia- A faster than normal heart rate.
Tachypnea-A faster than normal respiratory rate.


 The NICU road can be a very scary and lonely road. I quit my job after my boys came (a very bittersweet decision) but a decision we were lucky enough to be able to choose at that time. I spent all day every day alternating between the two boys and learning and doing everything I could to advocate for them and participate in their care. 

I was fortunate to meet and find friendships with other parents in the same NICU room and share our stories, our fears, our triumphs. We would look out for the other babies whenever a parent couldn't be there, exchanging phone numbers and emails, and many times prayers. The NICU time was one of the most terrifying and loneliest periods of our life. Time stretches out mercilessly slow and you feel suspended in those moments, as if you'll never be able to move forward. Your friends and family do not know what to say, what you need, and too often, neither do you. 


Every one deals and grieves differently. There is no right/wrong way.
Here are some ideas/tips for the parent or family/friend of a NICU family:

• Show up, just be there. Okay maybe not in those first few days if the person/family tends to be very private. I wanted really just my parents and my husbands parents, and my Aunt those first few days by our side but after that, just come. visit. bring coffee. bring food even if just to drop it off. Don't wait for them to ask, they won't. They are living moment to moment and honestly will forget that they need to eat too.
• Its fine to leave messages, or notes that you are thinking of them. Don't expect them to call you back and give you updates. Don't say "let me know what we can do for you." They won't either because they don't know or they don't want to put you out. Reach out in whatever way you can whether that's a visit, sharing them on your church prayer list, bringing food, toiletry kits, tokens for coffee cart, parking garage, etc.
• If you are a close family or friend, offer to sit with the baby in the NICU while mom/dad goes to get coffee, takes a walk or a shower. Many parents have a VERY difficult time leaving the NICU for any amount of time (until we get kicked out for rounds or for the night) but it helps if we think there is someone there with our baby (other than the amazing nurses and doctors). 
• Remember its okay to celebrate the birth of the child too!!! I was touched of the new baby flowers and cards I received. Its a very bittersweet time and I know people were so afraid to share joy/celebration because of the boys critical condition those first few weeks but I was still so happy to have become a mother, even if it was far earlier in the pregnancy than I hoped. One of my favorite gifts was from my Aunt. She had found bracelets with each of the boys names on them. I was very touched. There is something very tangible about having something with your babies names printed on them. My husband and I wore them every day and it felt like even when we weren't at the hospital, the boys were with us. We still have those bracelets in the boys keepsake boxes. 
• when its allowed, bring in NICU approved clothing/hats. When our little ones were deemed not so  critical anymore, they allowed us to bring in clothing for them. Every NICU has their own rules but ours allowed all buttoned down clothing. It seems so small but seeing them in little clothing made it feel like it was that much closer to getting them home, to some sort of "normal." We still have the boys knitted Fourth of July hats. They were given to us by donors for the NICU. It was a little thing but made us smile. 

If there is any one reading this and has any other tips to add, please feel free to do so in the comment section. I'm sure I'm forgetting things.

Lastly, there is nothing like being able to "talk" to someone who has walked this road. The babycenter group is a great one to check out. I STILL freak out when one of my sons gets a respiratory infection. He has had countless hospitalizations and on/'off oxygen to help recover often from "simple" viruses that other kids just shrug off with a runny nose. I STILL find myself "on guard" about illnesses and that preemie "mindset" of what next?

Research has found that many parents struggle with PTSD like symptoms after experiencing a stay in the NICU. http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=all

I have found the most important thing has been to find supportive friends/family that don't just tell you to "get over it". Often times the only people who truly "get" where you are coming from are others that have gone through it too.

Talk with your NICU social worker about putting you in touch with a "veteran" parent or check on line for support in your area. The NICU social worker put me in touch with a parent group that met locally once a month and its been wonderful to find other people right in my backyard who can relate to what I've gone through, discuss specific local resources for doctors/clinics, etc.

This is the group I was lucky enough to get paired up with and hopefully there is something similar in your area.
 http://www.parenttoparentnys.org/

Also worth checking out is just on-line support in general. It was helpful to be able to turn on the computer any time at night and "talk" with other moms who "got it". It made those long sleepless nights where you wondered if you'd get a call from the hospital that night a little more bearable. 

Online support:

http://community.babycenter.com/groups/a3605/preemie_parenting

http://www.marchofdimes.com/mission/localprograms.html

Picture taken at four and a half months 

(one and a half months "adjusted age")