Breaking Down the #1 Question of Every NICU Parent
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What is the #1 Question of NICU Parents?
There are so many questions and concerns that come up for NICU parents, but in my experience, once your infant is stabilized, THE most common question that comes up is, when will my baby be able to come home? Believe me, I think it’s absolutely a fair question to ask, but unfortunately, also a very difficult one for the NICU care team to answer. The patients who are admitted to the NICU are there due to their need for additional monitoring, and specialized, critical care.
Not only do their individual diagnoses make them unique, but even infants with the same diagnosis will have entirely different pathways during their NICU journey. What makes the answer even more troubling not only for the NICU care team but especially for you as a parent to absorb is that your baby’s individual NICU timeline is ultimately up to your baby!
We as members of their care team can try to answer the question of when your baby will go home based on research and our experience with former infants with your baby’s diagnosis, but there is not a definitive answer. Believe me, we ALL wish we could look into a crystal ball and tell you the exact date to ease your mind and for planning purposes, but it just isn’t that easy!
But, I will try to break it down and answer that question with some common diagnoses of infants in the NICU.
Extremely Preterm Infants
The tiniest of the tiny in the NICU are those born before 28 weeks and are typically referred to as extremely preterm infants.
Due to research, medical advances, and ever changing evidence-based care, more infants are surviving at younger gestational ages, even 22 weeks. But, even with those advances, infants born at 22-24 weeks gestation tend to develop more complications and morbidities which not only affect their future, but they can also prolong their hospital length of stay.
Extremely preterm infants have extremely low birth weights, typically less than 2 pounds and often need intensive care support to stay alive. Due to the infant’s extreme prematurity, they also have very immature organs which affects their systems and overall course.
The risk of complications these babies are at risk for increases with their degree of prematurity. Meaning, the younger their gestational age, the more they are at risk for increased complications. Therefore, extremely premature infants require a longer stay in the NICU until their organs can function independently on their own or with minimal support.
Extremely premature infants have underdeveloped brains which increases their risk for, bleeding in the brain or intraventricular hemorrhage (IVH), inconsistent breathing patterns and ultimately apnea of prematurity, and immature coordination of sucking, swallowing and breathing during feeding.
Their digestive tract is also immature which can lead to not tolerating feedings well, slow motility, and an increased risk of intestinal damage. Due to their immature digestive tract and risk of complications, feedings are advanced very slowly and often interrupted due to intolerance. To support these tiny infants while their feedings are cautiously advanced, they also need prolonged central IV access either with a UVC and possibly even a PICC line.
An underdeveloped liver coupled with slow initiation of feedings leads to elevated bilirubin levels or jaundice in preterm infants that require phototherapy.
Although it varies, fetal lungs are not fully developed until 37 weeks gestation, or near term. The tiny air sacs or alveoli we all use for air exchange of oxygen and carbon dioxide are not fully formed yet in these infants. Additionally, preterm infants are lacking surfactant which is a fatty substance that coats the inside of the alveoli. Surfactant assists with air exchange and it helps to maintain the structural integrity of the alveoli.
Due to the immaturity of the lungs, an extremely preterm infant will likely require some form of respiratory support, either via an endotracheal tube (ETT) or a breathing tube, non-invasive ventilation (nIMV) with a cannula, or CPAP to support their breathing. Some extremely premature infants are unable to be fully weaned off of their respiratory support despite all of the treatments provided to them in the hospital and may need to go home either on a low flow nasal cannula or possibly a tracheostomy.
Extremely preterm infants also have an underdeveloped immune system and lower levels of antibodies which puts them at an increased risk for developing an infection. The invasive devices that are necessary to sustain their life, also place them at an increased risk of developing an infection. And for this group of infants, they tend to have more invasive lines in place and for longer periods of time as well.
Extremely preterm infants also have immature kidneys that have a big job to take over from the placenta. Unfortunately, due to the immature kidney function in very preterm infants, they have a difficult time regulating all of the fluid and electrolytes in their body especially in the first few days of life which puts them at an increased risk of abnormal electrolyte levels.
In regards to the heart, extremely premature infants are at an increased risk to be affected by a patent ductus arteriosus or PDA. In full term infants, the ductus arteriosus typically closes in the first few hours after birth. When it doesn’t close in preterm infants, it may result in excessive blood flow through the lungs and increased work on the infant’s heart. For some premature infants it does eventually close on its own, yet for others, additional interventions need to be done.
Extremely preterm infants are also at an increased risk of hypoglycemia or low blood sugars, difficulty maintaining normal body temperatures, and eye complications.
Therefore, if your baby was born between 22 and just under 28 weeks, you can expect them to require intensive care and remain in the hospital until they are close to term or at times beyond their due date. Once these infants are able to fully nurse or bottle feed, consistently gain weight, maintain their temperature in an open crib, are stable on room air, and are free of apnea episodes, they will be able to come home with you!
Typically, if their discharge home is delayed it is either due to the inability to be weaned off of extensive respiratory support and the possible need for a tracheostomy, inability to sufficiently nurse or bottle feed with the possible need of a gastrostomy tube (G-tube), persistent apnea and/or due to significant complications that arose during their hospital stay.
Very Preterm Infants
Infants born between 28 weeks up to 32 weeks gestation, are considered very preterm. They are at risk for the conditions mentioned above, but the risk is lower since they are more developed. During the beginning of the 3rd trimester around 28 weeks, your baby’s brain undergoes rapid growth and development and it becomes less smooth and develops more grooves. Therefore, there is a decreased risk of intraventricular hemorrhage (IVH) and severe apnea of prematurity.
Around 28 weeks gestation, an infant has a sufficient amount of alveoli to breathe on their own, but they do not have enough surfactant in their lungs and will still typically require support with their breathing typically with non-invasive ventilation, CPAP, and possibly an endotracheal tube. But this age group is less likely to require home oxygen at discharge.
Infants born between 28 up to 32 weeks still have an underdeveloped digestive system, so they are also at an increased risk for feeding intolerance, decreased motility, and intestinal damage.
Very preterm infants also have an immature immune system, so they still have increased susceptibility to infections. The likelihood of very preterm infants requiring intervention for a persistent PDA is still present, but not as common as those extremely preterm infants.
So if your infant was born at 28 weeks through 31 weeks, they are at risk for complications due to their underdeveloped organs and systems, but not as significantly as extremely preterm infants. Unless they have experienced significant complications, this group of babies are likely to be discharged home at their due date or possibly even a couple of weeks before depending on their coordination with feedings, ability to maintain their temperature, being weaned to room air, and if they are free of any apnea episodes.
Moderately Preterm Infants
Infants that are delivered at 32 weeks up to 34 weeks are called moderately preterm infants. Moderately preterm infants will still require an admission to the NICU, but their length of stay is typically less.
Moderately preterm infants may still experience apnea of prematurity. Their brains continue to grow at this gestation and myelination continues. The lungs of a moderately preterm infant are continuing to produce surfactant, but the amount is not quite adequate and alveoli continue to grow, but infants of this gestational age may still require some respiratory support and possibly administration of surfactant.
Their immune systems are still immature compared to a term infant, so they are more susceptible to infections. But at this gestation, their kidneys are developed and they are much less likely to be affected by a PDA.
Feedings will be initiated slowly due to their immature digestive system, but again they are at much less risk of complications compared to the extremely preterm and very preterm infants. Infants begin to develop coordinated sucking, swallowing, and breathing with nursing and/or bottle feeding around 33-34 weeks. Therefore, depending on what gestation they were at delivery and if they show cues for readiness to attempt to orally feed, they may be able to attempt to try shortly after delivery or within the next couple of weeks. Now, how proficient they are at the ability to take their full feedings without displaying signs of stress or tiring, will vary from infant to infant. It is just that, their feeding effectiveness, plus consistently gaining weight, being in room air, free of apnea and/or bradycardic episodes, and temperature stability in an open crib that will determine when they can be discharged home.
Taking all of that into consideration, infants who are born in the moderately premature time frame tend to be discharged home near their due date, but often times a few weeks before.
Late Preterm Infants
Late preterm infants, or those born at 35 weeks through the 36th week of gestation can vary somewhat significantly in their presentation and complications. Late preterm infants may struggle with hypoglycemia, hypothermia or inability to adequately maintain their temperature, significant weight loss, respiratory distress, elevated bilirubin levels, apnea, and uncoordinated and/or inadequate feeding that will prevent them from going home.
Some infants within this gestational age window are stable enough to possibly stay with their parents rather than needing intensive care and go home within a few days. Whereas other infants may require respiratory support due to immature lungs or IV fluids due to persistent hypoglycemia and require a few weeks of hospitalization. Unfortunately, there is no way to predict how well your baby will do until they come out and prove themselves!
Sometimes, it is difficult for parents because their late preterm infant may look like a term infant due to their weight and look overall healthy, but they are still at an increased risk of complications due to their prematurity. There is still a lot of growth and maturation during those last few weeks of gestation that can make a big difference in the baby’s outcome. So although they may look like a term infant, remember that they are still considered premature and may need some additional intensive care.
There are also many factors prenatally that directly affect how a baby will do after delivery. For premature infants, if the mother had steroids, especially a complete course, it will improve the baby’s outcome. The baby can also be affected by the mother’s gestational hypertension, preeclampsia, gestational diabetes or any complications encountered during delivery. I do not list these diagnoses by any means to make the moms out there feel guilty, believe me – that is the LAST thing I want to do, but I just want to let you know that how a baby does postnatally and the path of their clinical course is multifactorial!
Term Infants
Term infant’s may also find themselves requiring intensive care for several different reasons.
Term babies can also become hypoglycemic with low blood sugars and require IV fluids. For infants with hypoglycemia, it may take several days to weeks for their blood sugars to stabilize exclusively with feedings. Infants of diabetic mothers may also have additional complications including but not limited to abnormal electrolytes, elevated bilirubin levels, polycythemia, respiratory distress, cardiac disorders, decreased tone, and many have suboptimal sucking when it comes to nursing or bottle feeding which may all affect the time required for them to stay in the hospital.
Term infants may also require respiratory support either due to meconium aspiration, PPHN, or a pneumothorax to name a few causes. These infants will need the initial condition that has required them to be placed on respiratory support to be treated so they can eventually be weaned to room air. While they are being treated for any of the above, they will require IV fluids, medications, nasogastric or orogastric feedings, and much more to stabilize them. Once they are weaned off of the respiratory support, they will have to nurse or bottle feed effectively before they can be discharged home.
Surgical infants also need support and treatment before and after surgery. Depending on the surgery, it will determine how quickly they recover. These infants will need to be weaned off of respiratory support, pain medications, and eventually worked up on feedings and off of total parenteral nutrition and/or IV fluids. Their recovery and timeline for home is dependent on the type of surgery, the length of their recovery and each individual infant.
Some term infants can be significantly affected by complications in utero or during delivery resulting in infants with low apgar scores, significant metabolic acidosis, extensive resuscitation, and/or seizures. Hypoxic ischemic encephalopathy or HIE occurs when both oxygen and blood supply is restricted to the baby’s brain in utero causing brain cells to die and release toxins to other cells.
Neonatal encephalopathy is characterized by disturbed neurologic dysfunction and may cause permanent health conditions and disorders. Some infants experience minimal health issues, or have mild to moderate effects whereas other children develop more significant disabilities, delays or cerebral palsy.
Infants with HIE are treated with up to 72 hours of therapeutic hypothermia and additional supportive therapies including but not limited to IV fluids, sedation, invasive lines, respiratory support. They often have extensive lengths of stay in the NICU due to the risk of damage to other organs and subsequent complications.
Summary
I hope that helps to answer a question that I know has been on your mind if you are a NICU parent. I know that this summary may not have touched on your baby’s specific diagnosis, but I hope it gives you some idea of what to expect.
And as previously stated, unfortunately, no one can give you a concrete answer to this burning question. As always, remember to ask your infant’s care team questions as you have them and stay involved.
Top Tips for NICU Parents
As a former NICU Mom and current NNP, I put together my top tips that all NICU parents need to know to help you along the way. The PDF will provide you with the knowledge and skills you need so YOU can take care of your baby! There are also tips to help with your unique financial situations on the link below to grab your copy!
Remember, once empowered with knowledge, you have the ability to change the course.
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