Life in the NICU
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
by Corinne Foreman
In a single year, over 4 million babies are born in the United States and the majority of parents are happily unaware of all the things that could have gone wrong. But roughly 12% of those births are followed by a stay in the Neonatal Intensive Care Unit (more commonly known as the NICU).
I speak from experience as a mother of three – two of whom have been residents of the NICU. Life in the NICU is a rollercoaster of events and emotions. Today I’m going to tell you about the joy, surprise, helplessness, fear, confusion, grief and anger involved in life in the NICU and a little about the joy and fear involved in going home after a long stay in the NICU.
No matter what other emotions accompany it, joy is usually the first and strongest emotion at the birth of a baby. Their arrival is highly anticipated. Even if they are born way ahead of schedule, we wait anxiously for them, counting down the days. When a child is in the NICU, sometimes joy is outweighed by worries and fears for a time, but there are moments that bring that joy back - moments that most parents take for granted. The first time you get to hold the baby, the first time you get to kiss them, the first time they wear clothes, and eventually, when you get to bring them home. These are experiences most parents expect to happen within twenty-four hours of life but for a NICU baby, there may be days, weeks or sometimes several months before their first kiss even.
Joy is quickly followed by (and sometimes outweighed by) surprise, especially since prematurity is the leading cause for NICU hospitalization. Many babies in the NICU are still named “Baby Boy” or “Baby Girl” since their parents haven’t had the time to decide on a permanent name. In fact, many times parents have not even had time for a baby shower, preparing the home, or even buying essential items like cribs or car seats. Even the most prepared parent is generally not prepared for a hospital stay of more than 24 hours – even if they had a complicated pregnancy. Parents have tours of local hospitals and birthing centers but never tour the local NICU. A parent doesn’t generally want to think about that possibility and they don’t prepare for it so it always comes as a surprise.
The most frustrating feeling in the NICU is helplessness. The average parent knows nothing about the medical equipment used in the NICU. They walk into the NICU and only know that their child has more wires, tubes and machinery attached to them than most dishwashers. There are generally at least three wires on their chest and one on the foot that connect to a monitor for their vitals. Depending on the child, there may also be an umbilical line or PICC line and there may be IVs in the baby’s feet, arms or scalp. There may be breathing tubes, feeding tubes, nasal cannulas, or even blindfolds for bililight treatment. Normally, when a child is hurt or scared, parents wants to hold them. It just seems to take away the pain and fear. But severely premature or low birth weight infants can react badly to stimulation, so the parents are discouraged from holding their baby. A lot of the times, all that the parents can do is just look at their baby with all the tubes and wires and try to sound comforting, speaking softly through the incubator plastic. The only experience I know of that compares with this helplessness is watching a loved one dying. There’s nothing you can do to help or change things. You can only watch and wait.
With this helplessness, naturally comes fear and confusion. We fear the unknown, and since most parents know so little about what is happening to their little baby, there is much to fear. The doctors and nurses rush around using terminology that might as well be a foreign language – apnea, bradycardia, bronchopulmonary dysplasia. All most parents know of these terms is that they mean something is wrong with their little baby. After a long stay in the NICU, parents start to become familiar with the terminology and technology. When all you can do is watch your baby, you have plenty of opportunity to look at the dozens of things going on for their care (the numerous medications and IV fluids, the specific vitals that are being monitored, the levels of oxygen on the ventilator or cannula, and many other things). Asking questions and researching can help to decrease the fear sometimes. But sometimes, the more you know about a condition just shows you how much there really is to fear. For example, asking what treatment options there are for bronchopulmonary dysplasia and hearing that there are steroid treatments that can be done that are 99% effective, decreases a fear. But hearing that the steroid treatments may cause severe neurological problems but without steroid treatment, the baby can die - not reassuring.
Sometimes, a parents’ worst fear is realized with the loss of their baby. Whether or not a child dies, death and life permeate the NICU on a constant basis. In fact, death is part of life in the NICU. Every parent in the NICU is fearing that their baby will die and many brace themselves for that possibility. Some witness as others experience a loss while others experience the loss first hand. I experienced loss first hand and it felt like the NICU froze and stopped functioning while I grieved, but when I later witnessed another family’s loss as they put up curtains for privacy and called in the chaplain, I realized NICU life continues. It just gets quieter for a moment out of respect for the grieving family. Within moments of the infant being taken away, the incubator is moved out and a new baby moved into their place. The NICU world continues moving. Many parents feel angry that their baby has to be in the NICU at all. They may feel cheated out of the joy that should come with a new baby and they feel jealous of other parents who get to take their baby right home and cuddle them. When a parent loses their baby, it is especially hard not to feel angry at the world. Even though the parents may know that there is no one to blame, it may seem like it would be easier if there was. They commonly try placing the blame with either the doctors or themselves.
For most, the stay in the NICU is ended by getting to go home. Whether it is after a few days or after several months, it is a happy occasion bringing home baby. There is a sense of relief that both parents and baby have survived the NICU. Life essentially picks up where it left off when baby was born. But things are a little different than expected. Though many leave the NICU with a clean bill of health, others leave with baggage. They may have special equipment for monitoring or treatment, numerous medications and scheduled appointments with specialists. For example, my own baby came home with a gastronomy tube in his belly for feeding, a feeding pump to use with the tube, an apnea monitor, six different medications, microlipids and thickener to add to his formula, and at least five specialists to follow up with outpatient. All of these factors lend to fear, naturally but even if the baby is discharged without the extra equipment, there is always the fear that they’ll have to return. For a preemie or low birth weight baby, a simple cold can mean a trip to the emergency room and more time back in the ICU.
Usually, the only people who know what life in the NICU is like are those who’ve been there – who’ve experienced this emotional rollercoaster from beginning to end. I hope that this speech is the closest any of you ever have to get to life in the NICU.
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