In the first few days of our NICU journey, one of the nurses told us that it would be like a roller coaster. With its ups and downs and twists and turns, it was at times a bumpy ride. I would also compare it to a yo-yo. This might seem an unlikely metaphor because a yo-yo's ups and downs are steadier than a stay in the NICU. Yet, for me it works because I am one of those people who cannot seem to keep a yo-yo going. I try, but it always ends up spinning out of control.
There were certainly times that it felt like everything was out of control. At least it was out of our control. Buzzy was the one who determined the pace of things. How well she did with kangaroo care determined how long and how often we could hold her. How well she maintained her breathing rate and oxygen saturation determined when she could come off the oxygen. How she handled bottle feeds determined when she could come home. Sometimes the yo-yo was moving in the right direction, and other times it was just out of our reach.
The day Buzzy got to come home was like mastering the rhythm of the yo-yo and making a final flourishing catch. It was indeed a proud moment that we held tightly to. Since she has been home, we have been happy to be on a more even keel have even picked up a few tricks along the way.
Tuesday, November 29, 2011
Monday, November 28, 2011
X-Ray
I had my first X-ray when I got my retainer sometime in late elementary school. I remember sitting in a chair as a machine swung around my head taking a picture of my teeth. I wore a heavy lead vest to protect my internal organs, a vest that weighed more than my child did when she had her first X-ray.
The purpose of Buzzy's X-ray was to ensure good placement of the PICC line we consented to. This line went into her heart to deliver the medications she needed. It was a more permanent solution to the frequent IVs she had. After weighing the options, we decided to go with the PICC line to save Buzzy from having to be poked frequently. Ironically, it was only a few days after the PICC line was placed that she no longer needed the medications she received in those first couple of weeks. Thus, the PICC line was removed, and we only saved Buzzy from a couple of days of IV treatments.
In hindsight, I wish we had not consented to the PICC line so that Buzzy did not have to be exposed to the radiation of the X-ray. Yet, as I have heard it said, "Hindsight is 20/20." We could not have known that the PICC line would be removed only a few days after it was put in, and if we had it to do all over again, we would probably do no differently. Having one procedure done certainly sounds better than putting in a new IV each time it is needed, and with babies whose veins are minuscule, IVs have to be changed much more frequently than in an adult. Buzzy would have had to be stuck several times over those few days.
Parenting often involves choosing the lesser of two evils, and for us, the PICC line and accompanying X-ray seemed a good choice. It is not a choice every parent has to make, but I realize that in comparison to all that we will encounter as Buzzy's parents, having an X-ray will not be the most difficult.
The purpose of Buzzy's X-ray was to ensure good placement of the PICC line we consented to. This line went into her heart to deliver the medications she needed. It was a more permanent solution to the frequent IVs she had. After weighing the options, we decided to go with the PICC line to save Buzzy from having to be poked frequently. Ironically, it was only a few days after the PICC line was placed that she no longer needed the medications she received in those first couple of weeks. Thus, the PICC line was removed, and we only saved Buzzy from a couple of days of IV treatments.
In hindsight, I wish we had not consented to the PICC line so that Buzzy did not have to be exposed to the radiation of the X-ray. Yet, as I have heard it said, "Hindsight is 20/20." We could not have known that the PICC line would be removed only a few days after it was put in, and if we had it to do all over again, we would probably do no differently. Having one procedure done certainly sounds better than putting in a new IV each time it is needed, and with babies whose veins are minuscule, IVs have to be changed much more frequently than in an adult. Buzzy would have had to be stuck several times over those few days.
Parenting often involves choosing the lesser of two evils, and for us, the PICC line and accompanying X-ray seemed a good choice. It is not a choice every parent has to make, but I realize that in comparison to all that we will encounter as Buzzy's parents, having an X-ray will not be the most difficult.
Sunday, November 27, 2011
Wearing Clothes
In preparation for the Christmas holidays and the new clothes each of my children will undoubtedly receive, we recently sorted through the piles of clothes that no longer fit. Buried deep in the pile were Buzzy's preemie clothes. I was shocked to see how small they are and even more so when my older daughter began dressing her baby dolls in the clothes her sister had to grow into.
In a previous post, I mentioned that wearing clothes was one of the milestones we looked forward to while Buzzy was in the NICU. We could not dress her in baby clothes until she was over a month old. Instead, she wore only a diaper during the time that she resided in her Isolette. When it was time to move to a bassinet, we started dressing her in the clothes we had begun collecting in anticipation of the day she could. When that day finally arrived, she had almost outgrown them, and by the time we took her home, Buzzy had grown into newborn clothes. Now her preemie clothes have been handed down to a bunch of dolls.
I imagine that one day Buzzy will be dressing her dolls in the clothes she once wore. When that day comes, I will show her the pictures of her wearing them, and when she asks me why I am crying, I probably won't be able to do anything but hug my big girl.
In a previous post, I mentioned that wearing clothes was one of the milestones we looked forward to while Buzzy was in the NICU. We could not dress her in baby clothes until she was over a month old. Instead, she wore only a diaper during the time that she resided in her Isolette. When it was time to move to a bassinet, we started dressing her in the clothes we had begun collecting in anticipation of the day she could. When that day finally arrived, she had almost outgrown them, and by the time we took her home, Buzzy had grown into newborn clothes. Now her preemie clothes have been handed down to a bunch of dolls.
I imagine that one day Buzzy will be dressing her dolls in the clothes she once wore. When that day comes, I will show her the pictures of her wearing them, and when she asks me why I am crying, I probably won't be able to do anything but hug my big girl.
Saturday, November 26, 2011
Vaccines
Today, we returned from our three-day trek to spend Thanksgiving with my family. It was great fun seeing Buzzy and her sister play with the aunts, uncles, and cousin. It was even better knowing that we didn't have to worry about Buzzy getting sick. She is past the point that we have to worry about one of the top fears concerning a premature baby: RSV.
Though it may not be commonly known, RSV is a common occurrence among babies, both full-term and premature. For most full-term babies, RSV will likely only show up as a simple cold. If a preemie gets RSV, however, he or she will likely end up back in the hospital fighting for his or her life.
Because of her low birth weight, Buzzy qualified for the RSV shot. This is an expensive shot that is not available to all babies. It is not included on the list of vaccines a baby needs before his or her first birthday. Yet, it is probably the most important vaccine Buzzy got. Last fall and winter, she received five doses, and the only illness we had to battle was a recurring ear infection.
This year, we do not qualify, and we do not have to worry so much about Buzzy catching something life-threatening. I am glad for that. It was not much fun watching her get any of her shots, but the RSV one was particularly painful to watch because the nurse actually came to our house to inflict this pain on our child. Yet, watching a healthy toddler running to catch up to her older sister and cousin makes it all worth it. I hope everyone had as good a Thanksgiving as I did.
Though it may not be commonly known, RSV is a common occurrence among babies, both full-term and premature. For most full-term babies, RSV will likely only show up as a simple cold. If a preemie gets RSV, however, he or she will likely end up back in the hospital fighting for his or her life.
Because of her low birth weight, Buzzy qualified for the RSV shot. This is an expensive shot that is not available to all babies. It is not included on the list of vaccines a baby needs before his or her first birthday. Yet, it is probably the most important vaccine Buzzy got. Last fall and winter, she received five doses, and the only illness we had to battle was a recurring ear infection.
This year, we do not qualify, and we do not have to worry so much about Buzzy catching something life-threatening. I am glad for that. It was not much fun watching her get any of her shots, but the RSV one was particularly painful to watch because the nurse actually came to our house to inflict this pain on our child. Yet, watching a healthy toddler running to catch up to her older sister and cousin makes it all worth it. I hope everyone had as good a Thanksgiving as I did.
Tuesday, November 22, 2011
Ultrasound
For some, the arrival of a premature baby happens suddenly and without warning. For others, there is time to prepare for the inevitable. Although we did not know the exact date Buzzy would be born, we knew that she would come before 34 weeks, which is the longest the doctors would let me continue with the pregnancy.
During the four weeks I stayed in the hospital, the doctors and nurses watched both me and Buzzy closely. Frequent ultrasounds helped them to determine what kind of environment Buzzy was in and how she was faring in it. Instead of looking to make sure all the parts were in the right place and to determine the sex of the baby, the ultrasound looked to see how much fluid I had and to estimate Buzzy's weight.
Before my water broke, there had been some other complications with my pregnancy. Each time something seemed wrong, we had an ultrasound, and each time, we were fearful of the outcome. It was on one of these occasions that Buzzy seemed to give us a sign that all was indeed well.
During the four weeks I stayed in the hospital, the doctors and nurses watched both me and Buzzy closely. Frequent ultrasounds helped them to determine what kind of environment Buzzy was in and how she was faring in it. Instead of looking to make sure all the parts were in the right place and to determine the sex of the baby, the ultrasound looked to see how much fluid I had and to estimate Buzzy's weight.
Before my water broke, there had been some other complications with my pregnancy. Each time something seemed wrong, we had an ultrasound, and each time, we were fearful of the outcome. It was on one of these occasions that Buzzy seemed to give us a sign that all was indeed well.
As I will be gone for the next three days, I leave you with this. Happy Thanksgiving!
Monday, November 21, 2011
Thanksgiving
I know the official holiday is not for a few days, but I thought I would take this opportunity to list the things that I am thankful for as far as Buzzy is concerned. First, I am thankful that she is alive. The day my water broke, we both thought that we would lose our baby. However, we were able to get a few more weeks of development out of the pregnancy, which increased her chances of survival. It also decreased the chances of major complications. This is the second item on my list. I am extremely thankful that Buzzy shows no signs of problems.
Also on my list of things to be thankful for is the support system we have had over the last two years. From the OB who came to the ER on a Saturday morning to personally tell me that I would be transferred to a facility that could care for me and my baby to the friends and associates of my friends and family who prayed for our little family even though they do not know us personally, I am thankful for the people who have done what they could to ease our burden.
Last, but certainly not least, I am thankful for growth. Buzzy has come a long way from 2 lbs 9 oz, and I have come a long way both as a person and a mother in that time. Without thinking about it first, I have done what I had to do, and I am a stronger person for it. I also see the strength both of my girls possess, and I admire them for it. What more could a mother want?
Also on my list of things to be thankful for is the support system we have had over the last two years. From the OB who came to the ER on a Saturday morning to personally tell me that I would be transferred to a facility that could care for me and my baby to the friends and associates of my friends and family who prayed for our little family even though they do not know us personally, I am thankful for the people who have done what they could to ease our burden.
Last, but certainly not least, I am thankful for growth. Buzzy has come a long way from 2 lbs 9 oz, and I have come a long way both as a person and a mother in that time. Without thinking about it first, I have done what I had to do, and I am a stronger person for it. I also see the strength both of my girls possess, and I admire them for it. What more could a mother want?
Sunday, November 20, 2011
Sanitizer
Last year, during flu and RSV season, the nurse who came to our house to give Buzzy her RSV shots gave us a small tag we could attach to the car seat. It read, "Please wash your hands before you touch mine." This is more than just a friendly reminder, though. It is the mantra of the household that has a preemie.
Conventional wisdom says that a baby should be exposed to other people and their germs in order to build their immunity. This is great advice for children who are born with an immune system ready to work. Following such advice with a preemie, however, could prove fatal. Preemies are not ready to fight off infection, and an illness that would manifest itself in a full-term baby as the sniffles would almost certainly put a preemie back in the hospital. Thus, the number one rule around a premature baby is to sanitize.
When visiting Buzzy at the hospital, we had to stop at the sanitizing station to remove all jewelry, push up our sleeves, and scrub up to our elbows. Only after doing so could we go back to our daughter's room where we also used the dispenser of hand sanitizer on the wall before touching her. When Buzzy's sister was allowed to visit, she, too, learned to use the "tanisizer."
Parenting in a sterile environment presents its challenges, especially when there is a school-age sibling. It was impossible to control Buzzy's exposure because I could not control what germs came home with her sister. Therefore, any cough or sneeze was accompanied by the admonition to cover, then sanitize. If she later develops a fear of germs, we will not have any problem identifying the cause of her neurosis.
Outsiders may indeed think that the parent of a preemie is neurotic. Obsessive hand washing can be a sign of such a problem, and the instruction to others to do the same may not be well-received. However, the person who does not receive the instruction to sanitize will likely not be received into the household again. It's not a neurosis. It's a necessity.
Conventional wisdom says that a baby should be exposed to other people and their germs in order to build their immunity. This is great advice for children who are born with an immune system ready to work. Following such advice with a preemie, however, could prove fatal. Preemies are not ready to fight off infection, and an illness that would manifest itself in a full-term baby as the sniffles would almost certainly put a preemie back in the hospital. Thus, the number one rule around a premature baby is to sanitize.
When visiting Buzzy at the hospital, we had to stop at the sanitizing station to remove all jewelry, push up our sleeves, and scrub up to our elbows. Only after doing so could we go back to our daughter's room where we also used the dispenser of hand sanitizer on the wall before touching her. When Buzzy's sister was allowed to visit, she, too, learned to use the "tanisizer."
Parenting in a sterile environment presents its challenges, especially when there is a school-age sibling. It was impossible to control Buzzy's exposure because I could not control what germs came home with her sister. Therefore, any cough or sneeze was accompanied by the admonition to cover, then sanitize. If she later develops a fear of germs, we will not have any problem identifying the cause of her neurosis.
Outsiders may indeed think that the parent of a preemie is neurotic. Obsessive hand washing can be a sign of such a problem, and the instruction to others to do the same may not be well-received. However, the person who does not receive the instruction to sanitize will likely not be received into the household again. It's not a neurosis. It's a necessity.
Saturday, November 19, 2011
ROP (Retinopathy of Prematurity)
ROP is yet another acronym the parent of a preemie will learn and hope does not become part of the baby's diagnosis. In serious cases, ROP can lead to blindness. In fact, I recently learned ROP is what caused Stevie Wonder's blindness.
The March of Dimes explains ROP as follows:
ROP is an abnormal growth of blood vessels in the eye. It occurs only in babies born before 32 weeks of pregnancy. ROP can lead to bleeding and scarring that can damage the eye's retina (the lining at the rear of the eye that relays messages to the brain). This can result in vision loss. An ophthalmologist (eye doctor) will examine the baby's eyes for signs of ROP.
Most mild cases heal without treatment, with little or no vision loss. In more severe cases, the ophthalmologist may perform laser therapy or do a procedure called cryotherapy (freezing) to eliminate abnormal blood vessels and scars. Both treatments help protect the retina.
(Source: "Common conditions treated in the NICU." March of Dimes website.)
Born at 28 weeks, Buzzy was checked for signs of ROP both in the hospital and after leaving. Our departure from the NICU was actually delayed because we had to wait for the opthamologist. After we went home, we had to return to the clinic for yet another check, which required my infant to have her eyes dilated and then to have a horribly tortuous device placed over her eye so that the doctor could get a proper look.
After having Buzzy, I quickly learned that the care of a premature baby involves several different doctors. An opthamologist is only one of the doctors we have seen in the last 22 months. At one point, I jokingly told people that my baby had more doctors than an 80 year old. Certainly, prematurity means careful monitoring and a detailed medical history before the baby reaches his or her first birthday. Fortunately, in Buzzy's medical history there has never been a diagnosis of ROP.
The March of Dimes explains ROP as follows:
ROP is an abnormal growth of blood vessels in the eye. It occurs only in babies born before 32 weeks of pregnancy. ROP can lead to bleeding and scarring that can damage the eye's retina (the lining at the rear of the eye that relays messages to the brain). This can result in vision loss. An ophthalmologist (eye doctor) will examine the baby's eyes for signs of ROP.
Most mild cases heal without treatment, with little or no vision loss. In more severe cases, the ophthalmologist may perform laser therapy or do a procedure called cryotherapy (freezing) to eliminate abnormal blood vessels and scars. Both treatments help protect the retina.
(Source: "Common conditions treated in the NICU." March of Dimes website.)
Born at 28 weeks, Buzzy was checked for signs of ROP both in the hospital and after leaving. Our departure from the NICU was actually delayed because we had to wait for the opthamologist. After we went home, we had to return to the clinic for yet another check, which required my infant to have her eyes dilated and then to have a horribly tortuous device placed over her eye so that the doctor could get a proper look.
After having Buzzy, I quickly learned that the care of a premature baby involves several different doctors. An opthamologist is only one of the doctors we have seen in the last 22 months. At one point, I jokingly told people that my baby had more doctors than an 80 year old. Certainly, prematurity means careful monitoring and a detailed medical history before the baby reaches his or her first birthday. Fortunately, in Buzzy's medical history there has never been a diagnosis of ROP.
Friday, November 18, 2011
Questions
From the moment a pregnancy test yields a positive result, expectant parents begin asking questions. Will he have his daddy's eyes? Will she have hair? Where are we going to put the crib? How will we pay for college? When prematurity enters the equation, the questions are a bit different. Will my baby be able to see and hear properly? Will she suffer permanent brain damage? When will he get to come home? What if our insurance doesn't cover the hospital bill?
When my oldest was born, my first question was whether or not she had hair. "Does she ever" was the response I got. When Buzzy was born, I asked if she was breathing. Her kitten-like cries gave the answer I needed. The answers to other questions (some of which we did not yet know how to ask) would have to wait.
Having a preemie means not only asking questions but also answering those of concerned friends and family, which is no easy task. The question as to when a baby can come home involves a detailed explanation of the requirements he or she has to to meet. This explanation likely raises even more questions.
For each of the questions I never thought I would have to ask there was someone to give me an honest but gentle answer. For that I am grateful. I am also appreciative of the dozens of friends and family members who patiently listened as an exhausted mother tried to answer their questions to the best of her ability.
With Thanksgiving less than a week away, I realize that I have much to be thankful for. Though we still have plenty of questions, many of our original ones have been answered beyond our expectations. So far, Buzzy appears to have suffered no permananent damage, and except for her small size, there is no evidence that she missed an entire trimester. That, in itself, answers an even bigger question, one that the skeptic in me has always had trouble answering. Do miracles really exist? It certainly is hard to deny the existence of such when one looks me in the face and calls me "Mama."
When my oldest was born, my first question was whether or not she had hair. "Does she ever" was the response I got. When Buzzy was born, I asked if she was breathing. Her kitten-like cries gave the answer I needed. The answers to other questions (some of which we did not yet know how to ask) would have to wait.
Having a preemie means not only asking questions but also answering those of concerned friends and family, which is no easy task. The question as to when a baby can come home involves a detailed explanation of the requirements he or she has to to meet. This explanation likely raises even more questions.
For each of the questions I never thought I would have to ask there was someone to give me an honest but gentle answer. For that I am grateful. I am also appreciative of the dozens of friends and family members who patiently listened as an exhausted mother tried to answer their questions to the best of her ability.
With Thanksgiving less than a week away, I realize that I have much to be thankful for. Though we still have plenty of questions, many of our original ones have been answered beyond our expectations. So far, Buzzy appears to have suffered no permananent damage, and except for her small size, there is no evidence that she missed an entire trimester. That, in itself, answers an even bigger question, one that the skeptic in me has always had trouble answering. Do miracles really exist? It certainly is hard to deny the existence of such when one looks me in the face and calls me "Mama."
Thursday, November 17, 2011
Purple
Today marks two important occasions in my household. First, Buzzy's father celebrates his birthday. (Happy birthday, old man!) Second and more globally important, today is the first ever World Prematurity Day, the purpose of which is to raise awareness for the millions of babies worldwide that are born prematurely each year. The March of Dimes estimates that there are 13 million such premature births. That is 13 million babies whose lives are threatened from the instant they first draw breath. It is 13 million mothers who may blame themselves for an event they likely had no control over. It is also 13 million families whose lives will forever be changed in ways they may not immediately understand.
In honor of the occasion, I am wearing purple, the color associated with the cause and also my favorite. Buzzy is also dressed in purple, and as we go about town, many may think we are simply a cute mother and daughter who are dressed alike. (I can live with that. We are a cute pair.) I, on the other hand, will be proud to be dressed like my beautiful daughter because at her young age, she represents hope and survival. She and millions like her are fighters. Born into a world they are not yet equipped to handle, they struggle against the odds and inspire us all before they are even aware of themselves and their surroundings.
There is a great poem by Jenny Joseph that begins with the line, "When I am an old woman I shall wear purple." In this poem, she speaks of the things she will do when she no longer has to care about what others think of her. For her, wearing purple is a celebration of her life. Today, I do not have to wait until I am old to celebrate life. Today I shall proudly wear purple.
In honor of the occasion, I am wearing purple, the color associated with the cause and also my favorite. Buzzy is also dressed in purple, and as we go about town, many may think we are simply a cute mother and daughter who are dressed alike. (I can live with that. We are a cute pair.) I, on the other hand, will be proud to be dressed like my beautiful daughter because at her young age, she represents hope and survival. She and millions like her are fighters. Born into a world they are not yet equipped to handle, they struggle against the odds and inspire us all before they are even aware of themselves and their surroundings.
There is a great poem by Jenny Joseph that begins with the line, "When I am an old woman I shall wear purple." In this poem, she speaks of the things she will do when she no longer has to care about what others think of her. For her, wearing purple is a celebration of her life. Today, I do not have to wait until I am old to celebrate life. Today I shall proudly wear purple.
Wednesday, November 16, 2011
Oxygen
Going home on oxygen is a reality for many families with preemies. In the weeks and months following Buzzy's release from the hospital, we found ourselves at the hospital's clinic for various follow-up appointments, and each time I would see at least one baby on both an apnea monitor and oxygen. This makes for a lot of equipment for a parent to cart around. Grateful we only had the apnea monitor to worry about, I would think back to the sometimes uphill battle we had in getting Buzzy weaned from her oxygen.
Immediately after Buzzy was born, a member of her team placed a tiny oxygen mask over her face. Her first picture captured this moment.
While in the NICU, Buzzy remained on various percentages of oxygen saturation. Each day we visited, we checked her machine to see what percentage she was on. On a good day, her percentage would be a little lower than the previous day, or it would at least remain the same. Disappointment and worry would set in when the number was higher because we had been told that too much oxygen could cause permanent damage to her eyes.
As she grew stronger, her breathing became more steady and the numbers on her monitor more stable. There were times that we would find her without her nasal cannula. She would take it out herself, and no one would know. Yet, when we tried to remove it, she would protest with an apnea or a desat. In the weeks prior to Buzzy's release from the hospital, one of our biggest questions was whether or not she would go home on oxygen, but just a few days before her release, she finally came off. It was the first time we could walk into her room and not hear the tell-tale hiss of the machine, and it was the first time we saw our baby without tubes.
Immediately after Buzzy was born, a member of her team placed a tiny oxygen mask over her face. Her first picture captured this moment.
While in the NICU, Buzzy remained on various percentages of oxygen saturation. Each day we visited, we checked her machine to see what percentage she was on. On a good day, her percentage would be a little lower than the previous day, or it would at least remain the same. Disappointment and worry would set in when the number was higher because we had been told that too much oxygen could cause permanent damage to her eyes.
As she grew stronger, her breathing became more steady and the numbers on her monitor more stable. There were times that we would find her without her nasal cannula. She would take it out herself, and no one would know. Yet, when we tried to remove it, she would protest with an apnea or a desat. In the weeks prior to Buzzy's release from the hospital, one of our biggest questions was whether or not she would go home on oxygen, but just a few days before her release, she finally came off. It was the first time we could walk into her room and not hear the tell-tale hiss of the machine, and it was the first time we saw our baby without tubes.
Two days after this picture was taken, Buzzy went home.
Tuesday, November 15, 2011
NeoSure
If there is a motto for having a preemie, it would have to be "handle with care." As evidenced by their small size, premature babies are fragile in many ways. With each ounce they gain, they grow stronger. Putting those ounces on, however, is often difficult. Buzzy is a prime example of that. From her very first appointment with the pediatrician, we began discussing ways to help her gain weight. Thus, we were introduced to a product called NeoSure.
NeoSure is an infant formula designed especially for preemies. It contains extra calories and nutrients to help give these babies a boost in their development. Although Buzzy took the breastmilk I pumped, we were instructed to add a scoop of NeoSure in with each bottle. Then, when I stopped pumping, we gave her NeoSure exclusively.
There are a few disadvantages to having a baby on NeoSure. First is the cost. It is a few dollars more expensive than non-specialty formulas. It also only comes in one size, which means there is no bulk buy option. Another challenge is the availability of the product. There are often only a few cans on the shelf, and sometimes, the store is out of it altogether. I suspect the reason for this is that, like us, many parents of preemies buy all that is available. I have heard from another mom that she once had to go to four stores before she found one that had any cans of Neosure left.
After Buzzy's first birthday, our pediatrician recommended that we switch from NeoSure to PediaSure. These are also expensive, especially when the baby takes at least two a day. However, the expense is something that we are willing to live with so long as it gets Buzzy to where she needs to be. She is, after all, precious cargo.
NeoSure is an infant formula designed especially for preemies. It contains extra calories and nutrients to help give these babies a boost in their development. Although Buzzy took the breastmilk I pumped, we were instructed to add a scoop of NeoSure in with each bottle. Then, when I stopped pumping, we gave her NeoSure exclusively.
There are a few disadvantages to having a baby on NeoSure. First is the cost. It is a few dollars more expensive than non-specialty formulas. It also only comes in one size, which means there is no bulk buy option. Another challenge is the availability of the product. There are often only a few cans on the shelf, and sometimes, the store is out of it altogether. I suspect the reason for this is that, like us, many parents of preemies buy all that is available. I have heard from another mom that she once had to go to four stores before she found one that had any cans of Neosure left.
After Buzzy's first birthday, our pediatrician recommended that we switch from NeoSure to PediaSure. These are also expensive, especially when the baby takes at least two a day. However, the expense is something that we are willing to live with so long as it gets Buzzy to where she needs to be. She is, after all, precious cargo.
Monday, November 14, 2011
Milestones
Ask the parent of a premature baby how old he or she is, and you will get a complicated answer. Buzzy, for example, is 22 months old, but she is only supposed to be 19 months. Thus, when people comment that she is small for her age, I tell them that, in fact, she is small for her actual age but not necessarily for her adjusted age. Some may wonder why the adjusted age is even important. The answer to this question has to do with milestones.
A preemie will not likely sit up, crawl, walk, or talk at the same time as his or her full-term peers. This is because they spend the first part of their lives making up for time lost in utero. Buzzy came home weighing what a newborn typically does, but she was 2 1/2 months old at the time. She had spent her first 10 weeks developing as she would have if she had not come so early. This meant that we had to think of her as a newborn instead of the 10 week old who probably would have flashed her first smile. As with this and other milestones, we had to wait longer.
While the parents of Buzzy's peers watched for that first smile, we celebrated events not typically thought of as milestones. Wearing clothes, moving to a bassinet, being held like a newborn, taking a bottle, and breathing room air are the moments we proudly captured on film. Additionally, as the parents of a preemie, we not only celebrated different milestones, but we have also celebrated the typical milestones differently. After her first birthday, we anxiously watched and waited for the first step and first word because these important milestones would give us a clue as to whether her prematurity would have a lasting effect on her development. By 18 months (15 months adjusted), she had accomplished both feats. Today, Buzzy runs everywhere she goes, chattering as she does, and it will not be long before the age question will only require a simple answer. That will be a milestone indeed.
A preemie will not likely sit up, crawl, walk, or talk at the same time as his or her full-term peers. This is because they spend the first part of their lives making up for time lost in utero. Buzzy came home weighing what a newborn typically does, but she was 2 1/2 months old at the time. She had spent her first 10 weeks developing as she would have if she had not come so early. This meant that we had to think of her as a newborn instead of the 10 week old who probably would have flashed her first smile. As with this and other milestones, we had to wait longer.
While the parents of Buzzy's peers watched for that first smile, we celebrated events not typically thought of as milestones. Wearing clothes, moving to a bassinet, being held like a newborn, taking a bottle, and breathing room air are the moments we proudly captured on film. Additionally, as the parents of a preemie, we not only celebrated different milestones, but we have also celebrated the typical milestones differently. After her first birthday, we anxiously watched and waited for the first step and first word because these important milestones would give us a clue as to whether her prematurity would have a lasting effect on her development. By 18 months (15 months adjusted), she had accomplished both feats. Today, Buzzy runs everywhere she goes, chattering as she does, and it will not be long before the age question will only require a simple answer. That will be a milestone indeed.
Sunday, November 13, 2011
Leaving
For those who have spent any length of time in the hospital, it will sound like an understatement to say that it is no fun. I certainly do not fondly remember the month I spent in a bed not my own. Subject to frequent monitoring and not allowed to go about my normal daily routine, I felt like the unwilling subject of a science experiment. On the day of my release, I could not leave my room fast enough. Yet, as we drove away from the hospital to spend our first night back home, we were leaving the newest member of our family behind. I suspect many NICU parents will describe their experience with leaving in the same bittersweet way.
What parents of healthy full-term babies may not understand is that leaving a baby at the hospital does not mean leaving parenting responsibilities behind. While new mothers are waking up two or three times a night to nurse their newborns, the mother of a preemie is getting up as frequently to pump milk to take to the hospital the next day. Similarly, while new parents look in on their babies, sometimes obsessively so, to make sure all is well, parents of preemies frequently call the NICU to do the same. For the mother or father of a newborn at home, the baby's cries demand a response and may even be cause for alarm. For the parent of a preemie, a call from the hospital does the same, only more so.
New parents must also strive to balance it all: work, home, and everything in between. This process becomes even more complicated if there is an older sibling involved because suddenly mom and dad are the parents of two children, each with equally demanding needs. When a baby remains in the hospital, such balance is much harder to achieve. During Buzzy's NICU stay, her father would get up and go to work while I stayed at home with my older child, whom I would drop off at preschool after lunch. Then, I would go up to the hospital to see Buzzy until it was time to pick up her sister from school. Upon dad's arrival home from work, he would take a quick shower and head to the hospital, where he would stay for several hours. When he would return, the two of us at home would already be in bed. The next day, we would do it all over again.
I have heard from other parents of preemies that people have told them they were lucky to have someone else caring for their baby or that they were not really parents until the baby came home. Of course, I find such remarks ignorant and hurtful, but I cannot expect those who have not been there to understand. This does not mean, however, that I can excuse such careless comments. Leaving a baby behind is one of the hardest things a parent does, and the people who do not know what this is like are the lucky ones. Further, to those who may think having a baby away from home means the burden of parenting is somehow easier, I, and any parent who has been through a similar experience, beg to differ.
What parents of healthy full-term babies may not understand is that leaving a baby at the hospital does not mean leaving parenting responsibilities behind. While new mothers are waking up two or three times a night to nurse their newborns, the mother of a preemie is getting up as frequently to pump milk to take to the hospital the next day. Similarly, while new parents look in on their babies, sometimes obsessively so, to make sure all is well, parents of preemies frequently call the NICU to do the same. For the mother or father of a newborn at home, the baby's cries demand a response and may even be cause for alarm. For the parent of a preemie, a call from the hospital does the same, only more so.
New parents must also strive to balance it all: work, home, and everything in between. This process becomes even more complicated if there is an older sibling involved because suddenly mom and dad are the parents of two children, each with equally demanding needs. When a baby remains in the hospital, such balance is much harder to achieve. During Buzzy's NICU stay, her father would get up and go to work while I stayed at home with my older child, whom I would drop off at preschool after lunch. Then, I would go up to the hospital to see Buzzy until it was time to pick up her sister from school. Upon dad's arrival home from work, he would take a quick shower and head to the hospital, where he would stay for several hours. When he would return, the two of us at home would already be in bed. The next day, we would do it all over again.
I have heard from other parents of preemies that people have told them they were lucky to have someone else caring for their baby or that they were not really parents until the baby came home. Of course, I find such remarks ignorant and hurtful, but I cannot expect those who have not been there to understand. This does not mean, however, that I can excuse such careless comments. Leaving a baby behind is one of the hardest things a parent does, and the people who do not know what this is like are the lucky ones. Further, to those who may think having a baby away from home means the burden of parenting is somehow easier, I, and any parent who has been through a similar experience, beg to differ.
Saturday, November 12, 2011
Kangaroo Care
When a preemie is born, the experience of the birth is much different than that of a full-term baby. For us, it meant two teams of people in the delivery room, one for me and one for Buzzy. In total, there were about 30 people in the room. It also meant that I was not handed my baby directly after birth. Instead of being placed on my chest, she was put in a pre-warmed bed and immediately given an oxygen mask. The team did not waste any time in getting her up to the NICU. They paused only briefly by my bedside so that I could get a quick glimpse of my child. I spent the next several hours in an operating room, where my doctors had to remove the placenta that had become abrupted and fragmented, and in recovery, where I had to receive a blood transfusion.
When I was finally allowed to be wheeled up to the NICU, I couldn't hold my child. There she was, more tubes and wires than actual human. She spent the first few days of her life not knowing what it felt like to be held by her mother and father. Then, one day a nurse asked us if anyone had told us about kangaroo care. We had not, but we soon learned that it meant we could finally hold our child.
Essentially, kangaroo care is holding the baby against the mom or dad's bare chest. The baby is covered with a blanket so as to help keep him or her warm. To make sure that Buzzy did not get too cold outside her Isolette, we took her temperature every 15 minutes. (Kangaroo sessions lasted at least 45 minutes).
Not all babies can do kangaroo care, so we were fortunate that Buzzy could. Still, there were days that we opted not to disturb her. If she had had several apneas, bradycardias, and/or desats within the hours prior to our visit, we left her alone. We did not want to stress her fragile system. We were also careful to keep an eye on the monitor as we did kangaroo care. If she started showing signs of distress, we returned her to her bed.
As long as Buzzy was in her Isolette, we could only hold her kangaroo style. When she graduated to a bassinet, we could hold her more like a newborn, and for Buzzy, we were not able to do that until she was about six weeks old. By that time, the parent of a full-term baby has most likely settled into a routine, and we were still four weeks away from taking ours home.
I may never know the joy of holding my newborn baby just minutes after birth. (With my oldest, I was not able to do so either because I had an emergency C-section. I spent less time in recovery, but it was still hours before I could hold her.) However, for me, the amount of joy one feels is magnified by the suffering and strife from which it is born, and the day I first held Buzzy was the closest I have ever come to pure joy.
When I was finally allowed to be wheeled up to the NICU, I couldn't hold my child. There she was, more tubes and wires than actual human. She spent the first few days of her life not knowing what it felt like to be held by her mother and father. Then, one day a nurse asked us if anyone had told us about kangaroo care. We had not, but we soon learned that it meant we could finally hold our child.
Essentially, kangaroo care is holding the baby against the mom or dad's bare chest. The baby is covered with a blanket so as to help keep him or her warm. To make sure that Buzzy did not get too cold outside her Isolette, we took her temperature every 15 minutes. (Kangaroo sessions lasted at least 45 minutes).
Not all babies can do kangaroo care, so we were fortunate that Buzzy could. Still, there were days that we opted not to disturb her. If she had had several apneas, bradycardias, and/or desats within the hours prior to our visit, we left her alone. We did not want to stress her fragile system. We were also careful to keep an eye on the monitor as we did kangaroo care. If she started showing signs of distress, we returned her to her bed.
As long as Buzzy was in her Isolette, we could only hold her kangaroo style. When she graduated to a bassinet, we could hold her more like a newborn, and for Buzzy, we were not able to do that until she was about six weeks old. By that time, the parent of a full-term baby has most likely settled into a routine, and we were still four weeks away from taking ours home.
I may never know the joy of holding my newborn baby just minutes after birth. (With my oldest, I was not able to do so either because I had an emergency C-section. I spent less time in recovery, but it was still hours before I could hold her.) However, for me, the amount of joy one feels is magnified by the suffering and strife from which it is born, and the day I first held Buzzy was the closest I have ever come to pure joy.
Friday, November 11, 2011
Jaundice
Today's topic hardly needs an explanation. Most parents are familiar with jaundice as it is something both full-term babies and preemies experience. Caused by the inability to effectively break down bilirubin, jaundice can cause brain damage. Before I had a preemie, I knew what caused jaundice. However, it was not until after Buzzy's arrival that I learned of its potential effects.
Like many preemies, she had to go under the bili lights soon after she was born. Though I do not remember how long she stayed under the lights, I do recall the fear. Anytime brain damage is listed as one of the possible effects, there is reason to worry, and Buzzy's levels hovered near the point at which such damage occurs for a couple of days. When her levels did drop to a more normal number, we breathed easier.
In the midst of a serious situation, humor often helps, and for that, we could often count on the NICU nurses (who will forever be heroes in my eyes). After Buzzy went under the lights, one of the nurses told us that she was getting her first tan. Indeed, with the protective eye gear she wore, it certainly appeared that way.
Like many preemies, she had to go under the bili lights soon after she was born. Though I do not remember how long she stayed under the lights, I do recall the fear. Anytime brain damage is listed as one of the possible effects, there is reason to worry, and Buzzy's levels hovered near the point at which such damage occurs for a couple of days. When her levels did drop to a more normal number, we breathed easier.
In the midst of a serious situation, humor often helps, and for that, we could often count on the NICU nurses (who will forever be heroes in my eyes). After Buzzy went under the lights, one of the nurses told us that she was getting her first tan. Indeed, with the protective eye gear she wore, it certainly appeared that way.
Thursday, November 10, 2011
Isolette
More commonly known as an incubator, many preemies spend their first few weeks of life in an Isolette. In my life outside of motherhood, I am an English teacher, so I find the meanings and connotations of these words rather interesting when considered in context. (If your forte is not linguistics, bear with me. I will explain.) First, allow me to share some definitions:
incubator (noun): one that incubates; especially: an apparatus with a chamber used to provide controlled environmental conditions especially for the cultivation of microorganisms or the care and protection of premature or sick babies
Isolette (trademark): used for an incubator for premature infants that provides controlled temperature and humidity and an oxygen supply
(Sources: "Incubator." "Isolette." Merriam Webster website.)
The common denominator for both of these definitions is control. A premature baby is often not able to regulate body temperature, so the primary purpose of an incubator is to keep the baby warm. Sensors would sound an alarm if she got too cold or too hot, and the nurse would adjust the temperature accordingly. It sounds very scientific, and indeed, it is. We take for granted that our bodies perform this function for us. Similarly, until I had Buzzy, I took for granted the protected environment she had inside me. The incubator served as a substitute for the womb.
In addition to the control and protection an Isolette provides, this incubator also keeps the baby away from the outside world and those who inhabit it. Thus, the name of the device that served as Buzzy's home is appropriate. It kept her in isolation, which was especially important considering the time of year she was born: flu and RSV season. It was also the year of the swine flu outbreak. This meant that Buzzy had to be kept away from germs, and we had to keep her older sister away from her. The two did not meet each other until Buzzy was a month old, but being isolated from each other made their first meeting all the more unforgettable.
If pictures are worth a thousand words, then these indeed are priceless.
incubator (noun): one that incubates; especially: an apparatus with a chamber used to provide controlled environmental conditions especially for the cultivation of microorganisms or the care and protection of premature or sick babies
Isolette (trademark): used for an incubator for premature infants that provides controlled temperature and humidity and an oxygen supply
(Sources: "Incubator." "Isolette." Merriam Webster website.)
The common denominator for both of these definitions is control. A premature baby is often not able to regulate body temperature, so the primary purpose of an incubator is to keep the baby warm. Sensors would sound an alarm if she got too cold or too hot, and the nurse would adjust the temperature accordingly. It sounds very scientific, and indeed, it is. We take for granted that our bodies perform this function for us. Similarly, until I had Buzzy, I took for granted the protected environment she had inside me. The incubator served as a substitute for the womb.
In addition to the control and protection an Isolette provides, this incubator also keeps the baby away from the outside world and those who inhabit it. Thus, the name of the device that served as Buzzy's home is appropriate. It kept her in isolation, which was especially important considering the time of year she was born: flu and RSV season. It was also the year of the swine flu outbreak. This meant that Buzzy had to be kept away from germs, and we had to keep her older sister away from her. The two did not meet each other until Buzzy was a month old, but being isolated from each other made their first meeting all the more unforgettable.
If pictures are worth a thousand words, then these indeed are priceless.
Wednesday, November 9, 2011
Hands-On Care
Expectant parents look forward to the day they can hold their baby in their arms. Part of the joy of being a new parent is snuggling with a new little sweetheart. I have heard new moms and dads say they can't get enough of their little one. They just want to caress every inch of their skin, and rubbing noses with an infant as she stretches her tiny arms and gives an even tinier yawn makes for a precious picture to share with others and cherish for years to come. For the parent of a preemie, however, this is not the picture of parenthood.
Moms and dads of preemies don't get to hold their babies like the parents of full-term babies do. Much of what goes on with a baby in the NICU is hands-off, meaning that the majority of the time a baby is left alone. To the parent of a full-term baby, it might sound cruel to leave the baby untouched in his or her bed. Yet, as one of our nurses explained to us, preemies don't like to be touched. They are not supposed to be snuggled for another few weeks or even months. For this reason, parents in the NICU must care for their babies within a scheduled system known as hands-on care.
Every three hours, a nurse would come to check Buzzy's temperature, change her diaper, and hook her up to her next feeding. If her father or I were present, we were allowed and even encouraged to do the first two tasks. If medication or an IV change was needed, the nurse would do this during a scheduled hands-on, and after this round of activity, Buzzy was given time to rest. If we wanted to touch our baby in between hands-on times, we could certainly do so, but we were told not to stroke her skin as we might do with a newborn. Instead, we cupped our hands around her tiny frame. As hard as it was for a first-time father not to hold his baby's hand and run his finger down the length of her body, this is what Buzzy's proud papa quickly learned not to do.
As Buzzy got closer to her due date, we could treat her a little more like a newborn, but for the 10 weeks that she remained in the hospital, we primarily operated within this simulation of what parenting should be. In looking back, I believe that it affected all of us in different ways. While I became afraid to touch our fragile child, her father took advantage of every opportunity he could. At times, it even felt like he was stealing all of her attention. I don't blame him, though. Having waited until he was 40 to have a child, he really could not get enough of her. The NICU seems to have had an effect on Buzzy's socialization as well. After being released from the hospital, she would cry when someone other than her father or I would hold her. Now, she only wants her father, who continues to dote on her.
Being a hands-on parent is certainly more challenging when a child is born prematurely, and if there is an adjustment period needed in caring for a full-term baby, that same period is made much more difficult when the baby remains in a sterile environment for so long. We can now snuggle our child as much as we want, but in the beginning, we had to reconcile ourselves with the fact that our child did not need our loving touch.
Moms and dads of preemies don't get to hold their babies like the parents of full-term babies do. Much of what goes on with a baby in the NICU is hands-off, meaning that the majority of the time a baby is left alone. To the parent of a full-term baby, it might sound cruel to leave the baby untouched in his or her bed. Yet, as one of our nurses explained to us, preemies don't like to be touched. They are not supposed to be snuggled for another few weeks or even months. For this reason, parents in the NICU must care for their babies within a scheduled system known as hands-on care.
Every three hours, a nurse would come to check Buzzy's temperature, change her diaper, and hook her up to her next feeding. If her father or I were present, we were allowed and even encouraged to do the first two tasks. If medication or an IV change was needed, the nurse would do this during a scheduled hands-on, and after this round of activity, Buzzy was given time to rest. If we wanted to touch our baby in between hands-on times, we could certainly do so, but we were told not to stroke her skin as we might do with a newborn. Instead, we cupped our hands around her tiny frame. As hard as it was for a first-time father not to hold his baby's hand and run his finger down the length of her body, this is what Buzzy's proud papa quickly learned not to do.
As Buzzy got closer to her due date, we could treat her a little more like a newborn, but for the 10 weeks that she remained in the hospital, we primarily operated within this simulation of what parenting should be. In looking back, I believe that it affected all of us in different ways. While I became afraid to touch our fragile child, her father took advantage of every opportunity he could. At times, it even felt like he was stealing all of her attention. I don't blame him, though. Having waited until he was 40 to have a child, he really could not get enough of her. The NICU seems to have had an effect on Buzzy's socialization as well. After being released from the hospital, she would cry when someone other than her father or I would hold her. Now, she only wants her father, who continues to dote on her.
Being a hands-on parent is certainly more challenging when a child is born prematurely, and if there is an adjustment period needed in caring for a full-term baby, that same period is made much more difficult when the baby remains in a sterile environment for so long. We can now snuggle our child as much as we want, but in the beginning, we had to reconcile ourselves with the fact that our child did not need our loving touch.
Tuesday, November 8, 2011
Growth
Having a premature baby results in a major shift in one's thinking on a host of issues. One such issue is growth. I recently read a comment in an online group for parents of preemies that while the growth of full-term babies is measured in ounces, we measure it in grams. In thinking back to Buzzy's days in the NICU, I certainly see the truth in this statement. Each day, the nurse would report a weight gain that would seem minimal to other parents. Thirty grams in any other context does not seem to be much. However, to the parent of a baby who weighs under 3 pounds, this number is huge.
Parents of preemies also see their babies' progress differently. No matter how early our babies or how low their birth weight, we strive to get on the curve. While it may be disheartening to parents of full-term babies to hear that their children are in the low percentiles for height, weight, and/or head circumference, those percentiles are what we aim for because they put our children in the same group as their peers. So far, Buzzy has not yet made on the curve for her weight, but as her pediatrician tells us, she is on her own little growth curve.
In this first full week of Prematurity Awareness Month, I have had to opportunity not only to share my story but also to hear the stories of others via the Internet, which is a great place to connect with others who have had similar experiences. In the online group I have joined, I have seen many moms proudly posting pictures of where their babies started and where they are now. One mom even shared a picture of her 25 weeker, who is now a teenager. His strong stature does not betray the fact that he weighed less than 2 pounds at birth. Of course, Buzzy has a long way to go before reaching adolescence, and I have no desire to rush her through her childhood. However, as she grows, her pictures are already telling a story of hope and survival.
Parents of preemies also see their babies' progress differently. No matter how early our babies or how low their birth weight, we strive to get on the curve. While it may be disheartening to parents of full-term babies to hear that their children are in the low percentiles for height, weight, and/or head circumference, those percentiles are what we aim for because they put our children in the same group as their peers. So far, Buzzy has not yet made on the curve for her weight, but as her pediatrician tells us, she is on her own little growth curve.
In this first full week of Prematurity Awareness Month, I have had to opportunity not only to share my story but also to hear the stories of others via the Internet, which is a great place to connect with others who have had similar experiences. In the online group I have joined, I have seen many moms proudly posting pictures of where their babies started and where they are now. One mom even shared a picture of her 25 weeker, who is now a teenager. His strong stature does not betray the fact that he weighed less than 2 pounds at birth. Of course, Buzzy has a long way to go before reaching adolescence, and I have no desire to rush her through her childhood. However, as she grows, her pictures are already telling a story of hope and survival.
Monday, November 7, 2011
Feeding Tube
At 28 weeks, a baby has not yet developed the sucking reflex needed to nurse or take milk from a bottle, so a feeding tube is inserted. Their digestive tracts are also not able to handle the intake of a full-term baby. Too much can cause a perforation that would require surgery to correct. Buzzy's first feeding consisted of 3 mL slowly pumped by machine into the tube in her stomach.
Where most mothers nurse their newborns on demand, I had to go behind a curtain and pump. I would then label the container and leave it with the nurse on duty, who would either use it for the next scheduled feeding or store it on the refrigerator shelf designated for Buzzy. I continued to pump for 5 1/2 months.
Buzzy could not leave the hospital until she could feed on her own. With each bottle feeding, she was allowed to take what she could, and what she couldn't finish in thirty minutes would be given to her by tube. Then, she would get a break from the bottle for the next feeding. This part of our NICU journey brought me the most frustration because I was the least successful in getting Buzzy to take a bottle. Her nurses could do it, as could her father, but for some reason, she would not feed from a bottle with me. One attempt resulted in a significant desat during which she started turning blue. The nurse took over, and that was too much. I turned around and headed for the bathroom where I collapsed into tears. Looking back, I realize that the nurse had far more experience with preemies, but at the time, it just did not feel right that I could not feed my baby.
When we finally went home, feeding was not so much the issue as weight gain was, and it was for this reason that I did not put much effort into switching her from bottle to the breast. More so than the mother of a full-term baby, I needed to know exactly how much she was taking in, and as strange as it was to pump and feed my child by bottle, I don't really feel as though I missed out. I did what I had to do. This is what parenting a preemie is all about.
Where most mothers nurse their newborns on demand, I had to go behind a curtain and pump. I would then label the container and leave it with the nurse on duty, who would either use it for the next scheduled feeding or store it on the refrigerator shelf designated for Buzzy. I continued to pump for 5 1/2 months.
Buzzy could not leave the hospital until she could feed on her own. With each bottle feeding, she was allowed to take what she could, and what she couldn't finish in thirty minutes would be given to her by tube. Then, she would get a break from the bottle for the next feeding. This part of our NICU journey brought me the most frustration because I was the least successful in getting Buzzy to take a bottle. Her nurses could do it, as could her father, but for some reason, she would not feed from a bottle with me. One attempt resulted in a significant desat during which she started turning blue. The nurse took over, and that was too much. I turned around and headed for the bathroom where I collapsed into tears. Looking back, I realize that the nurse had far more experience with preemies, but at the time, it just did not feel right that I could not feed my baby.
When we finally went home, feeding was not so much the issue as weight gain was, and it was for this reason that I did not put much effort into switching her from bottle to the breast. More so than the mother of a full-term baby, I needed to know exactly how much she was taking in, and as strange as it was to pump and feed my child by bottle, I don't really feel as though I missed out. I did what I had to do. This is what parenting a preemie is all about.
Sunday, November 6, 2011
Ear Infections
Parents of preemies and term babies alike worry about this one. I don't know if ear infections are statistically higher in preemies than in term babies; our ENT assured us that they are not. However, my older daughter, who was born at 41 weeks, did not get her first ear infection until she was four years old, and Buzzy had four of them by the time she was a year old. They were not spread out over the course of time either. They occurred almost back to back. We would be pronounced clear of infection, and barely two weeks later, another one was in the works. This meant three different types of antibiotics. Eventually, it also meant tubes to drain the persistent fluid buildup.
The fluid in her ears was not only prone to infection, but it also caused her to fail a hearing test. We had been referred for this test by the developmental specialist who comes to our house once a month to check on Buzzy's progress. Her language was delayed, so we needed to rule out any problems with her ears. The specialist also noted that Buzzy's delay in walking could also be related to fluid in her ears. We made an appointment with the ENT and set a date for the surgery.
The procedure is simple enough, but there is quite a bit of anxiety that feeds into it, which is not helped by the fact that a parent is asked not to give the child anything to eat or drink before the surgery. We had been given one of the first time slots of the day, but we still found ourselves waiting with a hungry baby far past our scheduled time. With each minute we waited, our anxiety grew.
Finally, someone arrived to take Buzzy back for surgery. Amazingly, she did not cry when she was handed off to a total stranger. Somehow we did not fall apart either. We barely had time to. Fifteen minutes later, we were called back to the recovery area and allowed to give Buzzy the bottle we had brought with us. Then, after receiving our post-op instructions, we loaded up into the car and went home. We have not had a single ear infection since.
I am not sure if Buzzy's developmental delays were related to her prematurity, the fluid in her ears, or both, but since the tubes were placed, she has blossomed. She now runs just about everywhere she goes, and her speech is becoming more recognizable each day. The other day, she sat down, and as she did, she said, "Sit down." It just seemed to come out of her as if she's always known how to form the words and simultaneously perform the action. She continues to surprise us like that.
The fluid in her ears was not only prone to infection, but it also caused her to fail a hearing test. We had been referred for this test by the developmental specialist who comes to our house once a month to check on Buzzy's progress. Her language was delayed, so we needed to rule out any problems with her ears. The specialist also noted that Buzzy's delay in walking could also be related to fluid in her ears. We made an appointment with the ENT and set a date for the surgery.
The procedure is simple enough, but there is quite a bit of anxiety that feeds into it, which is not helped by the fact that a parent is asked not to give the child anything to eat or drink before the surgery. We had been given one of the first time slots of the day, but we still found ourselves waiting with a hungry baby far past our scheduled time. With each minute we waited, our anxiety grew.
Finally, someone arrived to take Buzzy back for surgery. Amazingly, she did not cry when she was handed off to a total stranger. Somehow we did not fall apart either. We barely had time to. Fifteen minutes later, we were called back to the recovery area and allowed to give Buzzy the bottle we had brought with us. Then, after receiving our post-op instructions, we loaded up into the car and went home. We have not had a single ear infection since.
I am not sure if Buzzy's developmental delays were related to her prematurity, the fluid in her ears, or both, but since the tubes were placed, she has blossomed. She now runs just about everywhere she goes, and her speech is becoming more recognizable each day. The other day, she sat down, and as she did, she said, "Sit down." It just seemed to come out of her as if she's always known how to form the words and simultaneously perform the action. She continues to surprise us like that.
Saturday, November 5, 2011
Desat
Today's abbreviation, desat, is short for desaturation. I remember it as the blue number on Buzzy's monitor. When we first became acquainted with the NICU, a nurse told us that it would be like a roller coaster. There would be ups and downs. The numbers on Buzzy's monitor certainly gave evidence of this; they were always moving. Most times, her numbers would decrease gradually. When this happened, an alarm would indicate that she was close to having a brady, apnea, or desat. Sometimes, however, the numbers would plummet suddenly, triggering a much louder and quicker alarm. Either alarm unnerved me, but as you can imagine, a sudden drop was much more nerve-racking. One night on the way home from the hospital, we heard a similar sound at Whataburger when the timer for the fries went off. The workers that night, of course, had no idea why I started crying in the middle of the restaurant.
Desats kept Buzzy on oxygen until just days before she went home. Numerous attempts to wean her off the oxygen were unsuccessful. We would decrease her oxygen level, and she would do well at that level for a while, but she would inevitably get tired and move in the wrong direction. Afraid that we would have to take her home on oxygen, one day we walked into her room to discover her completely tube free for the first time. She was maintaining her oxygen saturation without assistance, which for a preemie is a huge milestone. The picture we took that day is one I will always cherish.
As I reflect on where we have been, I find it highly appropriate that the month in which we pause to give thanks coincides with Prematurity Awareness Month. I know I have much to be thankful for where Buzzy is concerned. When she screams at the top of her lungs, I find myself grateful that she is able to put so much into those screams. To me, they mean that her lungs work.
Desats kept Buzzy on oxygen until just days before she went home. Numerous attempts to wean her off the oxygen were unsuccessful. We would decrease her oxygen level, and she would do well at that level for a while, but she would inevitably get tired and move in the wrong direction. Afraid that we would have to take her home on oxygen, one day we walked into her room to discover her completely tube free for the first time. She was maintaining her oxygen saturation without assistance, which for a preemie is a huge milestone. The picture we took that day is one I will always cherish.
As I reflect on where we have been, I find it highly appropriate that the month in which we pause to give thanks coincides with Prematurity Awareness Month. I know I have much to be thankful for where Buzzy is concerned. When she screams at the top of her lungs, I find myself grateful that she is able to put so much into those screams. To me, they mean that her lungs work.
Friday, November 4, 2011
CPAP
In the previous couple of posts, I have discussed some of the new vocabulary terms we learned from our experience with having a premature baby. Among these were several acronyms and abbreviations, the first being CPAP, which stands for continuous positive airway pressure. Because Buzzy was born so early, her lungs had not fully developed, and she needed a little help with her breathing. This help came in the form of CPAP, which "delivers pressurized air to the baby’s lungs through small tubes in the baby's nose or through a tube that has been inserted into his windpipe." (Source: "Your Premature Baby: What medical complications are common in premature babies?" March of Dimes website.)
Although we knew that our baby would be premature, we did not know how early or how severe her lack of development would be. One of our biggest concerns was whether or not she would be able to breathe on her own. When she uttered a faint cry at birth, we took it as a good sign. She was trying to breathe. To help keep her breathing, she was given surfactant, which helped to keep her lungs open, and hooked up to a funny-looking contraption called CPAP, which would ease her breathing.
One of Buzzy's first photos featured her on CPAP (note the aviator goggles):
As heartbreaking as it was to see Buzzy hooked up to such a contraption, we felt fortunate that she did not need a ventilator to breathe for her. She was making a valiant effort to do the work on her own and did not remain on CPAP long. She soon graduated to a nasal cannula through which she received oxygen, but again, she did all the work. When we finally went home, she had worked herself off the oxygen entirely.
Months after Buzzy left the hospital, we found ourselves in another hospital, waiting for information on an elderly relative who was in respiratory distress. Anytime a family member, young or old, is in the hospital, the experience can be overwhelming. Doctors spout off medical jargon that the family needs a translator to understand. In that instance, when CPAP was mentioned as a possible treatment, we served as the translators.
Although we knew that our baby would be premature, we did not know how early or how severe her lack of development would be. One of our biggest concerns was whether or not she would be able to breathe on her own. When she uttered a faint cry at birth, we took it as a good sign. She was trying to breathe. To help keep her breathing, she was given surfactant, which helped to keep her lungs open, and hooked up to a funny-looking contraption called CPAP, which would ease her breathing.
One of Buzzy's first photos featured her on CPAP (note the aviator goggles):
Months after Buzzy left the hospital, we found ourselves in another hospital, waiting for information on an elderly relative who was in respiratory distress. Anytime a family member, young or old, is in the hospital, the experience can be overwhelming. Doctors spout off medical jargon that the family needs a translator to understand. In that instance, when CPAP was mentioned as a possible treatment, we served as the translators.
Though I am no medical expert, I sometimes find myself drawing from the knowledge I gained from having a premature baby in such surprising ways. Nearly two years after her arrival, I still find myself learning new things. If experience is indeed the best teacher, going through something like this should come with a degree of some kind. Our family has earned it.
Thursday, November 3, 2011
Bradycardia
Having a premature baby gives one the opportunity to learn new medical terms. One of the first we learned was bradycardia. More commonly known as a brady, this term refers to a slow heart rate, and as mentioned in yesterday's post, bradycardias are one of the things preemies are monitored for.
As Buzzy's father describes a brady, "It's the thing that stops your heart. They always worried me more because it was something you couldn't see."
I have to agree with this assessment. When the monitor would indicate that Buzzy's oxygen levels had dropped, there was often a visible explanation for this. She became famous among her nurses for pulling out her nasal cannula. Even when she was having an apnea, we could visibly see that the stimulation we were giving her was working. Yet, with a brady, we could not see how her heart was responding.
So what was our response to a brady? As in many other cases, the rules change with a preemie. Where we would have taken precautions not to startle a full-term baby, with Buzzy, this is what we were told to do. The idea was to speed her heart back up, and what better way to do this than to scare the poor girl? Another common way to keep a preemie's heart beating at a normal rate is to give the baby a shot of caffeine. I mean this quite literally. Twice a day, a nurse would insert a syringe into Buzzy's IV to deliver the prescribed dose.
Buzzy certainly had her share of bradys, and the nurses would often respond to these occurences in the same jovial manner as they would apneas. "Stop misbehaving," one would say as she sanitized her hands and headed over to the baby's bed. Our daily inquiries into how Buzzy did overnight included similar utterances. "She was a good girl last night. She only had two bradys," one might say.
Going home taught us some new lessons about the body's development. As we came to find out, a baby's heartrate will slow down as he or she grows. This makes sense, of course, considering the difference between an adult's heartrate and that of a newborn. For Buzzy, this slowed heartrate came sooner than it should have, however, and this made for quite a few sleepless nights as her monitor would go off several times within a single hour. This went on for a couple of weeks before the pediatrician issued the order to have the monitor adjusted. With this order came the referral for a sleep study to investigate the cause of her slowed heartrate. After being hooked up to dozens of sensors and having her head bandaged like a mummy to secure them in place, Buzzy spent a restless night in the hospital. The results were inconclusive.
As with apneas, bradycardias are now a thing of the past for us, and looking back gives me the chance to see how far Buzzy has come in many ways. The tiny baby who used to give our hearts reason to skip a beat is becoming a spunky little girl who warms the hearts of everyone she meets.
As Buzzy's father describes a brady, "It's the thing that stops your heart. They always worried me more because it was something you couldn't see."
I have to agree with this assessment. When the monitor would indicate that Buzzy's oxygen levels had dropped, there was often a visible explanation for this. She became famous among her nurses for pulling out her nasal cannula. Even when she was having an apnea, we could visibly see that the stimulation we were giving her was working. Yet, with a brady, we could not see how her heart was responding.
So what was our response to a brady? As in many other cases, the rules change with a preemie. Where we would have taken precautions not to startle a full-term baby, with Buzzy, this is what we were told to do. The idea was to speed her heart back up, and what better way to do this than to scare the poor girl? Another common way to keep a preemie's heart beating at a normal rate is to give the baby a shot of caffeine. I mean this quite literally. Twice a day, a nurse would insert a syringe into Buzzy's IV to deliver the prescribed dose.
Buzzy certainly had her share of bradys, and the nurses would often respond to these occurences in the same jovial manner as they would apneas. "Stop misbehaving," one would say as she sanitized her hands and headed over to the baby's bed. Our daily inquiries into how Buzzy did overnight included similar utterances. "She was a good girl last night. She only had two bradys," one might say.
Going home taught us some new lessons about the body's development. As we came to find out, a baby's heartrate will slow down as he or she grows. This makes sense, of course, considering the difference between an adult's heartrate and that of a newborn. For Buzzy, this slowed heartrate came sooner than it should have, however, and this made for quite a few sleepless nights as her monitor would go off several times within a single hour. This went on for a couple of weeks before the pediatrician issued the order to have the monitor adjusted. With this order came the referral for a sleep study to investigate the cause of her slowed heartrate. After being hooked up to dozens of sensors and having her head bandaged like a mummy to secure them in place, Buzzy spent a restless night in the hospital. The results were inconclusive.
As with apneas, bradycardias are now a thing of the past for us, and looking back gives me the chance to see how far Buzzy has come in many ways. The tiny baby who used to give our hearts reason to skip a beat is becoming a spunky little girl who warms the hearts of everyone she meets.
Wednesday, November 2, 2011
Apnea
ap·ne·a
(Source: "Apnea." Dictionary.com.)
I had heard of sleep apnea before having a premature baby, but I had always associated it with adults, particularly those who are obese. In the weeks following Buzzy's birth, however, the word became a part of our vocabulary. It was one of the first questions we would ask upon arriving at the hospital each day: How many apneas did she have during the night? It was surreal how normal this question became. Also surreal was the common response to an apnea. The alarm would sound, and a nurse would come into the room to check the monitor. When it showed that the baby's breathing rate had dropped below what it was supposed to be, the nurse would jokingly tell the baby to stop holding his or her breath. As we became seasoned NICU parents, we often found ourselves taking cues from the nurses for whom apneas and alarms were simply part of the job. That's what 72 days in the NICU does for a person.
It seems to be a common experience for new parents to check on their sleeping babies to make sure they are still breathing. With all the attention SIDS gets, this should come as no surprise. However, as the mother of a preemie, I have to chuckle a bit at the sense of panic induced in the parent of a full-term baby with no health problems. Though their fears are not completely unfounded, these parents have much less to worry about. For the parent of a preemie, the question as to whether the baby is still breathing is much more complex. The following information from the March of Dimes on the subject of apnea in premature babies explains why:
Premature babies sometimes do not breathe regularly. A baby may take a long breath, then a short one, then pause for 5 to 10 seconds before starting to breathe normally. This is called periodic breathing. It usually is not harmful, and the baby will outgrow it.
Premature and sick babies also may stop breathing for 15 to 20 seconds or more. This interruption in breathing is called apnea. It may be accompanied by a slow heart rate called bradycardia. Babies in the NICU are constantly monitored for apnea and bradycardia (often called “A's and B's”).
Sensors on the baby's chest send information about his breathing and heart rate to a machine located near the incubator. If a baby stops breathing, an alarm will begin beeping. A nurse will stimulate the baby to start breathing by patting him or touching the soles of his feet. The neonatologist might consider giving the baby medicine or using equipment, such as C-PAP (continuous positive airway pressure; delivery of air to a baby's lungs through either small tubes in the baby's nose or through a tube inserted into the windpipe).
(Source: "Common conditions treated in the NICU." March of Dimes website.)
With Buzzy, we dealt with all of the above: short breaths, long breaths, pauses between breaths, bradycardia (which will be the subject of tomorrow's post), monitors (both in the hospital and at home), stimulation, medication, CPAP (which was secured in place by a device that resembled aviator goggles), and a tube in her nose to deliver oxygen. There were some frightening moments, especially after we went home and there was no nurse to constantly monitor these things. There were also comically frustrating moments when one of us would accidentally yank the cord out of the home monitor, causing it to go off in a rather shrill manner. It was a moment like this that earned me the right to pick up my older daughter from preschool in the lane reserved for the day care vans rather than get out of the car with baby and monitor and wait outside the classroom door with the other parents.
Today, the apnea monitor is a thing of the past. Buzzy has done as she should and outgrown her inconsistent breathing, and it has been over a year since a courier came to pick up the thing that went everywhere with us for six months. Sometimes, though, I find myself watching her as she sleeps and wondering if she's still breathing. I breathe a sigh of relief that she is.
noun
a temporary suspension of breathing, occurring in some newborns (infant apnea) and in some adults during sleep (sleep apnea)
(Source: "Apnea." Dictionary.com.)
I had heard of sleep apnea before having a premature baby, but I had always associated it with adults, particularly those who are obese. In the weeks following Buzzy's birth, however, the word became a part of our vocabulary. It was one of the first questions we would ask upon arriving at the hospital each day: How many apneas did she have during the night? It was surreal how normal this question became. Also surreal was the common response to an apnea. The alarm would sound, and a nurse would come into the room to check the monitor. When it showed that the baby's breathing rate had dropped below what it was supposed to be, the nurse would jokingly tell the baby to stop holding his or her breath. As we became seasoned NICU parents, we often found ourselves taking cues from the nurses for whom apneas and alarms were simply part of the job. That's what 72 days in the NICU does for a person.
It seems to be a common experience for new parents to check on their sleeping babies to make sure they are still breathing. With all the attention SIDS gets, this should come as no surprise. However, as the mother of a preemie, I have to chuckle a bit at the sense of panic induced in the parent of a full-term baby with no health problems. Though their fears are not completely unfounded, these parents have much less to worry about. For the parent of a preemie, the question as to whether the baby is still breathing is much more complex. The following information from the March of Dimes on the subject of apnea in premature babies explains why:
Premature babies sometimes do not breathe regularly. A baby may take a long breath, then a short one, then pause for 5 to 10 seconds before starting to breathe normally. This is called periodic breathing. It usually is not harmful, and the baby will outgrow it.
Premature and sick babies also may stop breathing for 15 to 20 seconds or more. This interruption in breathing is called apnea. It may be accompanied by a slow heart rate called bradycardia. Babies in the NICU are constantly monitored for apnea and bradycardia (often called “A's and B's”).
Sensors on the baby's chest send information about his breathing and heart rate to a machine located near the incubator. If a baby stops breathing, an alarm will begin beeping. A nurse will stimulate the baby to start breathing by patting him or touching the soles of his feet. The neonatologist might consider giving the baby medicine or using equipment, such as C-PAP (continuous positive airway pressure; delivery of air to a baby's lungs through either small tubes in the baby's nose or through a tube inserted into the windpipe).
(Source: "Common conditions treated in the NICU." March of Dimes website.)
With Buzzy, we dealt with all of the above: short breaths, long breaths, pauses between breaths, bradycardia (which will be the subject of tomorrow's post), monitors (both in the hospital and at home), stimulation, medication, CPAP (which was secured in place by a device that resembled aviator goggles), and a tube in her nose to deliver oxygen. There were some frightening moments, especially after we went home and there was no nurse to constantly monitor these things. There were also comically frustrating moments when one of us would accidentally yank the cord out of the home monitor, causing it to go off in a rather shrill manner. It was a moment like this that earned me the right to pick up my older daughter from preschool in the lane reserved for the day care vans rather than get out of the car with baby and monitor and wait outside the classroom door with the other parents.
Today, the apnea monitor is a thing of the past. Buzzy has done as she should and outgrown her inconsistent breathing, and it has been over a year since a courier came to pick up the thing that went everywhere with us for six months. Sometimes, though, I find myself watching her as she sleeps and wondering if she's still breathing. I breathe a sigh of relief that she is.
Tuesday, November 1, 2011
Becoming Aware
According to the March of Dimes website, 1 in 8 babies born in the United States is premature. Each November, the organization hosts Prematurity Awareness Month as part of its campaign "to address the crisis [of prematurity] at home and abroad." This is the second November my family and I will observe Prematurity Awareness Month.
In November of 2009, I did not yet know that prematurity would touch my family. I would not find this out until the next month when early one Saturday morning my water broke. I was lowering myself on the floor to wrap my nephew's birthday present when it happened. At first, I thought I had lost bladder control, and for some reason, I felt it necessary to make this embarrassing announcement to my partner, who was still sleeping. He looked at me like any man who had been awakened with the words "I think I wet myself" would. The words that followed, however, changed his expression. "It's happening again," I said. Ten minutes later we were on our way to the emergency room.
In the days and months that followed, we became aware of what prematurity would mean for our family. We learned that our baby would be born sometime between 24 and 34 weeks. Dozens of doctors and nurses overwhelmed us with information on the risks she would face because of her prematurity. We also learned that with each week we were able to delay her birth, her chances of surviving and avoiding major complications improved. At 28 weeks, the risks would drop drastically. She was born the day we reached this mark.
After her birth, we became aware of the level of care a premature baby needs in order to make it home. We also had to face the harsh reality that not every baby gets to go home. Our NICU story ended happily, but this was not the case for the family of one little boy who shared a room with our baby. He was there one day, and the next there was an empty bed. For ten weeks, my biggest fear was that empty bed.
My fears were not completely eased when we finally did go home because premature babies and their families face even more challenges in the outside world. Each of these challenges has made me more aware of how fragile life can be.
In observance of Prematurity Awareness Month, I will, over the course of the next 30 days, devote this blog to the challenges of prematurity both in the hospital and at home. I will go through the alphabet, discussing one challenge each day all the way from A to Z. (I will take three days off at Thanksgiving because I will be spending this time with my family.) My ultimate goal is to reflect on what an awareness of this issue has taught me and to share my perspective with others. I hope you will stay with me to learn more about what prematurity means for millions of families like mine.
In November of 2009, I did not yet know that prematurity would touch my family. I would not find this out until the next month when early one Saturday morning my water broke. I was lowering myself on the floor to wrap my nephew's birthday present when it happened. At first, I thought I had lost bladder control, and for some reason, I felt it necessary to make this embarrassing announcement to my partner, who was still sleeping. He looked at me like any man who had been awakened with the words "I think I wet myself" would. The words that followed, however, changed his expression. "It's happening again," I said. Ten minutes later we were on our way to the emergency room.
In the days and months that followed, we became aware of what prematurity would mean for our family. We learned that our baby would be born sometime between 24 and 34 weeks. Dozens of doctors and nurses overwhelmed us with information on the risks she would face because of her prematurity. We also learned that with each week we were able to delay her birth, her chances of surviving and avoiding major complications improved. At 28 weeks, the risks would drop drastically. She was born the day we reached this mark.
After her birth, we became aware of the level of care a premature baby needs in order to make it home. We also had to face the harsh reality that not every baby gets to go home. Our NICU story ended happily, but this was not the case for the family of one little boy who shared a room with our baby. He was there one day, and the next there was an empty bed. For ten weeks, my biggest fear was that empty bed.
My fears were not completely eased when we finally did go home because premature babies and their families face even more challenges in the outside world. Each of these challenges has made me more aware of how fragile life can be.
In observance of Prematurity Awareness Month, I will, over the course of the next 30 days, devote this blog to the challenges of prematurity both in the hospital and at home. I will go through the alphabet, discussing one challenge each day all the way from A to Z. (I will take three days off at Thanksgiving because I will be spending this time with my family.) My ultimate goal is to reflect on what an awareness of this issue has taught me and to share my perspective with others. I hope you will stay with me to learn more about what prematurity means for millions of families like mine.
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