Yesterday almost went by without my noticing the date. It is an important date in our story. It is the date on which my water broke two years ago.
As the day began, I went about my business just as I did then. I had no idea what day it was or why it was significant, just like I had no idea two years prior that my life was about to change. Then, it snuck up on me. While sitting at the computer, I moved the mouse to the bottom corner of my screen, and there it was -- December 12, the day I had been sitting on the floor of my living room, wrapping a present when another feeling snuck up on me.
An anniversay is something to celebrate or commemorate. I'm not exactly sure which I should have done on this occasion because it is one that symbolizes a beginning and an end. In it is intertwined both love and loss. No, I did not lose my baby, but there is a part of me that was lost that day, the part that believed I and my baby were safe. I will probably never regain that part of me. I'm not sure that I want to, though, because while I did lose something that day, I gained something else, something I did not truly appreciate until faced with a crisis -- the love and compassion of others manifested in the thoughts, prayers, and visits of people from all different parts of my life. It was on December 12 that I realized the truth in one of my favorite quotes: "No man is an island."
December 12 began a learning experience unlike any other in my life, one that taught me both the fear of the unknown and how to overcome it. December 12 is not the day that Buzzy was born; however, something was born in me that day, something that I am still trying to understand two years later.
Tuesday, December 13, 2011
Friday, December 9, 2011
A Somber Occasion
I am very saddened today by the loss of another woman's baby. I learned from one of my students in class last night that Michelle Duggar has miscarried her 20th child. Many have said that with her age and previous history that she should not have been having another baby. Perhaps not, but who are they to judge? Having a baby, no matter the circumstances, is a decision only the couple can make.
Though I have nothing else in common with Mrs. Duggar, I feel a sense of connection to this woman I have never met. Her 19th child was born just a month before my 2nd. Both were premature. Hers was born at 25 weeks and mine at 28. I was in the hospital on bed rest while her baby was in the first few weeks of her long NICU stay. When I learned the news that little Josie Duggar had arrived early, I began frantically searching the Internet for updates on her condition. I wanted to know how she was doing as her story would likely be that of my own baby. When the shows featuring their experience with prematurity aired, I watched them. Their experience was so much like my own that I often found myself in tears.
When the Duggars announced that they were expecting number 20, I was hopeful and excited. I was looking forward to the delivery of a healthy baby after their previous ordeal. I was also offended by the negative comments made against them. Yes, she is of advanced maternal age, and yes, she has a previous history that includes miscarriage, preeclampsia, and premature birth. Are these legitimate reasons to villify a couple who wants to add another child to their family? Will I meet with the same criticism if I decide to have another baby? Though I am not as old as Mrs. Duggar, I am technically of advanced maternal age. I also have experienced a preterm birth. Both of these factors increase my risk of developing problems in any future pregnancies. And both scare me.
Today, as I think about the Duggar family, I wonder about my own. Will I be able to conceive and carry a healthy baby to term considering my risk factors? If I do become pregnant, will I meet with the same fate? I wish I could know the answers to these questions. For now, all I can do is shed a tear for another woman's loss and hope it does not become my own.
Though I have nothing else in common with Mrs. Duggar, I feel a sense of connection to this woman I have never met. Her 19th child was born just a month before my 2nd. Both were premature. Hers was born at 25 weeks and mine at 28. I was in the hospital on bed rest while her baby was in the first few weeks of her long NICU stay. When I learned the news that little Josie Duggar had arrived early, I began frantically searching the Internet for updates on her condition. I wanted to know how she was doing as her story would likely be that of my own baby. When the shows featuring their experience with prematurity aired, I watched them. Their experience was so much like my own that I often found myself in tears.
When the Duggars announced that they were expecting number 20, I was hopeful and excited. I was looking forward to the delivery of a healthy baby after their previous ordeal. I was also offended by the negative comments made against them. Yes, she is of advanced maternal age, and yes, she has a previous history that includes miscarriage, preeclampsia, and premature birth. Are these legitimate reasons to villify a couple who wants to add another child to their family? Will I meet with the same criticism if I decide to have another baby? Though I am not as old as Mrs. Duggar, I am technically of advanced maternal age. I also have experienced a preterm birth. Both of these factors increase my risk of developing problems in any future pregnancies. And both scare me.
Today, as I think about the Duggar family, I wonder about my own. Will I be able to conceive and carry a healthy baby to term considering my risk factors? If I do become pregnant, will I meet with the same fate? I wish I could know the answers to these questions. For now, all I can do is shed a tear for another woman's loss and hope it does not become my own.
Thursday, December 1, 2011
Zen
noun
a Japanese sect of Mahayana Buddhism that aims at enlightenment by direct intuition through meditation
(Source: "Zen." Merriam-Webster website.)
Today marks the conclusion of my month-long reflection on the experience of having a premature baby. I realize that this post is actually a day late, and I am going to blame that on the intense meditation it takes to draw the final conclusions you will read here. (My students often use a similar excuse. When I ask where an assignment is, a few are brave enough to say, "It's in my head.")
Over the last month, I have learned a few things both from my reflections and the process of putting them into words. On the latter, I have realized how difficult it is to keep up with a daily writing goal. My schedule and children leave me with very little free time, especially during the school week, and on the weekends, I found it difficult to motivate myself to complete the task. Many of my posts were written at the end of the day and felt very much like an afterthought. Yet, this task was of great importance to me because the subject matter is very close to my heart. Thus, even if my musings seemed more like ramblings, I feel the sense of accomplishment one gets from setting a goal and seeing it through to the end.
In putting my thoughts into words, I have learned quite a bit about the journey my family has made. I have also learned a few things about myself. First, I now know that I have much more strength than I realize, and so does my family. Having a preemie requires each member of a family to stretch themselves to the limit and then some. Though at times it may have felt like we were going to break, all of us made it through with no lasting damage.
Another lesson I have learned is to let go of fear. There is certainly quite a bit of that involved in having a sick baby, and some of it stays with a person long after all is well. There is the fear that something will go wrong, and in the case of a premature baby, it often does. Such fear is not a vague fear of the unknown either because a parent of a preemie knows exactly what can go wrong. Yet, living in fear only means that one misses out on what goes right. Buzzy has been slow in weight gain and language development. I can live in fear that she will always be small and slower than her peers, or I can celebrate the fact that she now weighs enough to sit in a forward-facing car seat and has enough cognitive awareness to clearly respond with an "I don't know" when asked a question. Will her prematurity cause any lifelong problems for her? It is possible, but seeing the ways in which she has exceeded expectations is enough to give this pessimist hope.
I leave you with the following hopeful words:
We do not learn by experience, but by our capacity for experience
- Buddha
Although the world is full of suffering, it is full also of the overcoming of it.
- Helen Keller
a Japanese sect of Mahayana Buddhism that aims at enlightenment by direct intuition through meditation
(Source: "Zen." Merriam-Webster website.)
Today marks the conclusion of my month-long reflection on the experience of having a premature baby. I realize that this post is actually a day late, and I am going to blame that on the intense meditation it takes to draw the final conclusions you will read here. (My students often use a similar excuse. When I ask where an assignment is, a few are brave enough to say, "It's in my head.")
Over the last month, I have learned a few things both from my reflections and the process of putting them into words. On the latter, I have realized how difficult it is to keep up with a daily writing goal. My schedule and children leave me with very little free time, especially during the school week, and on the weekends, I found it difficult to motivate myself to complete the task. Many of my posts were written at the end of the day and felt very much like an afterthought. Yet, this task was of great importance to me because the subject matter is very close to my heart. Thus, even if my musings seemed more like ramblings, I feel the sense of accomplishment one gets from setting a goal and seeing it through to the end.
In putting my thoughts into words, I have learned quite a bit about the journey my family has made. I have also learned a few things about myself. First, I now know that I have much more strength than I realize, and so does my family. Having a preemie requires each member of a family to stretch themselves to the limit and then some. Though at times it may have felt like we were going to break, all of us made it through with no lasting damage.
Another lesson I have learned is to let go of fear. There is certainly quite a bit of that involved in having a sick baby, and some of it stays with a person long after all is well. There is the fear that something will go wrong, and in the case of a premature baby, it often does. Such fear is not a vague fear of the unknown either because a parent of a preemie knows exactly what can go wrong. Yet, living in fear only means that one misses out on what goes right. Buzzy has been slow in weight gain and language development. I can live in fear that she will always be small and slower than her peers, or I can celebrate the fact that she now weighs enough to sit in a forward-facing car seat and has enough cognitive awareness to clearly respond with an "I don't know" when asked a question. Will her prematurity cause any lifelong problems for her? It is possible, but seeing the ways in which she has exceeded expectations is enough to give this pessimist hope.
I leave you with the following hopeful words:
We do not learn by experience, but by our capacity for experience
- Buddha
Although the world is full of suffering, it is full also of the overcoming of it.
- Helen Keller
Tuesday, November 29, 2011
Yo-yo
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.
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.
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.
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