Showing posts with label premature baby. Show all posts
Showing posts with label premature baby. Show all posts

Friday, June 25, 2010

Update – Graduation from Developmental Follow-up

Last year, I wrote a blog post about my family’s experience at developmental follow-up appointments for our daughter who was born 15 weeks early. For those of you who are new to this site, our daughter, Olivia, was born at 25 weeks gestation and weighed only 1 lb 15 oz. Even though she came so early and was so tiny, she is a remarkably healthy and happy child. If you would like to know more about our experience, you can read all about it in a 3 part series posted last year titled “When Motherhood Doesn’t Go According to Plan.” Part 1 covers what it was like to deliver our baby early, part 2 describes our life while Olivia was in the hospital, and part 3 provides tips for coping with a premature baby’s hospitalization.

Just as a reminder, when babies are born prematurely, they are at risk for delays in their physical, cognitive and emotional development. In an effort to detect and address any delays as early as possible, infants who were born prematurely often require special appointments with a team of developmental specialists. During these appointments, the specialists use a variety of tests and measurements to evaluate how the baby is maturing.

Olivia, now 27 months old, has visited the developmental clinic 3 times, at 10, 18 and 26 months. Like I explained in the original post, our family really looked forward to these appointments. We enjoyed watching Olivia complete the evaluations and were anxious to learn about ways we could help her development progress. At the first appointment, we were pleasantly surprised to learn that she was already ‘catching up’ and we used every tool the developmental team gave us to help her along. At the second appointment, we were even more surprised when they told us how far she’d come.

The 3rd appointment progressed much like the first 2. The appointment started with the Bayley Scales of Infant Development testing, which is used to evaluate cognitive, language, and motor development. For Olivia this test was more like a game where she got to put puzzles together, stack blocks, and look at picture books. Next a nurse practitioner measured Olivia’s growth and reflexes. The growth measurements are a little more extensive than those performed during normal pediatrician visits, but still only took about 10 minutes to complete. Finally, we met with a social worker to discuss any concerns we had and to get information about additional resources available to our family.

During our visit with the social worker, we were surprised once again! Originally, we were told to expect to attend at least 2 appointments per year for 3 years, but that the schedule could change based on our daughter’s needs. Because Olivia had tested so well, she was graduating from the program and wouldn’t have to attend any more follow-up appointments! She even received a graduation certificate with 3 pictures of her, 1 from each appointment.

Even though she has graduated from the program, Olivia is still at risk for some learning difficulties, so we will continue to watch her closely. The social worker gave us some information about services in our area in case any concerns arise. For example, once she turns 3 years old, Olivia will be eligible for any services offered by our local school district.

Overall, our experience with the developmental follow-up clinic was very positive. Even though we were nervous before our first appointment, we learned a lot at each appointment that we used to help our daughter reach her full potential. If you have a story to share about your experience with developmental follow-up of a premature infant, we’d love to hear from you.

Friday, November 13, 2009

Monitoring Development in Babies Born Prematurely - My Experience during Developmental Follow-up Appointments

Bringing home a baby who was born prematurely is a big milestone! In a previous post, I described how it felt to bring my daughter home almost 2 ½ months after she was born. It was exciting that she was strong enough to come home, but it was a little scary too. Even though she was finally home, our experience was still different than it would have been if she had been born at term. We were careful about taking her out in public and about having visitors at the house, so that she wouldn’t be exposed to germs and illnesses. In the first month, we visited the pediatrician weekly, then monthly for the next year. Now that she is older, we visit the pediatrician on the typical schedule, once every few months.

In addition to her normal pediatrician, we have appointments with a special medical team who evaluate her development. Because babies who are born early develop differently than most babies, it is important to monitor their progress and identify any issues early. Where families receive their developmental follow-up depends on a number of factors, including but not limited to type of insurance, location, and the infant’s risk level. One way is through an Early Intervention Program (EIP) which is a federal- and state-funded program for infants who are at risk of developmental delay. We had our appointments at a follow-up clinic connected with the hospital where Olivia was born. The hospital should provide information about who will be conducting the follow-up visits before your baby is discharged.

The number of appointments needed varies based on degree of prematurity, health status, and developmental progress. During the appointment, evaluations will be conducted by a number of different specialists. The development team typically consists of developmental pediatricians, nurse practitioners, physical therapists, occupational therapists, clinical psychologists, social workers and ophthalmologists.

We had our first developmental follow-up appointment when Olivia’s chronological age was 10 months and her corrected age was 6 months. Chronological age is the age from the day the baby was born. Corrected or adjusted age is the age of the baby based on the due date. For premature babies, both numbers are important. You need both numbers to get a clearer picture of where your baby should be developmentally. For example, although Olivia was 10 months old, she had just started sitting up, which is something babies usually do around 6 months of age.

I remember being really nervous before our first appointment because I didn’t know what to expect. It turns out I had nothing to worry about and that I actually enjoyed finding out how Olivia was progressing. Here is an overview of what happened during our first appointment.

First we met with a Pediatric Nurse Practitioner, who took Olivia’s measurements (weight, length, and head circumference), evaluated her muscle development and reflexes, and discussed her health history with us. The measurements were taken using very precise methods. Muscle development is examined because premature infants’ muscles develop differently than they would have in utero. For example, the muscles required to have a straight, stretched out body develop early in pregnancy, when there is plenty of room in the womb. As babies get bigger, the amount of space in the womb decreases, forcing them to curl into what is commonly called the fetal position. Babies who are born very early have to develop the muscles needed to curl up after they are born and the difference between developing in the womb and in a crib can affect how they learn to sit, crawl, and walk. It is very common for premature babies to have tight muscles and joints. Olivia’s ankles were especially tight, so we were given exercises to help them loosen up and make it easier for her to walk when she was ready.

Next, we met with a physical therapist, who conducted a developmental evaluation. The physical therapist used the Bayley Scales of Infant Development. The assessment evaluates cognitive development, receptive language, expressive language, fine motor development, and gross motor development. During the assessment, the physical therapist uses different toys to test the baby’s abilities and observes how the baby interacts with both her parents and with the world around her.

The last person we met was the social worker. She asked us questions about our support system (family, friends, etc), our work, and our life at home. The goal of the social worker is to determine how your family is coping with the new child and to address any needs you may have.

After the appointment, the medical specialists developed a report about Olivia’s developmental status. Copies of the report were sent to her pediatrician and to us. Summaries of the team’s observations were provided along with the scores from the developmental evaluation (based on both chronological age and corrected age). The final section of the report described the team’s recommendations and referrals.

So far, Olivia has visited the follow-up clinic twice, at 10 months and 18 months, and she is scheduled to go again at 26 months. Our second appointment was much like the first, just with different tests. Even though I was nervous before our first appointment, now that we’ve been through it, I am grateful for the opportunity to see how Olivia’s development compares to that of children born at term. It has also relieved some of our stress to know that she will get the help she needs if she encounters any difficulties.


Next time: We’ll describe some baby behaviors that can be misleading.

Tuesday, August 11, 2009

When Motherhood Doesn’t Go According to Plan: Tips for Coping with Your Premature Baby’s Hospitalization (Part 3 of 3)

Now that I have shared my experiences with preterm labor (Part 1) and life with a hospitalized infant (Part 2), I want to share some of the lessons we learned during Olivia’s hospital stay. I am going to be honest; no list of “tips” will make it easy to have a hospitalized child. But I hope that by sharing my experiences, I can help you to deal with some of the challenges ahead and reassure you that you are not alone.

Use the hospital resources
During the months following Olivia’s birth, the hospital seemed like a terrible place to be day after day, yet the hospital staff was a vital source of help and support for my family. The hospital appointed a social worker to assist our family, held support groups every week, and even had some small onsite apartments available for families who lived outside of the area.

Start a blog or appoint a communication liaison
Keeping friends and family informed about your baby’s status is a full-time job. I remember coming out of the hospital one evening, after a 2-hour visit, and having 15 new voicemails. Instead of spending all of your time on the phone, I suggest finding another way to provide updates to friends and family. For us, it was easiest to start a blog. We posted pictures and stories about the baby and let everyone know how we were doing. If you aren’t comfortable starting a blog, you can send out emails, texts, or just ask a friend or family member to share the latest news for you.

Find a nurse with whom you are comfortable
For the first few days of Olivia’s life, she seemed to have dozens of nurses caring for her. Although each one was qualified and very nice, getting to know a new nurse every 12 hours added to our stress. Our hospital let us choose a “primary” nurse to care for Olivia. It was reassuring to have a consistent nurse who knew us and our wishes for our child.

Pump your breast milk
When your baby is in the NICU, it is easy to feel like you don’t have any control over her care. Providing breast milk is something only you can do for your baby. In fact, it is one of the most important things you can do for her. Everyone knows that breast milk is best for babies, but it is even more important for premature and sick infants. Because premature infants don’t have time in the womb to fully develop, the unique composition of breast milk is perfect for reducing the risk of infection and other complications. Let us know if you are interested in a blog entry about pumping!

It is OK to take a break from the hospital
At first, we spent all of our time at the hospital, but being there so often started taking its toll on us. We were torn between wanting and needing to be with our daughter and needing to have some time to ourselves. It is ok, and in my opinion, important to take some time for yourself. That being said, there was never a day that we didn’t go see Olivia, but there were a few days when we stayed only for a short time.

When you have questions, ASK
Nurses and social workers are very knowledgeable, but they may not be able to answer all of your questions. Neonatologists have busy, stressful jobs and sometimes they can forget that you may need some attention. If you have questions for your baby’s doctor, write them down and bring them to the hospital. If you don’t usually see the doctor, ask the nurse to schedule an appointment for you. Talking with the doctor for just a few minutes can make you feel more informed about your baby’s health.

Contact your employer as soon as possible
Depending on your situation, you may run out of maternity leave before your baby is discharged from the hospital. While I think this is a major flaw in US labor law, this is often the case, given that maternity leave is typically only 6-8 weeks long. It is important to contact your employer before you are scheduled to return to work to inform them about your situation and explore options for making the transition easier. You may be able to modify your schedule, telecommute, or even receive donations of paid time off from other employees.

Do all that you can to care for your baby
As your baby gets older and stronger, you will be able to help care for her more and more. You can give your baby baths, change diapers, dress her, and feed her. One of my husband’s favorite things to do was (and still is) to read to Olivia. He bought her first book when she was just a few weeks old and he read to her while I held her. Although, I am sure that she enjoyed the story, just hearing his voice and being close to her mommy helped her relax. Even now, 16 months later, she loves to read books with her daddy!

Help your other children understand what is going on
Helping a young child adjust to the idea of having a new baby brother or sister can be quite a task, and this is especially difficult when the new baby is sick or isn’t coming home right away. Before talking to your older child, it is important to consider how much your child can understand and cope with. The social workers and nurses can help you determine how best to explain what is happening. There are a number of children’s books available to help children understand what is going on (try typing “premature baby” into the search section of your favorite online bookstore).

Educate yourself
There are many resources available for parents of premature infants. My favorite is the March of Dimes. They have an entire web site full of educational materials about premature birth and NICU families at http://www.marchofdimes.com/prematurity/prematurity.asp.

If I had my wish, all babies would be born healthy at term and no one would ever need to use these tips. Unfortunately, as with “Operation Baby Banuelos,” becoming a parent doesn’t always go according to plan. I found that the process of sitting down, reflecting, and writing about what we went through has been extremely therapeutic for me. I hope that you’ve found these 3 entries helpful and that you will pass them on to other families who would benefit from reading them.

Next time: Bringing home baby number 2…or 3…or 4…

Friday, August 7, 2009

When Motherhood Doesn't Go According to Plan: Life with a Hospitalized Baby (Part 2 of 3)

Looking back, it seems like the next few months flew by, but I know that wasn't how it felt at the time. Olivia continued to breathe on her own and was able to get more and more milk through her feeding tube. Her heart was still weak, but it was getting stronger every day. She was gaining weight and the nurses and doctors were very impressed with her progress! Meanwhile, my husband and I got into a routine. I would go to the hospital for a few hours during the day while he was at work. Then, we would go back together after dinner. I was pumping every 2-3 hours and was making enough milk so that she never had to get formula. By the time she was 1 month old, she had gained almost a pound and 2 inches in length. A few days later, she was moved from the high risk room to the intermediate room! It seemed like everyday we had happy news to share, so we started a blog, where we could post pictures and keep our family and friends informed about her status. It was really helpful to be able to share even the smallest developments.

As time went by, we got to do more and more to care for Olivia. At first we were only able to change her diaper. Then, when she was strong enough to eat from a bottle or from my breast, we were able to feed her. Pretty soon, we were doing all of her care while we were there and the nurses were just watching!

After 8 weeks, my maternity leave was ending and I had to make what seemed like an impossible decision. We were still unsure about when Olivia would be coming home, so I had to choose to either take the rest of my vacation time or to go back to work and save my time off so that I could be with her when she came home. We ultimately decided that I should go back to work while she was still in the hospital. Thankfully, I was able to work from home and from the hospital for most of the following weeks.

Around the same time that I went back to work, we realized that she was rapidly achieving the milestones necessary for her to come home. Each hospital has a list of requirements that must be met before premature infants can be released, and she only had 2 left. She needed to get better at eating from her bottle and she needed to go 7 days without any drops in her heart rate. Time started to slow down. We got the house all ready, had her car seat installed and inspected at the police station, and attended the CPR and infant care classes offered at the hospital. Even though there was so much to do, it felt like we spent most of our time waiting.

All the waiting was worth it!
Just 74 days after she was born, (and 3 weeks before my actual due date) Olivia was ready to come home! Despite her rough start, she was a happy, healthy baby, but we still had to take a lot of precautions. She was still smaller than most newborns, weighing about 5 1/2 pounds. At first, she had doctors' appointments every few weeks and we were instructed to keep her home as much as possible. We had to be very careful about who came over to visit and make sure that she wasn't exposed to any illnesses that her tiny body couldn't handle. All of this seemed so simple compared to having to leave her every night. We were prepared to do whatever it took to have her home with us!

Once we got home, however, reality sunk in. I felt like someone needed to be watching her 24 hours per day. We didn't have the monitors to let us know if she needed us anymore. I constantly worried that she wasn't breathing or that her heart rate would drop and we wouldn't know. Within just a few hours of her homecoming, I was sure that she needed to go back to the hospital. This feeling went away over the next few days as we got used to our new routine. No more driving back and forth to the hospital. No more eating in the car or the hospital cafeteria. No more nurses dictating when she got to eat or when we were allowed to hold her. She finally came home to live happily ever after!

Fast-forward 13 months...to a much better place
Olivia is a normal, silly toddler. She is growing like a weed. She walks. She talks. She does everything a normal toddler does. When people find out that she was born so early, they are shocked. She is extremely social and makes friends everywhere we go. She loves to read books, listen to music, and play ball. If anyone would have told me a year ago that this is what our life would be like now (which I am sure someone probably did) I wouldn't have believed them. Olivia is living proof that miracles do happen. Along the way, so many things could have gone differently, according to my plan, but if they had, we wouldn't be where we are today. I know that sounds cheesy, which isn't usually my style, but it is true. "Operation Baby Banuelos" may have hit some snags along the way, but we have the beautiful, sweet, smart baby girl that we always dreamed of.

Next time: Part 3 - Tips for coping with your premature baby's hospitalization.

Monday, August 3, 2009

When Motherhood Doesn't Go According to Plan (Part 1 of 3)

Operation Baby Banuelos
I am a planner. I plan out the next day at night before I go to bed. I plan out the week's meals on Sundays. I even made a pregnancy plan. I sketched out exactly what becoming a mother would be like. Here is how "Operation Baby Banuelos" worked in my mind:
  1. Decide to have a baby
  2. After only 1 month of "trying," see 2 blue lines!
  3. Look and feel great for 9 months
  4. Have an easy, fast labor at 40 weeks
  5. Bring beautiful, healthy baby home and live happily ever after!
I soon discovered that being a parent rarely goes according to plan. Here is what "Operation Baby Banuelos" taught me:
  1. Deciding to get pregnant is the easiest part!
  2. Getting pregnant right away isn't always as easy
  3. Being pregnant isn't always fun
  4. You can't plan when labor will start
  5. Newborns don't always get to come home right away
Looking back, I realize I was more than a little idealistic. But for me, being a mother was something I had always dreamed about. Sure, I knew about morning sickness, premature labor, and the increasing prevalence of infertility. I was pursuing a Master's Degree in Maternal and Child Nutrition, so I knew more than most people about pregnancy and all of the possible risks. I just never considered that complications would be part of my story. They weren't part of my plan.

In this post, I will share my experience with early labor and the birth of my daughter. Next time I will describe what it was like leaving the hospital without my baby. Finally, in Part 3, I will share tips for coping and making the best of a difficult situation.

Briefly: Steps 1-4 of my story
For us, step 1, deciding to have a baby, was the easiest part. But it took 2 years to get to step 2. Once I finally got pregnant, I was determined to do everything right. I stopped moving heavy boxes; I left the house when my husband was painting; I bought more fruits and vegetables; I planned (there is that word again!) to go for walks in the evenings. Unfortunately, following a plan is hard when you can't even keep water down. I was so sick that I lost 10 pounds during the first 3 months of my pregnancy and I struggled to get to work each day. Just as I thought step 3 was a lost cause, I started to feel better. I had more energy, could eat real food, and I started to enjoy being pregnant. I began to feel my baby move and we found out we were having a girl!

Unfortunately, step 4 came much earlier than we expected. At 24 weeks, I noticed a little spotting and even though my doctor assured me that it was nothing to worry about, I made an appointment. What started out as a quick check-up over my lunch hour, turned into immediate admission into the hospital. At first, everything happened so quickly that there wasn't much explanation about what was going on. All we knew was that I was already dilated to 3 centimeters and we had to stop the labor. I was taken to a hospital equipped for high risk pregnancies and things improved. I wasn't having contractions, the labor didn't seem to be progressing, and I came to terms with the fact that the best thing for my baby was for me to stay in the hospital for as long as possible. But, on my 6th day in the hospital, my baby flipped over and started kicking downward. We couldn't wait any longer. Olivia was born 15 weeks early, at 25 weeks gestation. She weighed only 1 pound 15 ounces and was 13 inches long.

Step 5: Bring beautiful, healthy baby home and live happily ever after
Needless to say, with step 4 going so wrong, step 5 was thrown out the window. We knew that babies born so early faced an uphill battle and that our daughter would struggle just to survive. According to the March of Dimes, 1% of babies in the United States are born before 28 weeks and of those born at 26 weeks, 80% survive. Olivia was born at a time when research shows that things could go either way.

There are 2 things I remember clearly about those first few days. First, I remember how excited I was to take a shower! It had been 8 days since I was allowed to shower and it felt so good! The other thing, even better than the shower, was the first time I was able to take some of my breast milk to the NICU! I started pumping just a few hours after getting back from the recovery room because I knew how important my milk would be to Olivia. Since she was too small and weak to nurse, I needed to pump frequently to stimulate my the milk to come in. By day 3, the doctors had decided to start feeding her through an OG-tube, which is a tiny tube that went into her mouth and down to her stomach. I remember the first time I got any milk out, I had less than 1 milliliter of colostrum to take to her, but I was so excited. I carried it over to the NICU in a tiny syringe. It was the first time I felt like I could do something to care for my baby, and that was the best feeling I had had in days!

Just a few days after Olivia was born, it was time for me to be discharged from the hospital. I had mixed emotions about going home. On the one hand, I was glad to be leaving the hospital. I had been in bed for over a week, so the idea of being able to go outside (or even to the kitchen to get something for myself) was thrilling. On the other hand, I knew that I would be leaving my baby in the hospital and home was 30 miles away. Because I had a C-section, I was not allowed to drive for a few weeks after the surgery. My friends and family were very supportive and worked out a system to make sure I always had someone to take me back and forth. But, even though all of their support was appreciated, they couldn't make me feel any less helpless.

Next time I will continue the story about Olivia's time in the hospital and what it was like when we were finally able to bring her home.