Monthly Archives: July 2013

Progress

Charlie’s communication has improved lately. A few weeks ago, she started using “Yay!” in context. She has since built upon that initial skill. Her progress was apparent throughout today’s activities.

During music therapy, she was more vocal than usual. She played with toy animals that are used for props during Old McDonald. She picked up a cow and said, “Moo”. Later, the therapist instructed, “Go to mommy. Find mommy.” Charlie turned, crawled toward me, and climbed into my lap.

Next, we had lunch after music therapy. I tore off and handed her a manageable slice of grilled cheese. Mostly, she gnawed and kind of sucked on it. Then, she dropped it by accident. Rather than scream, she signed “More” to me. I obliged and handed her another piece.

Recently, Charlie has begun trying to repeat simple words. Some times, she does it. Other times, it’s a valiant effort. She continued to do this most of today as well. Most notably, she correctly sang “La la la la” with the characters in a video during a song.

Later in the evening, she called for her dad using “Dada” and holding out her arms. It was her second word.

Days like today are wonderful. It is exciting to be able to notice leaps of progress. Now, if only we can get her to eat (taking food up to her mouth is a huge step in the right direction).

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The Takeaway

Any ordeal in life can be a learning experience. Charlie’s birth was no exception. These are some of the things I discovered during Charlie’s birth and first year:

  • How to be a better friend than I have been in the past. I know not to say, “If you ever need anything…” or tell people that I know how they feel (because I don’t).
  • Even if something is performed with flawless perfection,  it can still turn out poorly. Not all bad things that happen have a cause. Misfortune often occurs like a lousy dice roll… by chance.
  • Don’t sweat the small stuff. There are very few things in life that are a matter of life or death. Likewise, short of death, loss, and heartbreak, most things can be fixed or managed.
  • Some things take time. I have learned to be more patient. Whether I’m waiting for Charlie to grow or for me to recover from a loss, I need to relax and let time take its course.
  • Believe in the amazing. Everything Charlie has done and been through has been incredible. Good things can happen too.
  • Not every relationship is meant to work out. No matter if it is a doctor, friend, professional, or acquaintance. I try to choose wisely where I invest my time and energy. Some people just work better together than others.
  • I learned to trust myself and my instincts… even if others dismiss them.
  • What a person wants, needs, or desires does not have to be practical or logical. It is still just as valid and important.

NICU parents, what would you add to this list?

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This is how Charlie greets me in the morning.


First Swim

After a long walk on the W&OD Trail, Charlie went for her first swim today. She had to be eased painstakingly slow;y into the pool. Once she got the hang of things, she seemed to enjoy it. However, she looked around as if she was curious why there was a dog and other people in her giant bath tub.

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Charlie as she toweled off after her swim.


Checklist Of Things I’d Like To Do In The Next Few Years

With Charlie being under the weather this weekend, we stayed home all weekend. I have had plenty of time to think. There is a list of things I would like to do in the next few years. Here it is… along with the obstacles that will have to be surmounted to carry them out.

  • I would like to ride the Cardinal and Empire Builder Amtrak lines with Charlie. I would like her to be old enough to remember the trip. In addition, I need to save up for the tickets.
  • I wish to take Charlie on a cross country road trip with her dad. We could see sites and visit friends along the way. Again, I want to wait until she is older for memory’s sake.
  • I long to get back into running and biking. I need to have my spine treated. My first appointment since I became pregnant with Charlie is tomorrow.
  • I want to visit each of the Virginia State Parks with Charlie. We are well on our way to checking off this one.
  • I aspire to find meaningful work that utilizes my skill set once Charlie is in school. The challenge is finding or rediscovering a direction.
  • I have the yearning to enjoy a delicious meal topped off by desert with Charlie. She will have to overcome her oral aversion and feeding issues before this can happen.
  • I really want to take Charlie to her first baseball game. Plans are in the works.
  • There is a particular keepsake quilt that I would like to make. There are two barriers: I need a new sewing machine and my back pain. It would be nice to get back into sewing in general.

Presently, the idea of a bucket list is too overwhelming. Especially, on the days that we fall back into survival mode. It was much easier to strategize for the next few years. Now that the list is made, the challenge has become to complete it.

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Charlie has been resting this weekend. She is wearing a t shirt given to her by a dear friend.


It’s Our New Thing

Today is our wedding anniversary. My husband and I have been joking with each other all day. We find it funny we are spending it exactly the same way we did last year… watching Charlie sleep, coaxing her to eat, and diligently measuring her fluid intake.

I try to keep what I write about my husband and our relationship on my blog to a minimum. There are some things I consider too private to write about. However, because it is our anniversary, I’m going to bend that rule a little. I frequently read anonymous posts on preemie sites inquiring about relationships. I’m going to address it with few vague words. These are some of the ways having a micro preemie has affected our relationship.

The first thing I noticed was that I saw my husband stronger than I had ever seen him. When I fell to pieces after Charlie’s birth, he took the reigns. He wheeled me to the NICU to meet Charlie. He bragged about her to strangers while I stood back and secretly hoped that I would not have to talk. After all that, I see him differently now. I know he has courage and strength within him that previously went unacknowledged.

Next, we had very different coping styles when Charlie was in the NICU. Despite our best efforts to be sensitive to one another, there were a lot of misunderstandings between us due to this. We had to consciously make the effort to communicate. Especially, during the times that we were short with one another.

Finally, what happened to us was traumatic. We both had different ways of surviving and bear different scars on our psyches. There are many powerful emotions and real fears involved in raising Charlie which cause irrational conflict. Sometimes, we need to take a few minutes to cool off (which is very difficult on occasion) and proceed to talk it out. Usually, once we understand the other’s position we can construct an agreeable compromise.

Marriage is not an easy endeavor for anyone. Having a micropreemie further complicates things (as any trauma does). This morning at 2 AM, my husband strayed from our discussion of Charlie’s feeding problems (we now know it is not a stomach bug) while we changed her vomit covered sheet to say “Happy anniversary”. I smiled back pleased he remembered and because non ambitious celebrations have kind of become our new thing.


Never In A Million Years

There are days that I wake up and wonder, “How did I get here?” and “Is this really my life?” There are several aspects of my life that I previously did not picture for myself. What I find amusing is that the things I once declared I couldn’t, shouldn’t, and wouldn’t do are the very things I love about my life now.

For example, until about a year prior to Charlie’s birth, I had written off kids as something for other people. I was convinced that I was not right for parenting and sure that I could not do it. Furthermore, I was positive special needs parenting was something beyond my capabilities. However, having Charlie is one of the best decisions I have made and will ever make in life. It may have been impossible to picture life with a baby before her but I surely cannot picture life without her now.

Likewise, my friends in high school used to tease me by saying that I would be a soccer mom.  Although I did not know what I wanted to be, I vowed there was no way that I was going to be a house wife. Fifteen years later, I am a stay at home mom. When Charlie starts school, I plan on returning to the work force (I am already exploring career options). Even so, I am perfectly content with what I am currently doing. I am proud to say I am a stay at home mom and treasure these years.

Lastly, other people are shocked when I tell them that I joined a moms’ group. I suppose I am the last person anyone (including myself) would expect to join a moms’ group. Whatever the reason, I am pleased that I joined. The other moms in the group are funny, kind, intelligent, and understanding. I fully enjoy their company. They are supportive and encouraging. In turn, I find myself desiring to try new challenges, resurrect old hobbies, and confront issues that with I may otherwise dawdle.

I suppose I had not envisioned this life for me because I was very different when I was younger. I was unable to imagine the possibilities before me. Nevertheless, life has turned out better than I had ever hoped it would be. While it is nice to bewilder others, I find the real delight comes from surprising myself.


Poor Baby

It is no secret that Charlie has a history of not being the best eater. The combination of an oral aversion, reflux, poor motility, and intolerances have made feeding unbearable at times. Yesterday, things were further complicated with Charlie’s first illness.

Charlie went on feeding strike after yesterday morning’s bottle. It was an awful feeding. She fought most of it (which she does at times). As the day progressed,  she showed signs that something was obviously wrong. I did what I usually do during times like these… she went to the doctor.

After a day long affair, it was noted that Charlie was running a fever. Was she sick or was it due to teething? Is this latest strike due to her having a stomach illness? Is this a feeding strike due to pre existing issues?

Time will help us sort things out.

For now, my job is to “keep her breathing and keep her hydrated”. On Monday, she will be reevaluated and the plan of action revisited using data gathered over the weekend. Hopefully, she will be better by then.

In the meantime, Charlie will be resting. Today’s ongoing slumber with intermittent feeding attempts is very reminiscent of her days in the NICU. Each bottle battle she and I have leave me feeling sorry for her. Poor baby.

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This was taken of Charlie playing at the library earlier this week.


Please Understand

Almost every preemie mom has a list of things they wish others knew. Here is mine:

  1.  Even though Charlie is no longer in isolation, I am still afraid of her getting unnecessarily sick (and having to return to the hospital). Please cover your mouth when you cough, do not touch her when we meet you in a doctor’s office waiting room, and refrain from asking to hold her immediately after graphically stating how sick you are. Please do not smoke around my baby (or any baby).
  2. I am exhausted. She is no longer in the hospital but it does not mean our ordeal is “over”. We are swamped with medical appointments, counting calories, managing medications, and various therapies. She needs to be fed often, sometimes she fights feeding, and struggles to keep down what she has eaten. There is very little that is “normal” about our lives yet. I still need your support and understanding.
  3. I do not know when or if she will reach her next developmental milestone and neither do her doctors. I can not answer questions such as “When will she be able to walk?” or “When will she be able to wean off of formula?” When people ask these questions, it reveals how disconnected they are from my world. It is similar to when we were constantly asked, “When is she coming home?” when she was in the NICU.
  4. I’m begging you. Please, no more anecdotes. Every baby (and preemie) is different. Charlie is doing things on her own time. I am okay with this. I do not want to hear a story about some other preemie that is “fine”.
  5. There are plenty of good sources to learn about preemies and the NICU. Please stop believing misinformation that is circulated like gossip.
  6. We live a very day to day existence. On tough days, it is one minute to the next.
  7. I miss many of my friends. We want to see you. Please invite us to visit or accept our invitation to visit.
  8. I had a plan of how I wanted to do things but it did not work out. I know breast is best, reusable diapers are better for the environment, and so forth. Many choices were made for me based on Charlie’s medical needs. I do not need to be “educated”.
  9. People who understand the least about what we have been through often feel they know the most about what is best. I am tired of being told “what I need to do”.
  10. I am really proud of my baby. We celebrate A LOT.

Other NICU moms, what do you think? Did I miss anything? What would you add?

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The Voice of Reason: How To Find The Right Pediatrician For You

Finding a good doctor is important for anyone. It is imperative  when one has a special needs baby. Before Charlie was born, I was only concerned with selecting a well educated, highly trained, and vastly experienced doctor (that takes my insurance). However, I have discovered there is more to consider when choosing a doctor. Fortunately, things fell into place when we found Charlie’s pediatrician. For all the NICU parents getting ready to bring your babies home, this post is for you. These are several factors I’ve found (sometimes the hard way) to be important when choosing a doctor.

First, excellent communication is crucial. In the past, Charlie had a few doctors with whom I communicated poorly. One spoke to me like I was an idiot and another was out right frightening with a harsh bed side manner. I adore Charlie’s pediatrician because she is able to translate medical jargon and will speak to me on my level. I feel that she is very receptive to my concerns and listens well. I feel comfortable asking questions or for a further explanation. Likewise, it is important the doctor communicates well with other specialists, therapists, or nurses as needed.

Additionally, you may want to select a doctor that practices at your hospital of choice. If your baby had to be readmitted, which hospital would you prefer? Is the doctor familiar with community resources? Does your doctor have realistic knowledge of the surrounding health care community? When Charlie had severe GI issues, she needed an immediate scan and to be seen quickly by a gastroenterologist. We lived in a densely populated area where it would have been weeks if the doctor had simply written the order for a scan and given the referral. However, Charlie’s doctor was savvy enough to help us circumvent the obstacles in order to get her cared for immediately.

Third, the doctor’s availability should be assessed. Are the office hours convenient? If you want to speak on the phone with the doctor, will they do that? What is the plan if something should happen after hours? Is it hard to get an appointment? Is the doctor always booked up? Is the location convenient? Charlie had a huge number of appointments her first year. They were exhausting and stressful enough without the added worry of challenging logistics.

Fourth, how well does (or will) your doctor know your baby? Charlie sees the same pediatrician each time. She recognizes Charlie on sight. With out checking the chart, the doctor is familiar with her issues and can spot her progress. This attribute is priceless in Charlie’s medical care. Minor changes (many of which are uncharted) can be the first sign of a big problem. The better a doctor knows your baby the quicker irregularities can be spotted.

Plus, it is helpful to have a doctor that shares your expectations as to what is appropriate for your baby. Charlie is developmentally delayed. It was a waste of time for us to see the doctor that gave her exercises that exceeded her skill level. However, I do not want a doctor that will give up on her either.  Is your doctor on target with your baby’s abilities? Are the goals and course of treatments reasonable in your opinion? Not too easy or too hard?

Finally, do you trust the doctor? Are options explained when decisions need to be made? Do you feel comfortable discussing ideas, needs, questions, or concerns?

This list is not all inclusive. These are a few things I’ve managed to figure out with experience. I am grateful for Charlie’s pediatrician. Through out the chaos of Charlie’s first year, she has been the voice of reason that has kept Charlie healthy and encouraged her to thrive.  She has set the bar pretty high for other doctors to follow.

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Skylar

Skylar

At some point during the course of this blog, there have been pictures of Kaia (our dog) and Maile (our cat). We refer to them as Charlie’s big sisters. Charlie had another pet-sibling named Skylar. It is time that I wrote about Skylar.

Skylar was a bunny. A French Lop to be exact. She was litter trained, played with the cat and dog, and binked during sprints across the floor. We had fun building her enclosures, making salads for her, buying her toys, and creating her box mazes.

Skylar like to have her head rubbed and hopped into our laps. The cat used to clean her and vice versa. She loved tunneling through boxes and burrowing in the shavings. With each box she destroyed, we said she was building her dream home.  She was a picky bunny that would only eat botanical hay. We had a voice for her and clichés that we claimed she spoke.

Two days before Charlie came home from the NICU, Skylar got sick late at night. I knew the day would come (bunnies are fragile) that she would get sick. I was prepared to nurse her back to health when it happened (bunnies often need syringe feeding and sub cutaneous fluids when ill). I knew I could do it and she was bonded with us (which improved outcomes).

However, I never imagined that Skylar would get sick two days before bringing home a twenty six weeker.

Upon finding her ill, my husband and I rushed her to the 24 hour vet. I sat with her in the back seat as we rode in the car. She leaned into my hand to be pet. I was hoping it was just a nightmare.

When we arrived, the vet took her back to be examined immediately. The prognosis was not entirely poor. She had a reasonable chance of surviving with intensive care.

My husband and I were already exhausted from Charlie’s three and a half month ordeal. Things were only going to get harder once Charlie came home. We were struggling as it was. As many people who said, “If you ever need anything…” there were very few people that actually followed through with requests. The sad truth was… we were on our own.

I knew it would not be fair to Skylar to draw things out while failing to provide our full attention. Similarly, it would not be fair to Charlie for us to be distracted. We had to make what felt like an impossible decision.

Skylar was peacefully put to sleep in my husband’s arms.

It was horrible on so many levels.

I hate that we were forced by circumstance to make that choice. Losing my bunny was another thing that premature birth had taken from us. I felt like I had just picked myself up from the blow of being a NICU parent and I had been kicked to the ground again.

We had to mourn in silence. We only told a few people about our bunny’s passing. I could not stand to hear anyone say that “it was for the best” or that she was “just a bunny”. If things worked out for the best, Skylar would still be with us.

Even now, I rarely talk about her.

I still feel guilty. It is like I let Skylar down by not trying. I feel I failed her. She needed me and I was not there.

At our new home, we have wild bunnies that live in our back yard. I see them frolic and play almost daily. Mostly, they remind of all the good memories I have of Skylar. Once in a while, I leave out a veggie in her honor.

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Another Anniversary or How Charlie Lost Her PEEP

Today is Charlie’s CPAP removal anniversary. Last year, Charlie was taken off of CPAP and put on a high flow nasal cannula. There are so many things I remember about that day.  Mostly, I remember the emotions of excitement, joy, and even a little anger.

The day before she was removed from CPAP, I had spoken with a neonatalogist. He provided a time estimate for Charlie’s progress. He said that it would be about a week before an attempt was made to move Charlie to a nasal cannula. He wanted to be sure that she continued to gain weight and not waste calories on breathing. I left that evening with a plan to return late the next night for a short visit.

My husband and I avoided the other babies’ weekend visitors by visiting at odd hours. We had more privacy and the nurses were more available when we visited during off times. That Saturday, we arrived late in the evening to a nearly empty NICU.

After performing the scrubbing and sanitizing ritual, I marched up to Charlie’s isolette and threw back the blanket covering it. Her CPAPless face was peering back at me. Surprised, I jumped back. “They must have moved around the babies again”, I muttered to my husband. On a few past occasions, they had shuffled the babies around and did not mention it until I could not find my baby.

I looked around for a nurse to guide me to my baby’s new location. No one came hurrying over to show me where my baby was. Confused, I looked at the name plate on the wall and the charts. It was our name. However, I was sure this was not our baby. Our baby wore a CPAP mask and hat. I started to panic.

My husband placed his hand on my shoulder and quietly said, “I think she got her CPAP mask off today.” Finally, I realized that the mystery baby laying in front of me WAS Charlie. I put my head in my hands and started sobbing.

Up until then, it was too much to hope that she would make any forward progress. For two months, I had become accustomed to the simple wish for minimal backsliding. I was so used to complications that I had not dared to dream of the possibility of Charlie improving.

That evening was the first time that I felt there could be an end to Charlie’s NICU stay. It was the moment that it occurred to me that “this too will end”.  I felt a mix of relief and happiness. I was overwhelmed.

The float nurse made her way over to us. I asked her why nothing was mentioned to us concerning the cannula. She explained that often parents are not told that they are going to try such measures. Sometimes it is done to spare parents disappointment if the attempt fails and other times it is just an oversight.

Hearing the explanation made me angry. Who are these people who determine that I need to be treated like a child? Why do they get to decide what I can and can not handle? If the doctor forgets to mention something this big, what else are they not telling me? I did not feel as if I was a participant in Charlie’s care (something that NICU parents are constantly reminded to be). I felt like I was being pandered to or pacified.

Although the anger affected my future trust with some of Charlie’s health care team, I did not let it ruin our evening. We held Charlie, doted over her, and took pictures. That night was the beginning of the end. Ten days later, Charlie was transfered to a different NICU as a feeder-grower.

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One of the nurses put the bow in Charlie’s hair. This is how I found her in the isolette.


Status From The Past

According to my Facebook status from a year ago, Charlie weighed three pounds and three ounces on this date last year. She was almost two months old.

At yesterday’s check up, she was sixteen pounds and nine ounces.

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This picture was snapped during feeding therapy today.


Let’s Talk About It

During Charlie’s first year, there were (and still are) many unanswered questions about her future. Will she be disabled? Will she have chronic health concerns? Will she have long term special needs? In order for me to acclimate to my new reality, I needed information. I found it strange that there have been very few people willing to discuss possibilities other than a full recovery.

The lack of discussion started with the NICU consult. When Charlie’s early birth was imminent, a neonatalogist stopped by my hospital room. He handed a sheet of paper to me with Charlie’s odds of survival based on gestational age and weight. Under his breath, he alluded to the possibility of long term disability. He did not say anything more about it.

After Charlie’s birth, I was repeatedly told how she was going to be “fine”.  Additionally, many of the preemie books are filled with stories of babies who are born prematurely without long term consequences. None of which, helped me understand and accept our new world. For about the first month and a half, I struggled to feel like things were going to be OK even if she survived.

Fortunately, I had the privilege of meeting and talking with a NICU mom of a baby with a trisomy. We talked about our babies and our babies’ “what ifs”. The discussions facilitated my understanding that things could be OK. She was among a small minority of people willing to discuss complex outcomes.

Following one such discussion with that mom, I spoke with one of Charlie’s special NICU nurses. I explained how I found talking to the other mom to be beneficial. The nurse answered with a story about a gravely ill baby with very limited function. Admittedly, I do not know the point of the story. I partially listened but was distracted with my own thoughts.  As I followed the story, I found myself thinking of all the possible ways the anecdotal baby could interact with the world despite its limitations.

I do not remember how the nurse’s tale ended. I do know that when she finished, I felt better. I realized that no matter what the outcome was for Charlie… she could still have an amazing life. It was then that I decided I would focus on her capabilities.

When Charlie was discharged, no one ever discussed the possibility of further issues. I suppose she was expected to be one of those preemies that catch up quickly and easily. I let myself believe that we were going to have the “normal” baby experience. However, that is not how things worked out. Charlie, (as I had found out later) like many micro preemies, has on going struggles.

Ever since Charlie’s birth, I have wondered several questions. Why is discussion limited to a false dilemma between death and full recovery? Why do I have to consult research literature and other micropreemie parents to find out that Charlie’s outcome is par for the course? Why is there a lack of discussion about outcomes, delays, disabilities, and challenges? Are others aware that silence is more frightening than discussing scenarios and options?

There are advantages to the existence of a dialogue. For example, useful ideas can be spread, the sense of isolation among parents can be reduced, better supports established, parents can be empowered, possibilities explored, and others can gain understanding. It is time that all of the babies are considered.  Let’s talk about it.  playpen


Late Night Check In

We returned home late tonight after my husband’s work party. It went really well. There were all the usual questions, “Is she OK?” and the anecdotes about other preemies that are “fine”.

Tonight, the questions and comments did not bother me. I suppose I was prepared to hear them and determined to not let it upset me. Moreover, it helped that the comments came from people who seemed to have genuine concern and empathy. Possibly, I may be better at my new role. Just maybe, time really does heal.

The usual uneasiness was not really there.

Whatever the change in the equation tonight, I feel like I got a piece of me back. I admit, I was nervous when we first arrived. However, socializing was not taxing for the first time in a very long time. It was a pleasant break from the daily appointment grind.

Tomorrow, it is back to the usual. Charlie has two appointments on her schedule.


Intimidated

This evening my husband, Charlie, and I went out to get a bite to eat. In the midst of dinner, my husband asked if I would like to attend a work party tomorrow. It will be the first one since Charlie was born. I could not help but feel intimidated.

A Northern Virginia office party? That was part of our former life. I do not fit in there anymore. My confidence has somewhat disappeared along with many other things due to Charlie’s early arrival.

For those of you unfamiliar with the DC metro area, it is the land of over achievers. Competition is fierce, having the best and newest of anything is important, near perfection is expected, and insanely overly busy schedules are sources of pride.

I am not sure if I ever really fit in when we lived there. But, I managed about somehow. After Charlie came, I felt alien to my surroundings. Maybe, that was a factor in our decision to move away.

The party tomorrow intimidates me on many levels. First, my appearance will be rather lacking. I have not been clothes shopping since prior to Charlie’s birth. Missing out on the third trimester did not spare my hips from spreading. As a result, none of my decent clothes really fit anymore. My hair is shaggy as I attempt to grow it out. Point blank, I kind of look like I live in the mountains. 🙂

Normally, I would not care about such things. However, I feel in situations such as these it marks me as wounded prey.

Additionally, I dread hearing the usual questions and comments. I worry that I will not be able to relate to conversations about day care and top private school waiting lists.  There is the envy and jealousy that nips at me when I hear other parents complain about ordinary parenting stuff. I do not want to have to fight back anger when other parents tell me how they did everything right with the unspoken assumption that I had to have done something wrong to cause a micro preemie birth.

I have only recently dared to tip toe back out in to the world. I am not sure that I am ready for something like this.

Furthermore, I am afraid of embarrassing my husband with my social awkwardness. I am fretful of stirring up painful emotions that have only started to heal. I am anxious that I will realize that I really am as disconnected from the rest of society as I feel at times. I am worried the evening will be an aching reminder of the lost life we planned.

Despite all of my apprehension, I have decided to go. Through all the ROP exams, synagis injections, and ng tube placements, I asked Charlie to be brave. If she can do that, I can attend a mere party. It certainly is not one of those few things in life that are a matter of life and death. At most, it will sting…  but my ego will recover.

Besides, it is time that I take back some of the things I lost to having a premature birth. My confidence is a good place to start. Who knows? I may even have a good time tomorrow evening.

Fingers crossed, here goes nothing…


Charlie’s Playdate

Today, it is going to be a short post.  Charlie had friends over. She loves playing with the “big kids” and learns new skills from them. I enjoy getting to spend time with the other moms. It is really kind of a win-win for us.

The other kids played nicely with Charlie and our dog. So nicely, that they exhausted both of them.

Lately, I have been feeling fatigued from all that former micro preemie life entails.  I am taking advantage of the quiet afternoon ahead of me.  Time to relax and recharge.

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The state of Charlie ever since her friends left.


By The Book: The Story of Charlie

So far, I have been rather vague when referring to Charlie’s birth story. Recently, I have received many questions about it. I think now is a good time to tell the story of Charlie.

My husband and I decided early in our marriage that we were not baby people. We were content being animal people. I provided a long list of reasons why we were not baby people whenever someone broached the subject.

A few years into our marriage, my husband started a new job. It seemed like everyone at his office was having a baby. That was how he caught baby fever.

One evening, he asked me about wanting a baby. I took a deep breath as I prepared to rattle down my standard list of reasons why I did not think I should be a parent. However, things had changed over the past few years. I had grown quite a bit.  I no longer had a  list of anti baby reasons. In fact, I could not think of one good reason. We considered maybe babies were in our future afterall. We decided to try.

I had written off having babies as something for other people. I never really paid attention to the topic of pregnancy. It was completely off of my radar.  When ever a pregnancy show came on TV, I’d change the channel. I had not read anything about pregnancy or child birth. At that point, the only thing I knew about babies was how not to have one.

To educate myself, I bought the Mayo Clinic book on pregnancy. It became my instruction manual. I followed all the advice and suggestions within its pages. I took prenatal vitamins with folic acid, had a physical exam, visited the dentist, and talked to a doctor before I attempted to get pregnant.

After all of that, it took about six months for me to get pregnant. There were plenty of negative pregnancy tests. From the beginning, things were complicated. I discovered I was a few weeks pregnant  the day after I had herniated a disc. We thought my back issues were going to be our biggest obstacle.

My husband and I followed my pregnancy in the book week by week. We liked to learn how much our baby had grown and developed. I remember the week that we read our baby was the size of a grape. I very distinctly remember reading the line, “Preeclampsia occurs in about 6-8% of pregnancies.” I flipped past that section. I thought there was no way it could happen to me. I was sure things would be fine because we followed all the rules and instructions.

I kept up with the prenatal appointments religiously. The nurses at the office thought it was sweet my husband attended each one with me. I followed all of the doctor’s suggestions. However, there was always something “not quite right” with my pregnancy. There were a few odd vitals or lab results. As a precaution, I was tested for pregnancy complications such as gestational diabetes.

At twenty weeks, I started seeing spots occasionally and my blood pressure started to climb. My OB/GYN was slightly concerned.  However, my symptoms were ambiguous. There are many changes in the body during pregnancy. Those symptoms could have been just one of those changes. To be safe, I started having more frequent appointments.

That same week, I had my 20 week ultrasound. Everything appeared normal. But, Charlie was breech and the tech could not see her spine. I was reassured that everything was normal and instructed to return in two weeks so that her spine could be documented.

At twenty two weeks, my husband and I returned for the follow up ultrasound. Charlie remained in the breech position and would not turn. We laughed about how stubborn she was and made jokes. To make her point, she kicked back when a doctor tried to get her to turn. We were scheduled to return in two weeks.

I was at twenty four weeks during my last prenatal appointment. It was early May. I was out of breath and sweating profusely. I felt miserable. My blood pressure had climbed even higher. After the exam, my doctor called my husband and me back into his office. He mentioned preeclampsia as a possibility.

My husband and I kind of shrugged it off. We thought that there was no way that could happen to us. We told ourselves that it was just another scare. We did everything by the book and were convinced everything was going to be fine. We hurried off from that appointment to the third ultrasound.

As we sat in the waiting room before the ultrasound, we joked about whether our stubborn baby had turned. We were excited about getting to see her again. We may have even been a bit cocky as we giggled in the waiting room.

The ultrasound was supposed to take a couple of minutes. They just needed to see her spine. My husband joked with me about our baby while I lay on the table  as the tech worked. We waited to hear that everything was fine and I could get dressed. Instead, the tech asked if I had been losing fluid. She started taking measurements.

A short ultrasound turned into a lengthy ordeal. Our jovial demeanor quickly changed. I became more nervous with each question she asked. She left the room several times to consult with the doctor. I was confused. What was going on?

As the ultrasound concluded, the tech instructed me to get dressed and wait for the perinatalogist. It was the first time that we had formally met the perinatalogist (she had tried to turn Charlie at the previous ultrasound). She explained asymetrical IUGR (growth restriction) and oligohydraminos (low amniotic fluid). I knew that it was not good news. However, I was not sure exactly what it meant. She sent us home with directions to have pretty extensive lab work performed over the next couple days.

That evening we had live jazz dinner plans with some friends. My husband wanted to cancel. I insisted that we go. I wanted one last fun night with my baby. Something in me knew that it was my last free night of pregnancy. I wanted to have a special night with Charlie. I fed her a good meal, surrounded her with the love of good friends, and let her hear live jazz. It was the only thing that I knew to do for her.

After we returned home from our night out, I started getting a headache. I assumed it was from stress and worry. It intensified over the course of the next day. There was nothing that helped it. In addition to the headache, I had horrible indigestion that did not respond to treatment. The day after the last ultrasound, I was supposed to have finished up my blood work and turned in my 24 hour sample. Instead, I found myself in the emergency room.

The doctor on call explained that I had preeclampsia. He continued on to say that I may have to deliver that day if my blood work indicated it. I sobbed. I had never heard of babies being born at 24 weeks. How could this have spiraled out of control so quickly?

Fortunately, I did not have to deliver that day. I was admitted to the high risk perinatal unit. I received a series of beta methasone injections to help develop Charlie’s lungs. The perinatalogist explained that the goal was to keep me pregnant until thirty two weeks. I was ordered strict bed rest in the hospital in order to reach that goal. I was not going home until I had my baby.

Every other day, a blood sample was taken. On the days that blood was not taken, an ultrasound was performed. The medical team watched as the preeclampsia increased in severity. During which, there was a battle with my insurance. My insurance held the opinion that  I should be monitored on an out patient basis (an impossible task). The battle ended when my kidneys started to fail very quickly.

It was on Memorial Day that my OB/GYN walked into my room and announced, “If it is up to me, we deliver today. I still have to consult with the perinatalogist. I am no longer comfortable continuing this pregnancy.” The perinatalogist decided it would be best to wait one more day. Charlie would reach 26 weeks gestation. Her survival odds increased quite a bit that day.

The morning that Charlie turned 26 weeks, the ultrasound had indicated reversed end diastolic flow in the umbilical cord (more was coming out of Charlie than was going in). Similarly as threatening, I had developed HELLP.

Due to preexisting conditions with my spine, the anesthesiologist was unable to successfully start an epidural. She tried five or six excruciating times. The lidocaine was ineffective and I felt each attempt.  I was scared for my baby, felt like I failed  because the epidural would not work, and swore that I was being tortured. There was not enough time to continue trying. It was decided that general anesthesia had to be used.

I missed Charlie’s birth. She weighed 790 g (a little under one pound twelve ounces). My husband got to walk with her isolette as she was transported down to the NICU. He said, to everyone’s surprise, she screamed the entire way.

Afterwards, I was under observation as I received magnesium sulfate. I was confused and delirious. My husband took a picture of Charlie shortly after her birth and showed it to me. That was how I saw Charlie for the first time.

The one thing I do remember is from the evening of her birth. My husband and I discussed Charlie’s birth announcement. We were unsure what to do. We were afraid how we would feel if she did not survive and worried about how painful it would be to answer questions.

We came to the conclusion that Charlie deserved to be loved and celebrated no matter how long she was here with us. Her arrival was announced the same way as it would have been if she would have made it to her full term.

I was not well enough to visit her in the NICU until two days later. That is a story for another time.

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This is the first picture my husband took of Charlie on the day she was born.


Balancing Hope and Reality

Yesterday, I had a meeting with Charlie’s services coordinator. We were readjusting Charlie’s therapy services as suggested by the developmental pediatrician from her latest assessment. While doing so, I had to establish new therapy goals. Despite all of Charlie’s most recent successes, I continue to find  it difficult to establish goals.

There are several reasons:

  • I do not want to jinx the roll Charlie is on. I am afraid to assume because she mastered one skill that the next will come easily. In the past, it seems we were confronted with more complications each time I dared to breathe easy.
  •  If I make the goals too easy the whole meeting is pointless. The process will have to be repeated sooner.
  • With any child, it is difficult to estimate where their skill level will be in six months. The task feels impossible when considering a developmentally delayed baby and there are many questions left unanswered.
  • I am afraid of the heart break that comes when a goal is too lofty. Sometimes goals can serve as reminders of what she can’t do.
  • It is hard to walk the line between hope and reality.  Finding the balance between what I hope for her future and what is our reality is often difficult.

To aid in the process, the services coordinator had a developmental milestone chart handy. I selected a few (corrected) age appropriate goals and signed the paper work. Most likely, I will not think about the goals until the next meeting. Honestly, I stopped following milestone charts and goals quite a while ago.

Instead, I look for the smallest signs of progress each day. For example, one more spoonful of food tolerated, one more movement attempted, one more sound made, or one more ounce gained. This way, I am prevented from feeling overwhelmed, heartbroken, or discouraged.

Through out all this therapy, Charlie and I strive to have fun. This is higher priority than mastering skills or reaching goals. Like everyone else, she only gets to be a kid once. It is true, each time Charlie achieves a new milestone it is amazing.  However, skill set is meaningless if she is miserable. I am a big believer that quality of life is not dependent on one’s ability.

In the end, no matter how many of these services  meetings I attend, I am still flooded by thoughts, emotions, and angst by each one. I wonder if  these meeting stir up as many emotions for other preemie moms. Or is it just me?

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Charlie learned to use her sippy cup this morning. However, she can only really handle it while lying down.


Lucky

Through out our preemie journey, there are comments that people regularly say that make me cringe. Here is my list of the remarks followed by the reasoning behind my displeasure.

1) Do you know how lucky you were?

Immediately after Charlie’s birth, I resented people making me say how lucky we were. At the time, I felt anything but lucky. If I was lucky, I would have carried my baby to term. If I was lucky, I would not have had to wait two days to see my baby and two weeks to hold her. For quite a while, I felt like I had lost. I certainly did not feel lucky.

Even now, I continue to hear the remark from people. I know we were lucky. I saw the people who were not. I am supposed to feel lucky all of the time. The truth is, on some days, I don’t. Those are the days that Charlie will not eat a drop, when another medical issue is discovered, or the days that I am exhausted from the special needs schedule combined with the emotional ups and downs. On the days I feel less than lucky, I feel guilty for not reveling in my good fortune. I know how many parents would love to have my worst day. The guilt is compounded on those days when someone reminds me that I should feel lucky.

2)What if something is wrong with her long term?

Yes, people actually ask this. I heard it more while Charlie was in the NICU and less now. I am not sure what I am supposed to say when people ask this. I am tempted to say, “Well, then we will give her back.”

3)Everything will be okay when she catches up.

Recently, it has become second nature for me to respond that everything IS okay now.

4)Preemies catch up by two.

I left the NICU believing this myth myself. I have come to realize otherwise. Just like every baby is different, every preemie is different. Charlie is a former micro preemie that will be struggling with the ramifications of her extremely premature birth past the age of two. People who remind me that other preemies catch up by two are not helpful in the least. On bad days, it feels like a kick in the gut.

5)Everything happens for a reason.

There was no reason for this. I grow tired of people trying to rationalize it. It is similar to trying to rationalize being dealt a bad hand. Sometimes, it just happens.

Although, I do believe that some good can come from all this.  I am not sure what that is yet. However, whatever good does come from it is not the reason that it happened.

6)What does not kill you makes you stronger.

It did kill the person that I was. It killed many of the relationships that I had. It killed the life that we were living. This experience may not have physically killed me but I am not the person that I was. Besides, I was strong before this. I did not need a tragedy for reinforcement.

I know people generally do not mean ill will when they say these things. Before Charlie’s early arrival, I could not have imagined the horror of the NICU. I suppose people who say these things are merely clueless.

I’m curious to hear from the other preemie moms. What comments make you cringe?


Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

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