Before my baby could be discharged from the NICU, I had an impressive list of tasks I needed to accomplish. Finding a pediatrician sat on the top of the list. The project seemed simple but, honestly, I didn’t know what I was doing… Read More
Before my baby could be discharged from the NICU, I had an impressive list of tasks I needed to accomplish. Finding a pediatrician sat on the top of the list. The project seemed simple but, honestly, I didn’t know what I was doing… Read More
When Charlie made her early arrival, I was angry that it happened to her… and me.
In my grief, I asked questions such as “Why me?” and “Why do I have to be in that minute percentage?” Sometimes, when I’m having a rough day, I continue to ask those questions. The only satisfying line of reasoning that I could provide myself was: I took one for the team.
If someone, out of all the people I know, had to fall in the dreaded miniscule percentage, it’s OK that it was me. We made it through the NICU. Despite my complaining, we are tough enough to handle the therapy and challenges. If it had to be someone among the people I love, it’s OK that it was me. Our lives will go on.
But then… my beloved next door neighbor had to go on bed rest and one of my friends went into preterm labor tonight.
NO! That is not part of the deal! That is not how it is supposed to work!
Tonight, I lost the only answer I had to the “why me” question.
It’s not fair that it happened to me or any other woman. It has to stop.
Tonight, I have found another reason to walk.
I’m tired of seeing my friends suffer.
Charlie attended her first March of Dimes March For Babies last year. Team Charlie Allene is half way to their goal. You can help end premature birth with your support of Team Charlie Allene by clicking here.
Today, my sutures were removed. I’m healing well from the surgery. However, I’m mentally and emotionally spent.
You may have noticed the lack of posts. I’ve been enjoying the down time outdoors.
Unfortunately, it is back to the grind tomorrow. I hope I can keep up.
Charlie’s first time walking in the sand at Lake Anna State Park.
OK, so the blog you are reading did not appear until Charlie’s first birthday. But, Tatum at Ain’t No Roller Coaster inspired me to write my first post, No Apologies, on my tumblr account a year ago today.
I have been posting ever since.
My most popular posts are listed in the sidebar. In this post, I list my picks of the lesser read posts and the reason why they are some of my favorites.
1) Lucky – Almost two years into our journey, I continue to hear these comments regularly and I still feel the same way about them.
2) Crying In The Car Included – Not every relationship with a medical professional is a good match.
3) A Little Bit Of Ordinary – One of the many times Charlie has surprised me for the better.
4) Peer Influence – I learned a valuable lesson as Charlie learned to eat!
5) Skylar – Sometimes there are no good answers.
6) Three Legged Dog – A glimpse into my struggle with envy and jealousy.
7) Pride – I will always remember the first time Charlie felt rain.
8) In Case We Become A Micro Preemie Anecdote – There are some things I want told with our story.
Despite my fear and anxiety, my surgery went well yesterday. Actually, the pain over the past few months was worse than the surgery. Currently, I am resting so I don’t reopen my wounds or restart any bleeding.
Today’s post is a guest post (written before my surgery) that can be found on JAM Sessions: Lessons Learned Through A Micro-Preemie. The post Seven Sensory Sensations is part of the blog’s brilliant Surviving Isolation series.
Charlie has been teething something fierce for the past week or so. I hope this is the reason I haven’t heard a word other than “Hi” or “Bye” out of Charlie the last few days. She doesn’t even say “Ma ma” anymore. She has reverted back to using grunts and screams to communicate.
My concerns over this regression had to be hidden as we waited in line at the crowded grocery store this afternoon. Charlie smiled, waved, and blew kisses to the people around her. One lady asked, “Does she talk yet?” I adverted my gaze, shuffled my feet, and with a sheepish smile said, “No, not yet.” In reality, I wanted to snap, “Do you hear her talking!?!”
It didn’t end there. Another lady said, “Pretty soon, you will wish she didn’t talk.” I groaned silently to myself. But, politely smiled and kept my mouth shut.
I detest those type of comments. It reinforces how we are strangers to the “typical” baby/toddler experience. People frequently make remarks about how I should enjoy that she can’t run around, be thankful she doesn’t talk, or that I should remember babies grow up so fast. None, of which, are true for us.
We continue to exist in another world. A world that they can not possibly understand. And I hate that.
Maybe today, I am more susceptible to those negative emotions due to the stress I’m feeling. Other than what’s happening with Charlie, my upcoming surgery is also weighing on me. Logically, I’m aware that things will be fine with my surgery. Emotionally, it is not as easy.
I worry what will happen to Charlie and her medical care in the tiny chance something bad happens to me. Additionally, I have a Pavlovian kind of nervousness and fear. Mostly, because the four or five failed epidural attempts felt like torture before my last surgery (my C-section). I’m not looking forward to getting back up on the table.
Today, I’m a little short and snippy. I’m scared. I don’t know what to do about it other than take a deep breath and get through it.
One of my favorite pictures of Charlie swinging.
I have been nominated by Love, Support, Educate, Advocate, Accept… for the Sunshine Award. I would like to thank Julie for the honor. I am always flattered to receive recognition from a fellow blogger.
“Sunshine, as the name suggests, is an award for bloggers whose blogs are bright and full of life.”
The rules for accepting the Sunshine Award are:
So without further delay…
1) I love chemistry and music but do not want a career in either. They are hobbies that, in one way or another, make an appearance in my life daily.
2) I read many travel and geography books. I am incredibly curious about foreign cultures, languages, and linguistics.
3) I am socially awkward. I read more etiquette books than the average person to build my confidence for social situations. Nevertheless, I usually end up saying or doing something weird.
4) My interest in a social work career has been reinforced by having a micro preemie. As tragic as it was, I found it to be an excellent and unique learning experience to be placed in the role of a client.
5) As a parent, I have no idea what I’m doing. I play it by ear and figure it out or make it up as I go.
6) I avoid people who think they know everything, experience has shown they generally know the least.
7) College was more than a means to a degree for me. I gained self confidence, discovered a love of learning, learned self discipline, tried jobs or classes outside of my comfort zone, and accomplished things I wasn’t sure I could do.
8) Volunteer work, giving to others, cheering for the underdog, and helping others have always been important values to me.
9) My hope for Charlie is that she finds a sense of belonging and she is happy… whatever that means to her.
10) I am not brave. Most of the time, I’m scared of or intimidated by many things in my life. I close my eyes, take a deep breath, and go through with whatever it is.
11) I would much rather know what is than wonder, “What if…” .
The ten blogs I nominate are:
Happy reading everyone! I hope you find a new blog to enjoy and follow.
My favorite picture of Charlie’s two minute snow play experience. An example of how not everything we try works out.
I couldn’t sleep last night so I sought speech therapy options via the internet. When I woke up this morning, I decided today was the day I was going to find the recommended speech therapy for Charlie. The task ended up being easier than I anticipated.
To begin, I called Charlie’s insurance provider. I wanted to understand what speech therapy services are covered, how many sessions are covered, what is the co pay, who are the in network providers, and what language the prescription needed to have to ensure coverage.
Once supplied with the information, I started to problem solve:
I called the university to inquire about the program. Jackpot! They offer speech therapy and it was at a reasonable cost with a possible fee reduction option. Additionally, forms are provided for possible insurance reimbursement.
The university program looks like our best option. I will learn more as we move further along the intake process.
So far, I have received the necessary intake forms for the program via email and the developmental pediatrician is faxing the needed prescription. Our next step is to return the forms and schedule an appointment. The first appointment will assess Charlie’s speech, language, and hearing.
The process didn’t involve the predicted fight that I was prepared for. Nevertheless, I felt pretty victorious afterwards. My hope is that this post will help other parents generate ideas for securing services for their child.
Charlie has a follow up with her developmental pediatrician tomorrow. I call it the special needs decathlon. She will be evaluated by the clinic’s physical therapist, occupational therapist, and speech therapist before seeing the developmental pediatrician. Afterwards, casts will be made to create her new orthotics.
I’m generally a little restless before these appointments. I don’t fret the two hour drive to the clinic because it is mostly enjoyable. Charlie and I sing together through a good portion of it and she sleeps on the return trip.
I have a decent idea of where Charlie is skill wise. I don’t expect any new discoveries. However, that is it: I am afraid of being surprised with another discovery.
We have been working so diligently on the known issues that adding another one would be a little demoralizing. It would be like struggling the entire way through second semester P Chem, unexpectedly passing, and having a prof say, “Oh, by the way, you are also supposed to be working on advanced inorganic chem.”
Yep, that kind of kick in the gut.
If Charlie has another issue that needs addressing, there is really not much I can do about it other than rise to the challenge. Fingers crossed that we have a good appointment tomorrow. Ready or not, here it comes…
I checked another item off of the to do list yesterday. Charlie went on her first train trip. Despite all of the preparation, I was a bit nervous. However, things worked out as they generally do.
We boarded the train early in the morning. I selected a seat in the very front of a car so as few people as possible would be disturbed if Charlie acted up. The umbrella stroller clanked as I tossed it in the overhead compartment and we sat down. I held my breath and hoped the seat next to me would be occupied by a baby friendly fellow passenger. Relief washed over me when another family with a child filled in the surrounding seats.
Initially, I was concerned about Charlie’s sensory issues. Fortunately, I had no more difficulty than any other parent traveling with a small child. Overall, Charlie seemed to enjoy the ride. Admittedly, the cheese and crackers from the Cafe Car kept her entertained for the majority of the way.
Once we arrived in Philadelphia, I worked to move quickly so we would not hold up the bustle of the other passengers. We were traveling light, but I looked like a pack mule as we headed up the stairs into the station. A friendly voice offered, “Do you need a hand?” It came from a man dressed neatly in a business suit. He smiled and said, “I remember those days.” I declined his offer but the acknowledgement did boost my morale.
We had a lovely day in Philadelphia. Before I knew it, it was time to come home.
By that time of day, Charlie was tired and cranky. She fussed while we stood in line for the platform. Concerned, I said, “Don’t worry, we won’t sit near any of you on the train.” to the people in line with us. They laughed and made incredibly kind remarks such as, “It won’t bother me.” or the hopeful “Maybe, she will fall asleep once the train gets going.”
On the train, Charlie munched silently on a few crackers before falling in to a deep sleep. With Charlie asleep in my lap, I glanced across the aisle and saw another passenger attempting to watch the opening ceremony of the Olympics. It reminded of the the night I watched the opening ceremony of the summer Olympics with Charlie during her third month in the NICU. That was almost two years ago but it feels like it was much longer ago.
Our station was the last stop for the train that evening. Charlie and I stayed seated as we let the other passengers file out ahead of us. A considerate man retrieved the stroller from the overhead compartment without being asked. One of the passengers from Philly leaned into to Charlie and said, “You did so well!” as she walked passed. I breathed a sigh of relief. We had made it.
There are many things I enjoy while traveling by train. I like the scenery, the legroom, the sleeper car option, the dining car, the ability to move around as needed, the wifi, and the power outlets at each seat. However, I think my favorite thing about this journey was the people. Ultimately, Charlie’s first train journey was a success because of them.
Most of the time, I dread Charlie’s doctor appointments. Today, I woke up and felt kind of excited to take Charlie to the pediatrician for a well visit. For once, there were no problems that needed to be solved, nothing that needed to be diagnosed, and not a reason to be referred to another specialist. It was an actual well visit.
Charlie’s progress over the past month has been incredible. It generally goes through ebbs and flows, but the past month or so has been a flood.
Instead of the usual stroller ride, Charlie held my hand as she walked into the pediatrician’s office this morning. During the weigh in, the nurse remarked how much Charlie had grown since she last saw her. The pediatrician was delighted to see Charlie walk, blow kisses, and say, “Ma ma”. Charlie loved the attention and flirted shamelessly with her admirers.
Charlie still has several things to work on (such as eating, speech, and new AFOs) but I’m awestruck. A year ago, I was enthusiastically sharing pictures on Facebook because Charlie’s hands had finally opened (after months of infant massage) and she was strong enough to hold a toy.
I have similar feelings today as I did when Charlie was transferred to a lower level NICU. I knew she would go home from the NICU at some point but I didn’t dare hope that it would be soon. The transfer was that little bit of reinforcement that she would not be in the hospital forever.
Today, I feel like our layover in Holland won’t last forever. Our flight to Italy just appeared on the airport flight status board. We won’t get there by age two, but it will happen at some point.
I met Charlie two days following her birth. The two days prior to our reunion are a blur in my memory. I remember being confused and disoriented. The vein my PCA pump ran into blew, I had an allergic reaction to the tape on my IV sites, the magnesium sulfate felt like a punishment for Charlie’s early arrival, and my back ached from the numerous failed epidural attempts. After everything settled down, I was deemed well enough to see my baby.
My wheel chair ride down to the NICU is a hazy memory. My husband expertly rolled my chair through a maze of hallways and elevators. Once we reached the NICU, I had to fill out a questionnaire and scrub up for the first of thousands of times. Even now, the smell of the hospital soap reminds me of that first hand washing. Finally, I was permitted to pass through the heavy doors into the NICU.
My husband pushed my chair past one isolette after another. With the constant sound of alarms, rhythmic hum of the respirators, and rows of glowing isolettes, the NICU did not look or feel like a nursery. Instead, it appeared as something out of a sci-fi story. My wheel chair ride ended beside a glowing isolette. Within it, Charlie slumbered.
I rose from my wheel chair, gingerly lifted the blanket draped over her isolette, and anxiously peered in. Through all the tubes and wires, I could see she was beautiful and perfect. Gently, I placed both of my hands on her isolette. It was the closest I could come to holding her. We were not allowed to touch her yet. Afterwards, I slumped into my wheel chair, placed my head in my hands, and sobbed.
I was overcome and inconsolable. That was not how things were supposed to be. I was heartbroken at the loss of our expected birth experience. I was grief stricken that my baby now had to fight for survival. I ached to hold her or touch her. I was frightened for my baby. I was angry at the numerous strangers in the room for being present for a very private moment. I felt robbed of the pure excitement and joy that I expected to feel when meeting my baby. I was devastated.
A nurse walked over and explained how Charlie was doing. My thoughts were distant. I did not really hear or understand anything she said. However, the moment was important. It was my introduction to the nurse that was among a handful of people that were key to my NICU survival.
Charlie’s first few weeks are foggy. During that time, I did a great deal of crying and functioned on auto pilot. Several days later, I was discharged from the hospital. I decided that I was going to do the only thing I could do for Charlie… be with her. I wanted her to know that she did not have to battle on her own. Nor, did I want her to die alone.
Every day, I held my breath and watched as Charlie grew. Luckily, I had an unexpected cast of characters (such as the nurse) that provided much needed emotional support.
I find it remarkable that I had lived my life without knowing what it meant to be overwhelmed with emotion until the day I first met Charlie. The sights, sounds, and smells from the NICU often act as a reminder.
I took this picture the first time I saw Charlie. She weighed 708 grams.
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.
This is the first picture my husband took of Charlie on the day she was born.