Tag Archives: premie

Alone Time For Mom Before A Busy Week

A short post tonight, I’m trying to catch up with housework after a very busy weekend.

This weekend, I was lucky enough to get away for a couple of nights. Before Charlie was born, I volunteered with a non partisan voter registration organization. The past two nights, I returned to my old familiar spot of registering voters at live music shows.

I had forgotten how much fun it was.

Obviously, the break from the demands of my usual world was nice.  But, I enjoyed working with the other volunteers and the adventures each night offered as well. A mental note has been made to get out and volunteer more with the group in the future.

In other news, tomorrow is Charlie’s first day of her new speech therapy program. I am not sure what to expect but I am hopeful.

This past weekend was a nice respite before a busy week.

The weather was nice this weekend. Charlie got to play outside without a coat.

The weather was nice this weekend. Charlie got to play outside without a coat.


Happy St. Patrick’s Day: Then and Now

St. Patrick’s Day was a pretty big day for us last year. Charlie had officially been released from her six month quarantine. It was the first time we took her to a public place with other people present.  Here is a picture from last year’s celebration:

St. Patrick's Day

This year, we are snowed in with a foot of freshly fallen snow. Charlie did not let that stop her fun. She decided to celebrate by making a bold fashion choice.

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I hope everyone has a safe and fun St. Patrick’s Day.


Happy Bloggerversary To Me!

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.

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Surgery And A Guest Post

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.

Enjoy!

 


Thin Skinned and Short Tempered

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.

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One of my favorite pictures of Charlie swinging.


Sunshine On A Snow Day

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:

  • Thank the person who nominated you and link back to their blog
  • List 11 facts about YOU!
  • Nominate 10 other blogs to receive the award
  • Announce the nominations to the nominee

So without further delay…

About me:

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:

1) Laughing, Living, Weeping

2) Normal Is The New “Boring” 

3) Undiagnosed But We’re Okay With That

4) MOM – Not Otherwise Specified

5) Hydrobabies

6) Life On The Moon

7) JAM Sessions: Lessons Learned Through A Micro Preemie

8) Premmeditations: Reflections On Premie Parenting

9) Child Life Mommy

10) Raising 5 Kids With Disabilities And Remaining Sane

Happy reading everyone! I hope you find a new blog to enjoy and follow.

unhappyinsnow_edited My favorite picture of Charlie’s two minute snow play experience. An example of how not everything we try works out.


10 Activities I Use To Occupy My Preemie Toddler When The Weather Is Lousy

Today was one of those days. The weather was of the worst kind. The roads were icy enough to prevent us from going anywhere and there wasn’t enough snow to play in. What is a parent to do with an active toddler on days such as today? Unfortunately, this isn’t the first time it has happened. This time, I was ready. Here are a few of the activities I was armed with:

1) Kid’s meal toy bin: Charlie has yet to realize that most kids meal come with a cheap toy. Instead of giving it to her immediately, I keep the toys in a bin in the closet. On days like today, Charlie loves to dig through the bin and explore the “new” toys.

2) Finger painting with food: This is a sensory play idea from her therapist. While seated in her high chair (to contain the mess as much as possible), Charlie is presented with yogurt, ketchup, apple sauce, and whatever food “paint” that is handy. She enjoys spreading the condiments around the tray and will sometimes taste them.

3) Playing with dough: These  recipes are kid safe and simple to make. I usually have the items around to make one of the three recipes.

4) Play with boxes and packaging: We use online ordering often enough that we usually have a box or two waiting to be recycled. If the box is big enough, I show Charlie that she can climb in and out of it or make a tunnel to crawl through. For the smaller boxes, Charlie likes to put small toys in and take them out. The bubble wrap and other packaging that is frequently included with the boxes are added fun accessories.

5) Musical Accompaniment: Charlie has a toddler musical instrument set. But, her favorite is the simplest and cheapest to make. When beans, rice, cereal, or whatever is on hand is added to a closed container it makes a drum and a shaker. I construct a play list of different types of music. Charlie likes to shake the instrument, sing, or dance to the different kinds of music. 

6) Explore Different Textures: I fill a clothes basket with different textured fabrics and items. At first, I let Charlie explore it on her own. Later, I sort through it with her. We discover different textures as I ask, “How does it feel? Is it rough? Is it soft? Is it scratchy?” Often, we end up playing peek a boo with the different fabrics.

7) The Straw Game: This is another idea that came from Charlie’s therapist. In order to work on Charlie’s oral motor skills, I present thicker substances to her with a straw. She likes to suck up apple sauce, jello, yogurt, pudding, and other thicker liquids.

8) New Story: I find a book that Charlie hasn’t read yet or hasn’t read in a while (library books are great for this). I present it to Charlie and let her look through it first (if she is interested). Afterwards, we read it together.

9) Bowling: I use plastic soda bottles out of the recycling bin and put a little rice or beans in the bottom. Charlie likes to knock them over. However, I’m trying to teach her to use a ball to do so.

10) Indoor Bubbles: Depending on the indoor interior, this may or may not be a good idea. I blow bubbles with Charlie. She works on blowing (I still blow the majority of the bubbles), she pops the bubbles in the air, or steps on them if they reach the floor.

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Charlie finger painted today with hummus, yogurt, and strawberry apple sauce.


Another One Of Those Moments

I’ve been waiting for the right moment to take Charlie to Chuck E Cheese. The place is a bit much for my sensory threshold, so I was concerned that it would be sensory overload for Charlie. On the other hand, I knew she would love the singing mouse, the pizza, and play. I decided to take Charlie while everyone else was watching the Super Bowl.

Despite the nearly empty restaurant, Charlie was a bit overwhelmed when we first arrived. She clung to me, munched on pizza, and watched the few other kids that were there. As she picked apart her second piece, the mechanical mouse started to sing. She was mesmerized. After he stopped moving and singing, Charlie meowed at him.

After the show ended, she was feeling brave enough to play a few games (with my help) and try a few rides. The motor cycle that rocked and vibrated was too much for her. She wanted to get off of it immediately. The seat on the merry go round was her favorite. 1779194_10101540988199169_1473971453_n_edited

We were almost out of tokens when a staff member and someone in costume called for the kids to follow. Charlie gestured and made that weird glottal sound she makes when she wants something. I carried her and we followed the string of kids.

The parade of kids came to a stop in front of the mechanical mouse. The kids formed a semi circle and prepared to sing Head, Shoulders, Knees, and Toes. I knelt behind Charlie and supported her at the hips as she stood.

Charlie can take a few steps at a time but she falls A LOT. She is unsteadier than usual because she is in between AFOs.

The kids started to sing and gesture while I steadied Charlie. Charlie “sang” her own version of the song complete with her own gestures. She wore a huge smile and kept turning around to look at me as if to say “Look! I’m doing it!” It was one of those moments that I had to fight back tears. Charlie finished the song with an enthusiastic “Yay!” I lost the fight and a couple tears trickled down my face but were hidden by the dark.

We finished the evening with sensory play involving cotton candy. Charlie refused to touch the cotton candy and did not want it near her mouth. The evening was far from perfect but I don’t think I could have had a better time. I hope Charlie feels the same.


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.


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