More Courage Through Sharing

For the monthly blog carnival, Finding Courage Through Sharing, the carnival host Michelle gave a topic of sharing something that you wish other people understood about your life with a child or children facing medical challenges. Well as a parent to two former premature babies who also happen to have a liver genetic disorder called Alpha-1 Antitrypsin Deficiency, I could go on and on about this subject. Nonetheless, I decided to focus on their former prematurity for this entry.

Prematurity does not end when a baby is discharged from the neonatal intensive care unit (NICU). Preemies do not catch up by the time they are 2 or 3…perhaps in size, but not in the way their brains have been shaped. Prematurity is life long. Premature babies have brains which are wired differently that full term children. This is because they have to deal with sensory input long before their brains are ready to deal with the information they are processing after birth. You may have heard about NICUs that keep the lights down low, encourage a quiet tone of voice, and do such things as placing bags of IV saline next to the babies to make it feel like they are in the womb. While I applaud these efforts, they aren’t the same as a good, old fashioned womb.

There are many sources of misinformation to contend with as a parent of two former preemies such as urban legends, media, or your neighbor down the street. Former preemies are not the same or “just like” their full term counterparts.

Both Grace and Meghan contend with the invisible scars left from prematurity. As their mommy, my job is to help them with learning coping strategies for their preemie battle scars.

Grace’s early birth brought on sensory processing disorder. While some of her sensory seeking behaviors may be very appropriate for her age group, Grace’s go further. How many six year olds do you know that actively still seek out exploring the world using their mouths? Poor dear husband, Charlie, was on the receiving end of a juicy lick to the upper arm the other day. She also is a bit like Dino from the Flintstones. When she runs up to you, she doesn’t slow on her approach. She comes on in ramming speed motion, and has knocked me over several different times. Then, there is the ever-so-fun need to approach you to say something, and then without warning, jump head first into your mother’s or father’s chin. Ouch!


Grace needs a very active sensory diet through which she can subdue her need to touch, feel, and experience things through her senses. My husband should have gotten the “husband of the year” award last year when he brought home a swing set complete with a slide. Grace needs to swing, run, jump, and play like an addict needs his/her next fix. This activity calms and soothes her brain’s needs for sensory input. Yes, I do know that this sounds like an average case of attention deficit disorder, but it is not. Grace can pay attention for hours if she wants.


Meghan’s early birth provided her with general low tone throughout her body. For many years, we were in the “watch and wait” dance to determine if Meghan had a mild case of cerebral palsy. The left side of her body actively “drooped” compared to her right side. Many, many sessions of physical therapy later, her strength has improved. Hallelujah! We were even told that the cerebral palsy issue was resolved. It is another reason for us to rejoice. In any case, I do pay homage to Grace’s contribution to Meghan’s low muscle tone and poor reflexes. Since Grace is so sensory seeking, Meghan now has lightning fast reflexes. She has to. Grace will literally bowl Meghan over otherwise.


Prematurity has consequences that can’t be erased or ignored. Many individuals do not understand this. Now that I’ve said this, I want to make it crystal clear that I do consider my children to be miracles, and I wouldn’t change them. They are my heart. They are my pride and joy. They have boundless love, and I return that to them everyday.

Yes, preemies are medical miracles, but you should not expect any preemie to come away from their early birth unscathed. Prematurity leaves battles scars. Some that can be seen, and many others that are unseen. My daughters have some physical scars, but the majority are unseen scars.

I’ll leave you with a final picture of my beauties.

Flashbacks

Four years ago, I was on full bedrest in our hospital's antepartum unit. It was day 8 of bedrest, and I had just passed my initial goal of making it to May 1st. We already had 2 April birthdays in our family, and I was hoping that there wouldn't be another arrival...an arrival way too soon for my liking.

My blood pressure was still climbing as severe preeclampsia was deepening its hold on me. I spent most of my time in a darkened room because I had had some uncontrolled twitching where my head jerked to my left side. My doctors didn't want me to have visitors except for my DH, and I couldn't have phone calls since the ringing would set me into twitching mode.

I was resolved to stick it out as long as I could, but I'll be honest. I was secretly hoping that the doctors would say, "it's time." It didn't happen that day 3 years ago, and yes, I did know that more time in utero is better. I knew that, but this was my 2nd horrible experience with severe preeclampisa. I was slowly losing my grip on my sanity as I stayed indoors in the dark, and this was day 8. My next goal was to make it to Cinco de Mayo, the 5th of May, and it looked like I might make it.

I had noticed that my baby was moving around less and less so I took it upon myself to poke him/her as much as I could to keep up the stimulation. This was beginning to bother me and the nurses were beginning to record decels on my non-stress tests and BPPs. My amniotic fluid was dropping off, and at the end of May 1st, 2004, I noticed that my vision was suddenly changing. Straight lines appeared squiggly to me, and I thought, "Oh no, it is happening again. This is what happened when I was pregnant with Gracie 2 years ago."

Gosh I was stressed out, but calm all at the same time. It was sort of a calm before the storm of Meghan's birth on May 3rd. Hind sight is always 20 20, but I hope that I did my best to take care of Miss Meghan that day.

Contracting

Short of breath, I huffed my way down the carpeted, hospital hallway. My toes and ankles ached. My husband's flip flops adorned my feet, and the swollen skin on the top of my feet painfully stretched with each step. I felt quite awkward, but the stoic side of me forced a smile to mask my terror.

Charlie snapped my picture. I cringed on the inside. Why in the world of all that is good would I want to remember this day? My body was slowly failing me and my baby. I didn't want to capture the moments of my body's failure. Charlie made small talk with the nurse who was guiding me to my labor and delivery room. He seemed a bit nervous too.

Upon entering the room, the baby made a lumbering slow roll under my rib cage. I thought, "Aha, there you are. I've been waiting for you to move. You had me worried." It had been seven days of kick counts, and time spent on my left side. I was obsessed with the kick counting, and this was the most I had been upright in over a week. Wooziness was washing over me. My blood pressure was 160/110, and I no longer felt the urge to use the bathroom. All of the fluid in my body was slowly leaching out of my blood vessels and into me.

The swelling had reached my brain and was now affecting my vision. Straight lines now appeared wavy, and the light of day was blisteringly painful to my eyes.

Today was the day to be induced. The baby had stopped growing, my blood pressure was rising, and my kidneys were shutting down. The process of bringing my precious cargo into the world was about to commence. Today was the day that I would begin the process of delivering my baby too early. IV lines were placed. Bags of pitocin and magnesium sulfate were hung. I crawled into bed again, and found my left side. A long sigh emerged from within me.

When the mag hit my inside, I immediately felt hot. It was as if someone turned on a blast furnace from the inside. From there, the details all glide together into a commingled yet disjointed experience. The sequence of events eludes me anymore. That, in and of itself, brings immense disappointment within me. This was my first pregnancy. I want to remember what happened, but the disease of severe preeclampsia stole it from me.

The fuzzy memories I have usually center around the pain I was feeling with each pitocin induced contraction or how the wrinkled sheets underneath my body felt as if I was laying on match sticks.

Each year on April 15th, those fuzzy memories contract and contract and contract within me again. I clamor for the relaxing break between the emotional pain, but the contractions keep coming and coming and coming. I take cleansing, slow breaths in hope they will help. The routine of my day and the preparation for my first baby's birth date don't suppress the contracting. Nothing helps except for the end of the day.

Sleep lulls me now. Hopefully, it will be a sleep so deep and sound that I don't dream of those contractions again at least until next year.

Cough, Cough, Cough

As I write this, Meghan is gleefully playing inside our brand new, Santa delivered Disney Princess play hut tent. As she does every day, Meghan is humming her way through her imaginary world of the kitty vets office. Her newest family pet is a Fur Real Friend orange and white kitty. Grace's kitty is also visiting the vets office.

While I'm thoroughly enjoying the sounds of the girls playing together even if there is the occasional whining and whimpering, I don't like one sound I'm hearing over and over again. It is the sound of Meghan's cough, which resembles the sound that a curdled jug of milk might make if you shook it. The "chunk, chunk, chunk, gag, gag, gag" sounds are driving this Alpha mom a little bit crazy.

Once again, I'm standing here wondering how much damage Meghan's former micro-preemie and Alpha-1 deficient lungs are sustaining. Will it be 1% lung function or 2%? Or none? Who knows? Sheesh! I'm hoping and praying that the denial fairy will grace my presence, but today, she isn't coming.

Zithromax is currently battling it out with Meghan's bronchitis infection, and this mommy is willing it to win, win, win quickly.

Hopefully Meghan's health will improve in the new year, but I do know one thing. My Alpha girls are blessed even with their former preemie and Alpha-1 status. We are blessed today, and that is what I need to focus on.

Blessings

I scooped Meghan up in my arms. She was bundled up in her hot pink winter coat with accompanying pink fleece hat with an adorning white and pink pom-pon a top the hat. As her dress shifted upward, she wiggled and readjusted herself a bit as I took each step down the snow covered front path of my home. Her shiny black patent leather shoes hit my left thigh with each step. I wondered if stains were forming as I made may way to the waiting mini-van. Grace tip-toed her way along ahead of me in her "high heel" shoes, which she adores.

As I inhaled, the wintery air startled me. The temperature had dipped below 20 degrees, and a fresh layer of fluffy snow was under my feet.

"Gracie, please be careful. It is slippery today."

"Mommy, what is that stuff again?"

As I huffed along, I answered, "What stuff Grace?"

"The salt stuff mommy. Can we eat it?"

As the salt crunched under my shoes, I answered, "No, it isn't the eating kind of salt Gracie. That salt is much smaller. This salt melts the ice."

As we approached the mini-van, Charlie opened the side door for us. We got in and drove away toward church. As we drove along, Meghan gleefully cheered. "I'm singin' in choich (church) today!"

"Really Meghan?" I responded to play along.

"Yep! I'm gonna sing Jesus, Name Above All Games."

"Oh wow, you're going to make me so proud. Meghan, are you sure the song isn't called really Jesus, Name Above All Names?"

"Nut uh Mommy! Jesus, Name Above All GAMES! Miss Amy told me," she replied emphatically.

"Okay."

We made it to church on time, and the girls sprinted down the main isle like it was Disney World. "Slow down please!" I pleaded. We took a seat about three rows from the front of the church. As is the usual case, all of the rows in front of us were empty. I thought, "Great! We can easily take a video of Meghan from here."

The service trudged along like our feet on the slippery sidewalk. Meghan and Grace wiggled, squirmed, and jiggled their way through the service. Although, I was quite proud that they were both using their "wisper" voices. Finally, it was time for Meghan to sing with her class.

"It's time for you to sing Meghan."

"Yay!" She wiggled past Charlie's knees out of the pew, and ran up to the front of the church. She found a spot next to Caden, but then Miss Amy moved her down to the front row next to Jason.

As they began to sing, tears formed in my eyes. I was overcome with pride for her as she was singing. I couldn't believe that she was up there singing all of the words one-by-large-one.

Jesus * Name Above All Names
Beautiful Savior * Glorious Lord
Emmanuel * God is With Us
Blessed Redeemer * Living Word

There she was among her friends.

There she stood, singing with her whole heart.

Our beautiful living miracle.

Who came into the world into the hands of a surgeon sounding like a mewing kitten.

Who once was a fragile frail skinned micropreemie.

Who couldn't keep her body temperature warm.

Who would forget to breathe.

Who's heart would skip beats.

Who couldn't make enough parts of her blood to stay alive.

Who was transfused three times by a very generous blood donor.

Who turned ashen blue several scary times.

Who scared her Daddy badly when he came to visit her in the NICU as they were bagging her.

Who would cough and sputter as she learned how to suck the milk from a bottle.

Who lay scarily, completely still in her bassinet as a sleep apnea alarm blared next to her.

Who eventually did well enough to leave the NICU after 79 long, long days.

Who ended up in speech, occupational, and physical therapy.

Who trudges along every day like she is queen of the world.

Who taught me that miracles can come in tiny packages.

There she was in all her glory. Singing some very big words making her Mommy tear up with joy. She is a living breathing gift from God, and today, she prooved to me yet again that she was worth every scary step of the way.



She made us all proud, but it made me tear up a little more when Gracie said, "She is singing so pretty Mommy."

"Yes Grace. Meggie is such a big girl now, isn't she?"

Submitted to Wrapped Emotions for The Gift of Everyday

Preeclampsia and Heart Disease Risk

Frankly, this is not new information for me, but when the American Heart Association sent me an email with this newsblast inside, it was a wake up call. Preeclampsia survivors do not have good odds when it comes to risks for heart disease or stroke.

So ladies, may I issue a health challenge? How about we take the new year to create a better version of ourselves? Whether that is living a happier life to improve your mental health or making your physical health important to you, it is up to you.

Newsflash:
Women Who Experience Preeclampsia More Likely To Develop Heart Disease, Study Says

Women who experience preeclampsia -- a condition in which blood pressure increases late in pregnancy -- have a higher risk of developing high blood pressure, heart disease or stroke later in life than women who do not experience the condition, according to a study published in the Nov. 1 edition of BMJ, the Washington Post/Hartford Courant reports. For the study, British researchers analyzed data from 25 studies that involved more than 3.4 million women, 198,252 of whom had preeclampsia during pregnancy and 21,958 of whom had been diagnosed with cardiovascular disease or cancer.

Women who had preeclampsia were four times more likely than women who did not have the condition to develop high blood pressure within 14 years, the study found. The risk of having heart disease or stroke within 10 years nearly doubled for women who had preeclampsia, compared with those who did not have the condition. The study also found that a woman's risk for heart disease increased the earlier during pregnancy she developed preeclampsia. The researchers found that preeclampsia did not increase women's risk for breast cancer or other cancers. The study is available online.

I had Grace 5 1/2 years ago. I guess I only have 4 more years before heart disease or stroke may hit me. Sigh. I'd better get myself to a cardiologist for a work up and figure out how I can live a healthier lifestyle. Life isn't a guarantee, but I know that all of my preeclampsia survivor friends are some of the strongest ladies I know. We can do it ladies. We can!

With much anticipation of a healthier me and you!

Jen

Thank You Mama

Whoever said people don't need validation of our feelings is/was just plain lying.

I want to profoundly thank "Mama" who commented on my Flashbacks post. She said, "Thanks for making me feel normal today. You aren't supposed to "get over" it. You are supposed to learn to live with your "new normal" life, and in that life OB/GYN visits and seeing pregnant women are hard things for you. It seems like you are doing that."

Sometimes it takes a complete stranger to help me. So many of my friends and family, who love me dearly, just don't quite know what to say to me after all this time. They don't understand why preeclampsia was such a profound life changing experience.

I assume they feel sorry for me. Or maybe they don't want to bring up a bad subject? I assume they just don't understand. I assume mostly because few have truly acknowledged what happened to our family. (Thank you to those of you who have acknowledged it.) In typical cursory fashion, most say "Wow, but it's over now." Nope, not really. Or, "why do you keep talking about this?" Or, "Why can't you get over it?"

It will never really be over for me. My life was altered by my experiences. I am forever changed physically and emotionally by preeclampsia.

All that I can do now is accept and embrace my new normal: the Jen who survived severe preeclampsia twice, the Jen who was a NICU mom twice, the Jen who now worries about what might seem to be the most mundane of things when it comes to her kiddos.

Thank you "Mama" for your acknowledgement of my experience. Thank you!

Flashbacks

As I walked across the parking lot, I noticed that there was still salt in the cracks of the asphalt. It had been there since spring when the snow finally melted. A misty wind hit my face, and I squinted to spot my minivan in the lot. October was here, and I was on my way to my annual exam with my OBGYN, Dr. C. As I hopped into the drivers seat, the rain began to pour down.


Photo: www.microsoft.com

I switched on my wipers, and turned on my headlights. The sky was a slate color and fog was coming in waves in front of me. I made the drive with ease down the highway, though.

My van glided off the exit ramp, and I made the turns to arrive at Dr. C's office.

As I turned left into the drive way of the office building, I began to have flashbacks of being there before. I wasn't prepared for it. I wasn't ready to "relive" it in my mind today. A lump formed in my throat, and I stuffed down the urge to cry. I know I'm supposed to be over this by now, but it just isn't going away. I really don't think it ever will.

I scolded myself saying, "No Jen! Not now!"

Every year with my annual exam, I face the past. It is an internal struggle for me. I was supposed to go for my visit in June. They had already sent me 2 reminders, but I just couldn't bring myself to make the appointment until last week. What finally made me call was the story of a woman who died of cancer. That finally clicked with me, and upon calling, they fit me in since I was overdue. (Upon rereading this, I laughed at the prospect of saying I was overdue, that never applied to me when I was pregnant.)

As I left my van, I clutched my umbrella and a white piece of paper I wanted to share with Dr. C. I walked quickly through the parking lot, and rain water was rushing past my feet down an incline toward a drain.

As I opened the door, I inhaled deeply to prepare myself for seeing pregnant women in the waiting room. I noticed a sign that said bone density screenings were on the second floor. Fortunately, this was enough of a distraction for me. My mind wandered considering just what exactly a bone density test entailed. I found myself at the desk, and checked in.

As I turned around to sit down for the wait, I noticed a woman who appeared to be close to 9 months pregnant. Her face seemed puffy, and I noticed her ankles were swollen. I wondered if preeclampsia was in her destiny. She was quickly called back to her exam room, and this was a relief for me. I hate feeling jealous of pregnant women at the same time I'm scared to death for them. To me, pregnancy is an illness and with it comes horrible consequences. It isn't a time for joy and anticipation.

It starts with unbelievable nausea and vomitting, which lasts until to the mid-way point. Then, the headaches start. Shiny silvery flashing lights appear in my vision, and then the "fireballs" appear before my eyes. The incredible swelling comes, which results in stretching, painful skin. My central nervous system gets irritated, and every thing results in insults to my senses. Eventually, my blood pressure creeps up to scary levels, and then my kidneys start to malfunction. The baby stops moving around in a scary silent kind of way, and I start to obsess about counting kicks or movements. I poke and prod my belly to make sure baby is alive in there. I stuff down the fears and focus on the kicks. I'm so swollen that my teeth are tight inside my mouth, and it irritates me that I can feel my pulse in my gums surrounding my molars.

All of this is flashing through my brain. All because I'm facing my past. Twice I suffered from severe preeclampsia. Twice I had premature children. Twice it didn't go well for me. Twice I felt like a failure. Twice I prayed every moment my child was fighting in the isolette. Twice I cursed me and my failure of a body.





There I was in the waiting room hoping like hell that my name would be called soon. I just wanted to get out of there. I wanted it over. Reliving it again was too much for me.

To distract myself, I looked around the room to check the door where the nurse would appear to call me back to my exam room. There she was. It was Erin. I hadn't seen her in a few years.

I thought, "Not you too."

Erin was about seven months pregnant, too.

"Jen, come on back."