I'm a Preemie

"Meghan! Meghan! Earth to Meghan!" I said impatiently.

"Hey Megsy Rose! Are you listening to me? Can you please get your pajamas on?" I sighed as more attempts at saying her name in different cadences and tones met no response.

Silence from Meghan ensued as she continued scanning the bathroom with intense interest. I was standing right next to her. Her towel was wrapped around her as she peeked behind the closed shower curtain. I could feel my impatience growing.

In my thoughts, I heard, "Oh come on kid! Really? Seriously? You can't hear me at all. Really? Good grief!"

And then my thoughts leaped from my mouth, "Gosh, you have such A.D.D."

Of course, she suddenly heard that.

"I have what Momma?"

"Whoops," I thought.

"Um. Oh. Well, ADD stands for attention deficit disorder. It means you have trouble paying attention," I stammered.

And then my former micro-preemie, smart-as-a-whip, daughter said, "I'm a preemie, Mom."

As I searched my thoughts for a response, I couldn't believe that Meghan had grown up enough to deduce that former prematurity and ADD might go together. "Well, Megs, you used to be a preemie. If you were still a preemie, you would be living in a "box" in the hospital still growing. You are a big six-year old girl now. You don't live in a box (isolette)."

"Why was I in the box? I don't remember the box," she inquired.

"Well Meghan, when you were born 13 weeks early, you body wasn't quite ready to be born yet. The box kept you warm and safe. Your body still had a lot of growing to do, and the box was kind of like my tummy was for you. One thing that wasn't done growing yet was your lungs. We had to wait for your lungs to grow before we could bring you home." As I answered, I helped her into her pajamas to expedite the process.

"Oh. OK. Why did I come out early?"

"Remember that I was very sick. I had preeclampsia, which is kind of like having an allergy to having a baby in your tummy."

"Did you have a runny nose and sneeze, Mom?"

Her question elicited a smile across my face. "No, not an allergy like that. My blood went way too fast in my body (high blood pressure), and then my kidneys began to shut down."

I took my index finger and pointed to her lower back. "This is where you have kidneys. There are two in your body, and they clean the bad stuff out of your blood. That bad stuff gets kicked out through your pee. Anyway, when I had you in my tummy, my kidneys didn't want to work anymore. If my kidneys stopped working, I would have gotten too sick to keep you alive. So, the smart doctors said they would take you out of my tummy using surgery so my preeclampsia would go away."

"Oh, where did I come out again?"

As I pointed to my lower stomach, I said, "Right here."

"Where did Grace come out?" Her older sister was born by c-section due to preeclampsia as well, but just six weeks early.

"In the same spot, Megs."

"What did I do when I came out?"

"Well, I was having a surgery but your daddy told me that you mewed like a kitten. That was before they put the tube in your lungs to help you breathe," I responded.

"But I could breathe when I was born, right?"

"Yes, you could, but you were too little. You got so tired from breathing that they helped you with the breathing machine until your lungs grew stronger."

"Oh," she dryly remarked with what seemed to be understanding.

"Hey Mom! Do you think we could go visit where I lived in the box?"

"Sure, Megsy. We could do that."

"Yeah, I wanna see where I used to live. Do all the preemies have 'tension order too?"

"I don't know if they all have attention deficit disorder, but I remember your preemie doctor told us that it is really common for babies born 13 weeks early. You aren't the only one. Momma had ADD growing up, and Uncle Tim, too. People born not-too-soon can have ADD, too. I was born 1 week late."

"Oh."

"Just remember that having problems with paying attention does not mean you can't pay attention, Meghan. Momma learned to do it. Uncle Tim learned how as well. You just need to try to listen. Remember to listen. As you grow up, it will be easier."

"I know, Mom. You always tell me that kids are still learning how to be good people. I'm learning. I just need to practice."

God, I love that kid. Amazing...

They're Here

It usually begins this time of year.

They come.

They come without me inviting them to my life.

They come like perfectly timed bombs.

They come to remind me.

They come to be remembered.

They bring the rawest guilt and grief even nearly 8 years since their first visit.

They find a way to unsettle me...unnerve me.

They are not wanted.

They are flashbacks of my pregnancies spiraling down the rabbit hole.

Severe preeclampsia robbed me of a normal pregnancy experience, whatever the hell that is.

It nearly claimed my life twice.

It nearly claimed the lives of my children.

It created two premature babies with lifelong side effects.

It changed my relationships with people.

It caused me post traumatic stress.

It is an evil beast I'd like to slay.

It was not fair.

It was not my fault.

It just happens to 12% of all pregnant women.

It happened to me.

It is unwanted here.

Yet, it reminds me of my precious gifts in Grace Ann and Meghan Rose.

So, I'll let severe preeclampsia and NICU flashbacks stay for a few days, but then they can "hit the bricks."

I'm ready to celebrate Grace and Meghan instead.

My Worlds Collide

What do you get when you cross an Alpha-1 MZ gene carrier/hypertensive momma with a developing baby who has ZZ Alpha-1?

ANSWER: SEVERE PREECLAMPSIA

Some amazing research is going on at Yale by Dr. Irina Buhimschi. She has identified that misfolded Alpha-1 protein shows up in the urine of preeclampsia-bound expectant mothers.

I've found 2 articles so far:

Key To Pre-eclampsia May Be Found In Misfolded Proteins In Urine http://www.sciencedaily.com/releases/2009/01/090130182911.htm

Preeclampsia May Stem From Malformed Proteins
Yale researchers say discovery could lead to earlier diagnosis, treatment http://www.healthday.com/Article.asp?AID=623632

Post Traumatic Stress

I wrote an entry on the Preeclampsia Survivors blog based on an interaction I had with a coworker whose wife developed severe preeclampsia. I thought I'd cross-post it here:

http://preeclampsiasurvivors.blogspot.com/2008/09/post-traumatic-stress.html

Alright then...

When my daughter Grace was born six weeks early and underweight, she was quickly placed in our hospital's neonatal intensive care unit (NICU). At that time, I was quite ill with the effects of severe preeclampsia, and couldn't be with Grace in the NICU.

My husband, Charlie, spent much of his time being with me or Gracie in the NICU. Honestly, I have just a few memories of the first weeks of Grace's life. A medication called magnesium sulfate was dripping into my body through an IV placed in my hand. I was tired, hot, swollen, and dealing with the beginnings of post traumatic stress. At some points, Gracie was the furthest from my mind. I was trying desperately not to have seizure, and focused on forgetting that she was fighting for her life in the NICU. Whenever I became stressed, my blood pressure would spike to extreme highs in the 220/180 range and my whole body would experience shuttering and shaking. Uncontrollable actions would randomly happen to me because I had cerebral swelling and high blood pressure. I had to forget the guilt I had about my baby, and focus on me. Today as I sit here writing this, tears pool as I think about what I had to endure to survive for my precious baby girl.

As I said earlier, I don't have very many memories of that time frame, but there are two instances that stand out. These memories revolve around Grace's neonatologist, John who ended all of his conversations with: "Alright then, any questions?"

Tiny blood vessels had burst within my retinas from the high BP, and it appeared as though I had spilled black coffee across my entire field of vision. I was afraid my vision would never return to normal, and honestly, I was having trouble getting the medical professionals to acknowledge this very rare complication of severe preeclampsia. I had just finished describing my symptoms to the nurse who was caring for me post c-section.

Suddenly, a blurry dark figure of a man appeared at the foot of my bed in light blue scrubs. He wore a blue scrub cap as well, and bright red and gray wiry hairs escaped from underneath his hat. Large gold rimmed glasses adorned his face, which made his eyes appear even larger with the magnification.

"Hi, I'm Dr. G. I'm caring for your baby Grace." His voice was very distinct, and it seemed that he enunciated all of his syllables very carefully. I wondered if he was British at first, but couldn't place his accent to anywhere specific.

I responded meekly, "Oh. Hello."

"She is stable right now, but I have a bit of news that most mommies don't like to hear."

My heart skipped a beat and my head throbbed even harder than before. I frantically searched my thoughts for a reasonable excuse for an introduction like that. Charlie interrupted and said, "Is she okay?"

He quickly understood our fear, and said, "Oh. I'm sorry. Um, she is doing well, but I had to give her a hair cut so I could place her central line in her scalp. I put it on the right side of her head. She has very tiny veins, and I could only find a good one in her head. I have something for your memory book though."

He held up a tiny plastic bag which held a lock of Grace's hair. Charlie received the bag, and quickly gave it to me. I remember feeling relieved that it was nothing more than a hair cut, but wondered how she would look with a shaved "sidewall" on the right side of her head. I put the clear plastic bag close to my right eye and tried to study the hair color.

"Oh, she has dark brown hair. I never saw her hair color in the OR because she had a hat on when I got my glimpse." I searched my thoughts and suddenly thought of a baby picture I'd seen of Charlie as a newborn. He had a head of dark brown hair. Plus, my mom was a brunette too. My thoughts were almost clinical. I approached the idea of Grace in factual terms and emotions didn't come.

Dr. John responded, "She is a beautiful baby, and you should be very proud. You get yourself better, and then come visit her when you feel better. Alright then, any questions for me?"

My memory begins to fade at that point but what I do remember is his compassion and genuine concern for me and my baby. This may sound trite, but I think I remember a twinkle in his eye, too. His demeanor was happy and comfortable. His nonchalant approach actually helped me to relax and know that it was okay to get better so I could care for Gracie later.

A little over two weeks later, Dr. John greeted us by Grace's bedside in the NICU. I had been discharged from the hospital, and I was feeling a bit more like myself again. The 40 pounds of swelling was fading, and my blood pressure had begun dropping. I still felt unsteady about my experience and was quite nervous with Gracie. To me, she was incredibly tiny, and at the time, I hadn't quite bonded with her. There were so many wires, tubes, and barriers to her. I secretly wondered if I'd feel like I was her mommy. You know that kind of mommy love that leaps from within in your heart and seeps out of every pore of your existence. It just wasn't there yet, and I had an overwhelming need to feel that. I couldn't figure out what was wrong with me.

"Hello. I wanted to talk with you about Grace. She seems to have a bit of a problem with her gall bladder. Her jaundice isn't improving in the way we'd like it to improve by this age. I called a specialist to come in and figure out what is going on. She is from Children's Hospital and she'll be here tomorrow to examine Grace."

"What kind of doctor is she?" I asked.

"She is a pediatric gastroenterologist. She takes care of livers and digestive tracts."

Charlie responded, "Oh. Okay. I suppose we'll have to wait and see what happens."

I remember studying Dr. John's face through my poor excuse for sight, but rather it was the concern in his voice that caught my attention. Charlie seemed to respond to his news with concern too, and then suddenly, it was like my emotions had broken through a protective levee. My thoughts were suddenly frantic: What's wrong with her? Will she be okay? This can't be good. I can't loose my baby. It was so much work to get her here. I'm afraid. I was suddenly filled with mommy love for her. The reason we named her Grace in the delivery room was that we thought God had delivered his grace to us in the form of our daughter. My squelched love leaped out of my heart and could no longer be contained. Somehow I felt as if God was speaking to me through Dr. John, and I will forever be indebited to him for reminding me to let my love for Gracie come to the surface.

As I reflect on those brief, memorable interludes with Dr. John, I can now see yet another miracle of his careful watch of Grace in the NICU. As a result of the GI specialist coming to examine Grace, we were quickly informed she had a genetic disorder of the liver called Alpha-1 Antitrypsin Deficiency. While this was a devastating blow to us as parents, it really was a miracle for us to know this fact about Grace. The majority of children with Alpha-1 are undiagnosed. A subtle symptom of an elevated direct bilirubin past the age of two weeks is what tipped off Dr. John there might be an issue with Grace's liver.

With the knowledge we have about Grace's genetic disorder, we were then able to arm ourselves with information about Alpha-1. Because the alpha-1 antitrypsin protein is not very effective and can't often times make its way out of her liver, it is not circulating in her bloodstream. Alpha-1 has a primary purpose of being an anti-inflammatory agent within the body. Its largest job is to enter the lungs to provide a counterbalance to neutrophil elastase, which eats up bad things which we breathe in on a daily basis. Because Grace does not have enough Alpha-1, her lungs are constantly being damaged by things she breathes in such as bacteria, viruses, particulates, fumes, perfumes, and dust.

Dr. John's curiosity set something wonderful into motion. We now have knowledge and can protect Grace from some of those harmful effects of Alpha-1. We keep her away from all cigarette smoke, candles, cleaners, ozone on Ozone Action Days, and swimming pool chlorine. It helps to know that these everyday little things can save small amounts of lung tissue over time. I know that only God will control Grace's Alpha-1 outcome, but it helps to know that we won't be inadvertently making bad choices for Grace along the way. We have little to no control over how her liver functions, but we can help her breathe freely along the way. The average Alpha lives to the age of 56, but I hope and pray that she'll live a long happy life.

So I pay tribute to Grace's neonatologist. He may not know how he influenced our lives, but I will forever be in his debt. Thank goodness for wonderful physicians like you, Dr. John. Your ability to notice subtle clues is what helped me to know I could get better after preeclampsia, to know that I did have love for Grace, and to know that she has Alpha-1. I will have reverence tinged with awe in regard to you for the rest of my life.

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.

Long Overdue

Michelle at In the Life of a Child awarded me with the Daily Dose award. :) The award is supposed to be passed along to “All the blogs that you’ve discovered that you can’t possibly live without. They make you laugh, cry, think and feel connected every time you read a post. They give you a thrill as you see them loading into your browser and you get an equally satisfying thrill when you see that they have commented on your blog.” Michelle, you have become a true cyberfriend, and I thank you for stumbling upon my blog. I applaud and appreciate your eloquence and ability to remind me that life changing medical issues still qualify as a life.

Michelle also granted me with these awards, and each one made me feel special. I've never received a blog award until Michelle gave me several. They were uplifting, and I hope they are for others as well.














So since the point of a blog award is to pass it along, here I go:

These ladies are my preeclampsia survivor friends, and I think I would have gone a little crazy had I not had my PE survivor community to hold me up in dark days. You ladies deserve all of these awards. Please pass them on!

Denise at A Woman With Hobbit Feet

Amy at Living With Grace

Mama at Mama Really Needs a Nap

Christie at The Mis-Adventures of Captain Poopy

Sabrina at PE Mommy

Lori at Blue Eyed Bunch

Cara at The Stevens Family

4onfaith at Belphia

Kate at Mother Words: Mothers Who Write

There is one more person I want to acknowledge here, but she is not a blogger. I visit with my long lost twin, jen_miracles, on the Preeclampsia Survivors discussion forum just about everyday. I "met" her shortly after Meghan was born. Like me, she developed severe preeclampsia twice, and earlier the second time around. This is a rare way to develop it, and she and I have that in common among some other things. Jen, if you had a blog, you'd get these awards too. :)

Preeclampsia/HELLP Claims Another Life

This news just makes me sick. As one of my fellow preeclampsia survivors said, there are no words for when baby twins and their daddy have to go on living their lives without their mommy/wife. Awful...simply awful.

Preeclampsia/HELLP claim another beautiful soul

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