"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...
Showing posts with label Preeclampsia. Show all posts
Showing posts with label Preeclampsia. Show all posts
Sunday, January 02, 2011
Friday, April 02, 2010
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.
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.
Sunday, February 01, 2009
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
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
Thursday, November 13, 2008
November is Prematurity Awareness Month
November is Prematurity Awareness Month.
A little more than 6 years ago, I learned that my first baby would be born too soon at 34 weeks gestation. My precious cargo, Grace Ann, entered this world early because of my preeclampsia. She was my biggest baby weighing in at 3 pounds, 14.5 ounces, and 17 1/2 inches long. She had difficulty breathing, eating, and growing. To this day, Grace still deals with issues related to her prematurity, but nonetheless is doing well in first grade. Can she really be 6 already? Wow! I'm eternally grateful for Grace and the wonderful neonatal care she received.
A little more than 4 years ago, I learned that my second baby would be born extremely too early at 27 weeks gestation. My tiny peanut, Meghan Rose, was born a preemie because I developed preeclampsia yet again. She was unbelievably small to me weighing in at just 725 grams, aka 1 pound, 9.5 ounces, and 13 inches long. She was called a micropreemie, and proved herself to be a fighter every scary step of the way. Today, she is in kindergarten, and keeping up with her classmates even though she is still very tiny. We're happy she is growing, albeit ever so slowly, but she is happy and quite the character...ever so feisty like she was in her incubator.
Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.
In tribute to the miracle baby survivors of preeclampsia, please consider donating to the March of Dimes. I would be so proud if you could. Grace & Meghan thank you too.
Jen, mom of Grace & Meghan
Wednesday, September 10, 2008
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
http://preeclampsiasurvivors.blogspot.com/2008/09/post-traumatic-stress.html
Saturday, June 28, 2008
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.
Friday, May 02, 2008
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.
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.
Thursday, April 24, 2008
I'm Finding Courage Through Sharing
As an avid reader of blogs, I've discovered a gem of a writer in Michelle at In the Life of a Child. She began a blog carnival called Finding Courage Through Sharing. It is aimed at a large community of parents struggling through extreme medical challenges with their children. The purpose of the carnival is to give these parents a voice, a place to connect, to grieve a loss or a setback, to share a concern, a frustration, or to share those rare and wonderful triumphs… and to begin trying to heal. It is meant for any parent who has been through any form of medical challenge with their child, and also for those who are still in the midst of facing those challenges.
This post introduces my fellow participants of that carnival to my story.
At my 20 weeks visit, the ultrasound technician pressed down on my stomach and rolled the wand through the warm jelly. I was excited and straining my eyes to see the grainy images coming across on the monitor. Every so often, I was able to identify my baby's body parts. Colleen, the technician, would say things like, "Here's the heart. That is what we want to see. Nice blood flow. Nice strong beat." My husband, Charlie, looked elated to see our baby growing inside of me. "How big is the baby?"
Colleen replied, "I'll let the doctor go over that with you in just a little while." When it was all finished, she handed me two black and white pictures. We made our way back to Dr. C's office and sat down on the other side of his cherry desk. Charlie inquired, "What do you think?"
I replied, "I'm not sure. I'm nauseous from her pressing on my stomach so much." The pregnancy was really weighing on me. I had always thought that I’d begin to feel better by the midpoint, but it hadn't come yet. I was disappointed. I wanted to be one of those glowing mamas-to-be.
Just then, Dr. C came into his office and sat down behind the desk. He picked up my chart, and began to review the images one-by-one. I noticed that he stopped on one and carefully inspected it, but then moved along to review the others. I was looking for clues to how he felt my baby was doing. His body language revealed something wasn't quite right.
"The baby looks pretty good. Organs are developing appropriately, but the baby's size is small. Also, the overall tummy measurements are too big. You have a low placenta, and we'll need to keep watching this. I'm going to have you come back in eight weeks to recheck the baby's size and the position of your placenta."
I fumbled with my words but finally stuttered, "Oh. Oh. Okay. Is there anything different I should be doing?"
"We've found that women who rest on their left side can improve the blood flow to the placenta. So when you are resting or sleeping, use your left side. Just eat well and take it easy. We'll see what happens in eight weeks."
There it was. It was the beginning of our journey. We had no idea what was about to unfold for our baby.
For the next eight weeks, I did as instructed. I often wondered if I was actually helping my baby to grow. I hoped so. At the next ultrasound, the results again were not great on the baby's growth, but my placenta had grown up and away from my cervix. I also shared that I was now swelling off and on. My hands were chubby. My face was puffy, and, well, I no longer had ankles. Dr. C said, "Lots of women swell when pregnant. Your blood pressure is normal, and you don’t have any protein in your urine."
I'd have to come back in four weeks to recheck the baby's progress. Meanwhile, I began to have headaches off and on. The swelling worsened, but finally I didn't feel nauseous anymore. That was a blessing as all of the rest was unraveling. I prayed and hoped for the best.
At 32 weeks, my stomach had begun to pop out a bit. I waddled a little, and my doctor said that the baby's growth was worse. The baby was approaching falling below the third percentile for weight. "Why do you think this is happening Dr. C?" I inquired.
"Your placenta is not working well. We call this intrauterine growth restriction. This happens sometimes. I’d like you to come back every 3-4 days now. We’re going to do an ultrasound and biophysical profile at each visit."
As I heard this, I wondered when I would really feel what he was telling me. It occurred to me that I should probably feel like crying, but all that I felt was numb. Charlie looked very concerned, but he remained very quiet. I could tell he was pleased with a plan of action to watch the baby. Having grown up with an obstetrical nurse for a mother, I knew what this meant. Dr C just wasn't saying it yet. Our baby was getting into trouble and would likely come early. When I returned home that day, I laid down to my left side and prayed for the health of my baby. I was tired, swollen, hot, and generally uncomfortable.
Within two sets of ultrasounds, I was placed on complete bed rest. The swelling was throughout my body and into my brain. My teeth felt very tight inside my gums, and I could feel my pulse against my teeth. Light was painful to my eyes, and straight lines appeared wavy. At one point, small little fireballs raced across my field of vision. I thought, "What the heck was that?" I blinked in response, but I could see the fireballs even with my eyes closed. As fast as they came, they were gone.
A few times, an uncontrollable twitch jerked my head to the left. I had no idea what had happened, but it stopped. My mom had begun calling me daily from Chicago where she lived. When I told her what happened to my head, she replied, "Jen, I think you are getting preeclamptic. I want you to tell Dr. C what happened. Please hang up now and call him." I argued with her, "Mom, he never said he suspects preeclampsia. My blood pressure is fine, and I have no protein." She calmly replied with love in her voice, "Hon, I know he didn't say those words, but you're having some issues. Tell him. It can't hurt to tell him." My emotions were reminiscent of being a teenager again. I felt rage as my mom's concern became my reality. Why couldn't I just have a normal experience? Why? Why my baby? I didn't understand that my uncontrollable emotions were also a sign of my central nervous system faltering. I didn't get that I had been experiencing small seizures. I couldn't process information as my normal self. I had no inhibitions. Whatever came to mind is whatever came out of my mouth.
As I got sicker, so did my baby. Eventually, it was time to remove the baby from the comfort of my womb to begin the process of ending my preeclampsia. My health was failing. My kidneys were shutting down, and my blood pressures were stroke worthy. I had been hooked up to an IV of magnesium sulfate, was wearing an oxygen saturation monitor on my left index finger, and had an oxygen mask strapped to my face. They were inducing me except that my body wasn't responding well. After nearly 24 hours, I had only dilated to 1 centimeter. Charlie, my mom, and my good friend, Shanna, were with me. Suddenly, my fetal heart monitor began to alarm. My mom instructed me to flip over onto my right side. The alarm kept ringing. I wondered if my baby would die inside of me.
I was wrong. My beautiful Grace Ann was delivered by c-section soon after the alarms began to ring. She was small for 34 weeks gestation but she cried and wailed. I was so relieved to hear her cry. The neonatologist assessed our precious miracle, and briefly allowed my mom and Charlie to bring Grace to my place on the OR table. She was wrapped in a blanket and already had a hat on her head. She squinted under the lamps of the operating room table. As fast as I kissed her forehead, Charlie tucked her inside his arms and rushed off with the team to the NICU.
Nearly three days later, I was finally able to visit Grace for the first time in the NICU. My health status prohibited moving me outside of a dark room and an IV of magnesium sulfate prevented eclamptic seizures. By the time I got to the NICU, Grace’s color was pumpkin orange. She was hooked up to a CPAP machine to help her breathing, and she fretted and squirmed inside her incubator. Unfortunately, I couldn't see her. My vision had been impaired due to hypertensive retinopathy. Essentially, my blood pressure had gotten so high that blood vessels had burst inside my eyes. Disappointed, I held her tiny hand, and tears streamed down my cheeks.
It was just the beginning of our journey as parents of premature babies and of children with a genetic disorder called Alpha-1 Antitrypsin Deficiency. I’ll share more of our journey along the way with you. In the meantime, I'm Jen. I survived severe preeclampsia and temporary blindness twice. I've been a NICU mom twice.
My children are miracles. Their lives are not guaranteed. Their presence in my life reminds me to enjoy life's little interactions. In those spaces is where God's grace shines.
My Grace is now six years old. She has a younger sister, Meghan, who is nearly four. Meghan was born a micropreemie. Both of my daughters have Alpha-1. I'm mom to the Alpha Girls. :)
This post introduces my fellow participants of that carnival to my story.
At my 20 weeks visit, the ultrasound technician pressed down on my stomach and rolled the wand through the warm jelly. I was excited and straining my eyes to see the grainy images coming across on the monitor. Every so often, I was able to identify my baby's body parts. Colleen, the technician, would say things like, "Here's the heart. That is what we want to see. Nice blood flow. Nice strong beat." My husband, Charlie, looked elated to see our baby growing inside of me. "How big is the baby?"
Colleen replied, "I'll let the doctor go over that with you in just a little while." When it was all finished, she handed me two black and white pictures. We made our way back to Dr. C's office and sat down on the other side of his cherry desk. Charlie inquired, "What do you think?"
I replied, "I'm not sure. I'm nauseous from her pressing on my stomach so much." The pregnancy was really weighing on me. I had always thought that I’d begin to feel better by the midpoint, but it hadn't come yet. I was disappointed. I wanted to be one of those glowing mamas-to-be.
Just then, Dr. C came into his office and sat down behind the desk. He picked up my chart, and began to review the images one-by-one. I noticed that he stopped on one and carefully inspected it, but then moved along to review the others. I was looking for clues to how he felt my baby was doing. His body language revealed something wasn't quite right.
"The baby looks pretty good. Organs are developing appropriately, but the baby's size is small. Also, the overall tummy measurements are too big. You have a low placenta, and we'll need to keep watching this. I'm going to have you come back in eight weeks to recheck the baby's size and the position of your placenta."
I fumbled with my words but finally stuttered, "Oh. Oh. Okay. Is there anything different I should be doing?"
"We've found that women who rest on their left side can improve the blood flow to the placenta. So when you are resting or sleeping, use your left side. Just eat well and take it easy. We'll see what happens in eight weeks."
There it was. It was the beginning of our journey. We had no idea what was about to unfold for our baby.
For the next eight weeks, I did as instructed. I often wondered if I was actually helping my baby to grow. I hoped so. At the next ultrasound, the results again were not great on the baby's growth, but my placenta had grown up and away from my cervix. I also shared that I was now swelling off and on. My hands were chubby. My face was puffy, and, well, I no longer had ankles. Dr. C said, "Lots of women swell when pregnant. Your blood pressure is normal, and you don’t have any protein in your urine."
I'd have to come back in four weeks to recheck the baby's progress. Meanwhile, I began to have headaches off and on. The swelling worsened, but finally I didn't feel nauseous anymore. That was a blessing as all of the rest was unraveling. I prayed and hoped for the best.
At 32 weeks, my stomach had begun to pop out a bit. I waddled a little, and my doctor said that the baby's growth was worse. The baby was approaching falling below the third percentile for weight. "Why do you think this is happening Dr. C?" I inquired.
"Your placenta is not working well. We call this intrauterine growth restriction. This happens sometimes. I’d like you to come back every 3-4 days now. We’re going to do an ultrasound and biophysical profile at each visit."
As I heard this, I wondered when I would really feel what he was telling me. It occurred to me that I should probably feel like crying, but all that I felt was numb. Charlie looked very concerned, but he remained very quiet. I could tell he was pleased with a plan of action to watch the baby. Having grown up with an obstetrical nurse for a mother, I knew what this meant. Dr C just wasn't saying it yet. Our baby was getting into trouble and would likely come early. When I returned home that day, I laid down to my left side and prayed for the health of my baby. I was tired, swollen, hot, and generally uncomfortable.
Within two sets of ultrasounds, I was placed on complete bed rest. The swelling was throughout my body and into my brain. My teeth felt very tight inside my gums, and I could feel my pulse against my teeth. Light was painful to my eyes, and straight lines appeared wavy. At one point, small little fireballs raced across my field of vision. I thought, "What the heck was that?" I blinked in response, but I could see the fireballs even with my eyes closed. As fast as they came, they were gone.
A few times, an uncontrollable twitch jerked my head to the left. I had no idea what had happened, but it stopped. My mom had begun calling me daily from Chicago where she lived. When I told her what happened to my head, she replied, "Jen, I think you are getting preeclamptic. I want you to tell Dr. C what happened. Please hang up now and call him." I argued with her, "Mom, he never said he suspects preeclampsia. My blood pressure is fine, and I have no protein." She calmly replied with love in her voice, "Hon, I know he didn't say those words, but you're having some issues. Tell him. It can't hurt to tell him." My emotions were reminiscent of being a teenager again. I felt rage as my mom's concern became my reality. Why couldn't I just have a normal experience? Why? Why my baby? I didn't understand that my uncontrollable emotions were also a sign of my central nervous system faltering. I didn't get that I had been experiencing small seizures. I couldn't process information as my normal self. I had no inhibitions. Whatever came to mind is whatever came out of my mouth.
As I got sicker, so did my baby. Eventually, it was time to remove the baby from the comfort of my womb to begin the process of ending my preeclampsia. My health was failing. My kidneys were shutting down, and my blood pressures were stroke worthy. I had been hooked up to an IV of magnesium sulfate, was wearing an oxygen saturation monitor on my left index finger, and had an oxygen mask strapped to my face. They were inducing me except that my body wasn't responding well. After nearly 24 hours, I had only dilated to 1 centimeter. Charlie, my mom, and my good friend, Shanna, were with me. Suddenly, my fetal heart monitor began to alarm. My mom instructed me to flip over onto my right side. The alarm kept ringing. I wondered if my baby would die inside of me.
I was wrong. My beautiful Grace Ann was delivered by c-section soon after the alarms began to ring. She was small for 34 weeks gestation but she cried and wailed. I was so relieved to hear her cry. The neonatologist assessed our precious miracle, and briefly allowed my mom and Charlie to bring Grace to my place on the OR table. She was wrapped in a blanket and already had a hat on her head. She squinted under the lamps of the operating room table. As fast as I kissed her forehead, Charlie tucked her inside his arms and rushed off with the team to the NICU.
Nearly three days later, I was finally able to visit Grace for the first time in the NICU. My health status prohibited moving me outside of a dark room and an IV of magnesium sulfate prevented eclamptic seizures. By the time I got to the NICU, Grace’s color was pumpkin orange. She was hooked up to a CPAP machine to help her breathing, and she fretted and squirmed inside her incubator. Unfortunately, I couldn't see her. My vision had been impaired due to hypertensive retinopathy. Essentially, my blood pressure had gotten so high that blood vessels had burst inside my eyes. Disappointed, I held her tiny hand, and tears streamed down my cheeks.
It was just the beginning of our journey as parents of premature babies and of children with a genetic disorder called Alpha-1 Antitrypsin Deficiency. I’ll share more of our journey along the way with you. In the meantime, I'm Jen. I survived severe preeclampsia and temporary blindness twice. I've been a NICU mom twice.
My children are miracles. Their lives are not guaranteed. Their presence in my life reminds me to enjoy life's little interactions. In those spaces is where God's grace shines.
My Grace is now six years old. She has a younger sister, Meghan, who is nearly four. Meghan was born a micropreemie. Both of my daughters have Alpha-1. I'm mom to the Alpha Girls. :)
Tuesday, April 15, 2008
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.
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.
Sunday, February 17, 2008
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. :)
Sunday, January 27, 2008
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/HELLP claim another beautiful soul
Monday, January 21, 2008
Them...
I've been stacking them up for over five years. They were not in piles of any organization. They were not organized by size. They were not organized by age. They were falling down and tipping over under their own weight. They were neglected. They were hidden away. Many of them I could not see. They were avoided until today.
Today, they helped me to face my past and acknowledge my present.
They are a symbol of what I feel could have been. They are shadows of my past. They hit me in the pit of my heart. They get to the core of my being. They evoke my deepest regrets and failures.
They run the gamut of smallest to large. They were supposed to represent a time of joy and pride. Simply put, they make me cry.
They are my daughters' baby clothes. Each one I touched evoked a different memory.
The tiny purple knit hat which Gracie wore the first time I held her. I was so scared that I'd pull her central line out of her scalp. I couldn't really see her just that large hat on her tiny 3 pound body. I remember thinking it looked like a Smurf hat. That hat I kept. I couldn't part with it.
Preemie socks which remind me of the smallest feet I've ever seen. On Meghan's legs, those socks went all the way up to her thighs. I kept those too.
Onesies which had spit up stains. Little pink sleepers and the cutest little dresses. All of these memories remind me of what I can no longer have. My body can't be pregnant anymore...not without endangering my own life and the life of any unborn baby. Preeclampsia took that opportunity away.
Those tiny little clothes are now packed away into a large shopping bag and are destined for my local Goodwill donation center.
I only hope that they bring someone else joy, pride, happiness, and good memories.
Today, they helped me to face my past and acknowledge my present.
They are a symbol of what I feel could have been. They are shadows of my past. They hit me in the pit of my heart. They get to the core of my being. They evoke my deepest regrets and failures.
They run the gamut of smallest to large. They were supposed to represent a time of joy and pride. Simply put, they make me cry.
They are my daughters' baby clothes. Each one I touched evoked a different memory.
The tiny purple knit hat which Gracie wore the first time I held her. I was so scared that I'd pull her central line out of her scalp. I couldn't really see her just that large hat on her tiny 3 pound body. I remember thinking it looked like a Smurf hat. That hat I kept. I couldn't part with it.
Preemie socks which remind me of the smallest feet I've ever seen. On Meghan's legs, those socks went all the way up to her thighs. I kept those too.
Onesies which had spit up stains. Little pink sleepers and the cutest little dresses. All of these memories remind me of what I can no longer have. My body can't be pregnant anymore...not without endangering my own life and the life of any unborn baby. Preeclampsia took that opportunity away.
Those tiny little clothes are now packed away into a large shopping bag and are destined for my local Goodwill donation center.
I only hope that they bring someone else joy, pride, happiness, and good memories.
Thursday, December 27, 2007
Angel in Disguise
I'm suffering from NICU flashbacks ever since my good friend, Shanna, gave birth to her beautiful daughter, Hailey, at 28 weeks gestation. Little Hailey's birth has brought up a lot of what I thought were long gone memories. As such, I'm thinking through what my preeclampsia and NICU expereinces taught me. Here is an essay I wrote about how life can send you an angel in disguise:
When I was pregnant with my oldest daughter, Grace, I developed severe preeclampsia. A c-section later and a few days post partum, I was still being treated with a life saving drug called Magnesium Sulfate and a narcotic for pain relief.
I'm not certain which medication gave me halucinations, but I had them. Visions of baby faces, foot prints, and bugs...the creepy, crawling version. Needless to say, I became quite distraught at what was appearing before my eyes. It was 2:00 AM, and I was not sleeping. My husband, Charlie, was stretched out on the equilavent of bamboo mat passed out. I started freaking out, and he didn't wake up. I called the nurse and explained the creepy, crawlies and baby faces/foot prints. All the while, I'm thinking: "Am I insane?"
Soon after, Dr. Giles, a second year resident, walked into my room. I asked him if I was going insane. He said, "I don't know you very well so I can't answer that question." Dr. Giles then turned to the sleeping hump also known as my husband and said, "Hey, is your wife insane?" In his sleepy stupor, Charlie grumbled, "Yes, very." To which, I became a crying ball of post partum emotions, high blood pressure, and tears. The doctor didn't seem too impressed by my description. Dr. Giles discontinued the magnesium sulfate and my PCA for pain relief. By morning, I became a normal emotional post partum mommy, but I didn't see any more visions. Hooray!
The next morning, I remember thinking that doctor was a jerk. He seemed annoyed by being awaken at 2:00 AM and dealing with me, an "emotional" mommy. (Looking back on it, I can see how he was tired, and had probably been on rotation for more than 24 hours.) For quite some time after, I replayed the scene in my head. It was a low point for me in my preeclampsia and NICU journey.
A little more than two years later, I was inpatient in the hospital again pregnant with my second daughter, Meghan. I was almost 27 weeks along with soaring blood pressure, a baby that was too small (IUGR), about 40 pounds of swelling, and the worst headache of my life. Preeclampsia was back with a vengence.
It was day 8 of bedrest, and I noticed that my baby had not been moving around as much. It was a Sunday, and there were several mommies on my antepartum floor whose pregnancies were giving the nurses and doctors much to do. Well, it took what seemed like forever for my nurse to come. She finally came, and hooked me up to a fetal heart monitor. Within two minutes, nurse Yulia was watching and listening to the monitor with a concerned look on her face. She quickly left the room, which gave me some anxiety. When she returned, she walked into the room with Dr. Giles, who was now the chief OB resident.
Needless to say, I was none too happy to see Dr. Giles. I'm not sure what experiences Dr. Giles had been through in the prior two years, but he was a completely different man. His dedication to his chosen profession, desire to answer my questions, and general bed side manner were exceptional. He explained that my baby was experiencing heart decelerations, which meant fetal distress. I would need to be sent to Labor and Delivery to start the dreaded Mag. This also meant that my baby would be coming 13 weeks too soon. 13 weeks! Crap!
I had been trying to prepare myself for this reality all the while on bedrest, but it hadn't quite sunken in yet. I had been a NICU mom with Gracie, but she was only 6 weeks early...small, but mostly healthy. This baby would be around 1 1/2 pounds and need immediate ventilation support. Her chances of survival within the first 4 days would only be 75%. There were so many risks to my dear sweet baby still growing (albeit quite slowly) inside of me...too many to comprehend completely.
For twenty minutes, Dr. Giles sat down in a chair while carefully, quietly, calmly, and lovingly walking me and my husband through what was about to unfold. He also explained that I'd probably have preeclampsia with any future pregnancies. Before he left the room, he walked over to my bed. While touching my hand, he said, "I hope this turns out okay for you Jennifer. Good luck."
How Dr. Giles morphed from "that jerk doctor" into a genuine caring human being I'll never know. But I do know that I'll always remember his kindness and concern. So, Dr. Giles, I pay tribute to your growth and how in the end, all became right in my world. I delivered Meghan Rose the next day weighing 1 pound, 9.5 ounces. She was cared for in the NICU for 79 days, and then came home to our loving arms. Meghan is our living, breathing miracle.
Submitted to Wrapped Emotions for the Gift of Every Moment, Week 4:
When I was pregnant with my oldest daughter, Grace, I developed severe preeclampsia. A c-section later and a few days post partum, I was still being treated with a life saving drug called Magnesium Sulfate and a narcotic for pain relief.
I'm not certain which medication gave me halucinations, but I had them. Visions of baby faces, foot prints, and bugs...the creepy, crawling version. Needless to say, I became quite distraught at what was appearing before my eyes. It was 2:00 AM, and I was not sleeping. My husband, Charlie, was stretched out on the equilavent of bamboo mat passed out. I started freaking out, and he didn't wake up. I called the nurse and explained the creepy, crawlies and baby faces/foot prints. All the while, I'm thinking: "Am I insane?"
Soon after, Dr. Giles, a second year resident, walked into my room. I asked him if I was going insane. He said, "I don't know you very well so I can't answer that question." Dr. Giles then turned to the sleeping hump also known as my husband and said, "Hey, is your wife insane?" In his sleepy stupor, Charlie grumbled, "Yes, very." To which, I became a crying ball of post partum emotions, high blood pressure, and tears. The doctor didn't seem too impressed by my description. Dr. Giles discontinued the magnesium sulfate and my PCA for pain relief. By morning, I became a normal emotional post partum mommy, but I didn't see any more visions. Hooray!
The next morning, I remember thinking that doctor was a jerk. He seemed annoyed by being awaken at 2:00 AM and dealing with me, an "emotional" mommy. (Looking back on it, I can see how he was tired, and had probably been on rotation for more than 24 hours.) For quite some time after, I replayed the scene in my head. It was a low point for me in my preeclampsia and NICU journey.
A little more than two years later, I was inpatient in the hospital again pregnant with my second daughter, Meghan. I was almost 27 weeks along with soaring blood pressure, a baby that was too small (IUGR), about 40 pounds of swelling, and the worst headache of my life. Preeclampsia was back with a vengence.
It was day 8 of bedrest, and I noticed that my baby had not been moving around as much. It was a Sunday, and there were several mommies on my antepartum floor whose pregnancies were giving the nurses and doctors much to do. Well, it took what seemed like forever for my nurse to come. She finally came, and hooked me up to a fetal heart monitor. Within two minutes, nurse Yulia was watching and listening to the monitor with a concerned look on her face. She quickly left the room, which gave me some anxiety. When she returned, she walked into the room with Dr. Giles, who was now the chief OB resident.
Needless to say, I was none too happy to see Dr. Giles. I'm not sure what experiences Dr. Giles had been through in the prior two years, but he was a completely different man. His dedication to his chosen profession, desire to answer my questions, and general bed side manner were exceptional. He explained that my baby was experiencing heart decelerations, which meant fetal distress. I would need to be sent to Labor and Delivery to start the dreaded Mag. This also meant that my baby would be coming 13 weeks too soon. 13 weeks! Crap!
I had been trying to prepare myself for this reality all the while on bedrest, but it hadn't quite sunken in yet. I had been a NICU mom with Gracie, but she was only 6 weeks early...small, but mostly healthy. This baby would be around 1 1/2 pounds and need immediate ventilation support. Her chances of survival within the first 4 days would only be 75%. There were so many risks to my dear sweet baby still growing (albeit quite slowly) inside of me...too many to comprehend completely.
For twenty minutes, Dr. Giles sat down in a chair while carefully, quietly, calmly, and lovingly walking me and my husband through what was about to unfold. He also explained that I'd probably have preeclampsia with any future pregnancies. Before he left the room, he walked over to my bed. While touching my hand, he said, "I hope this turns out okay for you Jennifer. Good luck."
How Dr. Giles morphed from "that jerk doctor" into a genuine caring human being I'll never know. But I do know that I'll always remember his kindness and concern. So, Dr. Giles, I pay tribute to your growth and how in the end, all became right in my world. I delivered Meghan Rose the next day weighing 1 pound, 9.5 ounces. She was cared for in the NICU for 79 days, and then came home to our loving arms. Meghan is our living, breathing miracle.
Submitted to Wrapped Emotions for the Gift of Every Moment, Week 4:
Wednesday, December 19, 2007
Cherished
I'm feeling sentimental as the year winds down to an end. I'm grateful for all of my blessings, and this letter I wrote to Meghan when she was 1 year old really and truly recaps how I'm feeling, which is incredibly blessed. Some of you may have seen this already, but it bears repeating. I hope Meghan cherishes it when she is older.
Dear Meghan,
When your sister was about 15 months old I was having so much fun being a mommy, I began to have what we, mommies, call baby lust. Your big sister, Gracie, was at a very fun age filled with exploration and inquisitiveness, but she had Alpha-1.
Your daddy and I eventually decided to add to our family, but that was not without reservations. We discussed having another baby from a risk benefit perspective. After all, I had a high risk pregnancy and birth experience with Gracie because preeclampsia reared its ugly head. My life and Gracie’s life had been threatened by my high blood pressure, seizure risk, and kidney dysfunction. In addition to preeclampsia, we also carried the Alpha-1 genes. It was a confusing and stressful time in our lives. We weren’t sure we wanted to inflict that possibility on another child by choice.
In looking at it in terms of benefits, we were normal adults who wanted to grow our family and cultivate the love we had for one another in our children. It wasn’t fair that preeclampsia happened to me. It wasn’t fair that we both carried the Alpha-1 Z gene. It wasn’t fair that we had no control over preeclampsia or our genes. I knew in my head that I didn’t ask for preeclampsia or Alpha-1, but somewhere deep down inside, I felt like I failed as a parent. I wallowed in the guilt, but somehow, somewhere I eventually found the strength to pull myself out of the darkness and be there for your daddy and Gracie. I’m so happy that God helped me because that led me to you, my baby girl, Meggie.
Unfortunately, I developed preeclampsia with you too, and this time at 25 weeks gestation. You were born a peanut weighing an unbelievable 1 pound, 9.5 ounces, and stretching out to be 13 inches long at 27 weeks. You were in the fight for your life. We weren’t certain that you’d be okay. Your lungs were quite immature, and your liver was not working as it should. I kept wondering what that meant if you were an Alpha like Gracie. What would it mean if you had Alpha-1 and you were born too early? What would that mean for your future lung and liver health?
After about 2 ½ months in NICU, you had finally stabilized enough to have your Alpha-1 tests. I remember getting a call from your daddy, who was visiting you in the NICU. He was there when they delivered the test results. You were an Alpha, too. My heart sank. I could hear the sadness in his voice. Tears streamed down my cheeks. It was a hard day, but I soon remembered how much of a miracle you truly were. You were not a guaranteed child. You were a gift from God.
So Meghan, I write this letter so you understand that your mommy and daddy didn’t want to take a chance with your life. We just knew deep down inside that we needed to be parents again. You were meant to be. We’re sorry that Alpha-1 is a part of your life, but we want you to know that it should not define you. You are our sweet, inquisitive, joyful daughter who also happens to have Alpha-1. Your mom and dad love you, and, yes, we will probably always struggle with guilt, but we get to experience the miracle of you. That overrides the guilt.
Love,
Mom
Submitted to Wrapped Emotions for the Gift of Every Moment:
Dear Meghan,
When your sister was about 15 months old I was having so much fun being a mommy, I began to have what we, mommies, call baby lust. Your big sister, Gracie, was at a very fun age filled with exploration and inquisitiveness, but she had Alpha-1.
Your daddy and I eventually decided to add to our family, but that was not without reservations. We discussed having another baby from a risk benefit perspective. After all, I had a high risk pregnancy and birth experience with Gracie because preeclampsia reared its ugly head. My life and Gracie’s life had been threatened by my high blood pressure, seizure risk, and kidney dysfunction. In addition to preeclampsia, we also carried the Alpha-1 genes. It was a confusing and stressful time in our lives. We weren’t sure we wanted to inflict that possibility on another child by choice.
In looking at it in terms of benefits, we were normal adults who wanted to grow our family and cultivate the love we had for one another in our children. It wasn’t fair that preeclampsia happened to me. It wasn’t fair that we both carried the Alpha-1 Z gene. It wasn’t fair that we had no control over preeclampsia or our genes. I knew in my head that I didn’t ask for preeclampsia or Alpha-1, but somewhere deep down inside, I felt like I failed as a parent. I wallowed in the guilt, but somehow, somewhere I eventually found the strength to pull myself out of the darkness and be there for your daddy and Gracie. I’m so happy that God helped me because that led me to you, my baby girl, Meggie.
Unfortunately, I developed preeclampsia with you too, and this time at 25 weeks gestation. You were born a peanut weighing an unbelievable 1 pound, 9.5 ounces, and stretching out to be 13 inches long at 27 weeks. You were in the fight for your life. We weren’t certain that you’d be okay. Your lungs were quite immature, and your liver was not working as it should. I kept wondering what that meant if you were an Alpha like Gracie. What would it mean if you had Alpha-1 and you were born too early? What would that mean for your future lung and liver health?
After about 2 ½ months in NICU, you had finally stabilized enough to have your Alpha-1 tests. I remember getting a call from your daddy, who was visiting you in the NICU. He was there when they delivered the test results. You were an Alpha, too. My heart sank. I could hear the sadness in his voice. Tears streamed down my cheeks. It was a hard day, but I soon remembered how much of a miracle you truly were. You were not a guaranteed child. You were a gift from God.
So Meghan, I write this letter so you understand that your mommy and daddy didn’t want to take a chance with your life. We just knew deep down inside that we needed to be parents again. You were meant to be. We’re sorry that Alpha-1 is a part of your life, but we want you to know that it should not define you. You are our sweet, inquisitive, joyful daughter who also happens to have Alpha-1. Your mom and dad love you, and, yes, we will probably always struggle with guilt, but we get to experience the miracle of you. That overrides the guilt.
Love,
Mom
Submitted to Wrapped Emotions for the Gift of Every Moment:
Sunday, December 09, 2007
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
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
Saturday, October 20, 2007
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!
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!
Monday, October 01, 2007
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."
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."
Thursday, September 20, 2007
Perspective
Today, I arrived home earlier than usual because Charlie needed to be at his school for an open house. After he sped off on his motorcycle, I decided to take the girls to our local park to play for awhile. We all got in the van, and quickly arrived at the park.
"Can I go Mommy?" Meghan squealed as I lifted her out of the carseat.
"Go ahead."
Grace jumped out of the side of our minivan, and I clicked the button to lock it up. As I turned around, Meghan's petite legs were trotting up a slight grassy incline. Her tiny rear end was hidden underneath her capri pants, and her long yellow locks bounced with each step. Grace raced behind her and passed her by to beat Meghan to the playset.
It had been a while since I'd been to the park with the girls so I was pleased to see that Meghan could now climb most every part of the playset with ease. Honestly, I still have my moments of doubting her abilities. I know I shouldn't do this, but I can't help but noticing how other kids seem to take their profound agility for granted somehow. I secretly yearn to have kiddos who can "leap a tall building in a single bound." I know that is screwed up, but having been Mommy to two former preemies, it is hard not to think that way. It is hard not to remember that if I hadn't gotten sick, my babies would have been full term agility prone gals, at least that is what I would have given them...a full long ride inside my womb with little to no stress and a peaceful low blood pressure experience. Alas, it was not to be.
All-in-all, today's trip to the park provided me with much perspective. Thank you cosmic energy. Thank you God.
"Watch me Mom!" Meghan squealed as she climbed up the slide in the wrong direction.
"Meghan, you know the rules. We go up ladders and down slides."
A different voice appeared from the top of a platform on the playset. It came from a bulky little boy named Rico who also said, "Watch me Mom! I told you I could do it."
His mom shouted, "Watch out Rico. There is a little girl at the bottom of the pole. Watch out for her." Meghan was standing at the bottom of the equivalent of a fire pole so I guided her out of the way as he jumped on the pole and rode down.
I turned around to find his mom sitting at a picnic table.
"She is so cute. How old is she? Two? Three?"
I responded, "She is 3, but tiny for her age."
"I keep trying to teach him to be careful around girls and that if he is nice that he'll have some girl friends. I mean girl friends not girlfriends."
By this time, Rico had climbed up the platform and was ready to jump down the pole again. "Meghan, please get away from the bottom of the pole. He wants to come down."
"Is that her name? Meghan?"
"Yes."
"That is a beautiful name."
"Thank you. She is tiny because she was born very early. She weighed 1 pound, 9 ounces when she was born. We took her home 79 days after she was born."
"Wow, what happened?"
"I got very sick with preeclampsia, which causes very high blood pressure."
"Oh. She looks great now. I had preemie twins, who were 4 and 5 pounds when they were born."
"Aha, so you know how it goes then," I believed.
"Sort of. I gave them up for adoption because I couldn't take care of three kids. It was so hard to give them up...the hardest thing I ever done. I had them in Utah and the mom and dad were there in the NICU every day with my daughter and son. I was only there until they made me go home after my c-section."
"Wow. You were so brave to make that incredibly generous decision. It sounds like you made the right decision for you."
"I don't know why I'm telling you this. I don't usually tell anyone, but you seem so nice."
"Thank you for sharing it with me. I bet your twins' parents thank God every day that you blessed them with your twins," I meekly responded.
"Yeah. They are a white family, and my twins were biracial. My son had green eyes at birth, and my daughter had brown eyes." I wondered why she felt the need to share that detail with me besides the fact that I have the fairest of fair skin, and she was looking for a way to find some commonality between us.
"Mommy, I want to go swing! Mommy!"
"Hold on Grace! Just a minute! I'm talking to this lady. Hold on."
"It's okay. Let her swing."
Grace raced to a "big kid" swing, and Rico followed her to the other one. Meghan wimpered a bit as I placed her in a baby swing. "I'm not a baby!"
"I know Meghan, but the other swings are being used. You'll have fun on this one."
"Noooo!"
"Yes, Meghan. In just a bit, you can have a turn on the big kid swing." Rico's mom joined us and began pushing him on his swing too.
"My son had jaundice and had to go under those lights to get better."
I pointed to Grace, and said, "She had that too. Those lights work great."
"Their mom sends me pictures on all the holidays, and she sends a video tape on their birthday each year."
"So, you get to see how well they are doing?"
"Yes, but it is so hard. They are so beautiful, and I miss them so much."
"I suppose you'll miss them forever since they are a part of you, but I hope you know that you did a really great thing. You gave your twins two parents who love them, which is a beautiful gift."
"I know. It is just so hard sometimes. I still don't know why I'm tellin' you this."
Grace and Rico had gotten bored swinging and had run off to the playset again.
"Mommy! I want to stop swinging now. Mommy, I'm all done now," Meghan shouted.
I was so immersed in Rico's mom's story that I wasn't hearing Meghan.
"Mom!"
"Oh, alright Meghan. Go slide."
Rico's mom and I continued to exchange mommy small talk until it was time to go. I'll probably never see her again, but I learned a lot from her tonight.
I'm an incredibly lucky person. I have my children with me. I never had to make a decision like Rico's mom did. I have a spouse who loves me, a nice home, my health, and my beautiful children. I have so much for which to be thankful. I don't think I'll ever forget Rico's mom even though I never got her name.
Thank you cosmic energy. Thank you God.
"Can I go Mommy?" Meghan squealed as I lifted her out of the carseat.
"Go ahead."
Grace jumped out of the side of our minivan, and I clicked the button to lock it up. As I turned around, Meghan's petite legs were trotting up a slight grassy incline. Her tiny rear end was hidden underneath her capri pants, and her long yellow locks bounced with each step. Grace raced behind her and passed her by to beat Meghan to the playset.
It had been a while since I'd been to the park with the girls so I was pleased to see that Meghan could now climb most every part of the playset with ease. Honestly, I still have my moments of doubting her abilities. I know I shouldn't do this, but I can't help but noticing how other kids seem to take their profound agility for granted somehow. I secretly yearn to have kiddos who can "leap a tall building in a single bound." I know that is screwed up, but having been Mommy to two former preemies, it is hard not to think that way. It is hard not to remember that if I hadn't gotten sick, my babies would have been full term agility prone gals, at least that is what I would have given them...a full long ride inside my womb with little to no stress and a peaceful low blood pressure experience. Alas, it was not to be.
All-in-all, today's trip to the park provided me with much perspective. Thank you cosmic energy. Thank you God.
"Watch me Mom!" Meghan squealed as she climbed up the slide in the wrong direction.
"Meghan, you know the rules. We go up ladders and down slides."
A different voice appeared from the top of a platform on the playset. It came from a bulky little boy named Rico who also said, "Watch me Mom! I told you I could do it."
His mom shouted, "Watch out Rico. There is a little girl at the bottom of the pole. Watch out for her." Meghan was standing at the bottom of the equivalent of a fire pole so I guided her out of the way as he jumped on the pole and rode down.
I turned around to find his mom sitting at a picnic table.
"She is so cute. How old is she? Two? Three?"
I responded, "She is 3, but tiny for her age."
"I keep trying to teach him to be careful around girls and that if he is nice that he'll have some girl friends. I mean girl friends not girlfriends."
By this time, Rico had climbed up the platform and was ready to jump down the pole again. "Meghan, please get away from the bottom of the pole. He wants to come down."
"Is that her name? Meghan?"
"Yes."
"That is a beautiful name."
"Thank you. She is tiny because she was born very early. She weighed 1 pound, 9 ounces when she was born. We took her home 79 days after she was born."
"Wow, what happened?"
"I got very sick with preeclampsia, which causes very high blood pressure."
"Oh. She looks great now. I had preemie twins, who were 4 and 5 pounds when they were born."
"Aha, so you know how it goes then," I believed.
"Sort of. I gave them up for adoption because I couldn't take care of three kids. It was so hard to give them up...the hardest thing I ever done. I had them in Utah and the mom and dad were there in the NICU every day with my daughter and son. I was only there until they made me go home after my c-section."
"Wow. You were so brave to make that incredibly generous decision. It sounds like you made the right decision for you."
"I don't know why I'm telling you this. I don't usually tell anyone, but you seem so nice."
"Thank you for sharing it with me. I bet your twins' parents thank God every day that you blessed them with your twins," I meekly responded.
"Yeah. They are a white family, and my twins were biracial. My son had green eyes at birth, and my daughter had brown eyes." I wondered why she felt the need to share that detail with me besides the fact that I have the fairest of fair skin, and she was looking for a way to find some commonality between us.
"Mommy, I want to go swing! Mommy!"
"Hold on Grace! Just a minute! I'm talking to this lady. Hold on."
"It's okay. Let her swing."
Grace raced to a "big kid" swing, and Rico followed her to the other one. Meghan wimpered a bit as I placed her in a baby swing. "I'm not a baby!"
"I know Meghan, but the other swings are being used. You'll have fun on this one."
"Noooo!"
"Yes, Meghan. In just a bit, you can have a turn on the big kid swing." Rico's mom joined us and began pushing him on his swing too.
"My son had jaundice and had to go under those lights to get better."
I pointed to Grace, and said, "She had that too. Those lights work great."
"Their mom sends me pictures on all the holidays, and she sends a video tape on their birthday each year."
"So, you get to see how well they are doing?"
"Yes, but it is so hard. They are so beautiful, and I miss them so much."
"I suppose you'll miss them forever since they are a part of you, but I hope you know that you did a really great thing. You gave your twins two parents who love them, which is a beautiful gift."
"I know. It is just so hard sometimes. I still don't know why I'm tellin' you this."
Grace and Rico had gotten bored swinging and had run off to the playset again.
"Mommy! I want to stop swinging now. Mommy, I'm all done now," Meghan shouted.
I was so immersed in Rico's mom's story that I wasn't hearing Meghan.
"Mom!"
"Oh, alright Meghan. Go slide."
Rico's mom and I continued to exchange mommy small talk until it was time to go. I'll probably never see her again, but I learned a lot from her tonight.
I'm an incredibly lucky person. I have my children with me. I never had to make a decision like Rico's mom did. I have a spouse who loves me, a nice home, my health, and my beautiful children. I have so much for which to be thankful. I don't think I'll ever forget Rico's mom even though I never got her name.
Thank you cosmic energy. Thank you God.
Tuesday, July 17, 2007
Got the Abstract!
Yahoo! Thanks Sarah.
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
Sunday, July 15, 2007
Preeclampsia and Alpha-1 Antitrypsin Deficiency
About 3 years ago on a lark, I looked up the location of the Alpha-1 Antitrypsin Deficiency gene on the human genome web site. To my surprise, I had an "aha" moment when I noticed that a different gene for hypertension (that I have) was startlingly close to the Alpha-1 Antitrypsin Deficiency gene on the distal long arm of chromosome 14.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
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