Sunday, December 30, 2007

Tante's Beautiful Girl

Thought I'd share a picture of Tante's beautiful baby girl, Hailey. I visited her in the NICU yesterday, and I'm quite proud because I didn't freak out while I was there. She is simply gorgeous, and I've fallen in love with her already. I can't wait to watch her grow up and out of the NICU.

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:

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Wednesday, December 26, 2007

Cough, Cough, Cough

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

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

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

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

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

Tuesday, December 25, 2007

Merry Christmas

Today, we celebrate the birth of Jesus. Grace & Meghan sang happy birthday to him earlier today.

There is much to celebrate, but I'm blurry-eyed right now. Off to bed.

God bless my family and thank you for my blessed life. Merry Christmas!

PS: Tante came home from the hospital today. Hailey is hanging in there, which we are so glad to see.

Saturday, December 22, 2007

Congrats to Tante

Tante Shanna had her babies last night. Little miss Hailey Elizabeth came early at 28 weeks. She weighed 2 pounds, 13 ounces and was 16 inches long. So far, she is doing well in NICU and has some breathing assistance.

Angel Mary Carol was delivered right along with Hailey, and we'll miss her forever.

Congrats Tante! Welcome to the parenthood club, and sorry you joined the NICU club with us.

Jen

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


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Saturday, December 15, 2007

Croup

Thursday morning, I awoke to the sound of Grace coughing like a barking seal. It wasn't too bad at first sounds, but then rapidly progressed into a series of "arf, arf, arrrrf, arrrrrrrrrrffffff, aaaaaaaaaarrrrrrrrrrfffffffffff" followed by a garbled, "Mommy!"

I walked into her room, and she promptly began to bark again. "Hmmm, that doesn't sound good," I thought. As I got closer to her sitting up in bed, I heard what sounded like Darth Vadar breathing, which can be properly labeled as stridor.

"Ah crap!" I thought. I knew that croup is irritation in the upper airway, but wasn't sure what that meant in terms of her Alpha-1. Would this virus be damaging her lungs? Or, could this be something more severe like bronchitis? In either case, it was time to get an appointment with the pediatrician. I then wondered if her former preemie lungs also contributed. It really didn't matter though. She needed to see the doctor.

So Grace was in heaven, home from school for the day with her mommy all to herself. She watched the full line up on PBS kids, and then we went to the pediatrician's office.

When Dr. M walked into the room, he said, "She sounds pretty noisy." Grace smiled and then proceeded to cough, cough, cough for a minute.

"Well, I'd say she sounds pretty croupy. Let's look in your throat Grace."

She said, "Ahhhhhhh!" Then, she promptly started to cough again. "Okay Grace. It looks pretty irritated in there. Let's listen to your lungs. Deep breath, please. Now, say the letter E for me."

"Eeeeeeeeee, cough, eeeeee, cough, cough, cough...eeee."

"Well, that is some pretty loud stridor Gracie. Let's give you some medicine to help you out."

We left with a prescription for oral prednisone, and now Gracie thinks and acts like she is supergirl. It is pretty funny to see her doing things like running in place or jumping jacks just because she can. She got up out of bed this morning, and promptly started running in place. I'd say she has energy in spades from her prednisone. LOL She never rises and shines in the morning. She is my grumpy gus.

Her breathing is still a bit noisy, but that cough is less. She is sleeping well, and hopefully, she is on the mend now. If we can make it through the next 3 days with prednisone Gracie. She is quite the character with a rolling set of emotions and energy. :)

Wednesday, December 12, 2007

NICU Reunion

I grabbed the handle of a large metal door which allowed entry into the hospital. I swung it open, and Grace and Meghan ran through it. The familiar pattern of the carpet appeared. Sage green and lavender geometric shapes splattered across the hallway floor, and a large sign read Neonatal Intensive Care Unit. Tan handrails lined the skywalk that led toward the NICU.

Ahead of me, Grace ran her hand along the handrail as she skipped along in her shiny patent leather shoes with a 1/2 inch heel. Her sensory need to touch and feel her way through life is evident everyday. She turned her head around toward me and said, "This feels silky smooth, Mommy."

"Yes Grace," I said as I wondered just how many germs she was picking up on her right hand.

"It feels cold, too."

Meghan's right hand was in my left hand, and as we walked along the skywalk, her grip became increasingly tighter. The blood was leaving my index finger so I jiggled her hand a bit to encourage her to release her grip. She relaxed her hand as she said, "I was born here Mommy."

"Yes, Meghan. You were my littlest baby girl Meggie. You lived here for 79 days, and then you came to our house. It made me so happy when you came home."

Grace inquired, "Mommy, how long did I live here?"

"You stayed here 23 days Gracie."

"How much did I weigh Mommy?"

"3 pounds, 14.5 ounces."

"I was bigger than Meghan. Right Mommy?"

"Yes, Grace. You were bigger than Meghan, but you were still small when you were born. Mommy and Daddy were so worried about you when you were born. Meghan, too. The doctors and nurses here took great care of you, and showed Mommy and Daddy how to take care of you too."

We were on our way to the annual Holiday Party NICU reunion. The girls were excited because I finally let them put their Christmas dresses on. Hunter green velvet adorned their small frames, and red, green, and silver bells jingled in their blonde hair. Earlier when I put Meghan's dress on, she twirled and said, "My pretty dress helps me dance good."

The skywalk smelled like the pages of an old, faded book. It had smelled that way since it was built 4 years ago. I don't know why but that smell brought back a memory I hadn't recalled in quite some time. With Gracie still skipping along and Meghan still squeezing my index finger too tightly, I was suddenly flashing back to that skywalk about 3 weeks after Meghan was born. She was still quite fragile then, and was struggling with her H&H (hemoglobin and hematocrit). In the few days before then, her H&H values were plunging. I had studied the values in her chart, but didn't quite understand them except that the values read LOW.

When I had walked into the NICU that day, Meghan's primary nurse, Kim, greeted me with a sullen look just outside the door of Meghan's room. I flashed her a nervous smile because I didn't want to acknowledge the clear look of concern on her face. She stuttered and blurted out in one long breath, "Uh, you can't do kangaroo this morning. She isn't stable enough. Her H&H fell overnight, and we're transfusing her right now. I still don't like her color, I've turned down the lights, and asked visitors to keep it down. She is really in dangerous territory right now. I really pushed her when I had to find a vessel for the transfusion. She was really mad at me. I blew a vein in her arm so now we're using a vein in her skull. You can sit next to her, but please don't touch her or the tubing on top of the isolette."

She walked me to the isolette, and said, "Here is a chair." Then, she pointed to the bag of blood, and said, "Leave that alone please. Now, sit and let's hope she pinks up with some of this blood."

Panic and fear was welling up inside of me, but I managed to blurt out, "I'll do anything she needs right now. Kangaroo care is the furthest thing on my mind right now. What blood type is this blood?"

"It is O neg. We like to use that type in the NICU to reduce transfusion issues." Why I wanted to know that is not clear to me even now. I also wondered inside what Kim meant by transfusion issues, but my eyes had fallen onto Meghan's shadowy figure inside the isolette. A ventilator was pumping air into her prematurely abused lungs, her foot glowed orange from a pulse oximeter, a temperature probe was stuck to her chest with a shining gold sticker in the shape of a teddy bear, and a thin tube of maroon colored blood was flowing into a venous catheter in Meghan's skull.

"Oh my, my, my God. She is so pale. Thank God for blood donors." I stuttered.

Kim joked a bit with me and said, "Hey, maybe she has your color?"

"Uh yeah, maybe. I know I have red-headed pale skin, but I don't look like death. She does."

"Let's see what happens, and Dr. R will be here soon. I called him. You might want to call your husband."

"Oh." I knew it was bad, but it was all so surreal. I wanted to cry, but it wouldn't come. I just sat there willing Meghan to live with every bit of my being. I kept thanking God for that blood donor, and asking God to help Meghan. Over and over again, I prayed. Meghan hadn't been baptized yet so I held my right hand out, made a sign of a cross with my hand in the air, and quietly said, "I baptize you in the name of the father, the son, and the Holy Spirit." Tears pooled in my eye lids as I thought I didn't want her to die without being baptized, even a baptism by me was better than nothing.

Eventually, the donor's blood began to bring the color back into Meghan's tiny little being. It was the longest five minutes of my life as I experienced it in a kind of slow motion sequence. My eyes wouldn't blink. I don't recall hearing much after I sat down next to her isolette, and it seemed darker than usual. I didn't want to leave her, not even to call Charlie. I wasn't sure she'd still be alive if I left to call him.

A few minutes later, Kim looked at her vital signs, and said, "I think this is helping. She is doing better right now. Let's let her sleep. Sleep helps."

I thought, "Oh thank God." I began to shiver a bit from the adrenaline.

I glanced back at Meghan, and she seemed very peaceful. A calm came over me, and I had a sudden urge to call Charlie. I quickly left for the family room where the phone was. I don't remember what I said to him, but after talking to him, I found myself on that skywalk to the NICU.

Sunlight was gleaming through the windows. Children were playing on the playground at the school across the street, and I sat down on the green and purple carpet about 1/4 of the way down the hall. I thanked God a few more times, and made a "bee line" back to the NICU to sit next to Meghan. I had nearly lost her. We had nearly lost her. God intervened. A blood donor brought life back to my precious baby as I stood their observing. Amazing. Simply amazing.

The jingling of the bells on Grace's head brought me back into reality. We had reached the waiting area outside the NICU. The party was already in progress, and both my girls were very much alive. They bounced, skipped, wiggled, and jiggled their way through the party.

Neither one wanted to sit on Santa's lap nor tell him what they wanted for Christmas. I didn't care though. They were not guaranteed children. The NICU staff worked hard to save their lives so that they could have lives. Even if that means, the girls act up, misbehave, or allow their sensory issues to overtake what is consider normal childhood behavior. They live, and I live through them. We live through them. We live for them. I live for them.







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Sunday, December 09, 2007

Blessings

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

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

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

"Mommy, what is that stuff again?"

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

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

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

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

"Really Meghan?" I responded to play along.

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

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

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

"Okay."

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

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

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

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

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

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


There she was among her friends.

There she stood, singing with her whole heart.

Our beautiful living miracle.

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

Who once was a fragile frail skinned micropreemie.

Who couldn't keep her body temperature warm.

Who would forget to breathe.

Who's heart would skip beats.

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

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

Who turned ashen blue several scary times.

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

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

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

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

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

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

Who taught me that miracles can come in tiny packages.

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



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

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

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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

Monday, December 03, 2007

Unexpected News

When I arrived home from work, I walked into the kitchen. As I panned the room, I saw them…all the dishes from 3 days worth of eating piled here and there. “Ugh,” I thought. After giving the girls hugs and asking them about their days, I rolled up my sleeves and started my work.

Water was rolling down my arms toward my elbows, but I was finally almost finished with the crusty dishes. After nearly an hour, my feet were beginning to ache, and my stomach was rumbling with hunger. I scolded myself about leaving the dishes for so many days, but we had had such a schedule of events one after another. As that thought was running through my brain, I was startled by the vibrating cell phone in my right pants pocket.

I spun around to find the kitchen towel, which conveniently hangs on the handle of the oven door; however, it wasn’t there. My hands were still wet, and the phone vibrated again. I felt rushed, and said disgustedly, “Why is the towel never where I leave it?” My tone made Gracie turn her face toward me. “It’s right there Mommy,” she said while pointing her finger.

I dashed toward the towel, ran my right hand over it, and then dug my fist into my pocket. The phone vibrated in my hand again just as I was about to flip it open. I noticed the display identified the caller as my good friend, Tante, who was bed resting waiting for a safe time to deliver her twin daughters. I answered the phone with, “Hey Tante.”

She said, “Hi Jen. How are you?”

“Fine. Fine. How are you? How was your appointment today?”

She sighed, and blurted out, “I lost Baby A.”

Shocked, I said, “What? What happened honey?”

“There was no heartbeat. When I went to the appointment, the doctor tried to find heartbeats on both of the babies. They couldn’t find it with the Doppler so they had to give me an ultrasound. She’s gone.”

“Oh my God, Tante. I’m so sorry this happened to you. It isn’t fair. I’m just so so sorry honey.”

My face and tone must have said it all because suddenly Charlie put his hand on my arm. He mouthed, “What happened?” I cupped my hand over the receiver, and whispered, “Baby A is gone.” He frowned and furrowed his brow as I walked out of the kitchen so I could talk more openly with her. It was certainly a shock.

Tante said, “She was bigger than Meghan. She was 1 pound, 10 ounces.” This sent “shockwaves” through me. She lost her precious baby girl, and that reminded me that it could have easily been Meghan. Meghan was 1 pound, 9.5 ounces. When we were in the NICU, there were several preemies who became angels, and I will never ever forget them or their parents. I vividly remember the days those babies left the NICU. I wanted to vomit, and prayed like crazy for a miracle for my baby. It felt selfish, but I couldn’t help it.

I’ve always known how incredibly lucky we were with both of our girls, but the juxtaposition of Tante’s daughter and Meghan was undeniably horrible and vivid. Why in the world would Tante be denied her precious cargo, and why would I be given such a gift and blessing in little miss Meghan? Why?

Essentially, the shock of the news made me forget the rest of the conversation and its sequence. It is hazy. I know I said I’d pray for her and both the babies, and must have said a dozen times that I was just so incredibly sorry. Tears were pooling in my lower eye lids and beginning to splash down my cheeks. I let out one inhaling sob while I was speaking with her. I felt bad for letting my grief for her bubble up so easily.

I guess my own traumatic pregnancy and birth experiences are still quite fresh in my reality. She quickly decided that she needed to hang up. I know it wasn’t me who was giving her the profound sadness, anger, and bitter reality, but I didn’t want to add to her fresh grief.

In any case, I did feel quite honored that she called me shortly after learning the news. That may sound strange in all of this, but Tante was such a source of encouragement, love, and understanding with Grace and Meghan. I’ve always wondered how I could possibly “pay it forward.” This is an opportunity to do that but dang it, I wouldn’t wish this on anyone. She does not deserve this. I’m angry, frustrated, sad, and raw about it all. In its simplest truth, this is simply unfair.

I pray that tomorrow will reveal some of the goodness of life again. I know it is there, but it is masked for today. If you have any spare positive energy or prayers, please send them to Tante who is fighting for the life of her other baby girl, Little Miss B. I can’t imagine what is like.

Saturday, December 01, 2007

Three Generations

How many is this?

Meghan's latest fun includes a new game that she just adores playing. It is called, "How many is this?"

She plays it at least 5 times a day lately. Personally, my adult brain is so over this game, but my mommy brain is so pleased to see her emerging into a bright, young learning preschooler. :)



Decorating the Tree

"Mommy! Mommy! When can we decorate the tree?"

"Grace, I told you that we'll be decorating for Christmas next weekend after Tante's baby shower. If we put the tree up, there won't be enough room for all of our guests to sit in the living room."

"Oh yeah, I forgot."

A little while later, I walked into the living room. Grace skipped into the room, and said, "Mommy, how do you like my tree?"

I looked around the room and was confused.

"What do you mean Grace?"

"Here Mom! Look at my beautiful tree. I decorated it."

"Oh, it is gorgeous, Gracie. You really want to decorate, don't you?

"Yes. Yes. Yes, Mommy!"

She certainly has the Christmas spirit in her. :)




Mommy, I drew your picture!

Meghan ran up to me, and said, "Mommy! I drew your picture."

Upon close inspection of the portrait drawn on a Doodle-Pro, I saw what appeared to be a fish. I thought, "Hmm, I think I'll ask her to point out what is what in the picture."



"See here mom! This is your head. Here are ya eyes and mouth."

As I pointed, I said, "Meghan, what is this on the right side of my head?"

"Uh, dats your butt Mommy!"

Guess I'm all head and backside these days. LOL

It's Been a Hard Week

It's been a hard week so I'd like to share some more lighthearted posts. My heart is breaking for some people I love.

Wednesday, November 28, 2007

In Memory of a Beautiful Angel

Just yesterday, I read this on a blog of a Preeclampsia Survivor who lost her 22 week twin sons. I love this sentiment.

The Buddhists believe that babies lost before they live are souls that have already taken many turns on this earth, and they have already endured all the suffering they needed to. They merely needed to touch on this earth one last time long enough to be loved, and they get to stop being reincarnated and go straight to Nirvana.

We love you Tante.

Wednesday, November 21, 2007

Happy Birthday Mom

Today is my mom's 58th birthday. I hope you have a great day Mom. Love you and miss you.

Monday, November 19, 2007

Happy Birthday Jen

Happy 35th to my oldest, dearest friend. I miss you.

My Refound Love

When I was a child in the early years of grade school, I was quickly labeled as a "slow learner." In fact, my kindergarten teacher wanted to hold me back a year, but my mother refused. I remember seeing her face as she emphatically told Mrs. Johnson, "She is ready. We are not holding her back."

I didn't quite understand what was going on, and actually thought it would be lovely to stay in Mrs. Johnson's room. She was a very kind, nurturing teacher who had a "grandmother-like" quality to her. I loved getting hugs from her. In any case, I made the move into first grade at the age of 5. Yes, I was young. My birthday was actually five weeks before the December 1st cut off date though. Still, I started first grade as a 5 year old, and yes, I had peers who were up to 1 1/2 years older than me.

As I reflect on that using my adult perspective, I think that I should have been held back. Essentially, I was immediately put at an age disadvantage in first grade. I often wonder if I had stayed another year in "warm and fuzzy" kindergarten, would I have received the "slow learner" designation? I'll never know, but what I do know is that my early start to learning helped shaped some of my misguided notion that I'm not intelligent.

Reading and writing came very (is there a way to stretch that word out?) slowly for me. In third grade, I finally got it. Before then, I remember taking my dad's paper back novels and reading the word "the" over and over again because it was a word that I could read. It made me feel good to know I could read it, and often times, I underlined the word "the" over and over again in Dad's novels.

In any case, I was often a child who was in her own world. It took me several years to understand that I was a "slow learner." Fortunately for me, my kindergarten teacher had recommended a private school which had specialized education. Upon enrolling in Saint Bernard's school, I was given an individually guided education plan. This plan allowed me to learn at my own pace in my own time. I thrived in that until the school dropped the format. Then, and only then, did I realize that I was dumb, stupid, slow, or whatever pigeon-hole in which my classmates placed me.

It was a harsh realization. Thank God I received a teacher in the seventh grade who saw something in me. Miss Reeseman noticed that I could "express myself." I was confused by what that meant, and often times, I was lost when she would force me to designate a piece of writing as literal or interpretive and then prove my hypothesis. I struggled and struggled with it, but she kept pushing and pushing and pushing me. "I know you can do this, Jenny. You can express yourself." She even made me enter a local writing competition, and low and behold, I won. The Daughters of the American Revolution loved my essay on the Statue of Liberty. My Grandpa 'Mood was so proud that I won too. "Darlin' did you know that you could be a member of the DAR?"

Miss Reeseman discovered my writing abilities, and as I grew up in high school, I began to take more and more writing classes. Grammar became my friend. Well, sort of.

I earned a specialized degree in journalism in college, and then promptly started writing my heart out as a professional technical writer for a financial services company. Somewhere in leaving college and beginning my work life, I lost creative writing. I don't know why. I guess it was all those exciting user manuals and online help I was writing. LOL

Then in 2004, my daughter Meghan was born 13 weeks too soon. I began my first web journal to document the comings and goings of Meghan's life in NICU. I painstakingly began to document what was happening to her because it was all that I could do while others saved her life. In those early "blogging" days, I began to let little bits and pieces of me come out in those posts. It was a freeing experience. Writing was cathartic.

Soon, I decided to create a different Caringbridge page where I would write about the girls' journey with Alpha-1. That too brought out more and more of my own observations while documenting the achievements and milestones of Grace and Meghan. Eventually, I started this blog, and now I feel very much at home here in my little corner of cyberspace.

This weekend, someone asked me why I blog. "You write all that stuff for strangers." My first thought was that this person should read my blog to understand. My answer was this:

I blog to be creative, to feel a part of a larger world, to make myself feel better. Writing is a part of me. I cannot separate it from myself. It is an integral part of me and my self-esteem.

Thanks Miss Reeseman. I'll never forget the gigantic impact you made on my life even though I did forget your first name.

Friday, November 16, 2007

Remedial Parenting?

Meghan toddled out of her room, and came up to my side of the bed. "Mommy, it is morning time. The sun came up."

"I know Meghan, but Mommy is still very sleepy. Come up here with me so we can snuggle?" She grabbed a hold of the comforter with both hands and hoisted her foot up on the wood slat, which holds the head board and the foot board together. She tumbled onto my knees and crawled up to Charlie's pillow. Her polar bear "feety" pajamas were chilly since Meghan hates to use blankets at night. She doesn't like to feel constricted.

Meghan wispered, "Mom, can we watch the exercise lady?" (Meghan enjoys watching a woman on PBS who does yoga.)

"In a little while Meghan, Mommy doesn't want the TV on yet."

"Where's Daddy?" she inquired.

"He is downstairs making your lunch for today."

"Oh," she replied. I pulled my blankets up to her chin to warm her up. We snuggled together, and it seemed to me that the day was starting out very nicely. Meghan slurped her thumb and used her index finger to stroke circles around the tip of her nose.

My alarm clock rang, and I reached to the side of my bed to turn it off. I grabbed my glasses and placed them on my face. My fuzzy bedroom suddenly appeared with clarity. I switched on the TV, and the exercise lady's soothing voice came into the room.

My day was beginning, and the count down to leaving the house began. Meghan continued to lounge in my bed, and Charlie delivered a cup of milk to Grace in her bed. She has sucked down six ounces every morning since she was a toddler.

After getting ready, I walked into the girls' room. "Grace, do you want to get dressed first?"

"Uh huh, Mommy."

"Okay Grace. Please take your pajama top off, and pull off the band-aid on your owie." (Grace is still receiving treatment for her suspected MRSA infection.)

Whining came forth from Grace. "I don't waaaaaaaannaaaaaa take my band-aid off." She huffed, folded her arms, and frowned.

Tick, tock...time running out.

"Gracie, it is time to remove the band-aid so I can put more cream on it. You and I had a bad morning yesterday. I don't want another one. C'mon. Take the band-aid off or I will."

She folded her arms again, "No! I don't want to!"

I began thinking, "Fabulous. This is great. Oh, I'm having so much fun already."

"Gracie! 5, 4, 3, 2, ... 1." Grace began to take her pajamas off, and I walked into the bathroom to get the antibiotic cream. I grabbed the tube, a Q-tip, and a fresh band-aid.

Tick, tock...time running out.

When I returned to her room, I noticed that Grace's pajama top was hanging like a hoola hoop around her neck. There had been no further progress while I was gone. Frustration began to rise up within me.

"Grace! I asked you to take your pajama top off and take that band-aid off. I guess I'll have to take the band-aid off for you."

"Nooooooooooooooooooooooooooooooooooooo. She jumped off her bed and bolted to the other side of the room."

"Grace come back here. We are going to get dressed now. I do NOT want to fight with you this morning. We had a bad morning yesterday, and I will not have that again. I will NOT!"

Tick, tock...time running out.

She sheepishly shuffled her feet along the hardwood floor toward me at what seemed to be a snail's pace. "Now Grace, not tomorrow. Now!" Anger began to rise up within me. She sat down on her bed, I dressed her wound, and then I essentially dressed her, the 5 year old. I was watching the clock and thinking that I was not going to be late to work again...not again! It was already beginning to spiral out of my control though.

I didn't want it to happen again. The day before I had been reduced to a screaming, yelling shadow of my former self. I grew up with yelling, and my ideal parenting style would be a calm, firm tone. I began with that approach, but mornings are not my best time. I'm raw and unrested most of the time. I don't sleep well. The muscles in my neck and back are knotted, and emit pulses of pain for nearly an hour until I can warm them up. When I was in college, I was told I had fibromyalgia. Grace and Meghan don't understand this though. Sometimes, my husband doesn't even quite understand although he offers to rub my shoulders quite often. Too bad I hate back rubs. The toxins in my knots are released during a massage, and then I feel like crap for days. I'd rather have knots.

Tick, tock...time running out.

In any case, I managed to get Meghan dressed without much difficulty. She had toddled back into the girls' room, and parked herself in a child sized stuffed chair that Grace received for Christmas one year. Grace was sitting in another chair with her mouth agape watching Sesame Street on the television.

I left the room for about 10 seconds to put water on Grace's hair brush. As I turned around to leave the bathroom, I heard, "No MEGHAN! No MEGHAN! Leave the TV on!" The TV clickd off, and Grace's "world" came to an end. Oopps, I mean my 5 year old completely overreacted.

I commanded, "Meghan Rose turn the TV back on and sit down!"

"I don'ttttt wantttt toooo, Mooommmmmy!" Meghan protested.

"Guess what Meghan! Mommy is now fuming mad. Turn it on now, or you're in a time out! 5, 4, 3, 2, 1" Surprise, Elmo began squaking in the background.

"Girls, you are going to be good listeners. You ARE going to be good girls. You ARE going to do what I say. Mommy is in charge here. You are NOT!" I thought, "Oh man, here I go again. Here comes Darth Mommy! You know her. The mommy who normally is a sane person, who can have normal adult conversations, who can multitask, who doesn't care what others think, who isn't swayed by silly childish inclinations, who can command others' attention without yelling, screaming, or protesting loudly...especially not the screaming mimi, Darth Mommy. No, not her!"

Tick, tock...time almost out.

"Mom, Meghan is smiling at me. She is happy she turned the TV off! Mom! Meghan needs a time out. She is teasing me! Mom!" Frustration, anger, and loathing of my children sprang forth my mouth. If you had been an observer of the morning's events, you might not have understood why I was erupting like Mommy Vesuvious. It was the cummulative effect of many weeks of non-listening children, refereeing, negotiating, nagging, separating dualing duos, and just overarching disdain for the same crap day in and day out.

"OK! THAT IS IT! I'VE HAD IT! LISTEN UP! I WILL NOT TOLERATE ANYMORE OF THIS BAD BEHAVIOR! I WILL NOT! I WILL NOT HAVE BAD CHILDREN! I WILL NOT! YOU WILL LISTEN TO ME NOOWWWWWW!" Ut oh! There she was again, Darth Mommy...evil incarnation of Do Gooder Jen. "I WANT SILENCE! NOT ANOTHER WORD! NOT ANOTHER WHINE! NOTHING! I WANT SILENCE! You WILL go with me downstairs. You will put your coats on, find your mittens, and get your backpacks. YOU WILL not push! You WILL NOT fight anymore! You will NOT SAY ANYTHING! NOTHING! YOU HEAR ME?"

The both blankly stared at me, and Grace said, "Uh huh."

Tick, tock...now, we're late.

As we descended the stairs to leave the house, Grace hurried to be the first one out the door. She is forever trying to be the first to do anything. It is driving me a little nutso because she can be quite ruthless about being first. Meghan has been knocked down in the process several times.

"I WANT TO BE FIRST! I WANT TO BE FIRST!" Grace chanted as we approached the back door.

I replied calmly, "There are no firsts or lasts in our house. We all go together. Nobody wins. Nobody loses. Nobody is first. Nobody is last. We go together."

What Grace heard was probably something to the effect of, "Blah, blah, blah, blah. Blah, blah, blah." She stuffed her arms into her coat's sleeves, and promptly morphed right into a tantrum because her zipper would not cooperate. Her face turned red, and the whining began, "I caaaaaaaannnnnnnn'ttttt doooooooooo this! My zipper is stuuuuuuuuuuuccccccccccccckkkkkkkkkk Mommy. I DON'T WANT to wear this coat! I want my purple coat. WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!" As Grace was whining, Meghan began taunting Grace with, "Gracie is a poopy pants! Gracie is a poopy pants! Gracie is a poopy pants!"

"Grace, USE YOUR WORDS! Meghan, if I hear you use potty talk one more time, you'll get a time out!" I shouted.

"WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!" continued forth from Grace. Meghan had now folded her arms in protest, and was chanting, "I DON'TTTT WANNTTT a TIME OUTTTTT! I DON'TTTT WANNTTT a TIME OUTTTTT! I DON'TTTT WANNTTT a TIME OUTTTTT!"

Tick, tock...we were now 10 minutes behind schedule.

"C'MON GIRLS! Get your coats on, find your mittens and hats, and let's go! We're late! Let's go! Let's go!" I said with exasperation. Yep, they did it. They sent me over the edge of reality. I now sounded like them. I was yelling, screaming, and just basically reduced to a puddle of nonsense because I was so angry.

I commanded silence from my peanut gallery again, and we walked out the back door. Grace pushed past Meghan to be first. Meghan whined at Grace. I inhaled the crisp morning air deeply, hoping that I'd find my inner strength to make it Meghan's preschool and Grace's kindergarten without ending my childrens' lives first. I felt sure that I was slowly going insane. That my daughters' mission in life was to make me insane, and it was working.

Tick, tock...

When we got into the mini-van, Grace hopped into her booster seat in the third row. Meghan noticed this while standing next to her second row seat, and began whining, "I WANTTTT TO GOOOOOOOOO IN THE BACK SEAT! I WANT TOOOOOOOOOOOO!"

Darth Mommy replied, "NO WAY MEGHAN! I DON'T HAVE TIME TO MOVE YOUR CAR SEAT RIGHT NOW. WE ARE LATE! I DON'T HAVE TIME! WE ARE LATE! GET IN YOUR CHAIR NOW!"

"NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!" Meghan choked and sputtered and gagged on the large lump forming in her throat.

"DO NOT THROW UP MEGHAN! DO NOT! I WILL NOT DEAL WITH PUKING THIS MORNING! I WILL NOT!" I screamed. (Ever since Meghan was intubated in the NICU, she has a very strong gag reflex. Whenever she gets remotely upset, she pukes.)

At this point, Grace began to whine. Her frustration with her winter coat was winning. She didn't like how the coat felt underneath her seat belt. "IT'S TOOOOOOOOOOOOOOOO TIIIIIIIIIIIIIIIIIGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHTTTTTTTTTT! It's too tight! Mommy, can I take my coat off? Can I take my coat off?" she pleaded.

"NOOOOOOOOO! ABSOLUTELY NOT! WE ARE LATE! I AM NOT PUTTING IT BACK ON YOU! You have to deal with it. It is a short drive. Deal with it!" I commanded. I put the mini-van into reverse to leave the garage. Both the girls cried the entire way to Meghan's preschool. I was fuming and extremely short tempered. It was beginning to feel like the morning would never come to an end. I just wanted to get to work.

I dropped off Meghan. Grace and I got back into the mini-van, and she promptly started in again about her coat. More whining, crying, and general annoying behavior came forth from Gracie. By this time, I had had it. I was done. Kaput. Over. Complete. Finished.

As we drove to Grace's school, I let out a primal scream, "I HAAAAAAAAAAATTTTTEEEEE MORNINGGGGGGGGGGGGGGGGGGGGGG! I HATE ITTTTTTTTTTTTTT!" Grace wasn't phased by it all. She just kept whining about her coat. We finally arrived at her school, and I took her into the before school day care room. Her cheeks were red and tear stained.

Remorse began to bubble up inside of me. Tears filled my eyes. I felt completely insane, and embarassed at what I had said to the girls. I was nuts. I didn't mean anything I'd said. I couldn't believe I had treated my precious blessings that way.

Grace's eyes said it all. She was scared of me. She was hurt by my words and actions. I squeezed her into a tight embrace, and said, "I love you Gracie. I'll see you after school. Have a good day."

She replied, "Hugs and kisses Mommy. See you after school." She began to cry a bit, and I said, "Gracie, let's have a better day now honey. It's okay. We're okay now. I'm sorry."

As I left the school and walked toward my mini-van, tears filled my eyes again. I cried most of the way to work.

Things have to change. I can't keep doing this. I'm better than this. I think I need remedial parenting or something. I know that most parents have been in similar situations, but I feel like a gigantic heel.

Tick, tock...45 minutes late to work.

The Road to the Cure...

This article will be published in the next edition of the Alpha-1 Association's Alpha-1 News. Enjoy this advanced preview. Copyrights apply.

The road to a cure for Alpha-1 just became a little more enlightened. Dr. Jeffrey Teckman, Associate Professor/Director of the Division of Gastroenterology & Hepatology at Saint Louis University, recently published a groundbreaking research study in the journal Hepatology. The title of that study, Alpha-1 Antitrypsin Mutant Z Protein Content in Individual Hepatocytes Correlates with Cell Death in a Mouse Model, might seem a bit daunting, but rest assured Dr. Teckman’s clarity about his research shines through.

Dr. Teckman’s research team has a goal to figure out how the liver gets hurt in Alpha-1 Antitrypsin Deficiency. Essentially, experts have known that the build up of the Z protein in the liver is what damages the liver. This knowledge was built off of experiments that were conducted in vitro, also known as cells in a dish.

Dr. Teckman clarified, “That is useful, but it is a long way from a cell in a dish to a liver because in a dish, all the cells are the same.” Dr. Teckman wanted to take a big step forward and move that knowledge into an animal research model. Applying theories using animal research models is a critical step of research aimed at finding a cure for Alpha-1. Dr. Teckman further clarified, “In the liver, there are many different types of cells, and the cells are arranged in a very complex arrangement. Those may be important factors that are difficult to model just in a dish.”

Dr. Teckman’s team worked for the last four years to answer questions about how the Z protein causes damage in the liver. He added, “Part of the way that cells die is a process called apoptosis. That is a common way for cells to die, but the problem was that we couldn’t figure out why the whole liver just didn’t die. Because there is a lot of Alpha-1 in the liver, we focused our study on answering questions such as: Are liver cells dying because of apoptosis? And if they are, why doesn’t the whole liver just die from apoptosis? How could we understand that?”

Dr. Teckman shared, “And so it turns out that within the liver, the build up of the abnormal protein is very heterogeneous. So some cells build up very large amounts, and some cells don’t build up any. The liver cells with the most Alpha-1 tend to die from apoptosis; however, certain cells seem to detect the buildup of Alpha-1. Those cells “decide” to try to stay alive. That process works well. There are only a small handful of cells at any one time that are having trouble, and it is this very slow turnover of cells in the liver which make this disease slowly progressive in most people.”

So in finding answers to those questions, Dr. Teckman’s team formed more questions that need answers. “It is 5-10% of Alphas, who seem to have trouble, and then the other 90% do fine. We still need to figure out the differences between the group who does fine and the group who doesn’t. With this study, we are beginning to understand about the 90% who do well. This study isn’t the final answer though. We think this an important step on the way to finding the final answer, and especially for developing a kind of a flow chart for how the liver gets hurt. That allows researchers to investigate every arrow in the chart, and figure out a medicine that could block certain “arrows” in the chart.”

Dr. Teckman envisions this for the future, “Now we are trying to understand the liver cells that have the large amount of Z protein build-up. We are trying to determine what that build-up might mean in terms of developing liver cancer. We are also trying to test drugs that would block the build up of abnormal protein so we can hopefully take some of these drugs we are testing in animals and then try them in humans in clinical trials.”

The research sounds very promising. Dr. Teckman added, “Well, we hope so. It takes time and money to fund research. That is why we need to increase funding into Alpha-1."

Dr. Teckman's study was funded by the National Institutes of Health (NIH) as well as the Alpha-1 Foundation.

Thursday, November 15, 2007

Life Insurance

Neither of my children can obtain life insurance. Well what I mean is that I have not been able to obtain life insurance on my children. They've been flat out denied because of their Alpha-1 Antitrypsin Deficiency.

I know that this can be a morbid subject for some people, but I've faced the idea that my children's lives are not guaranteed. Yes, I hate to even write that down. If I lost my children, I'm pretty sure I'd curl up in a ball somewhere and never emerge again. My only hope for life insurance policies for my girls would be to pay for funeral expenses. Money could never ever replace them or begin to soothe the emptiness I'd feel.

It has always bothered me that Gracie and Meghan won't be able to take advantage of the benefits of life insurance, though. I've even asked insurance agents if they'd write a policy that would cover my girls only if they didn't die from anything related to a complication of Alpha-1. Nope. Nada. Nothing. Denied.

Recently, my company went public. We have a new benefits package now. It includes dependent life insurance without proof of insurability. Voila! Kesa, Grace, and Meghan now have life insurance. Wow, how did that happen?

Wednesday, November 14, 2007

Interview with an Alpha-1 Expert

On Friday, I had the opportunity to interview a man helping to find answers for how Alpha-1 damages the liver. He is Dr. Jeff Teckman, and I've gotten to know him as an acquaintance through my volunteer work with the Alpha-1 Association and Alpha-1 Foundation. It was an enlightening experience in that I got to better understand how the true process of research happens, but then I had a realization.

Research takes years and years of trial and error. Successes are often fleeting or just out of reach. In talking to Dr. Teckman, I learned about in vitro research, which is based on cells grown in a petry dish. I also learned about in vivo research, which uses animals or humans. His latest publication was based on a well known assumption that the build-up of the Alpha-1 Z protein in the liver cells causes damage. He took that theory, which was proven with in vitro research and applied it to a mouse-based model. The mice in his study displayed that Alpha-1 liver cell damage is very heterogeneous. Some liver cells display damage, and some don't. Why this happens to some cells and not to others is still in question. Dr. Teckman and other Alpha-1 researchers are working hard to figure out the reasons.

My realization often comes in the form of small spurts of inner panic.

Panic for what might happen.

Panic for what will happen.

Panic for what I can not control.

After all, I want to do my job as Grace and Meghan's mommy. My job in life is to protect them from harm. Alpha-1 is the big, bad monster from which I can't protect them. It may harm them. It may not harm them.

I have to have faith. That is a hard thing to acknowledge sometimes. I have good days where Alpha-1 doesn't get a moment's thought, and other days, I immerse myself in a sort of quest for more knowledge of Alpha-1.

The interview with Dr. Teckman was both exciting for its reveal of possibilities, and a let down in that the elusive cure is not coming soon enough.

Until then, I pray and help to guide the girls into their lives including, but not limited, to Alpha-1.

When I receive Dr. Teckman's approval of my story, I'll post it here.

Tuesday, November 13, 2007

Prematurity Awareness Month



November is Prematurity Awareness Month.

A little more than 5 years ago, I learned that my first baby would be born too soon at 34 weeks gestation. My precious cargo, Grace Ann, had to be born 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 overall in kindergarten. Can she really be 5 already? Wow! I'm eternally grateful for Grace and the wonderful neonatal care she received.

A little more than 3 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 because I developed preeclampisa 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 still contends with issues related to her prematurity, too. We're happy she is growing, albeit ever so slowly, but she is happy and quite the character. Way to grow Meggie. :)

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

Sunday, November 11, 2007

Saturday, November 10, 2007

Laternenacht

I slid the door of the mini-van closed, and as I turned around, one of the lanterns slipped a bit in my hand. It was Laternenacht at Grace's school, which is a politically correct version of Martinstag, a German holiday celebrating Saint Martin and his good deeds.

I readjusted the lanterns in my left hand, and I took Meghan's mittened hand in my right hand. Grace grabbed my left elbow, and we shuffled along toward the school. As we walked along, children swung their lanterns back and forth as their parents reminded them to be careful.

"Mommy, I want my lantern on!" Grace protested.

"Sorry Grace, we'll turn it on when we get inside the gym. Hurry with me. We're a little late, and the program is starting."

We walked through the glass-paned front doors of Grace's school. The main hallway was teeming with parents and children. Some parents were still trying to buy their children lanterns to use in the procession around the park later. I kept hearing, "I want that one!" from various little helium voices. Laternenacht was a big deal for these grade schoolers. They had been preparing with their teachers for weeks by making lanterns and practicing the traditional German songs such as Laterne, Laterne.

Last year, we had missed Laternenacht because Gracie was incredibly sick with a stomach virus. I wasn't sure what to expect. We finally squeezed past the table where the lanterns were being sold, and quickly proceeded to the gym.

"Stay close girls. I don't want you to get lost in here."

The lights were down in the gym except for the backlighting on the stage. A "high tech" overhead projector shone onto the screen. A blurry song form appeared. I couldn't make out any of the letters. Four parents were standing on the stage, and each held various instruments readied for the sing-along.

"Mommy, I want to turn my lantern on." Grace said again.

"Go ahead Grace. Let's take your hat and mittens off."

The folded accordian-style paper of her lantern light glowed. It was a traditional style German lantern in the shape of a ball. Two round metal wires held the ball together.



Families were packed in like sardines in the gymnasium. We sat down on the floor.

Just as we were sitting down, a young boy bumped into Meghan. She fell directly onto her paper lantern. It ripped in half. Grace promptly began to cry because she thought it was her lantern.

"Gracie, this is not your lantern."

"Oh." She turned around, wiped the easily formed tears from her eyes, and turned her lantern off and on several times.

"Mommy! My lantern is smooshed," Meghan whined.

I wispered, "I know Megs. Mommy is going to fix it for you." I dug around in the pocket of my slacks, and found a small black binder clip that I brought along just in case the mechanism on which the lantern was perched failed. I felt rather MacGyverish because it worked perfectly to keep Meghan's lantern together. I thought, "Yay me!"

The sing-along began, and Grace's prowess of her Laternenacht songs came shouting out of her. She was in heaven. The songs flowed easily out of her memory, and her voice matched the tune perfectly. A mom sitting in front of her turned around smiling. Gracie was clearly shouting songs in her ears, but that mom didn't seem to mind.

Ich gehe mit meiner Laterne, Laterne Laterne, Der Herbst ist da all were sung by the children. Some of the parents are native Germans, and it was clear they were reminicing about their childhood Martinstag memories. Lots of smiling faces were reflected in the glow of lanterns.

The program was entirely auf Deutche, and only lasted for 10 minutes. I was glad because the gymnasium was beginning to swelter. Meghan attempted to sing along, but didn't know the songs yet and as a result, became quite bored. She shifted and poked her lantern. A couple of times, she smashed her lantern into my face. My patience was slowly eroding. Thank goodness for short programs, though.

With what seemed like an abrupt halt, all of the families streamed into the main hallway of the school again. We proceeded East toward the playground exit. As I stopped to take a picture of the girls with their lanterns, I heard, "Gracie!"

I turned around, and there was Grace's best pal, Zoe. Her pink, piggy lantern glowed in her hand. Zoe's brother, Sam, was on his dad's shoulders. His Winnie der Pooh lantern glowed in his hand.

"Mommy, I want to go with Zoe," Grace whined.

"Alright Grace. We'll catch up to them. Now smile please." I snapped the picture, and we walked out the playground area doors.





As I inhaled, I started to cough since there several moms who had lit their cigarettes just outside the school doors.

Out of my mouth came, "Oh gross! Who is smoking?"

A response came out of the darkness, "I'm so sick of people telling me I can't smoke. C'mon. I am outside!"

I thought, "Yeah, just outside the doors of a school, where you know people are bringing their children to join the Laternenact procession. You can't wait another half an hour to get your fix, huh?"

I kept walking with the girls, but said loudly, "I have 2 children, who have a genetic disorder that doesn't allow them to be exposed to cigarettes. It is a huge deal when someone smokes around them even if it is outside. A little bit of their lung function just got damaged from your addiction."

No reply came forth, and we ran ahead to get away from the smoke. My inner evil side thought, "What a hag!"

"Why are we running Mommy?" Meghan huffed.

"To catch up with Zoe and Sam and to get away from the cigarette smoke."

Grace found Zoe, and they held hands. As they walked along, their lanterns glowed and bounced in cadence with their steps. They began singing, "Ich gehe mit meiner Laterne..."

It was a crisp fall evening, and leaves crunched under our feet. I held Meghan's hand, and she would periodically shout toward Sam, "Hi Sammy!"

It was our first Laternenacht but will be one of many we'll attend in the coming years. Time is speeding up as my girls go full speed into their school years. I soaked in the memories as I'm sure I'll eventually reflect on nights like Laternenacht as some of the best of my life.

We reached the end of the procession, grabbed our cookies, and piled back into the mini-van as it was now close to bedtime. Ah to be a kid again...

Party Bugs Update

Grace is definitely allergic to Bactrim so no more of that ever again.

We kept her off any antibiotic for 48 hours, and the pedi started her on a powerful ointment to be applied to her wound twice per day. He wants us to call on Monday to report on the progress. We'll see what happens.

Wednesday, November 07, 2007

When It Rains...

It pours...

Gulp. My child is one of the children that most people in my city would fear. She has a staph infection that may be MRSA, but hasn't been cultured. She is taking antibiotics for it, and we keep it covered. We wash our hands, and we encourage her to wash hers often. Even with all of that prevention, she still got a huge staph infection. I don't know why. She just did.

Last night, Grace said, "Mommy, it feels like there are bugs biting me on the inside." She pointed to her back near her right kidney. I didn't think much of it at first since Grace is often in sensory overload, but I did tell her that if the "itchies" got worse to come find me in the night.

"Okay Mommy." Her sleepiness must have overruled the "itchies."

In the morning, I gave her 2 teaspoons of Bactrim as prescribed without thinking much about those "itchies." When she came home from school, the tops of her hands were flaming red sort of like a sun burn. I knew the drug made her photosensitive, but she claimed that she was wearing her mittens on the playground.

At dinner, Grace said, "Mommy, I'm really itchy." She scratched the sides of her torso up and down and said emphatically again, "I'm itchy!"

A light bulb turned on inside of me.

"Crap, she must be having a reaction to her Bactrim. Crap!"

I turned to my husband and said, "Great. Now, we have to take her to the doctor for a third time in two weeks." Don't misunderstand me though. I have no problem taking her to the doctor, but I feel like Gracie can't catch a break here. It really can't be fun to take antibiotics all the time.

MRSA, hmmmm?

Monday, November 05, 2007

Party Bugs

When Grace was two years old, she developed a pretty high fever which scared me quite a bit. It was the first time I had seen her get so incredibly ill from a virus. She was beginning to really understand what was happening to her then, and that day, I began, what I think will be, a life long journey of helping Grace to understand the world around her.

I don't recall the exact conversation anymore, except for two words that sprung forth from my explanation. At that time, my inexperience as a parent was giving me much to ponder. I was literally stumbling over my words with her, all while Grace was suffering from a 104 fever.

Grace kept asking me why she didn't feel well. She wanted to know why, to get it, to understand. Gracie's fever made her more adament than ever. She was determined to know what the heck was making her feel so bad.

I struggled to come up with something to appease a two-year old. I hemmed and hawed and even thought that Grace might be delirious.

The final result was that I explained to Grace that there were "party bugs" having a dance party inside of her, and she needed to take her medicine to kick the bugs out.

This explanation has transcended her current state of knowledge. We mention party bugs frequently in our house now.

Recently, some nasty party bugs took up residence inside of Grace. I'm worried about it, but hoping that things turn out for the best.

I took Gracie back into the pediatrician today because the "boil" on her collar bone had become angry looking, had grown larger, and a tell-tale halo of infection was beginning to appear again. The pedi thinks it may be MRSA, Methicillin-resistant Staphylococcus aureus. He didn't culture the infection though. He wants to see if the bacteria responds to a drug in the sulfa family first.

She began taking Bactrim tonight, and after her shower, her wound opened up. The party bugs erupted from their house inside of her, and hopefully, this is the beginning of her healing.

"Mom, are the party bugs getting kicked out by my new medicine?"

Isn't she so smart?

Tuesday, October 30, 2007

Diva Ballerina

Ever have one of those parenting days that just sets off the most ridiculous scenarios? I know I had one last year at Christmas time when Norovirus made its way through our household.

Michelle at In The Life of a Child wrote this laugh out loud mama post recently. Enjoy her Diva Ballerina!

http://inlifeofachild.blogspot.com/2007/10/groceries-diva-ballerinas-and-things.html

Monday, October 29, 2007

Curve Ball

As I walked down the long hallway of the school, Grace plopped her hand into mine and started swinging our arms back and forth. She was skipping, and I was shuffling along side her.

"Let's see if Tante is in her classroom today," I said.

I stuck my head inside the door of her classroom, but Tante wasn't there. Grace hopped up and down beside me as she usually does before school. As I backed up to re-enter the hallway, I noticed two figures toward the end of the hallway. I recognized their profiles: Melissa's tall thin figure and Tante's belly was in its telltale form. There was no mistaking her pregnant figure...all out in front. I smiled as Gracie said, "There's Tante!"

Tante responded, "There's my Gracie!"

Melissa said, "Good morning Grace." as she turned around and walked down the hallway toward her classroom.

"I need my hug, Gracie!" Tante added.

As Grace wrapped her arms across Shanna's belly I said, "Big day today."

"Yep. Today's the day."

Later that day, Tante would have her 20 weeks ultrasound, where they would find out the sex of the twins.

"Well Gracie, we better get you into the gym (for her morning before school care)." I instructed. Grace ran off toward the gym, and we exchanged our morning hugs and kisses before I went off to work.

When I left the gym, Tante had gone somewhere else. I was excited for her, but began to focus on getting to work on time.

*****************************************************************

I had very little sleep the night before, and later that day, left work early. I was home before my girls and Charlie were. I was taking advantage of the quiet and had snuggled into my bed to grab a nap. I had just drifted off when I heard a loud buzzing sound. It startled me awake.

I finally determined it was my cell phone vibrating on top of my jewlery box. I grabbed it, and said "Hello."

"Hi Jen. Where are you? Work?" Tante asked.

"I'm at home. I came home early."

"Oh. Can I come over? I'm only about a block away right now."

"Sure." I responded sleepily and then I hung up the phone. "Gee, she sounded happy. I wonder if the twins are boys or girls."

I came down the stairs to the first floor of my house, and surveyed the gigantic mess which had accumulated over one weekend of me needing to work extra hours. I laughed and thought, "Oh well. She knows us very well."

I peeked out the window of my front door, and saw her silver car pull up. Tante got out and waddled up the front walk. She had a serious look on her face, and it made me nervous instantly. Having been on the receiving end of pregnancy complications twice, my "oh crap" radar went off inside my head. I was hoping I was wrong.

We sat down at the kitchen table, and I immediately asked, "What's up? What's going on?"

Tante sighed deeply, "I have twin-to-twin transfusion syndrome."

There it was...the "oh crap" moment I was hoping wouldn't happen. My dear friend had wanted to be a mother ever since we had shared an apartment as bachelorettes in 1996. She had some odds stacked against her in getting pregnant, and miraculously, it hadn't been an issue for her and her hubby. She was so excited, but very "morning" sick very quickly in the pregnancy. In fact, when she had her first ultrasound, and it revealed two babies, Tante being very sick made a lot of sense. Twins bring on lots and lots of HCG, which amplifies the morning sickness.

"What did Dr. C say? Tell me what he told you."

"My babies could die. I going to a specialist to find out for sure, but Dr. C thinks I'll need surgery to fix this, and then bedrest."

"Oh Tante! I'm so sorry this is happening to you..."

We kept on talking, but from my perspective, Tante was just going through the motions. She was in shock, and nearing tears. I fumbled through my words. I attempted to guide her in taking each day one at a time from that point on. I'm pretty sure she didn't hear much of what I said.

When I was diagnosed with severe preeclampisa, all that I heard was my life was in danger and so was my baby's. It was as if my ability to take in information was dammed off by those words. Nothing else could get in. Nothing. No emotions. No information. Just pure panic. I don't know for sure, but I imagine Tante was replaying "my babies could die" over and over in her head.

As Tante walked out my front door and toward her car, tears pooled in my eyes. I didn't want this for her. Why in the world do bad things happen to good people? Why? I kept wondering and worrying about her and the babies.

Tante has had a whirlwind of a week. She had the appointment with the specialist, who told her that he would need to perform surgery on her placenta. The surgery went well, but it was now a wait to see what happens time frame. So far, both babies are hanging in there. Tante is now on complete bed rest, and those babies, hopefully, will stay inside of her for a long time. God willing.

Most of you don't know Tante, but I ask that you pray for her and her beautiful, still growing baby girls.

Tante was an amazing amount of support and love for our family during both of my pregnancies and NICU stays. She helped keep Charlie sane when my life and my daughters' lives were in danger. Tante's ability to just listen to me during those scary, dark times was like a beacon of light. I only hope I can help her through what may be challenges in the upcoming weeks and months. Our family was dealt several curve balls in the last 5 years. I only hope we can help Tante and her husband to hit this curve ball right out of the park!

Please pray.

Friday, October 26, 2007

Trick Or Treat

I switched off NPR as I turned into our alley. A young girl about 8, ran past the front of the van. Her witch hat bounced with each step, and the fake green hair of her wig wriggled as she ran. A few other neighborhood kids scurried past my van on their way to the H's house for the hot dog party.

I smiled as I figured my girls would be waiting for me at the back door. Their faces would be eager, and their bodies would be jumping around to the tune of "Mommy is home! Mommy is home!"

My assumption lived up to its expectation. :)

We immediately ascended the stairs to the girls' room, and found the princess costumes which would adorn my beauties. Meghan could barely contain her enthusiasm as Halloween was perhaps the most exciting thing ever in her entire life. She bounced, skipped, and clung closely to me as I gathered all the necessary components of her "most-beautiful" Tinkerbell costume. I kept picturing that little puppy in the Loony Tunes cartoon that would jump over Spike the bulldog as he marched down the street. "Is it time yet? Is it time yet? I want my costume on! I want my costume on! Is it weddy (ready) yet Mommy?"

I didn't answer, but Grace felt the need to fill my silence. "Meghan, Mommy is almost done. I'll go get your wand." I grabbed Grace's costume too.

"Meghan, come here. Your costume is ready."

"Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!"

She wiggled and danced as I pulled the white turtleneck shirt over her head. Next, she put her hands on my shoulders as she stepped into the Tinkerbell green dress. She slipped her arms into her Tinkerbell wings, and finally wriggled on some "leg socks" to complete the ensemble. I straightened out her shirt underneath the bodice of her dress, and Meghan danced and twirled and jigged around the room. "I'm a beautafull Tinka Bell! I'm a beautafull Tinka Bell!"

She really did look like Tinkerbell. She is pixie-like in most ways physically, and her yellowy blond hair accentuated the whole look. I thought, "Wow, she is too frickin cute in this."



"Mooommmmmmy! I want my dress on," Grace emphatically shouted as she realized that Meghan had gotten dressed first.

"Hold on Gracie, I'm looking for your tiara. Where did it go?"

"I don't know. Meghan must have taken it."

"Well, it is gone Grace. I can't find it here in your pigsty of a bedroom Grace."

"Meghan did it!"

"Grace, no she didn't. It is here somewhere, though. How about we put this barrette in your hair instead?"

"Okay, Mommy. I like that one."

I thought, "Wow, that was so easy...almost too easy. It must be the allure of the candy that is keeping the tantrum at bay today. Wow!"

Earlier, Grace had not seemed as excited as Meghan, but all of a sudden, she could no longer stand still either. Her enthusiasm came in the form of jumping up and down, as I attempted to catch her limbs in rhythm with the jumps.

Grace slipped on her white long sleeved shirt, and I found the Barbie, Princess Rosella, Island Princess dress of low quality material, but exceptionally sparkly and glittery fabric. The turquoise "chiffon" clung to her arms, and I pulled her long blond locks out of the back of her shirt. She also wriggled into her white tights, and then spun around in a few twirls. Her costume shimmered as she spun.

"Mommy, we forgot my feathers."

"Okay Grace. Let's put them on now."

I fastened the pseudo peacock feathers to her dress, and wondered to myself just why exactly would a girl princess have boy peacock feathers. Her long blond hair helped her to look like Barbie, too. She was beautiful. She is getting so big so fast. Where did my baby Grace go?



The transformation was complete. Princess Grace and Pixie Meghan were ready for the fun. They both raced downstairs to gulp down some dinner before heading out for their candy rewards.

After dinner, we opened the glow stick packages. Their cousins Chloe, Molly, and Trey had arrived, and were coming along in their most beautiful princess ensembles too. Chloe wore a hot pink Jasmine costume, and Molly was a Cinderella bride. Molly wore her Aunt Laurie's veil, which made me smile. Her Aunt went to Heaven in 2004 shortly after Meghan was born, and I know that Laurie would have loved seeing Molly wearing it with pride. Their baby brother, Trey, was in a darling little monkey costume.



I cracked and snapped the sticks, and a soft purple hue glowed brightly in my hands. I put a glow stick in each of their pumpkin buckets, and we headed for the front hall closet. All the girls clamored for their coats. Simply put, they were "itching" to get out the door, and it made me giggle a bit.

As we walked down the front path, the leaves rustled under our feet. Pumpkins glowed orange. Ghosts, gobblins, witches, princesses, and parents moved about gathering the booty.






Grace enjoyed holding Molly's hand as they paired up down the sidewalk. Meghan clutched my index finger, and pulled me up each path to the houses. Chloe wondered aloud to herself why nobody seemed to know who she was. Afterall, it was easy to see that she was Jasmine from the movie Aladdin.

A few times, Meghan's enthusiam could not be contained, and she would let go of my hand as she bolted to catch up with the big girls. Her orange pumpkin bucket jiggled and her Tinkerbell wings bounced up and down in cadence with her steps. "Hey guys, wait foooorrrr meeeeeeee!"

Grace and Molly continued to walk hand-in-hand with their pumpkin buckets in their free hands, and then I noticed that I had forgotten to take Grace's peacock feathers off. They were now sticking straight up out the back of her jacket near her neck.

"Do you want me to take your feathers off Grace?"

"Nut uh Mommy. I like them. They're kinda like a turtle neck."

My sisters and my brother's girlfriend walked with us. It was a warm evening compared to some of our past Halloween's here in the frozen tundra.

It made me remember running around as a girl with my sisters and brothers. It seems so long ago now. Life seems to be speeding at a faster pace as I get older now.

I want to savor each moment of tonight. Meghan's Tinkerbell wings bouncing up and down in the shadows. Grace's hand firmly placed into Molly's. Chloe's independence. Trey shuffling down the sidewalk with his Monkey ears at attention. Molly's light up shoes. Charlie and his Mom proudly handing out candy while a fake skull shouted out spooky sayings. Kristen and Bob enjoying their little man. Lauren and Sarah guiding the girls and Lia. Our neighbors gathered around. Children laughing, running, and getting spooked. Children with sugar highs. Children being children. Adults yearning to be children again. Adults soaking in the traditions. People living life.