I slid the last plate into the already overfull dishwasher, and was about to bend down to grab the box of dishwasher soap from below our sink. My girls were playing in the living room, nicely I might add. :)
From the living room, I heard a loud, cracking sound. My head swiveled to the left to find the source of that sound. My mommy radar kicked into overdrive, and the adrenaline starting pumping. I knew it was a sound I didn't really want to hear. It certainly wasn't a sound of say, a ball being tossed against a wall by my mischievous five and three year olds. It wasn't to be ignored or dismissed. It was an "oh shit" sound.
The loud cracking sound was coupled with an oh-my-GOD I really, really, really hurt myself bad, Mommy, screaming. I knew it was Gracie as the scream morphed into, "Owie! Owie! Owie! Owie! It hurts. It hurts. It hurts."
My hands were still dripping with water, and I had to maneuver around the open dishwasher to get to Grace. By the time I stumbled past the dishwasher, Gracie was rounding the corner into the kitchen to find me. Her right hand was pressed against her right eye and eyebrow.
I was startled to see blood dripping from in between her fingers. Drops of blood were splashing down on the floor and onto her shirt.
I swiveled back around again and headed for the paper towels. In about .2 seconds, I ran some cold water on the wad of paper towels, and somehow hovered my way back to Grace. I began to shout, "I need help in here. I need help in here. Charlie, help!" I moved Grace's hand away from her eye, and smashed the wet wad of toweling in the spot where her hand had been. I knew I had to put pressure on it.
"It hurts so bad, Mommy! It hurts! It hurts!"
My left hand grabbed a chair from our kitchen table and spun it around. "Grace, sit down honey! Let me help you!"
"It hurts so, so, so baaaaaaaaaaaaaaaaaaaaad, Mommy. When will it stop huuuuuuurting?"
My mind flashed back to when I cut off a portion of the tip of my left index finger in a grape cutting incident. I'll never forget that pain. I wondered if she was feeling that pain, too.
"I don't know when it will stop Grace." As I inspected her forehead, a raised purple contusion was forming from her hair line down her forehead to the edge of the paper toweling. What was underneath, I didn't know.
"I don't know when it will stop hurting Grace. I need to see what happened." Thankfully, I was standing in front of our fridge so I used my free hand to grab an ice pack from the freezer.
"My eye is bleeeeeeding Mommy."
"Let me see Grace."
"Noooooooooooooooooo!"
At this point, Charlie, Kesa, and Meghan entered the kitchen. I lifted the wad of toweling a little to see what was happening, but Grace squirmed and buried her chin into her left shoulder so I wouldn't be able to see the injury. The bump was forming on Grace's head right before my eyes, and I knew I had to get ice on it.
I still needed to see where the blood was coming from. My mind was racing with internal split second anxiety and decision-making. "Is she right? Is her eye really bleeding? Oh God, I don't want to look at that. I really don't want to see an eye injury. If there is anything I don't want to see in life, it is an eye injury. That is like my Achilles heel. Back to reality Jen! Focus!"
"What happened?" came out of the mouth of my husband, Charlie.
Kesa answered. I don't remember what she said. I may have even contributed but in my mind, it didn't matter what happened. Gracie needed help.
Grace fretted, "It was an accident! I didn't do it on purpose." Charlie opened a drawer and pulled out a towel. He darted to the freezer door and stuffed ice cubes into the towel.
"We know honey. Don't worry. You're not in trouble Gracie." Huge tears were flowing from Grace's eyes. Her face was bright red, and drops of sweat were forming on her face and neck. Then, she began to tremble.
Racing thoughts again, "Oh crap! She is getting shocky."
"Kesa, please get me Grace's blue blankie, an animal, and her pillow! It will help her feel better." My mind was instructing me. It knew that you need to keep a shocky person warm so the blanket would help with that. Never mind that it was like 86 degrees outside at this point, but we were in the air conditioning.
"I think we need to take her in."
"Where?"
"To the urgent care!"
I motioned to Charlie, and mouthed to him, "I don't want to look! I don't want to look! This is bad."
I lifted the toweling away from her face. Blood streamed down her face from a puncture-like wound about the size of a pencil eraser. It was deep, it was directly above her eye brow, and it startled me. I felt myself shaking, but it was the adrenaline. I quickly clamped my hand back against her forehead to apply pressure.
Charlie came close to Grace, but he saw the blood. As he turned away, he gripped the counter top and leaned on it. His head bowed toward the flat surface, and I knew the blood was too much for him. Honestly, it was hard for me, and some of my friends call me the intern because I love most things medical.
"It huuuuuuuurrrrrtttttssssssss!"
"We've got to take her to the ER. This is bad, Charlie." Charlie wasn't quite convinced yet, since he hadn't been able to see it. He mustered up the courage, and I moved the toweling again. Blood seeped out of the wound quickly. My mind was made up. It was time to go. Time to take Grace for real help, from real interns.
Charlie glanced at it, and said, "No, it's fine. She just needs some ice."
Mommy radar beep, beep, beeeeeepppping in my head. By this time, I also noticed she had a bruise forming below her eye on her cheek bone. "No, it's not fine. We're going. Kesa, can you stay with Meghan please? The chicken will be done in 10 minutes. Take it out when it beeps and turn off the oven." Charlie left to bring the minivan around to the front of house, and I began to think about what might help Gracie feel a teensy bit better. Kesa helped by gathering fruit snacks and juice boxes because we hadn't eaten dinner yet. I thought Grace would be hungry during the long wait at the urgent care.
Gracie continued to shake uncontrollably all the while telling me it, in essence, hurt like hell. As we approached the front door, I looked to my right to see Kesa holding a crying, squirming Meghan. I was so engrossed in Grace that I didn't hear that Meghan was upset too. A brief moment of regret for Meghan flashed in my thoughts, and I knew I had to say good bye to Meghan. She'd be a wreck if I left without giving her a hug. Meggie darted across the living room. "I, I wanna come too."
"Sorry honey, you have to stay with Kesa. Gracie has a bad owie and we need to get her some help. See you later Meggie. Love you..."
We walked out to the car with me holding the toweling to Grace's wound.
Grace wailed, "I don't wanna go! I don't wanna go! I don't wanna go to the hospital."
Gracie continued to become more and more upset about having to go the hospital. “I don’t want to go to the hospital! I don’t want to go! I wanna lay down in my bed. I don’t want to go.” Whether fortunate or unfortunate, I had in past conversations told her on many occasions that she needed to be more careful otherwise, she’d end up so hurt that she’d need to go to the hospital. Grace is THE clumsiest person I know. I know 5-year olds are clumsy, but if I looked up clumsy in the dictionary, Grace’s picture would appear there. I chalk some of that up to her former preemie beginnings, though. In any case, if I had placed odds on which of my daughters would end up in the ER first, Grace would have been the one, and well, she did it.
Grace was able to walk, but she seemed a little disoriented. I think it was because she was in intense pain, but did consider it might be a concussion. We’d have to find out.
Gracie climbed into her car seat, while I was still holding the paper toweling in place. At one point, she pulled away from me, and the bleeding wasn’t so profound. This allowed me to climb into the back of our minivan with her. I knelt on the floor next to her chair, and replaced the paper toweling with a dark blue kitchen towel that Charlie had run under cold water and wrapped around an ice pack. We finally got ice on her head.
“That’s too cold Mommy! It huuuuurts!”
I kept thinking, “I know it hurts. Let me help you kid!” My frustration with the situation and not really being able to make it feel better, made me a lot less patient and my tone was at best witchy. I reminded myself to keep it together, though.
“I don’t wanna go! I don’t wanna go! It huuuurts! I want to sleep in my bed. I want to lay down.”
“Gracie, we’re not going to stay overnight at the hospital. You’ll get to come home later honey.” At least, I hoped. I kept wondering if a concussion might get her admitted. Charlie turned on Grace’s favorite pre-school soundtrack, and Phil Collins’ voice squawked through the speakers. It was a Lion King track.
“No music Daddy! No music Daddy!” Charlie didn’t hear her though. He seemed to have gone to his “happy place” while driving. I shouted toward the front of the van, “Charlie, Grace requests no music, please.” “Oh!” Silence came again. Grace then seemed to calm down for a minute or two. She focused on things passing by the window on her left. I relaxed a bit, but then my hand moved a bit on Grace’s forehead.
“Oooooow! That hurts Mommy.”
“Sorry Grace, my arm is getting tired.”
It seemed to take forever to get to our local urgent care center. Amazingly, my mind had again instructed me to remember that it was dinner time, prime time at the closest ER. So, we remembered to go to the urgent care center, which was farther away by 5 minutes, but would probably get her seen more quickly.
Finally, we made the right turn into the urgent care parking lot. Grace’s indignation at going to the hospital revved up again. “I don’t wanna go to the hospital. I don’t wanna. I’m scared! I’m scared! I’m scared!”
“Gracie, Mommy and Daddy will stay with you the whole time. They’ll make it stop hurting with some medicine and then we’ll get to go home. C’mon Grace. Let’s go.”
“Noooooooooooooooo! Nooooooooooooooooooo!”
Charlie left to park the car. To me, it was time to bring down the Mommy “hammer” since Grace was rapidly getting out of control. “Grace, listen to me! Look at me please! You need help. Mommy can’t make this better without some help from the hospital doctors.” I heard myself yelling, and dialed it down a notch.
“Nooooooooooooooo!”
“Gracie, you’re coming with Mommy. Let’s go inside, and make it feel better.” Large tears began to flow out of her eyes, and she began to tremble in fear. All that I wanted to do was make it feel better, but she was in so much pain that there wasn’t any reasoning with her. I don’t know why I thought I could reason with someone in pain. It just doesn’t work, but I wasn’t of sound mind at that point either.
Reluctantly, Grace shuffled her feet while crying out loud, “No, I don’t wanna go to the hospital!”
As I approached the desk, a woman asked me Grace’s name and date of birth. I slowly spelled our very complicated German last name, “B as in boy, A, U, E, R, N as in Nancy, F as in Frank…”
“Have a seat.”
I guided Gracie to a chair and made her lean back. She seemed overwrought and was ramping up to loud crying again. “I don’t wanna be here. I wantttt toooo goooo home!” Her words all ran together.
Charlie walked in, “How long?”
I quipped, “I don’t know.” Charlie walked off toward the desk again to inquire on time. When he returned, I noticed that a bathroom was close by. “Grace, do you need to go potty?” “Uh huh, I havta go.” I needed to go badly, too.
As she slowly stood up, I made sure to keep the ice on her head. The bleeding had begun to subside a bit so I could lessen the pressure. That fact made me feel a bit better.
When we arrived in the bathroom, I noticed the mirror on the wall, and made sure that Grace wouldn’t get a look at it. I don’t know about your experiences, but most kids I know have a field day “boo-hooing” their eyes out in the mirror when they are upset. Plus, I didn’t want her to get a big shock at what it looked like.
She must have been reading my mind. “I wanna see it Mommy. I wanna see.”
“Are you sure Gracie? It is pretty scary.”
She moved around me and inspected it in the mirror. “Oh no! It hurts so bad Mommy.” Tears began flowing again, and it did exactly what I thought it would do to her. She began to lose it again.
“Gracie, listen to me. Mommy and Daddy are going to let the doctors help you. We won’t leave you. Mommy will talk to you the entire time the doctors are helping you. Let’s go back and sit down again.”
“I don’t wanna see a doctor. I wanna go home.”
While we were gone, they called Grace’s name. Charlie said, “They passed us up.”
“What?”
“The called her name and passed us up. Some other kid got to go back there.” My face turned red hot. It was odd to be embarrassed at that point, but the kid had to go potty. What was I supposed to do? Let her wet herself. Honestly, I think I felt bad about urging her to go to the bathroom. Had I delayed her getting proper pain management? Thankfully, about 5 minutes later, they called her name again.
We walked Grace into an assessment area where a nurse Pat did a history and updated her contact information. Gracie got weighed, had her temperature taken, as well as had a blood pressure check. My eyes perked up when I saw a reading of 124/77. That is high blood pressure for a kid. It made me understand how much it hurt as well as how scared she was. Poor baby.
The nurse asked, “Grace, look at these pictures. Which picture shows how much it hurts you?” Grace pointed to a #6 on the pain scale.
By now, a ½ hour had passed since she hurt herself, and she was still a 6/10 on the pain scale. My heart hurt, and Charlie seemed to take notice too. We finally were moved into a room, and told to remove the ice from her head. The bleeding from her wound was mostly slowed down, but I had to wipe drips away every few minutes.
There was TV in the room, so we turned on So You Think You Can Dance and Grace passed the time by coloring. Periodically, she would cry or tell us it hurt. She had finally found a calming place though. Coloring helped to distract her, although she seemed to focus a little too closely on not having the right color crayons. I showed her how to mix the colors together to make the color she wanted, but didn’t have readily available. I noticed that I was pacing a bit.
40 minutes later, a tall, thin woman doctor appeared. (I found out later she was really a physician’s assistant.) She seemed to be near my age, but probably younger and had long, blond hair pulled into a pony tail at the base of her neck. She assessed Grace’s injury, assessed whether she was concussed, and immediately indicated it would need stitches. Grace was so focused on her coloring, that she didn’t hear it at first. I was relieved to hear that stitches would be placed. I knew that wound was not good, and it made me feel a bit vindicated at bringing her to the urgent care.
I’m probably in the minority, but I try to be a good consumer of health care services. We’ve used them so much in the past due to my severe preeclampsia, the girls’ stays in NICU, and their Alpha-1 Antitrypsin Deficiency. I know we haven’t paid in what we’ve taken out of the health care/insurance systems. Anyway, I just didn’t want them to say, “Ice it and go home.” That would have sent me over the edge.
Meanwhile, Grace’s wound kept oozing blood, and the bruise was in full Technicolor now. The fact that she hadn’t had her 5-year old pictures taken yet crossed my mind. We’d be waiting for quite a while for that bruise to disappear.
From the doctor came, “What color stitches would you like Grace? How about blue?”
“No stitches! I don’t want stitches. Nooooooooooooooooooooooo!”
On the inside, I was thinking, “Oh crap, here we go again. Grace is ramping up to full on panic again. I’d better talk her down.”
“Gracie, the stitches will help you feel better. They won’t hurt. They’ll give you medicine so you won’t feel them fixing your owie.”
“Nooooooooooooooooo stitches!”
Charlie said, “Gracie, the medicine will make you feel better.”
It didn’t matter what we said, she was fully panicked. There was no bringing her back to calm again. The doctor/nurse left to gather the necessary materials, and during that time I walked Grace through what would happen. I figured I’d better tell her so it wouldn’t be a surprise, but I left out the part about the numbing shots and the papoose board. I know. I know. It was spin control at its very worst. The nurse brought in a papoose board so they could strap her down for the procedure.
“Gracie, this is a big hug,” came out of the nurse’s mouth. I thought, “That is a torture device. I’d be insane if I was in that thing.” I knew it was necessary though. Gracie wasn’t going to cooperate. She was going to fight us every step of the way.
Grace cried, “Nooooooooooooooooooo! No! No! No! I wanna go home now.” Knives felt as if they were stabbing this mother’s heart. I’m sure Charlie felt the same way. I picked up Grace like a baby, kissed her left cheek, told her I was so proud of her, and placed her on the papoose board. Grace sat up, and tried to bolt, but we held her in place. The nurse and doctor folded the large blue flaps down on Grace, and fastened the Velcro down. Grace could no longer move most of her body…just her feet and her neck/head. “It’s toooooo tight! It’s toooooo tight! Nooooo!” Daggers were now piercing my heart, but it had to be. It had to happen. She needed those stitches, but that papoose/straight jacket thing was like a medieval torture device. At that moment, I wondered if we should have gone to our local Children’s Hospital ER instead. “Would they have put her on that board, too?”
Thankfully, the nurse and doctor had quickly begun their work. I faced Gracie so she could look at me. “It is tooooooooooooo bright in here. I need sun glasses, Mommy.” The procedure light was very bright, so I shielded her eyes with my hand when I could. I didn’t want to disturb their work though. Charlie had wrapped his arms around Grace’s feet and ankles. His hand stroked Grace’s lower leg in an attempt to help Grace calm down.
The doctor grabbed some sort of paper/towel thing with a hole cut out in it, and placed it over Grace’s face. “Hold the end of it up so she can see your face, Mom.” I thought, “Okay, I can do this. I can help in a more productive way. Good.”
I watched as they injected the numbing agents about 5-6 times. Grace screamed in terror. I remembered that numbing agent from my finger cutting accident. It really stings. “Owwwwwwwwwww! Nooooooooooooooo!” It seemed the tide of pain was overcoming Gracie. She was hitting the wall then…
She was silent. Her eyes closed, and her body relaxed. For a second, I thought she had passed out. I said, “Gracie, are you okay?”
“Uh huh. It doesn’t hurt anymore.”
The doctor said, “She went to her happy place.”
I felt a calm come over me, too. It seemed Grace and I were locked into a symbiotic link between her physical pain and my emotional pain. Charlie said, “Grace, you are almost done.” He stood up and I said, “Stay where you are Charlie. It is not done yet.” Meaning, don’t move Chuck! There is too much blood for your liking. Trust me.
“Grace, I’m so proud of you honey. You are doing a great job.” By now, the doctor was stitching the wound closed. At first, I thought I didn’t want to watch the stitching, but then my morbid curiosity took over. It was actually not bad at all to watch, as long as I knew Gracie wasn’t in pain. Yes, my “intern-like” persona’s interests were piqued. LOL
Three electric blue stitches later, it was all over. The nurse placed a gauze pad over the stitches with some tape. I said, “Gracie, we are so proud of you honey. You did a great job listening and staying still. Now, we can take you out of the hug.” She was excited to hear that news. Charlie and I pulled on the Velcro and it released with a loud noise. Gracie squirmed to stretch herself.
I exhaled deeply. I hadn’t realized that I was holding my breath through most of it.
“I feel better now Mommy.” I helped her down off the table, and gave her a small stuffed puppy dog along with her very special Hello Kitty pillow. She clutched them like they were gold. We would need to wait a few minutes for the discharge papers so Grace sat down in a chair.
She began to shake. “Why am I shaking Mommy?”
“You went through a rough time Gracie. It is okay you are shaking. Let’s put your blankie on you for a while.” Gracie cuddled into the blanket, and was returned to being the Gracie I know and love. We were all relieved. It was over. We were instructed to wake Grace up once during the night as well as watch her stitches for signs of infection. Otherwise, we could bring her to her pediatrician to have the stitches removed in 3-5 days.
A Happy Meal later in the drive-through, Gracie was back at home with us. Meghan was still in her bed at 10:00 p.m. crying for Mommy. Kesa and Shanna were pleased to see us, as Meghan was quite distraught that Grace had been hurt and her Mom and Dad weren’t home. My focus changed to Meghan since I knew Grace was finally going to start the healing process. Thank God for medical care, although I’m still not sure about that “hug” papoose board.
The bruise is simply put, amazingly bad already. It is from her hair line down to the cut above her right eye, and then reemerges below her eye down to her cheek bone. My best guess is that it is at least 3-4 inches long and about 1 inch wide.
She is healing, and hopefully, I’ll heal my emotional wound from this soon.
(In case you are wondering, Grace simply tripped on "air" in our living room. On her way down to the ground, she hit her knee and got a bad rug burn too. Then, her head crashed into an archway on the way into our dining room. So, essentially, it was where two walls come together to form a corner. She left a baseball sized hole in the wall. Guess, we have some repairing to do, but I'm glad she is already on the mend.)
Wednesday, June 27, 2007
Sunday, June 24, 2007
Flying and Flowers
I'm not feeling much like blogging lately.
Summer is here. I've been swamped at work, and traveling like crazy. On Mother's Day weekend, I was in Minneapolis. Next, my great uncle Alex passed away which brought me to Rugby North Dakota on Amtrak. Then, I flew on Midwest Airlines (love, love, love them) to Washington D.C. for the national Alpha-1 conference. Finally, I went to Columbus Georgia (on Midwest again) to meet with a client just last Wednesday. Today, I rode down to the Chicago area to attend my cousin, Carol's wedding shower.
I don't know which end is up right now. I'm coming and going. My family is a either annoyed or confused. Meghan keeps asking me if I'm going on an airplane again...even if I'm just running to the store. Dear husband keeps making comments like "Mommy can give you girls a bath for the first time this week." Sigh.
This evening, I finally got the last of my summer flowers in the ground. I can't remember the last time that I actually got all of my flower bed's planted. I could really use a professional lanscaper right about now. My gardening skills are less than stellar, IMHO.
All-in-all, I'm glad to finally be home and have no where to travel to. Staying in one place is good medicine for me right about now.
Summer is here. I've been swamped at work, and traveling like crazy. On Mother's Day weekend, I was in Minneapolis. Next, my great uncle Alex passed away which brought me to Rugby North Dakota on Amtrak. Then, I flew on Midwest Airlines (love, love, love them) to Washington D.C. for the national Alpha-1 conference. Finally, I went to Columbus Georgia (on Midwest again) to meet with a client just last Wednesday. Today, I rode down to the Chicago area to attend my cousin, Carol's wedding shower.
I don't know which end is up right now. I'm coming and going. My family is a either annoyed or confused. Meghan keeps asking me if I'm going on an airplane again...even if I'm just running to the store. Dear husband keeps making comments like "Mommy can give you girls a bath for the first time this week." Sigh.
This evening, I finally got the last of my summer flowers in the ground. I can't remember the last time that I actually got all of my flower bed's planted. I could really use a professional lanscaper right about now. My gardening skills are less than stellar, IMHO.
All-in-all, I'm glad to finally be home and have no where to travel to. Staying in one place is good medicine for me right about now.
Friday, June 15, 2007
Personal
Yesterday one of my Alpha acquaintances said, "Jen, you can't take this personally." Before I address why she said that, I'll rewind a bit.
Last weekend, I attended the Alpha-1 Association National Education Conference in the Washington DC area. Every year, I attend this conference, and every year, I eagerly anticipate the conference. I suppose I'm waiting to hear about the latest break through in research or the latest idea for a cure. You know. The one thing that will make Alpha-1 a moot point in our lives. Hey, denial ain't just a river in Egypt.
When Grace was diagnosed about three weeks after her birth, I began a lifelong journey to learn about anything related to Alpha-1. First I found out how the genetics of Alpha-1 applied to our family, next I learned about the liver and its processes where Alpha-1 is concerned, and then I began to understand how the lungs are impacted by a lack of Alpha-1 protein circulating in the blood stream. This is all information that makes me giddy at times. It is a sort of quest for me, and honestly, it is probably unhealthy at times. In any case, it is a way for me to cope with Alpha-1 in our lives. I can't control Alpha-1 so I try to control my knowledge of it. Alex, I'll take Alpha-1 and how it impacts Jen for $500. (Get your Jeopardy hats on people.)
So the conference is the pinnacle of my quest for Alpha-1 knowledge each year. It is the height of my excitement, which is why I crashed so hard at this year's conference. Alex, I'll take Alpha-1 and how it makes Jen's emotions spiral out of control for $1000.
This year's town hall meeting of Alphas, who belong to the Alpha-1 Association, was what I'll call "fire works." I'm not entirely sure why, but in my observation, there was a distrust that emanated from about 1/4 of the attendees. Honestly, it was a bit shocking to me. I see our employees advocating, assisting, communicating, educating, and loving our membership every day, but most of our members don't see that. I need to remember that fact.
What made it hard was that some of the dissenting opinions came from people I sit next to at support group meetings month after month. Before I go too far, I'd like to reiterate that all opinions are allowed. Questions are always welcome. I'm glad our members asked questions this year.
So, why were my emotions like TNT just waiting to be lit? I'm damn good at keeping Alpha-1 at arm's distance...close enough to understand in detail from a clean, clinical perspective, but far enough away to keep its dirty little secrets out of this mother's heart. The town hall meeting discussion unveiled some of the darker sides of Alpha-1 for me.
It revealed a newly diagnosed Alpha, who clearly was struggling with her diagnosis. She trembled and shook as she emphatically said, "I'm not for sale. We're not for sale." Tears streamed down her face as our members discussed how some of the pharmaceutical companies conducted business within our community. Her demeanor made me painfully aware of how it must feel to be considered a "sales opportunity." I'm grateful that Alphas have a treatment, which replaces some of the Alpha-1 in their bodies. It is a miracle that it is available, but it is also sometimes a curse. Pharmaceuticals make a lot of money off of our patient population. It is business, but yet, this is very personal for our membership. They are fighting for their lives.
I have a mental picture in my head of how my girls will look as adults, and well, it was like the ghost of Christmas future was morphing the woman into one of my daughters. It made me sick to think of my girls sitting in a room feeling disenchanted, alone, and without support.
Yes, I know that Grace and Meghan are doing great right now. Yes, I know that there is a lot of time between now and the future. Yes, I should live in the moment, but that day, I couldn't.
Denial often keeps me in the here and now, but that day, my defenses were weakened. It seemed I wasn't the only one, which does help me to feel less alone.
Alpha-1 robs people of precious time and breath. My hope is that our community can rally around itself. Life is simply too short. Now is the time to gather together and find a cure!
I take this very personal. I can't separate myself from Alpha-1. It is always there lurking in the genes I helped give my daughters. Nobody knows what will be, but I think I have a good mental picture of what can be in our community.
I think I should somehow draw that picture and frame it on the wall. I'll call it Alpha-1 Utopia.
Last weekend, I attended the Alpha-1 Association National Education Conference in the Washington DC area. Every year, I attend this conference, and every year, I eagerly anticipate the conference. I suppose I'm waiting to hear about the latest break through in research or the latest idea for a cure. You know. The one thing that will make Alpha-1 a moot point in our lives. Hey, denial ain't just a river in Egypt.
When Grace was diagnosed about three weeks after her birth, I began a lifelong journey to learn about anything related to Alpha-1. First I found out how the genetics of Alpha-1 applied to our family, next I learned about the liver and its processes where Alpha-1 is concerned, and then I began to understand how the lungs are impacted by a lack of Alpha-1 protein circulating in the blood stream. This is all information that makes me giddy at times. It is a sort of quest for me, and honestly, it is probably unhealthy at times. In any case, it is a way for me to cope with Alpha-1 in our lives. I can't control Alpha-1 so I try to control my knowledge of it. Alex, I'll take Alpha-1 and how it impacts Jen for $500. (Get your Jeopardy hats on people.)
So the conference is the pinnacle of my quest for Alpha-1 knowledge each year. It is the height of my excitement, which is why I crashed so hard at this year's conference. Alex, I'll take Alpha-1 and how it makes Jen's emotions spiral out of control for $1000.
This year's town hall meeting of Alphas, who belong to the Alpha-1 Association, was what I'll call "fire works." I'm not entirely sure why, but in my observation, there was a distrust that emanated from about 1/4 of the attendees. Honestly, it was a bit shocking to me. I see our employees advocating, assisting, communicating, educating, and loving our membership every day, but most of our members don't see that. I need to remember that fact.
What made it hard was that some of the dissenting opinions came from people I sit next to at support group meetings month after month. Before I go too far, I'd like to reiterate that all opinions are allowed. Questions are always welcome. I'm glad our members asked questions this year.
So, why were my emotions like TNT just waiting to be lit? I'm damn good at keeping Alpha-1 at arm's distance...close enough to understand in detail from a clean, clinical perspective, but far enough away to keep its dirty little secrets out of this mother's heart. The town hall meeting discussion unveiled some of the darker sides of Alpha-1 for me.
It revealed a newly diagnosed Alpha, who clearly was struggling with her diagnosis. She trembled and shook as she emphatically said, "I'm not for sale. We're not for sale." Tears streamed down her face as our members discussed how some of the pharmaceutical companies conducted business within our community. Her demeanor made me painfully aware of how it must feel to be considered a "sales opportunity." I'm grateful that Alphas have a treatment, which replaces some of the Alpha-1 in their bodies. It is a miracle that it is available, but it is also sometimes a curse. Pharmaceuticals make a lot of money off of our patient population. It is business, but yet, this is very personal for our membership. They are fighting for their lives.
I have a mental picture in my head of how my girls will look as adults, and well, it was like the ghost of Christmas future was morphing the woman into one of my daughters. It made me sick to think of my girls sitting in a room feeling disenchanted, alone, and without support.
Yes, I know that Grace and Meghan are doing great right now. Yes, I know that there is a lot of time between now and the future. Yes, I should live in the moment, but that day, I couldn't.
Denial often keeps me in the here and now, but that day, my defenses were weakened. It seemed I wasn't the only one, which does help me to feel less alone.
Alpha-1 robs people of precious time and breath. My hope is that our community can rally around itself. Life is simply too short. Now is the time to gather together and find a cure!
I take this very personal. I can't separate myself from Alpha-1. It is always there lurking in the genes I helped give my daughters. Nobody knows what will be, but I think I have a good mental picture of what can be in our community.
I think I should somehow draw that picture and frame it on the wall. I'll call it Alpha-1 Utopia.
I'm an "Aunt" Again
My lil sis, Lauren, welcomed a new addition to her family: Lia, a beautiful black lab puppy who is 7 weeks old.
Tuesday, June 05, 2007
Fundraising for a Cure!
Hello Friends and Family,
It is time for the Wisconsin Liver Walk on Saturday June 16th at Frame Park in Waukesha, WI.
Charlie and I are captains of Team Alpha-1. We walk in honor of our very special daughters, Gracie and Meghan, who have Alpha-1 Antitrypsin Deficiency, a genetic disorder that damages the liver, but also one that causes irreversible lung damage over time. I walk in memory of my cousins, Amy, Beth, and Pam, who became Alpha Angels too early in life and also walk for all Alphas courageously battling their disease on a daily basis. Long live the Alphas!
We know a cure will eventually be found, and it is through efforts like this that you can easily contribute to the cause. This year, we decided to raise funds for 3 very worthy Alpha-1/liver organizations. If you would like to sponsor us in our fundraising efforts, please make a tax-deductible donation to one of the following organizations:
Alpha-1 Foundation: The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. Our Team Alpha-1 fundraising page for the Alpha-1 Foundation is:
http://www.firstgiving.com/teamalphaWI2007
American Liver Foundation - Wisconsin Chapter: The nation's leading nonprofit organization promoting liver health and disease prevention. ALF provides research, education, and advocacy for those affected by liver-related diseases. Our Team Alpha-1 fundraising page for ALF-WI is:
http://www.active.com/donate/wiliverwalk2007/teamalpha1
The Alpha Pack: Its mission is to offer support to those in the Wisconsin area affected by the hereditary condition Alpha-1 Antitrypsin Deficiency (AATD), and educate the local community through meetings, events, and/or literature. Funds donated to The Alpha Pack benefit local Wisconsinites affected by AATD, our awareness activities, and national research studies to find a cure. You can make an online donation by clicking Donate and then Online in the navigation bar on the top of this web page: http://www.thealphapack.org/ A blue dashed box appears on the page. Click Make a Donation to send a donation using PayPal.
If you'd like to join us for the walk, please let us know. We'd love to have you on Team Alpha-1. The walk is a leisurely 1.5 mile stroll along the Fox River. It isn't a race. Join us afterward for a picnic in the park. You can register for the walk by going to: http://www.active.com/donate/wiliverwalk2007 The registration fee is $15.00 per person over the age of 13.
Thanks so much for supporting this very important cause. It means a great deal to us!
Jen, Charlie, Kesa, Grace, and Meghan
http://www.caringbridge.org/wi/alphagirls
It is time for the Wisconsin Liver Walk on Saturday June 16th at Frame Park in Waukesha, WI.
Charlie and I are captains of Team Alpha-1. We walk in honor of our very special daughters, Gracie and Meghan, who have Alpha-1 Antitrypsin Deficiency, a genetic disorder that damages the liver, but also one that causes irreversible lung damage over time. I walk in memory of my cousins, Amy, Beth, and Pam, who became Alpha Angels too early in life and also walk for all Alphas courageously battling their disease on a daily basis. Long live the Alphas!
We know a cure will eventually be found, and it is through efforts like this that you can easily contribute to the cause. This year, we decided to raise funds for 3 very worthy Alpha-1/liver organizations. If you would like to sponsor us in our fundraising efforts, please make a tax-deductible donation to one of the following organizations:
Alpha-1 Foundation: The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency. Our Team Alpha-1 fundraising page for the Alpha-1 Foundation is:
http://www.firstgiving.com/teamalphaWI2007
American Liver Foundation - Wisconsin Chapter: The nation's leading nonprofit organization promoting liver health and disease prevention. ALF provides research, education, and advocacy for those affected by liver-related diseases. Our Team Alpha-1 fundraising page for ALF-WI is:
http://www.active.com/donate/wiliverwalk2007/teamalpha1
The Alpha Pack: Its mission is to offer support to those in the Wisconsin area affected by the hereditary condition Alpha-1 Antitrypsin Deficiency (AATD), and educate the local community through meetings, events, and/or literature. Funds donated to The Alpha Pack benefit local Wisconsinites affected by AATD, our awareness activities, and national research studies to find a cure. You can make an online donation by clicking Donate and then Online in the navigation bar on the top of this web page: http://www.thealphapack.org/ A blue dashed box appears on the page. Click Make a Donation to send a donation using PayPal.
If you'd like to join us for the walk, please let us know. We'd love to have you on Team Alpha-1. The walk is a leisurely 1.5 mile stroll along the Fox River. It isn't a race. Join us afterward for a picnic in the park. You can register for the walk by going to: http://www.active.com/donate/wiliverwalk2007 The registration fee is $15.00 per person over the age of 13.
Thanks so much for supporting this very important cause. It means a great deal to us!
Jen, Charlie, Kesa, Grace, and Meghan
http://www.caringbridge.org/wi/alphagirls
Wednesday, May 30, 2007
Liver Histopathology of Alpha-1 Antitrypsin Deficiency
Another cool YouTube find! This one is really great. I don't know who the author is but he sure sounds like an expert to me. I love this stuff even though it reminds me what Grace or Meghan may face as they age. We'll see...
Click on the movie twice to watch it. If you are on dial-up Internet, you probably won't be able to watch this.
Click on the movie twice to watch it. If you are on dial-up Internet, you probably won't be able to watch this.
Tuesday, May 29, 2007
Honored
On a lark, I decided to submit my post about Meghan's birthday to Grand Rounds, which is a weekly blog carnival of the best and brightest medical blog entries.
Today, I was surprised to see that my post was selected as one of the Editor's Picks. Cool!
I'm so excited and honored to have been selected. What makes this even better is that I'm helping to educate many individuals in the medical community about preeclampsia and prematurity.
Here is the latest edition of Grand Rounds:
http://frommedskool.com/2007/05/29/memorial-day-grand-rounds/
Today, I was surprised to see that my post was selected as one of the Editor's Picks. Cool!
I'm so excited and honored to have been selected. What makes this even better is that I'm helping to educate many individuals in the medical community about preeclampsia and prematurity.
Here is the latest edition of Grand Rounds:
http://frommedskool.com/2007/05/29/memorial-day-grand-rounds/
Monday, May 28, 2007
Neohero is back
My day has been made at 10:20pm today.
My favorite medical blogger has reentered the blogosphere:
http://neonataldoc.blogspot.com
WOOHOO!
My favorite medical blogger has reentered the blogosphere:
http://neonataldoc.blogspot.com
WOOHOO!
Deflated
In memory of my Great Uncle Alex, who went to Heaven today...
Lately, I find myself in over my head with working more than full time, being a wife, being a mommy, and volunteering for those causes near and dear to my heart.
I enjoy being a professional instructional designer. I like what that persona brings to my life. Investigating a new product my company offers, determining how our clients may use the product, and creating adult education/training materials can be fun. I know it may not sound fun, but I really enjoy analyzing something, and breaking it down into meaningful pieces of information. It sort of gives me purpose. It provides a modicum of control over part of my life; however, my company’s changing culture has inhibited my like for my job lately.
I know that the grass isn’t always greener, and well, these are changing times in the world of business. I can see the changes already. Some of the roles within my company are now being shifted to offshore resources where the price of labor is cheaper. It worries me to see the changes. Will I have a job in the near future? I do see some positives though. It has broadened my horizons in that I have opportunities to virtually “meet” coworkers in India and Pakistan. While we do not have a language barrier, there certainly is a cultural barrier that has to be broken, and that doesn’t even begin to cover the time zone issue.
In any case, my job routinely takes me away from home and volunteering 45-60 hours per week. I know that may not seem like much to others in different professions, but may I ask if you sit in front of a computer all work day long for 45-60 hours a week? I often feel like a caged animal in between the three walls of my gray cube, where I hear every cough, sneeze, sigh, frustration shared, and other chatter. It robs my senses of the ability filter out unnecessary information. I feel like the hair on the back of my neck is always standing at attention and waiting for the next strike.
Since the demands of everyone’s jobs are taking an increasing toll on my coworkers, a self-preservation atmosphere is emerging. It is hard to see my coworkers being so unpleasant at times. Being on the receiving end of this ill will is deflating my like for my job. I only hope I can rise above it and develop a thicker skin. My professional feelings were stabbed in the heart last week, and if this keeps happening, I may need to take myself out of a toxic work arrangement. Tears brimmed in my eyes, and I had to find a shady spot to calm myself. I’ll give it time though.
I was hoping a weekend away with my family would provide some perspective, but alas, it was just a brief reprieve. Watching the waves gently roll across the lake had a lulling effect, but not a numbing effect. Occasionally, I’d hear the girls fighting over a toy or screaming with joy upon finding yet another interesting rock on the beach. I kept wondering what happened to me. Why don’t I find joy in the simple things anymore? Who will care that I worked so much when I’m on my death bed? I certainly won’t.
After attending Antonio’s funeral recently, it reminded me to value the time I have, and I’m really trying to do that.
************************************************
Veterans dressed in uniforms literally paraded past us. Marching bands thump, thump, thumped their way down the street. Kesa’s band marched past us in cadence. She refused to provide indication that she did, indeed, see us perched on the curb. Grace and Meghan proudly collected candy as it was thrown their direction, and they both waved their flags with the exuberance of first time attendees of a parade.
As the last police car closed out the parade, we walked back to our minivan, and decided to eat some lunch before heading home to southeast Wisconsin. As we slowly left a large parking lot at the park, we were none the wiser as to what had just happened. Hunger was taking its hold on our stomachs, and Applebee’s beckoned us, so we pulled into the parking lot there.
As I walked around the back of our minivan with Grace on my left and Meghan on my right, I heard a hissing sound. Puzzled, I looked up to see my husband’s index finger extended out toward the back left tire of the van. The head of what appeared to be a roofing nail was strategically placed into the side wall of the tire. Air was screaming out around the nail. A few choice words ran through my thoughts, and I could tell by the look on Charlie’s face that he had similar ones. I suddenly realized that this was done on purpose, and my faith in the basic goodness of humanity was deflated just like that tire.
We tote our children, our precious cargo, around in that minivan.
A couple of hours later, we had a new tire, and some lunch.
I only hope that karma does exist. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
Lately, I find myself in over my head with working more than full time, being a wife, being a mommy, and volunteering for those causes near and dear to my heart.
I enjoy being a professional instructional designer. I like what that persona brings to my life. Investigating a new product my company offers, determining how our clients may use the product, and creating adult education/training materials can be fun. I know it may not sound fun, but I really enjoy analyzing something, and breaking it down into meaningful pieces of information. It sort of gives me purpose. It provides a modicum of control over part of my life; however, my company’s changing culture has inhibited my like for my job lately.
I know that the grass isn’t always greener, and well, these are changing times in the world of business. I can see the changes already. Some of the roles within my company are now being shifted to offshore resources where the price of labor is cheaper. It worries me to see the changes. Will I have a job in the near future? I do see some positives though. It has broadened my horizons in that I have opportunities to virtually “meet” coworkers in India and Pakistan. While we do not have a language barrier, there certainly is a cultural barrier that has to be broken, and that doesn’t even begin to cover the time zone issue.
In any case, my job routinely takes me away from home and volunteering 45-60 hours per week. I know that may not seem like much to others in different professions, but may I ask if you sit in front of a computer all work day long for 45-60 hours a week? I often feel like a caged animal in between the three walls of my gray cube, where I hear every cough, sneeze, sigh, frustration shared, and other chatter. It robs my senses of the ability filter out unnecessary information. I feel like the hair on the back of my neck is always standing at attention and waiting for the next strike.
Since the demands of everyone’s jobs are taking an increasing toll on my coworkers, a self-preservation atmosphere is emerging. It is hard to see my coworkers being so unpleasant at times. Being on the receiving end of this ill will is deflating my like for my job. I only hope I can rise above it and develop a thicker skin. My professional feelings were stabbed in the heart last week, and if this keeps happening, I may need to take myself out of a toxic work arrangement. Tears brimmed in my eyes, and I had to find a shady spot to calm myself. I’ll give it time though.
I was hoping a weekend away with my family would provide some perspective, but alas, it was just a brief reprieve. Watching the waves gently roll across the lake had a lulling effect, but not a numbing effect. Occasionally, I’d hear the girls fighting over a toy or screaming with joy upon finding yet another interesting rock on the beach. I kept wondering what happened to me. Why don’t I find joy in the simple things anymore? Who will care that I worked so much when I’m on my death bed? I certainly won’t.
After attending Antonio’s funeral recently, it reminded me to value the time I have, and I’m really trying to do that.
************************************************
Veterans dressed in uniforms literally paraded past us. Marching bands thump, thump, thumped their way down the street. Kesa’s band marched past us in cadence. She refused to provide indication that she did, indeed, see us perched on the curb. Grace and Meghan proudly collected candy as it was thrown their direction, and they both waved their flags with the exuberance of first time attendees of a parade.
As the last police car closed out the parade, we walked back to our minivan, and decided to eat some lunch before heading home to southeast Wisconsin. As we slowly left a large parking lot at the park, we were none the wiser as to what had just happened. Hunger was taking its hold on our stomachs, and Applebee’s beckoned us, so we pulled into the parking lot there.
As I walked around the back of our minivan with Grace on my left and Meghan on my right, I heard a hissing sound. Puzzled, I looked up to see my husband’s index finger extended out toward the back left tire of the van. The head of what appeared to be a roofing nail was strategically placed into the side wall of the tire. Air was screaming out around the nail. A few choice words ran through my thoughts, and I could tell by the look on Charlie’s face that he had similar ones. I suddenly realized that this was done on purpose, and my faith in the basic goodness of humanity was deflated just like that tire.
We tote our children, our precious cargo, around in that minivan.
A couple of hours later, we had a new tire, and some lunch.
I only hope that karma does exist. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!
Thursday, May 24, 2007
Out of the Blue
It was a typical day.
In usual fashion, Meghan had woken up earlier than expected. Gracie was still buried under her blankets refusing to leave the warmth of her bed. Meghan woke up happy. She seemed pleased to start her day. "Mornin' mama."
To put it mildly, I'm not a morning person. I don't deal well with my girls in the morning. I have to consciously think about treating them kindly and displaying patience. I have to resist the urge to be my true self. You may not know that me, but I do. She is horrible to be around.
What I really want is to be left the hell alone. When I wake up, it takes a while for my senses to re-engage. Lights are too bright, sounds are shockingly sharp to my ears, and work clothes against my skin distract me. I can't filter my experiences well, and when the whining begins, it is all I can do to not run screaming out of the house.
The morning was sliding downhill as fast as a California mud slide. I had dragged my lazy butt out of bed late, and well, as a result, the whole schedule was off. My bad attitude seemed to be predestined.
We were already 15 minutes behind schedule.
The girls were perched in their child sized chairs. Elmo was singing (in my ear) on the television. The hair brush in my hand streamed through Grace's blond locks until I'd hit another snag. "Ow! That hurts." As I moved around the front of her, Grace said, "Mommy, why do you have a bruise on your arm?"
"I had a blood test yesterday, Grace."
"Why?"
"I have a doctor's appointment today. I had a blood test to see if I'm okay...like when you have tests to check your liver, Grace."
Out of the blue, there it was again: Alpha-1.
"It is not fair!"
"What isn't fair?"
"I don't want tests. The other kids don't have tests," she said emphatically.
"Grace, are you mad you have tests because you are an Alpha?"
"Uh huh. It's not fair."
I swallowed hard, and took a breath. Meghan cocked her head slightly, and seemed to wait for my response. Grace pouted and folded her arms with a hrumpf. My mind searched its recesses. I was foggy, and hadn't quite woken up yet. What could I say? What would help her? What could help her? Damn it, she has a life threatening genetic disorder. Somehow, somewhere I'd have to come up with something to show her she wasn't that different from her friends.
"Grace, you know that we have to watch your liver with tests. Did you know that Grandpa Sandy's pancreas doesn't work good either? He has to have tests too. There are lots of people who have parts of their body that don't work well. My blood goes too fast in my body. Your liver doesn't work quite right, but lots of people aren't perfect honey. Test help doctors to make sure we stay healthy."
"Oh," she said blankly. "Ouch Mommy! You are pulling my hair."
"Do you understand what I told you Grace?"
"Uh huh, but I hate tests. It's not fair!"
This is getting harder and harder to explain to Grace. I feel ill-prepared, and my guilt overwhelms me at times about her Alpha-1. Anyone want to mentor an Alpha-1 mommy through stuff like this? I feel like I'm flying in the dark with this. I'd better get my head on straight about this soon, or she'll pick up on my internal worry.
Today, I loathe Alpha-1.
In usual fashion, Meghan had woken up earlier than expected. Gracie was still buried under her blankets refusing to leave the warmth of her bed. Meghan woke up happy. She seemed pleased to start her day. "Mornin' mama."
To put it mildly, I'm not a morning person. I don't deal well with my girls in the morning. I have to consciously think about treating them kindly and displaying patience. I have to resist the urge to be my true self. You may not know that me, but I do. She is horrible to be around.
What I really want is to be left the hell alone. When I wake up, it takes a while for my senses to re-engage. Lights are too bright, sounds are shockingly sharp to my ears, and work clothes against my skin distract me. I can't filter my experiences well, and when the whining begins, it is all I can do to not run screaming out of the house.
The morning was sliding downhill as fast as a California mud slide. I had dragged my lazy butt out of bed late, and well, as a result, the whole schedule was off. My bad attitude seemed to be predestined.
We were already 15 minutes behind schedule.
The girls were perched in their child sized chairs. Elmo was singing (in my ear) on the television. The hair brush in my hand streamed through Grace's blond locks until I'd hit another snag. "Ow! That hurts." As I moved around the front of her, Grace said, "Mommy, why do you have a bruise on your arm?"
"I had a blood test yesterday, Grace."
"Why?"
"I have a doctor's appointment today. I had a blood test to see if I'm okay...like when you have tests to check your liver, Grace."
Out of the blue, there it was again: Alpha-1.
"It is not fair!"
"What isn't fair?"
"I don't want tests. The other kids don't have tests," she said emphatically.
"Grace, are you mad you have tests because you are an Alpha?"
"Uh huh. It's not fair."
I swallowed hard, and took a breath. Meghan cocked her head slightly, and seemed to wait for my response. Grace pouted and folded her arms with a hrumpf. My mind searched its recesses. I was foggy, and hadn't quite woken up yet. What could I say? What would help her? What could help her? Damn it, she has a life threatening genetic disorder. Somehow, somewhere I'd have to come up with something to show her she wasn't that different from her friends.
"Grace, you know that we have to watch your liver with tests. Did you know that Grandpa Sandy's pancreas doesn't work good either? He has to have tests too. There are lots of people who have parts of their body that don't work well. My blood goes too fast in my body. Your liver doesn't work quite right, but lots of people aren't perfect honey. Test help doctors to make sure we stay healthy."
"Oh," she said blankly. "Ouch Mommy! You are pulling my hair."
"Do you understand what I told you Grace?"
"Uh huh, but I hate tests. It's not fair!"
This is getting harder and harder to explain to Grace. I feel ill-prepared, and my guilt overwhelms me at times about her Alpha-1. Anyone want to mentor an Alpha-1 mommy through stuff like this? I feel like I'm flying in the dark with this. I'd better get my head on straight about this soon, or she'll pick up on my internal worry.
Today, I loathe Alpha-1.
Monday, May 21, 2007
Pediatric Grand Rounds
Pediatric Grand Rounds is up again at Amy Chopine's blog. I have an entry, but I really urge you all to take a look at this wonderful compilation of what pediatric medical bloggers are talking about on the web.
Enjoy the reading!
Enjoy the reading!
Monday, May 14, 2007
I'll Never Forget
I took a deep breath as I walked to the building. I knew that this wouldn't be easy. I knew what today meant. I knew it would hurt me to my core. My sandals clapped against the sidewalk as I approached the building. A subtle queasiness kicked up inside of me.
A white paned door greeted me. I grabbed the brass handle and pulled. As the door swung open toward me, the force of some suction made me lean back to regain my balance. Going into the building seemed to take my breath away so I inhaled deeply again.
A young girl, maybe 6 or 7, skipped across my path on the sprawling green carpet in the entry way. Her silky brown hair bounced on her shoulders with each step. I smiled at her and momentarily forgot my purpose for the day.
As I scanned the room, I found another area where poster boards covered in pictures decorated the room's horizon. Upon entering the room, I took another deep breath. I didn't know what I should do next so I headed for the pictures. I knew I had to see the pictures. A lump welled up in my throat, and tears began to brim in my eyes.
Then, I saw those familiar chocolate eyes, Antonio's eyes. He had flashed them to me on the day we met. He was happily devouring some treats, and his mom, Sheri, proudly pointed to him dressed up in his Halloween costume. His siblings were gathered around him, guiding him. Sheri said, "Isn't he handsome?" I nodded in agreement, and then I pointed to him to show my daughter, Grace, that we were finally getting to meet Sweet Antonio. Sheri's bon bon.
I panned the first poster board, and saw love emanating from each image. Ricardo, Sheri, and their older children encircled Antonio in many of the images. I smiled through the tears and panic I was experiencing on the inside.
While browsing the memories captured in the photos, I could hear laughter and talking on a video tape playing on a screen in the background. For some reason, I couldn't bring myself to watch though.
The service would be starting soon so I figured I should find some of the other Liver moms who said they'd be there too. Along the back wall of the chapel, there was a brown organ in the corner. I headed for that spot since all of the pews were filled already. Luckily, I found Kristen, Havalah's mom, there too. She pointed to Sheri in the front row, and said, "If you want to talk to her, now is a good time." As I approached Sheri, she was embracing a woman I didn't know. The embrace lasted a few minutes. I smiled at Sheri. From my perspective, it seemed Sheri needed the embrace. She needed human touch. She needed the soothing from that hug.
Sheri's arms crossed over my shoulders. I could feel her trembling, and I'm sure I was too. She hugged me tightly, and whispered, "Can you do something for me please?"
"Yes, anything," I replied.
"Get me the pictures of Antonio from Halloween," she said while exhaling.
"Will do Sheri. Anything honey. I'll never forget him...ever. Please know that." I didn't know what to say, but she seemed content with my response. Then, she sat down in the pew next to her daughter, Aurora, and took careful time to introduce me to her husband and children. They are a beautiful family, but their expressions said it all...pure pain. I wanted so much to make their terrible nightmare go away, but like most helpless bystanders, there was little I could do except get those pictures for Sheri.
"Ricardo, Jen has two girls, Grace and Meghan, who have Alpha-1," came from Sheri. It took my breath away that she was able to recall the details in such a time of shock and stress. Sheri is simply amazing.
I approached the front of the chapel. Antonio peacefully graced his tiny white coffin. I nervously smiled at him and all of his stuffed animal frogs. I will remember him in life though. His exhuberance. His inquisitiveness. His love for his mommy. His beautiful brown eyes. His beautiful 3 year old self.
The service began shortly after.
Tears would periodically well up in my eyes. As a liver mom, I wanted to be there, but being there brought out my worst fears for my daughters. Antonio was only 6 days older than Meghan. I quickly pushed the thoughts out of my mind as I would probably lose it if I let them come completely to fruition.
Haunting music played. Sheri trembled as the lyrics clearly had meaning to her. I had to find a spot on the wall to stare at so I could stuff down the urge to wail along with her. After all, another member of our liver family was gone. Antonio joined Hunter, Jayli, Gracie, Jackson Riley, Dillon, and all the liver angels. Heaven has another angel, and well, we all want him back.
For the rest of that day, and periodically since then, I have to take deep breaths. I hope that Sheri and her family are taking slow deep breaths to breathe their way through what may be a lifetime of breath after breath to get through. I can only imagine.
Antonio, I will never forget you little man. May you rest in peace.
A white paned door greeted me. I grabbed the brass handle and pulled. As the door swung open toward me, the force of some suction made me lean back to regain my balance. Going into the building seemed to take my breath away so I inhaled deeply again.
A young girl, maybe 6 or 7, skipped across my path on the sprawling green carpet in the entry way. Her silky brown hair bounced on her shoulders with each step. I smiled at her and momentarily forgot my purpose for the day.
As I scanned the room, I found another area where poster boards covered in pictures decorated the room's horizon. Upon entering the room, I took another deep breath. I didn't know what I should do next so I headed for the pictures. I knew I had to see the pictures. A lump welled up in my throat, and tears began to brim in my eyes.
Then, I saw those familiar chocolate eyes, Antonio's eyes. He had flashed them to me on the day we met. He was happily devouring some treats, and his mom, Sheri, proudly pointed to him dressed up in his Halloween costume. His siblings were gathered around him, guiding him. Sheri said, "Isn't he handsome?" I nodded in agreement, and then I pointed to him to show my daughter, Grace, that we were finally getting to meet Sweet Antonio. Sheri's bon bon.
I panned the first poster board, and saw love emanating from each image. Ricardo, Sheri, and their older children encircled Antonio in many of the images. I smiled through the tears and panic I was experiencing on the inside.
While browsing the memories captured in the photos, I could hear laughter and talking on a video tape playing on a screen in the background. For some reason, I couldn't bring myself to watch though.
The service would be starting soon so I figured I should find some of the other Liver moms who said they'd be there too. Along the back wall of the chapel, there was a brown organ in the corner. I headed for that spot since all of the pews were filled already. Luckily, I found Kristen, Havalah's mom, there too. She pointed to Sheri in the front row, and said, "If you want to talk to her, now is a good time." As I approached Sheri, she was embracing a woman I didn't know. The embrace lasted a few minutes. I smiled at Sheri. From my perspective, it seemed Sheri needed the embrace. She needed human touch. She needed the soothing from that hug.
Sheri's arms crossed over my shoulders. I could feel her trembling, and I'm sure I was too. She hugged me tightly, and whispered, "Can you do something for me please?"
"Yes, anything," I replied.
"Get me the pictures of Antonio from Halloween," she said while exhaling.
"Will do Sheri. Anything honey. I'll never forget him...ever. Please know that." I didn't know what to say, but she seemed content with my response. Then, she sat down in the pew next to her daughter, Aurora, and took careful time to introduce me to her husband and children. They are a beautiful family, but their expressions said it all...pure pain. I wanted so much to make their terrible nightmare go away, but like most helpless bystanders, there was little I could do except get those pictures for Sheri.
"Ricardo, Jen has two girls, Grace and Meghan, who have Alpha-1," came from Sheri. It took my breath away that she was able to recall the details in such a time of shock and stress. Sheri is simply amazing.
I approached the front of the chapel. Antonio peacefully graced his tiny white coffin. I nervously smiled at him and all of his stuffed animal frogs. I will remember him in life though. His exhuberance. His inquisitiveness. His love for his mommy. His beautiful brown eyes. His beautiful 3 year old self.
The service began shortly after.
Tears would periodically well up in my eyes. As a liver mom, I wanted to be there, but being there brought out my worst fears for my daughters. Antonio was only 6 days older than Meghan. I quickly pushed the thoughts out of my mind as I would probably lose it if I let them come completely to fruition.
Haunting music played. Sheri trembled as the lyrics clearly had meaning to her. I had to find a spot on the wall to stare at so I could stuff down the urge to wail along with her. After all, another member of our liver family was gone. Antonio joined Hunter, Jayli, Gracie, Jackson Riley, Dillon, and all the liver angels. Heaven has another angel, and well, we all want him back.
For the rest of that day, and periodically since then, I have to take deep breaths. I hope that Sheri and her family are taking slow deep breaths to breathe their way through what may be a lifetime of breath after breath to get through. I can only imagine.
Antonio, I will never forget you little man. May you rest in peace.
Wednesday, May 09, 2007
Happy 5th NICU Graduation Day Grace!
Yes, it was five short years ago that Gracie was discharged from the NICU. She had been there for 23 days. I remember being so relieved to bring her home with us, but then those normal "can I really do this?" fears crept into my mind. I was quietly freaking out on the inside.
Our former kitty, Eeyore, and current kitty, Winnie, greeted her at the front door. It was a super windy day, and we quickly took her in the house. After all, Gracie had been in the overprotective environment of the NICU, and now, she was out in the world. I was pretty naive then, but I suppose that was to be expected.
Weighing in at 4 pounds, 2 ounces on discharge day, she seemed so fragile and at that time was the tiniest baby I'd see up close. (Meghan subsequently changed my opinion of tiny.) As most newborns do, Grace slept most of her way through the first day at home and then promptly woke us up three times that night. I couldn't sleep anyway. She was one noisey little sleeper with her grunts, squeaks, and stretch noises, but I couldn't help but listen to her. It was all so sureal.
Ah memories...
Happy 5th anniversary of your NICU graduation Gracie! We're so proud of all you have achieved since then.
Love,
Mom
Our former kitty, Eeyore, and current kitty, Winnie, greeted her at the front door. It was a super windy day, and we quickly took her in the house. After all, Gracie had been in the overprotective environment of the NICU, and now, she was out in the world. I was pretty naive then, but I suppose that was to be expected.
Weighing in at 4 pounds, 2 ounces on discharge day, she seemed so fragile and at that time was the tiniest baby I'd see up close. (Meghan subsequently changed my opinion of tiny.) As most newborns do, Grace slept most of her way through the first day at home and then promptly woke us up three times that night. I couldn't sleep anyway. She was one noisey little sleeper with her grunts, squeaks, and stretch noises, but I couldn't help but listen to her. It was all so sureal.
Ah memories...
Happy 5th anniversary of your NICU graduation Gracie! We're so proud of all you have achieved since then.
Love,
Mom
Monday, May 07, 2007
Rest In Peace Antonio
I'm so sad to report that our liver friend, Sweet Antonio, went to Heaven this morning due to complications of his liver transplant 6 months ago. Please keep his family in your thoughts during this extremely difficult time.
http://www.caringbridge.org/visit/antonioperez
April 27, 2004 to May 7, 2007
http://www.caringbridge.org/visit/antonioperez
April 27, 2004 to May 7, 2007
Pediatric Grand Rounds
Another fabulous edition of Pediatric Grand Rounds is up on my favorite blog, The Wait and the Wonder:
http://thewaitandwonder.clubmom.com/thewaitandwonder/2007/05/pediatric_grand.html
I submitted my post entitled Yet Another Birthday Girl. This is my 2nd submission to be included. Yay!
The next Pediatric Grand Rounds will be hosted on Ami Chopine's blog on May 20th.
Enjoy the reading.
http://thewaitandwonder.clubmom.com/thewaitandwonder/2007/05/pediatric_grand.html
I submitted my post entitled Yet Another Birthday Girl. This is my 2nd submission to be included. Yay!
The next Pediatric Grand Rounds will be hosted on Ami Chopine's blog on May 20th.
Enjoy the reading.
Thursday, May 03, 2007
Yet Another Birthday Girl
Three years ago today, I was in labor and delivery at the hospital. Severe preeclampsia had taken its deep hold on me and my baby. Slow drips of magnesium sulfate flowed through my I.V. into a vein in my hand. As a result, I felt unbelievably hot. I kept asking my husband, Charlie, to turn down the heat in my L&D room. I finally giggled to myself as I suddenly realized that he had his coat on. That giggle quickly faded, and I was annoyed with the next thing to "insult" my senses.
My tongue was coated with a thick goo, and my eyes were so dry that my eye lids stuck to the whites of my eyes as I would blink. My lips were cracked and bleeding, as well. I could not get enough ice chips, and it seemed like the ice chips were being rationed to me in dredgingly slow installments. I begged for more any chance I could get. After all, who decided they had a corner on the market of frickin ice chips? C'mon!
A pulse oximeter made my left index finger glow orange, and it seemed clumsily placed and excessively heavy. It was a sunny spring day except that the blinds in my room were closed tightly. I couldn't stand the light...not even the slightest twinge of light. If I recall correctly, Charlie found anything he could to block the light from my eyes. In fact, he had actually placed towels and those "lovely" mesh underwear (about which most women who've had a child recognize) in the spaces where the light was seeping through the blinds.
On the wall directly across from my bed was something that glowed bright red...a dot of some kind. I remember wondering what it was, but it seemed to burn my eyes when I peered at it so I chose to look away from it. Any light seemed to hurt me, not in a painful way, but in a way that sent electrical currents through the my body.
Because my respirations had been depressed by the magnesium sulfate, I wore a nasal cannula across my top lip to keep up my oxygen saturation. Two prongs of clear plastic tubing popped in and out of my nose as I shifted around, waiting in my bed for some word of what would happen next after 9 days of complete bedrest in the hospital. The cannula was driving me crazy, and the scent from the oxygen being administered to me was sickeningly sweet. It was yet another assault on my senses.
One good thing had happened though. Magnesium sulfate had reminded my kidneys how to function. The unfortunate part was that I was confined to bed because my blood pressure was shockingly high. This meant I could either have a catheter or I could use a bed pan. Guess which one I chose?
If you know me well, you'd know that I think catheters are an evil invention. In me, they produce searing "red hot poker" pain in a place that is indescribable. So, my nurse agreed to produce said bed pan upon my request. In about 20 minute intervals, an urge appeared. So, I'd shimy on and off of the bed pan. All because I didn't want that catheter. Did I tell you this was the good part? Hey, it was a pee-pee celebration when my kidneys kicked back in. Everybody was happy. :) It was like I was 2 again.
At this point, it was determined that I needed to have another ultrasound and biophysical profile (BPP) of the baby. So, I was wheeled into the Perinatal Center still in my bed. A pillow and blanket were strategically placed over my eyes to shield me from the light. I felt like Gizmo from the Gremlins movie. "Bright light! Bright light! I'm melting! I'm melting!" How do you like that mixed movie metaphor? :)
Charlie and I were in a small space where there was a monitor on the wall near the ceiling. Oozing gell was dripping on my stomach as the technician rolled the ultrasound wand around. Measurements were taken. Levels of amniotic fluid were checked. Pee was making my bladder feel like exploding. I could neither concentrate nor see anymore. The magnesium sulfate had produced large black blobs of blindness throughout most of my field of vision. Charlie seemed excited to see the baby and was mentioning things he could see. "Oh, there is the heart beating, and the spine..."
All in all, the results were bad. The baby had not grown at all in one week. The baby was estimated to weigh 1 pound, 11 ounces. This meant I needed to deliver the baby. My body was no longer providing a hospitable place to grow a baby. Overall, it was shutting down in any way it could. Baby and me were going to be separated today. You might be shocked to hear that I was relieved. I couldn't wait to start the preeclampsia healing process. I was tired, swollen, hot, dry, and mostly temporarily insane. Preeclampia challenges your sanity, and for awhile, it won.
As late afternoon approached, I noticed that my Braxton-Hicks contractions were suddenly happening a lot more and with some intensity. My belly would become hard as a brick and that urge to use the bed pan was strong. It was strange that I had no control over this muscular response inside me. In fact, it annoyed me, but I was so focused on everything else that was insulting my senses, that it never occured to me what was really going on. I was just waiting for my doctor to arrive so he could perform my c-section.
That was until...
I had a big contraction. My involuntary response to that pain was to clutch my stomach and moan. After the pain faded, I immediately said to Charlie, "Something is wrong. Something is wrong! I need help. We need help." I began to feel a squishy sensation between my legs. "Is that blood? Crap!" I was only 27 weeks along in my pregnancy. How could it be that I was going into labor? Or, is my placenta abrupting? No, it can't be. Those were just Braxton-Hicks contractions. You know the fake kind. Not the kind that make a baby be born. No way! No how!" All of this insanity was flooding my thought, but I knew I'd have a c-section again. There was no way I would go into labor with this baby. It was simply too risky to go through labor with a 27 week baby.
A team of professionals suddenly emerged in the room. Charlie had gotten help. Unfortunately for me, they had to turn the lights on. It was as if I was staring into an eclipse. The light seared into my retinas. Then the pain returned. It was another contraction. Dr. Schultz (who had delivered my oldest daughter, Grace) decided to see what was happening. It appeared I had bloody show and was 3 centimeters dialated.
"What? How could that happen?"
Dr. Schultz said, "One way or another, you were going to have this baby today Jennifer. We'll still take you into the OR. Your baby is stable, but we have to wait until the OR becomes available. Dr. Carlson wants to do your c-section. He'll be here soon. Hang in there." At that point, she left.
In the meantime, a neonatologist appeared next to my bed. He was sent to give me information about a baby being born at 27 weeks gestation. I remember studying him through my mag-vision. He had bright white hair, and a wide, round face. His light blue scrubs were on. He muttered some details about 75% chance of survival, and getting past the first 4 days, and then past the one week mark to see true survival for my precious baby. It was information that made my head spin, but those contractions kept disturbing my concentration. I hoped that Charlie would be able to process better than me. I'd ask him later.
Eventually, I found myself being transferred to a sitting position on the surgical table. Sitting wasn't that easy anymore. I hadn't sat up in many days. I felt whoozy and my head wouldn't stay upright. I bent down over the hump in my stomach and clutched my knees. A needle was inserted into my spinal fluid to numb me. I quickly laid down before I lost sensation. In what seemed like a split second, drapes appeared across my chest. My arms were stretched out on boards.
Charlie suddenly appeared next to my head in full surgical clothes. He held my left hand. It smelled like popcorn to me. It was really cauterization going on as part of my c-section.
"It's a girl!" came out from underneath Dr. Carlson's mask. I looked up and to my left side and saw the umbilical cord hanging down. It was slim but white. I didn't see the baby though. It was just a flash.
Charlie said, "It's a Meghan." All that I could hear was the silence. There was no baby shrieking. Not like Gracie had shrieked when she was born.
At this point, I began to mutter. "My baby, my baby, my baby." Tears streamed down my cheeks.
I wanted her back. It was too soon. This could not be happening. There was no crying. There was no crying. (Charlie later told me that Meghan did cry. She mewed like a tiny kitten.)
"Go see her!" I commanded Charlie. He was reluctant to do so. I couldn't see what was happening. He knew they were providing stimulation and oxygen by bagging her. He knew he'd be in the way. I didn't know though. I was suddenly completely dumb and in shock. I couldn't process.
After a few minutes, Charlie was asked to cut the rest of the umbilical cord away from Meghan's body. She was breathing. She was breathing. She was beautiful is what he said, but tiny.
Suddenly, I was jerked back into reality again. I felt like I was going to hurl. It felt like someone was standing on my stomach doing jumping jacks. It didn't hurt. It felt dull, but I was amazed that I could feel it. I started to wretch and wretch and wretch...all that came up was some ice chip residue.
My eyes darted around the room. It was really bright. Dr. Carlson told me that my placenta was stuck. It wouldn't come free which is why he was tugging on me so much. Um, more like standing on me doc!
Finally, the neonatologist appeared next to my head. Fortunately for me, he was standing on my left side. I could see just a sliver of "real vision" in my left eye. Through the slit, I could see that in his adult sized hand was my baby. My tiny, Meghan. My heart.
Her head was smaller than a tennis ball and popped out of his fist. Her eyes were slammed shut, and the skin on her forehead was wrinkled in 3 or 4 large wrinkles. She looked like one of those hairless cats, in a way. Fine blonde hair was all over her head and face, but it appeared that her the hair on her head was reddish and slightly curling. She seemed really rosey pink, almost peachy in color to me.
Meghan's tiny hand was resting between the neo's fingers, and he grasped her legs with his other hand. "Here she is Mom," came out of the neonatologist's mask. "Take a quick look and then we're off to the NICU." I touched her tiny toothpick sized fingers on one hand, and then she was gone inside his hands. She wasn't inside me any longer. It would take some getting used to.
***********************************************
Today is Meghan's third birthday. Three years have passed since that day I just described. It is amazing to me that she has come so far since her 1 pound, 9.5 ounce birth at 27 weeks. Today, we celebrate Meghan's miraculous beginning. We celebrate that after 79 days, Meghan was able to join our family in our home.
We celebrate that Meghan entered physical, speech, and occupational therapy to help her grow and thrive. We celebrate that gaining weight has always been at a snail's pace for her. We celebrate the need to buy her pediasure. We celebrate that her vocabulary has exploded. "My birthday comed up! I'm 3 today."
We celebrate her. The way she cocks her head slightly to side to emphasize her point. The way her eyes glimmer as she snatches a toy away from Gracie. Her left thumb as it is suctioned back into her narrow palet. Her drool which runs down her left arm as she sucks her thumb. Her demands to have a book read to her. Her "I hasta go potty." proclamations. Her need to lean on you. Her way of walking up stairs with no hands, but always using only one foot to get up the stairs. Her demands of one more song before bed. "Sing the Fishy song, mommy."
We celebrate our miracle and all of her flaws and strengths. We love you forever baby girl! Happy 3rd birthday Boo Boo!
My tongue was coated with a thick goo, and my eyes were so dry that my eye lids stuck to the whites of my eyes as I would blink. My lips were cracked and bleeding, as well. I could not get enough ice chips, and it seemed like the ice chips were being rationed to me in dredgingly slow installments. I begged for more any chance I could get. After all, who decided they had a corner on the market of frickin ice chips? C'mon!
A pulse oximeter made my left index finger glow orange, and it seemed clumsily placed and excessively heavy. It was a sunny spring day except that the blinds in my room were closed tightly. I couldn't stand the light...not even the slightest twinge of light. If I recall correctly, Charlie found anything he could to block the light from my eyes. In fact, he had actually placed towels and those "lovely" mesh underwear (about which most women who've had a child recognize) in the spaces where the light was seeping through the blinds.
On the wall directly across from my bed was something that glowed bright red...a dot of some kind. I remember wondering what it was, but it seemed to burn my eyes when I peered at it so I chose to look away from it. Any light seemed to hurt me, not in a painful way, but in a way that sent electrical currents through the my body.
Because my respirations had been depressed by the magnesium sulfate, I wore a nasal cannula across my top lip to keep up my oxygen saturation. Two prongs of clear plastic tubing popped in and out of my nose as I shifted around, waiting in my bed for some word of what would happen next after 9 days of complete bedrest in the hospital. The cannula was driving me crazy, and the scent from the oxygen being administered to me was sickeningly sweet. It was yet another assault on my senses.
One good thing had happened though. Magnesium sulfate had reminded my kidneys how to function. The unfortunate part was that I was confined to bed because my blood pressure was shockingly high. This meant I could either have a catheter or I could use a bed pan. Guess which one I chose?
If you know me well, you'd know that I think catheters are an evil invention. In me, they produce searing "red hot poker" pain in a place that is indescribable. So, my nurse agreed to produce said bed pan upon my request. In about 20 minute intervals, an urge appeared. So, I'd shimy on and off of the bed pan. All because I didn't want that catheter. Did I tell you this was the good part? Hey, it was a pee-pee celebration when my kidneys kicked back in. Everybody was happy. :) It was like I was 2 again.
At this point, it was determined that I needed to have another ultrasound and biophysical profile (BPP) of the baby. So, I was wheeled into the Perinatal Center still in my bed. A pillow and blanket were strategically placed over my eyes to shield me from the light. I felt like Gizmo from the Gremlins movie. "Bright light! Bright light! I'm melting! I'm melting!" How do you like that mixed movie metaphor? :)
Charlie and I were in a small space where there was a monitor on the wall near the ceiling. Oozing gell was dripping on my stomach as the technician rolled the ultrasound wand around. Measurements were taken. Levels of amniotic fluid were checked. Pee was making my bladder feel like exploding. I could neither concentrate nor see anymore. The magnesium sulfate had produced large black blobs of blindness throughout most of my field of vision. Charlie seemed excited to see the baby and was mentioning things he could see. "Oh, there is the heart beating, and the spine..."
All in all, the results were bad. The baby had not grown at all in one week. The baby was estimated to weigh 1 pound, 11 ounces. This meant I needed to deliver the baby. My body was no longer providing a hospitable place to grow a baby. Overall, it was shutting down in any way it could. Baby and me were going to be separated today. You might be shocked to hear that I was relieved. I couldn't wait to start the preeclampsia healing process. I was tired, swollen, hot, dry, and mostly temporarily insane. Preeclampia challenges your sanity, and for awhile, it won.
As late afternoon approached, I noticed that my Braxton-Hicks contractions were suddenly happening a lot more and with some intensity. My belly would become hard as a brick and that urge to use the bed pan was strong. It was strange that I had no control over this muscular response inside me. In fact, it annoyed me, but I was so focused on everything else that was insulting my senses, that it never occured to me what was really going on. I was just waiting for my doctor to arrive so he could perform my c-section.
That was until...
I had a big contraction. My involuntary response to that pain was to clutch my stomach and moan. After the pain faded, I immediately said to Charlie, "Something is wrong. Something is wrong! I need help. We need help." I began to feel a squishy sensation between my legs. "Is that blood? Crap!" I was only 27 weeks along in my pregnancy. How could it be that I was going into labor? Or, is my placenta abrupting? No, it can't be. Those were just Braxton-Hicks contractions. You know the fake kind. Not the kind that make a baby be born. No way! No how!" All of this insanity was flooding my thought, but I knew I'd have a c-section again. There was no way I would go into labor with this baby. It was simply too risky to go through labor with a 27 week baby.
A team of professionals suddenly emerged in the room. Charlie had gotten help. Unfortunately for me, they had to turn the lights on. It was as if I was staring into an eclipse. The light seared into my retinas. Then the pain returned. It was another contraction. Dr. Schultz (who had delivered my oldest daughter, Grace) decided to see what was happening. It appeared I had bloody show and was 3 centimeters dialated.
"What? How could that happen?"
Dr. Schultz said, "One way or another, you were going to have this baby today Jennifer. We'll still take you into the OR. Your baby is stable, but we have to wait until the OR becomes available. Dr. Carlson wants to do your c-section. He'll be here soon. Hang in there." At that point, she left.
In the meantime, a neonatologist appeared next to my bed. He was sent to give me information about a baby being born at 27 weeks gestation. I remember studying him through my mag-vision. He had bright white hair, and a wide, round face. His light blue scrubs were on. He muttered some details about 75% chance of survival, and getting past the first 4 days, and then past the one week mark to see true survival for my precious baby. It was information that made my head spin, but those contractions kept disturbing my concentration. I hoped that Charlie would be able to process better than me. I'd ask him later.
Eventually, I found myself being transferred to a sitting position on the surgical table. Sitting wasn't that easy anymore. I hadn't sat up in many days. I felt whoozy and my head wouldn't stay upright. I bent down over the hump in my stomach and clutched my knees. A needle was inserted into my spinal fluid to numb me. I quickly laid down before I lost sensation. In what seemed like a split second, drapes appeared across my chest. My arms were stretched out on boards.
Charlie suddenly appeared next to my head in full surgical clothes. He held my left hand. It smelled like popcorn to me. It was really cauterization going on as part of my c-section.
"It's a girl!" came out from underneath Dr. Carlson's mask. I looked up and to my left side and saw the umbilical cord hanging down. It was slim but white. I didn't see the baby though. It was just a flash.
Charlie said, "It's a Meghan." All that I could hear was the silence. There was no baby shrieking. Not like Gracie had shrieked when she was born.
At this point, I began to mutter. "My baby, my baby, my baby." Tears streamed down my cheeks.
I wanted her back. It was too soon. This could not be happening. There was no crying. There was no crying. (Charlie later told me that Meghan did cry. She mewed like a tiny kitten.)
"Go see her!" I commanded Charlie. He was reluctant to do so. I couldn't see what was happening. He knew they were providing stimulation and oxygen by bagging her. He knew he'd be in the way. I didn't know though. I was suddenly completely dumb and in shock. I couldn't process.
After a few minutes, Charlie was asked to cut the rest of the umbilical cord away from Meghan's body. She was breathing. She was breathing. She was beautiful is what he said, but tiny.
Suddenly, I was jerked back into reality again. I felt like I was going to hurl. It felt like someone was standing on my stomach doing jumping jacks. It didn't hurt. It felt dull, but I was amazed that I could feel it. I started to wretch and wretch and wretch...all that came up was some ice chip residue.
My eyes darted around the room. It was really bright. Dr. Carlson told me that my placenta was stuck. It wouldn't come free which is why he was tugging on me so much. Um, more like standing on me doc!
Finally, the neonatologist appeared next to my head. Fortunately for me, he was standing on my left side. I could see just a sliver of "real vision" in my left eye. Through the slit, I could see that in his adult sized hand was my baby. My tiny, Meghan. My heart.
Her head was smaller than a tennis ball and popped out of his fist. Her eyes were slammed shut, and the skin on her forehead was wrinkled in 3 or 4 large wrinkles. She looked like one of those hairless cats, in a way. Fine blonde hair was all over her head and face, but it appeared that her the hair on her head was reddish and slightly curling. She seemed really rosey pink, almost peachy in color to me.
Meghan's tiny hand was resting between the neo's fingers, and he grasped her legs with his other hand. "Here she is Mom," came out of the neonatologist's mask. "Take a quick look and then we're off to the NICU." I touched her tiny toothpick sized fingers on one hand, and then she was gone inside his hands. She wasn't inside me any longer. It would take some getting used to.
***********************************************
Today is Meghan's third birthday. Three years have passed since that day I just described. It is amazing to me that she has come so far since her 1 pound, 9.5 ounce birth at 27 weeks. Today, we celebrate Meghan's miraculous beginning. We celebrate that after 79 days, Meghan was able to join our family in our home.
We celebrate that Meghan entered physical, speech, and occupational therapy to help her grow and thrive. We celebrate that gaining weight has always been at a snail's pace for her. We celebrate the need to buy her pediasure. We celebrate that her vocabulary has exploded. "My birthday comed up! I'm 3 today."
We celebrate her. The way she cocks her head slightly to side to emphasize her point. The way her eyes glimmer as she snatches a toy away from Gracie. Her left thumb as it is suctioned back into her narrow palet. Her drool which runs down her left arm as she sucks her thumb. Her demands to have a book read to her. Her "I hasta go potty." proclamations. Her need to lean on you. Her way of walking up stairs with no hands, but always using only one foot to get up the stairs. Her demands of one more song before bed. "Sing the Fishy song, mommy."
We celebrate our miracle and all of her flaws and strengths. We love you forever baby girl! Happy 3rd birthday Boo Boo!
Wednesday, May 02, 2007
Alpha-1 and CLiC
I thought I'd share the article I wrote for the Alpha-1 News
A Quest for Answers
A persistent question within the Alpha-1 community is why some individuals are liver-affected, lung-affected, or both. In the last few years, Dr. Ronald Sokol, Professor of Pediatrics at the University of Colorado School of Medicine and The Children’s Hospital in Denver, led a group of investigators to form the Cholestatic Liver Disease Consortium (CLiC) in an effort to begin to understand why some Alphas develop liver disease in childhood. As the principal investigator of CLiC, Dr. Sokol’s mission is to find answers to questions.
“One of the most important questions” says Dr. Sokol “is why do some people, particularly children, develop liver problems and others don’t, yet they have the same genetic mutation in the Alpha-1 gene. Only 10-15% are recognized as having a liver problem during childhood, and it is usually during the first few months or first few years of life. Sometimes the liver problem is quite severe, requiring liver transplantation in childhood.”
CLiC is a collaborative team of doctors, scientists, nurses, research coordinators, statisticians and patient support organizations throughout the US and UK, working together to improve the lives of children affected by rare cholestatic (poor bile flow) liver diseases. Alpha-1 Antitrypsin Deficiency is one of these diseases. The purpose of CLiC is to provide a way for patients and families to partner with doctors and researchers by participating in research studies.
With the infrastructure in place to make CLiC run, a research study is now under review and hopefully approved very soon. Dr. Sokol shared, “We’re going to conduct a longitudinal study of Alpha-1, in which we will follow for 5 years up to 250 children and young adults up to the age of 25 years with Alpha-1 and liver problems. One of the major purposes of the study is to define the natural history of Alpha-1 liver disease.”
There are many questions to be answered, and Dr. Sokol explains the theory, “There must be some other factor involved, either in the Alpha-1 gene, in other genes, or an environmental factor. We hope to be able to start to address this by collecting DNA from the children and their parents to eventually look for other genes that might be inherited along with the Alpha-1 gene that would increase the susceptibility to liver disease or protect against liver disease.”
In order for this important research to go forward, there must be enough research participants to make the study effective. “We will make no progress in understanding Alpha-1 Antitrypsin Deficiency to any great extent, its effects on children, and the course of their liver disease without the participation of families. The individuals, who actually have the most to gain, are the affected families and the children. Without their participation we’d really never be able to understand this disease better or develop new therapies to give them a better outlook.”
Dr. Sokol adds, “We are trying to build the largest series of children with Alpha-1 to ever be in a single database. We will collect and store DNA and other information all linked to each other, in an ethically appropriate and confidential manner, for conducting clinical research in 2007 and beyond.”
Signing up to participate in the research conducted by CLiC is quite simple. CLiC operates a confidential contact registry, which
is available on its Web page: http://rarediseasesnetwork.org/clic. Dr. Sokol says, “For people around the country, that is the simplest way to become registered as being interested in this study. When the study is running, you will be given more information, and you can then make a choice about participation.”
When the study is approved and enrolling patients, research participants would be seen at one of the eleven CLiC clinical research centers participating in the study. “We would see the children as an outpatient once a year for five years. If the child has already undergone a liver transplant, we’d only see them one time for this study,” says Dr. Sokol. The list of participating centers appears on the CLiC Web site.
Only those individuals under the age of 25, who have SZ or ZZ phenotypes will be studied. Dr. Sokol explains, “In the study we will be collecting serum, urine, and blood (for DNA). This will help us to establish a biobank or a tissue repository that is linked to clinical information, so that investigators can ask/answer specific questions about Alpha-1 liver disease; this approach has not been taken in the past for children with Alpha-1 liver disease.”
CLiC is one of the Rare Disease Clinical Research Consortia funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Office of Rare Diseases, and the National Center for Research Resources of the National Institutes of Health (NIH). The project scientist is Patricia Robuck, Ph.D Additional funding comes from the Alpha-1 Foundation.
A Quest for Answers
A persistent question within the Alpha-1 community is why some individuals are liver-affected, lung-affected, or both. In the last few years, Dr. Ronald Sokol, Professor of Pediatrics at the University of Colorado School of Medicine and The Children’s Hospital in Denver, led a group of investigators to form the Cholestatic Liver Disease Consortium (CLiC) in an effort to begin to understand why some Alphas develop liver disease in childhood. As the principal investigator of CLiC, Dr. Sokol’s mission is to find answers to questions.
“One of the most important questions” says Dr. Sokol “is why do some people, particularly children, develop liver problems and others don’t, yet they have the same genetic mutation in the Alpha-1 gene. Only 10-15% are recognized as having a liver problem during childhood, and it is usually during the first few months or first few years of life. Sometimes the liver problem is quite severe, requiring liver transplantation in childhood.”
CLiC is a collaborative team of doctors, scientists, nurses, research coordinators, statisticians and patient support organizations throughout the US and UK, working together to improve the lives of children affected by rare cholestatic (poor bile flow) liver diseases. Alpha-1 Antitrypsin Deficiency is one of these diseases. The purpose of CLiC is to provide a way for patients and families to partner with doctors and researchers by participating in research studies.
With the infrastructure in place to make CLiC run, a research study is now under review and hopefully approved very soon. Dr. Sokol shared, “We’re going to conduct a longitudinal study of Alpha-1, in which we will follow for 5 years up to 250 children and young adults up to the age of 25 years with Alpha-1 and liver problems. One of the major purposes of the study is to define the natural history of Alpha-1 liver disease.”
There are many questions to be answered, and Dr. Sokol explains the theory, “There must be some other factor involved, either in the Alpha-1 gene, in other genes, or an environmental factor. We hope to be able to start to address this by collecting DNA from the children and their parents to eventually look for other genes that might be inherited along with the Alpha-1 gene that would increase the susceptibility to liver disease or protect against liver disease.”
In order for this important research to go forward, there must be enough research participants to make the study effective. “We will make no progress in understanding Alpha-1 Antitrypsin Deficiency to any great extent, its effects on children, and the course of their liver disease without the participation of families. The individuals, who actually have the most to gain, are the affected families and the children. Without their participation we’d really never be able to understand this disease better or develop new therapies to give them a better outlook.”
Dr. Sokol adds, “We are trying to build the largest series of children with Alpha-1 to ever be in a single database. We will collect and store DNA and other information all linked to each other, in an ethically appropriate and confidential manner, for conducting clinical research in 2007 and beyond.”
Signing up to participate in the research conducted by CLiC is quite simple. CLiC operates a confidential contact registry, which
is available on its Web page: http://rarediseasesnetwork.org/clic. Dr. Sokol says, “For people around the country, that is the simplest way to become registered as being interested in this study. When the study is running, you will be given more information, and you can then make a choice about participation.”
When the study is approved and enrolling patients, research participants would be seen at one of the eleven CLiC clinical research centers participating in the study. “We would see the children as an outpatient once a year for five years. If the child has already undergone a liver transplant, we’d only see them one time for this study,” says Dr. Sokol. The list of participating centers appears on the CLiC Web site.
Only those individuals under the age of 25, who have SZ or ZZ phenotypes will be studied. Dr. Sokol explains, “In the study we will be collecting serum, urine, and blood (for DNA). This will help us to establish a biobank or a tissue repository that is linked to clinical information, so that investigators can ask/answer specific questions about Alpha-1 liver disease; this approach has not been taken in the past for children with Alpha-1 liver disease.”
CLiC is one of the Rare Disease Clinical Research Consortia funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Office of Rare Diseases, and the National Center for Research Resources of the National Institutes of Health (NIH). The project scientist is Patricia Robuck, Ph.D Additional funding comes from the Alpha-1 Foundation.
Tuesday, May 01, 2007
Three Years Ago
Three years ago, I was on full bedrest in our hospital's antepartum unit. It was day 7 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 and I was swelling everywhere 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 husband, 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 7. 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 and I was swelling everywhere 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 husband, 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 7. 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.
Perfect Aim
...all over themselves!
Why is it that when children acquire a stomach flu virus that they inevitably come down with it as O-dark hundred and promptly puke in their beds and all over themselves? Inquiring minds want to know. Is it murphy's law or something?
Yes, you guessed right. The power of the pukiness has returned to the B family household. Yes, we won the stomach flu dance off and have one-by-one sent our girls to the vomitorium starting with Kesa, who passed it to Meghan, who passed it to Grace, who passed it to...hopefully not me or my dear husband. I'd like to boil myself right about now. Ewww!
Thankfully, Kesa is old enough to take care of business by herself, but our 5 and 3 year olds haven't yet.
Fun times at "party bug" central!
Why is it that when children acquire a stomach flu virus that they inevitably come down with it as O-dark hundred and promptly puke in their beds and all over themselves? Inquiring minds want to know. Is it murphy's law or something?
Yes, you guessed right. The power of the pukiness has returned to the B family household. Yes, we won the stomach flu dance off and have one-by-one sent our girls to the vomitorium starting with Kesa, who passed it to Meghan, who passed it to Grace, who passed it to...hopefully not me or my dear husband. I'd like to boil myself right about now. Ewww!
Thankfully, Kesa is old enough to take care of business by herself, but our 5 and 3 year olds haven't yet.
Fun times at "party bug" central!
Thursday, April 26, 2007
Alpha-1 Video
This showed up on my Google feed today. Cool! The author of the video says this about the video:
"stylized (and not too biologically correct) representation of the genetic disease alpha 1 antitrypsin deficiency"
Click twice on the movie to play it.
Tuesday, April 24, 2007
Liver Heal Thy Self
Source: http://www.sciam.com/article.cfm?articleID=9F4CE513-E7F2-99DF-3B827D53632DD53C&chanID=sa003
March 29, 2007 (Scientific American)
Gene Activates Liver Repair
Hunting for a way to let the liver heal itself without causing more harm than good
By JR Minkel
Researchers may have identified a master switch that activates the liver's ability to heal itself, suggesting a route to better treatments for liver diseases such as hepatitis and cirrhosis. Mice that lacked the gene showed a marked deterioration in their livers and lived shorter lives than normal mice.
Damage to the liver activates a group of specialized wound-healers called hepatic stellate cells (HSCs), which churn out scaffoldlike collagen fibers that support the growth of new liver cells. "You want the cells to get activated but you don't want them to stay activated for too long," says neurobiologist Katerina Akassoglou of the University of California, San Diego, because the fibers begin substituting for healthy liver tissue, leading to liver failure in people with chronic cirrhosis, for example. But researchers do not know which genes control the process.
Akassoglou and her colleagues thought they had a good candidate in the gene for the p75 neurotrophin receptor (p75NTR), a regulator of cell death in the brain that also switches on soon after liver injuries. Using mice that had a propensity for liver disease, her team created a strain of rodents that lacked the p75NTR gene. The livers of the engineered mice were covered in lesions after 10 weeks, and only half of the animals lived longer than that, compared with more than six months for the unmodified rodents.
The p75NTR protein sits on the surface of HSCs. The group believes that when activated by a still-unknown agent after liver damage, it stimulates a cascade of signals inside the cells that trigger them to begin the healing process, according to results presented in this week's Science. The next step, Akassoglou says, is to determine the role p75NTR plays in later stages of liver disease, to see if shutting it down will stop the harmful production of collagen.
"If you know what the switch is," she says, "and if you know how these cells become quiescent again … then you can start interfering with this process."
March 29, 2007 (Scientific American)
Gene Activates Liver Repair
Hunting for a way to let the liver heal itself without causing more harm than good
By JR Minkel
Researchers may have identified a master switch that activates the liver's ability to heal itself, suggesting a route to better treatments for liver diseases such as hepatitis and cirrhosis. Mice that lacked the gene showed a marked deterioration in their livers and lived shorter lives than normal mice.
Damage to the liver activates a group of specialized wound-healers called hepatic stellate cells (HSCs), which churn out scaffoldlike collagen fibers that support the growth of new liver cells. "You want the cells to get activated but you don't want them to stay activated for too long," says neurobiologist Katerina Akassoglou of the University of California, San Diego, because the fibers begin substituting for healthy liver tissue, leading to liver failure in people with chronic cirrhosis, for example. But researchers do not know which genes control the process.
Akassoglou and her colleagues thought they had a good candidate in the gene for the p75 neurotrophin receptor (p75NTR), a regulator of cell death in the brain that also switches on soon after liver injuries. Using mice that had a propensity for liver disease, her team created a strain of rodents that lacked the p75NTR gene. The livers of the engineered mice were covered in lesions after 10 weeks, and only half of the animals lived longer than that, compared with more than six months for the unmodified rodents.
The p75NTR protein sits on the surface of HSCs. The group believes that when activated by a still-unknown agent after liver damage, it stimulates a cascade of signals inside the cells that trigger them to begin the healing process, according to results presented in this week's Science. The next step, Akassoglou says, is to determine the role p75NTR plays in later stages of liver disease, to see if shutting it down will stop the harmful production of collagen.
"If you know what the switch is," she says, "and if you know how these cells become quiescent again … then you can start interfering with this process."
Friday, April 20, 2007
Another Birthday Girl
Today is my step-daughter, Kesa's, birthday. Happy 15th Kesa! I'm having a hard time believing it was so long ago that she came into my life. Time certainly does seem to speed up when you are observing a child grow up.
In a fitting tribute, I thought it worthwhile to share one of my more vivid memories of Kesa as a baby.
Kesa was crawling age. I think about 9 months old, but my memory is fading. At that time, her blond curls sprung up off her head and her cherubic cheeks glowed with a pink hue. I remember being shocked by how much she looked like Charlie.
As her chubby thighs and knees pushed against the brown carpet, she giggled and shrieked with joy as she approached me sitting on a sofa. I couldn't help but smile at her excitement. Charlie egged her on with "Come to Dada! Come to Dada!" Kesa squealed with delight and swiftly crawled about 6 feet toward us.
Charlie scooped her up, and that was when I first really witnessed the father-daughter bond between them. He kissed her cheek a bunch of times, and then put her down on the floor again. Kesa giggled again, and promptly crawled off toward her Papa. I knew Charlie was proud, but he exuded pride and parental love that day. I hope my memory of that day pays tribute to Charlie and Kesa's relationship.
Has it really been 15 years?
As Kesa prepares to learn how to drive, becomes more interested in boys, and works her way through high school, I see Charlie's bond continuing to deepen. He aches to talk to her on the phone or get an email from his busy teenager these days. (Kesa lives 4 hours away from us.)
I guess it makes me appreciate what we have with Grace and Meghan even more. They, too, will grow up too fast, and I had better appreciate them as little girls while I can.
Happy Birthday Kesa!
In a fitting tribute, I thought it worthwhile to share one of my more vivid memories of Kesa as a baby.
Kesa was crawling age. I think about 9 months old, but my memory is fading. At that time, her blond curls sprung up off her head and her cherubic cheeks glowed with a pink hue. I remember being shocked by how much she looked like Charlie.
As her chubby thighs and knees pushed against the brown carpet, she giggled and shrieked with joy as she approached me sitting on a sofa. I couldn't help but smile at her excitement. Charlie egged her on with "Come to Dada! Come to Dada!" Kesa squealed with delight and swiftly crawled about 6 feet toward us.
Charlie scooped her up, and that was when I first really witnessed the father-daughter bond between them. He kissed her cheek a bunch of times, and then put her down on the floor again. Kesa giggled again, and promptly crawled off toward her Papa. I knew Charlie was proud, but he exuded pride and parental love that day. I hope my memory of that day pays tribute to Charlie and Kesa's relationship.
Has it really been 15 years?
As Kesa prepares to learn how to drive, becomes more interested in boys, and works her way through high school, I see Charlie's bond continuing to deepen. He aches to talk to her on the phone or get an email from his busy teenager these days. (Kesa lives 4 hours away from us.)
I guess it makes me appreciate what we have with Grace and Meghan even more. They, too, will grow up too fast, and I had better appreciate them as little girls while I can.
Happy Birthday Kesa!
Thursday, April 19, 2007
Magnesium Sulfate Protects Preemies?
I received mag with both Grace and Meghan while I was still pregnant. Hmmmm...
Magnesium sulfate may protect very preterm infants from brain injury
http://www.therapeuticsdaily.com/news/article.cfm?contentValue=1319047&contentType=sentryarticle&channelID=30
Reuters Health - Apr. 17, 2007
NEW YORK (Reuters Health) - Magnesium sulfate given before very preterm birth may protect infants against brain injury without harming the mother, according to a report in the March issue of BJOG: An International Journal of Obstetrics and Gynecology. However, the benefit is not strong enough to recommend widespread adoption of the strategy.
Several reports have suggested that prenatal administration of magnesium sulfate for tocolysis or preeclampsia is associated with lower neonatal mortality and lower risk of cerebral palsy in very-low-birth-weight children, the authors explain.
Dr. Stephane Marret from Rouen University Hospital, France and associates investigated whether a single infusion of magnesium sulfate to women at risk of very preterm delivery would prevent neonatal mortality and/or white matter injury.
Slightly more women treated with magnesium sulfate (53.9%) had prolonged prelabor rupture of membranes (PPROM) than women who received placebo (46.6%), the authors report, but otherwise the groups had similar maternal and pregnancy characteristics.
There were no major maternal adverse effects among women treated with magnesium sulfate, the results indicate, and labor and delivery outcomes were similar for the two groups. Women in the magnesium sulfate group did, however, have a significantly higher rate of maternal-fetal infections.
Total neonatal mortality before hospital discharge, severe white matter injury, and the combination of the two were lower for the magnesium sulfate group, the researchers note, but the differences did not reach statistical significance.
Secondary cranial ultrasound outcomes also did not differ significantly among the 665 infants with available data, the report indicates, although the rate of all white matter injury and the rate of nonparenchymal hemorrhages were lower in the magnesium sulfate group than in the placebo group.
"The lack of a significant magnesium sulfate effect ... may be explained by the higher frequencies of PPROM and/or maternal-fetal infection observed in our magnesium sulfate group that may have counterbalanced the neuroprotective effect of magnesium," the investigators say.
"Our findings suggest a neuroprotective effect of magnesium sulfate given before very-preterm birth but do not provide strong enough evidence for recommending widespread magnesium sulfate use in clinical practice," Dr. Marret and colleagues conclude.
BJOG 2007;114:310-318.
Magnesium sulfate may protect very preterm infants from brain injury
http://www.therapeuticsdaily.com/news/article.cfm?contentValue=1319047&contentType=sentryarticle&channelID=30
Reuters Health - Apr. 17, 2007
NEW YORK (Reuters Health) - Magnesium sulfate given before very preterm birth may protect infants against brain injury without harming the mother, according to a report in the March issue of BJOG: An International Journal of Obstetrics and Gynecology. However, the benefit is not strong enough to recommend widespread adoption of the strategy.
Several reports have suggested that prenatal administration of magnesium sulfate for tocolysis or preeclampsia is associated with lower neonatal mortality and lower risk of cerebral palsy in very-low-birth-weight children, the authors explain.
Dr. Stephane Marret from Rouen University Hospital, France and associates investigated whether a single infusion of magnesium sulfate to women at risk of very preterm delivery would prevent neonatal mortality and/or white matter injury.
Slightly more women treated with magnesium sulfate (53.9%) had prolonged prelabor rupture of membranes (PPROM) than women who received placebo (46.6%), the authors report, but otherwise the groups had similar maternal and pregnancy characteristics.
There were no major maternal adverse effects among women treated with magnesium sulfate, the results indicate, and labor and delivery outcomes were similar for the two groups. Women in the magnesium sulfate group did, however, have a significantly higher rate of maternal-fetal infections.
Total neonatal mortality before hospital discharge, severe white matter injury, and the combination of the two were lower for the magnesium sulfate group, the researchers note, but the differences did not reach statistical significance.
Secondary cranial ultrasound outcomes also did not differ significantly among the 665 infants with available data, the report indicates, although the rate of all white matter injury and the rate of nonparenchymal hemorrhages were lower in the magnesium sulfate group than in the placebo group.
"The lack of a significant magnesium sulfate effect ... may be explained by the higher frequencies of PPROM and/or maternal-fetal infection observed in our magnesium sulfate group that may have counterbalanced the neuroprotective effect of magnesium," the investigators say.
"Our findings suggest a neuroprotective effect of magnesium sulfate given before very-preterm birth but do not provide strong enough evidence for recommending widespread magnesium sulfate use in clinical practice," Dr. Marret and colleagues conclude.
BJOG 2007;114:310-318.
Monday, April 16, 2007
The Birthday Girl
Five years ago today, a tiny, fussy wrinkled baby girl came abruptly out of my stomach. She had been delivered by c-section by Dr. Schultz because I had severe preeclampsia. I remember her cries that were as if to say, "Put me back in there! I'm not ready to be born yet." My thoughts were very similar, but I was so very sick and relieved that my baby was alive and getting the important care she needed in our experienced NICU.
That day, I became a mother...a mom who felt an amazing amount of love. A love that I had never felt before. A love that I can't describe appropriately in words. It is a love to be experienced not written about. I'm quite certain the mothers who read this will agree.
That day, a force to be reckoned with was born. Her name is Grace Ann. My beautiful girl. Our gorgeous daughter. An extension of both myself and my husband.
Today, we celebrate Gracie.
We celebrate Grace's endless spinning, jumping, laughing, running, teasing, whining, giggling, silly self.
We celebrate her inner beauty. Her need to declare her love at random times. Her intense need to stroke her ears and anything remotely soft or silky. Her moments of shrieking as Meghan calls her stinker pooper head. Her neverending movement as we sit as a family at the dinner table. Her intense dread at the prospect of getting cold or chilly. Her need for at least 12-13 hours of sleep per day. Her grouchy self in the morning. Her ramming speed approach to all things. Her hugs which allow you to feel the depths of her soul.
We celebrate all of Grace. We celebrate her past, present, and future.
Plus, we celebrate all of these beautiful 5 year old faces, which continue to deepen our love for her.
Happy Birthday Gracie. We love you forever.
That day, I became a mother...a mom who felt an amazing amount of love. A love that I had never felt before. A love that I can't describe appropriately in words. It is a love to be experienced not written about. I'm quite certain the mothers who read this will agree.
That day, a force to be reckoned with was born. Her name is Grace Ann. My beautiful girl. Our gorgeous daughter. An extension of both myself and my husband.
Today, we celebrate Gracie.
We celebrate Grace's endless spinning, jumping, laughing, running, teasing, whining, giggling, silly self.
We celebrate her inner beauty. Her need to declare her love at random times. Her intense need to stroke her ears and anything remotely soft or silky. Her moments of shrieking as Meghan calls her stinker pooper head. Her neverending movement as we sit as a family at the dinner table. Her intense dread at the prospect of getting cold or chilly. Her need for at least 12-13 hours of sleep per day. Her grouchy self in the morning. Her ramming speed approach to all things. Her hugs which allow you to feel the depths of her soul.
We celebrate all of Grace. We celebrate her past, present, and future.
Plus, we celebrate all of these beautiful 5 year old faces, which continue to deepen our love for her.
Happy Birthday Gracie. We love you forever.
Friday, April 06, 2007
Boston Marathon
On Grace's birthday, we are honored that a member of the American Liver Foundation's Run for Research Team in the Boston Marathon will be running in honor of Grace & Meghan. The girls were matched with our runner, Jen. This is her 4th year running. WOW! I can't even run 4 blocks.
Please consider donating to Jen's fundraising effort:
http://www.active.com/donate/liverteam07/JDavis297
We're proud that Jen runs to help cure liver disease and Alpha-1 is one of those diseases.
Jen, Gracie and Meghan are very proud of you.
Please consider donating to Jen's fundraising effort:
http://www.active.com/donate/liverteam07/JDavis297
We're proud that Jen runs to help cure liver disease and Alpha-1 is one of those diseases.
Jen, Gracie and Meghan are very proud of you.
Wednesday, April 04, 2007
ELBW Research
That is extremely low birth weight (ELBW) for those of you who haven't had micropreemies. Meghan qualified for this birth weight and as such qualifies for a myriad of additional risk factors for which Gracie would not be at risk.
I'm still reading this blog post, and need time to absorb and reflect before I showcase my opinion here.
Needless to say, Meghan, while still very much alive and with us, may have life challenges because of her very early birth.
http://talesfromthewomb.blogspot.com/2007/03/objectivity-in-long-term-neonatal.html
Jen
I'm still reading this blog post, and need time to absorb and reflect before I showcase my opinion here.
Needless to say, Meghan, while still very much alive and with us, may have life challenges because of her very early birth.
http://talesfromthewomb.blogspot.com/2007/03/objectivity-in-long-term-neonatal.html
Jen
Tuesday, March 27, 2007
Preeclampsia and Future Cardiovascular Risk
7/10/2007: I'm not sure why but I've gotten at least 30 hits on this post in the last few days. A lot of people are being referred to this post via their email accounts. Anyone care to share what is so interesting about this post? As a survivor of preeclampsia, I'd love to hear what brings you here. Leave a comment please. :) Jen
More bad news for me as a two time severe preeclampsia survivor who developed hypertension after the birth of my 2nd daughter. Guess I'd better see what my internist thinks about this...
1: Expert Rev Cardiovasc Ther. 2007 Mar;5(2):283-94. Links
Preeclampsia and future cardiovascular risk.Newstead J, von Dadelszen P, Magee LA.
University of Saskatchewan, Department of Medicine, Saskatoon, SK, Canada. jill.newstead@shaw.ca
Pregnancy is a metabolic and vascular 'stress test' for women and those who 'fail' are at increased risk of long-term cardiovascular complications. Specifically, women who develop preeclampsia (and/or other manifestations of placental dysfunction) are at increased risk of coronary heart disease, stroke and cardiovascular disease in general. The risk is highest among women who develop both maternal (e.g., hypertension and proteinuria) and fetal (e.g., intrauterine growth restriction) manifestations of abnormal placentation, especially with preterm delivery. Most women who develop a maternal placental syndrome return to a normal clinical state in the weeks following pregnancy and their absolute risk of cardiovascular disease in the short term is very low. However, perhaps having a placentally complicated pregnancy affords women the opportunity to personalize risk and take action. Action is needed. The fact that we, as a population, are getting heavier and more sedentary is an urgent public health issue. The American Heart Association recommends that all women (even those at low cardiovascular risk) pursue dietary and lifestyle changes, in addition to smoking cessation. Engaging women of child-bearing age who may be motivated by a complicated pregnancy would be very valuable, from a public health perspective, given the prevalence and importance of cardiovascular disease in women, and the central role of the woman as caregiver to children, spouses and other family members.
PMID: 17338672 [PubMed - in process]
More bad news for me as a two time severe preeclampsia survivor who developed hypertension after the birth of my 2nd daughter. Guess I'd better see what my internist thinks about this...
1: Expert Rev Cardiovasc Ther. 2007 Mar;5(2):283-94. Links
Preeclampsia and future cardiovascular risk.Newstead J, von Dadelszen P, Magee LA.
University of Saskatchewan, Department of Medicine, Saskatoon, SK, Canada. jill.newstead@shaw.ca
Pregnancy is a metabolic and vascular 'stress test' for women and those who 'fail' are at increased risk of long-term cardiovascular complications. Specifically, women who develop preeclampsia (and/or other manifestations of placental dysfunction) are at increased risk of coronary heart disease, stroke and cardiovascular disease in general. The risk is highest among women who develop both maternal (e.g., hypertension and proteinuria) and fetal (e.g., intrauterine growth restriction) manifestations of abnormal placentation, especially with preterm delivery. Most women who develop a maternal placental syndrome return to a normal clinical state in the weeks following pregnancy and their absolute risk of cardiovascular disease in the short term is very low. However, perhaps having a placentally complicated pregnancy affords women the opportunity to personalize risk and take action. Action is needed. The fact that we, as a population, are getting heavier and more sedentary is an urgent public health issue. The American Heart Association recommends that all women (even those at low cardiovascular risk) pursue dietary and lifestyle changes, in addition to smoking cessation. Engaging women of child-bearing age who may be motivated by a complicated pregnancy would be very valuable, from a public health perspective, given the prevalence and importance of cardiovascular disease in women, and the central role of the woman as caregiver to children, spouses and other family members.
PMID: 17338672 [PubMed - in process]
Sunday, March 25, 2007
Seeing is Believing
Cross posting my entry on Preeclampsia Survivors:
http://preeclampsiasurvivors.blogspot.com/2007/03/seeing-is-believing.html
http://preeclampsiasurvivors.blogspot.com/2007/03/seeing-is-believing.html
Saturday, March 24, 2007
"This Close"
It has been a hard week for some of my online friends. Amanda from Imagine Bright Futures informed all of us at Liver Families that she had been diagnosed with breast cancer. It just seems like cruel irony that Amanda has to endure cancer along with her niece's biliary atresia. I will be praying for her as she undergoes a mastectomy on the 29th.
Then, I began reading heartbreaking posts from my pal, Sheri, whose son Antonio was critically ill. He had a liver transplant, but then developed Posttransplantation Lymphoproliferative Disorder (PTLD), which is a form of cancer caused by exposure to the Epstein-Barr Virus (EBV). It can happen in children who are immunosuppressed due to organ transplantation. After reading about Sheri's elation that Antonio had been given his life-saving gift of life, it seemed nearly impossible that she would be again watching her son slowly fade, and actually come "this close" when he had to fight pnuemonia on top of the PTLD.
Thankfully, Antonio has made marked improvement. Sheri has been away from her other three children for nearly a month, and like a God send, Kim, another Liver Families mom flew up from Texas to comfort Sheri. I think Kim's positive energy played a pivotal role in lifting Sheri up out of the darkest places that our minds can go when faced with life or death situations.
Charlie, Meghan, and I went to visit Sheri last night. She is still quite fragile and now her emotions are begining to bubble up at random points as it appears she is realizing how "this close" brushed up against her precious Antonio.
Antonio, I hope you are making your bull frog noise soon. Your mommy really, really needs to hear it soon. I hope those good vibes that Kim brought with her can somehow make their way through space and time and land on Amanda.
Then, I began reading heartbreaking posts from my pal, Sheri, whose son Antonio was critically ill. He had a liver transplant, but then developed Posttransplantation Lymphoproliferative Disorder (PTLD), which is a form of cancer caused by exposure to the Epstein-Barr Virus (EBV). It can happen in children who are immunosuppressed due to organ transplantation. After reading about Sheri's elation that Antonio had been given his life-saving gift of life, it seemed nearly impossible that she would be again watching her son slowly fade, and actually come "this close" when he had to fight pnuemonia on top of the PTLD.
Thankfully, Antonio has made marked improvement. Sheri has been away from her other three children for nearly a month, and like a God send, Kim, another Liver Families mom flew up from Texas to comfort Sheri. I think Kim's positive energy played a pivotal role in lifting Sheri up out of the darkest places that our minds can go when faced with life or death situations.
Charlie, Meghan, and I went to visit Sheri last night. She is still quite fragile and now her emotions are begining to bubble up at random points as it appears she is realizing how "this close" brushed up against her precious Antonio.
Antonio, I hope you are making your bull frog noise soon. Your mommy really, really needs to hear it soon. I hope those good vibes that Kim brought with her can somehow make their way through space and time and land on Amanda.
Monday, March 19, 2007
88
Today, my grandma Eve turned 88 years old. I've tried to imagine myself at the age of 88, and wonder if I'll be as eloquent, calm, stubborn, and diplomatic as she. What will unfold in my life between now and then, if I make it to 88 in the year 2060?
Will I still live in my own home?
Will I still drive my car, just around town?
Will I still cook? (Ha ha, my husband is laughing at that one.)
Will I revel in my children's accomplishments?
Will I revel in my grand children's accomplishments?
Will I revel in my great grand children, especially how they grow up so fast?
Will I still remember the subtle details of my life as she does?
Will I know how truly loved I am?
Will I know that my loved ones are dreading the "call" that will eventually come?
Tonight, Gram was her true self. She wouldn't let me ask much about her day. She wanted to know about me, my husband, my girls. Gram wouldn't have it any other way.
I got one hint from her though. She was extremely pleased that Mary Buchanan had sent her a birthday card. What made this such a blessing was that she believed her friend had passed on already. I could hear the happiness in her speech as it became rapid. She couldn't wait to tell me. Her pure joy emanated through the telephone as she expressed her friend from Oxford was alive.
Upon hearing the name, I had a flashback to being in a tiny church near Oxford and watching my grandparents greet the Buchanans before mass started. I was craning my neck to see their faces at about hip level on my Gram. Grandpa said, "Well, hi-a honey!" Mary smiled at me, and said, "I see the girls are up for a visit."
As conversations do, the topic eventually drifted to Grandma being proud of her three sons and how their families have blossomed. I suppose since birthdays make a person reflect, Gram revealed that she had actually had 5 pregnancies. "I was always so pleased that I had three boys, but I might have liked a daughter. I always thought that my miscarriages were my girls. You know my doctor wouldn't tell me whether they were boys or girls. She said it was better to focus on having another baby. I think she was right."
Well, Gram, you had to wait until 1972 to get me as your first grandchild. As you've told me multiple times, I know I've made you proud and that you love me. I love you too.
Happy birthday Grandma! I'm so lucky to have you in my life.
Love,
Jen
Will I still live in my own home?
Will I still drive my car, just around town?
Will I still cook? (Ha ha, my husband is laughing at that one.)
Will I revel in my children's accomplishments?
Will I revel in my grand children's accomplishments?
Will I revel in my great grand children, especially how they grow up so fast?
Will I still remember the subtle details of my life as she does?
Will I know how truly loved I am?
Will I know that my loved ones are dreading the "call" that will eventually come?
Tonight, Gram was her true self. She wouldn't let me ask much about her day. She wanted to know about me, my husband, my girls. Gram wouldn't have it any other way.
I got one hint from her though. She was extremely pleased that Mary Buchanan had sent her a birthday card. What made this such a blessing was that she believed her friend had passed on already. I could hear the happiness in her speech as it became rapid. She couldn't wait to tell me. Her pure joy emanated through the telephone as she expressed her friend from Oxford was alive.
Upon hearing the name, I had a flashback to being in a tiny church near Oxford and watching my grandparents greet the Buchanans before mass started. I was craning my neck to see their faces at about hip level on my Gram. Grandpa said, "Well, hi-a honey!" Mary smiled at me, and said, "I see the girls are up for a visit."
As conversations do, the topic eventually drifted to Grandma being proud of her three sons and how their families have blossomed. I suppose since birthdays make a person reflect, Gram revealed that she had actually had 5 pregnancies. "I was always so pleased that I had three boys, but I might have liked a daughter. I always thought that my miscarriages were my girls. You know my doctor wouldn't tell me whether they were boys or girls. She said it was better to focus on having another baby. I think she was right."
Well, Gram, you had to wait until 1972 to get me as your first grandchild. As you've told me multiple times, I know I've made you proud and that you love me. I love you too.
Happy birthday Grandma! I'm so lucky to have you in my life.
Love,
Jen
Sunday, March 11, 2007
Pediatric Grand Rounds
Pediatric Grand Rounds is up at:
http://blogmd.samblackman.org/?p=307
Special thanks go to Blog MD for his compilation this round.
http://blogmd.samblackman.org/?p=307
Special thanks go to Blog MD for his compilation this round.
Thursday, March 08, 2007
Promising Lung Research
Scientists develop new procedure to differentiate human embryonic stem cells
Molecular scientists at the Brown Foundation Institute of Molecular Medicine for the Prevention of Human Diseases (IMM) – which is part of the University of Texas Health Science Center at Houston – have developed a new procedure for the differentiation of human embryonic stem cells, with which they have created the first transplantable source of lung epithelial cells.
The process, created in the laboratory of Rick A. Wetsel, Ph.D., a professor of molecular medicine at the IMM, is described in this week’s edition of the Proceedings of the National Academy of Sciences. Research scientist Dachun Wang, M.D., is lead author of the article, “A pure population of lung alveolar epithelial type II cells derived from human embryonic stem cells.”
“We have developed a reliable molecular procedure which facilitates, via genetic selection, the differentiation of human embryonic stem cells into an essentially pure population of lung epithelial cells,” said Wetsel, noting the procedure also can be used to create other types of highly-specialized cells.
Scientists at the IMM used the in vitro method to create lung epithelial cells known as alveolar epithelial type II. The cells were derived from a human embryonic stem cell line approved by the National Institutes of Health (NIH).
The method involves the use of protein markers under the control of cell-specific promoters to convert undifferentiated human embryonic stem cells into highly-specialized cells. The human embryonic stem cells were cultured on specially coated dishes and transfected with a lung epithelial gene regulator of a drug selection gene.
“It is a general technology for developing select cells from human embryonic stem cells,” said C. Thomas Caskey, M.D., the IMM’s chief operating officer, director and CEO-elect. “The technology has allowed us to develop a platform that could potentially be useful in the development of spinal cord cells, heart cells, nerve cells and others.”
James T. Willerson, M.D., president of the UT Health Science Center at Houston, said " I believe this is an important development by the Wetsel laboratory at the IMM. I look forward to seeing its transitional impact."
Alveolar epithelial type II cells are called “the stem cells of the lungs” because of their versatility and many important functions. They produce proteins including surfactant that inflates lungs. They also make other cells lining the inner lung. “They regulate lung fluids and oxygen levels,” Wetsel said.
The cells are part of the tiny air sacs lining the lower airways known as alveoli. Tissue thin, they transfer oxygen into the blood and remove carbon dioxide. If the walls of the hundreds of millions of alveolus in a pair of lungs could be spread out and placed side by side, they would cover the floor of a classroom.
According to Wetsel, transplantable alveolar epithelial type II cells can be explored as treatments for pulmonary genetic diseases, acquired lung disease, as well as lung trauma caused by car accidents, gunshot wounds and sports injuries.
“These are the cells that can potentially be used for regenerative lung repair,” he said.
Hereditary lung disorders most likely to benefit from transplantation of alveolar epithelial type II cells include respiratory distress syndrome of the newborn, alpha-1 related emphysema and cystic fibrosis, Wetsel believes. “All three of these diseases are caused by single gene defects and therefore have been logical candidates for gene therapy,” Wetsel said.
Respiratory distress syndrome of the newborn, a condition affecting premature infants less than 37 weeks of age, may be caused by a genetic mutation triggering a surfactant shortage. Likewise, alpha-1 related emphysema, a condition affecting 100,000 Americans, results from an inherited deficiency of alpha-1 antitrypsin. Further, cystic fibrosis is the second most common childhood onset inherited disorder in the United States.
Transplantable alveolar epithelial type II cells may also one day be helpful in the treatment of other lung diseases including chronic obstructive pulmonary disease (COPD), the fourth leading cause of death in the United States, claiming the lives of 122,283 Americans in 2003, and asthma, Wetsel said.
Still years away from their use in regenerative medicine, Wetsel said the next step involves research trials with mice.
Source: University of Texas Health Science Center at Houston
Source: http://www.physorg.com/news91879247.html
Molecular scientists at the Brown Foundation Institute of Molecular Medicine for the Prevention of Human Diseases (IMM) – which is part of the University of Texas Health Science Center at Houston – have developed a new procedure for the differentiation of human embryonic stem cells, with which they have created the first transplantable source of lung epithelial cells.
The process, created in the laboratory of Rick A. Wetsel, Ph.D., a professor of molecular medicine at the IMM, is described in this week’s edition of the Proceedings of the National Academy of Sciences. Research scientist Dachun Wang, M.D., is lead author of the article, “A pure population of lung alveolar epithelial type II cells derived from human embryonic stem cells.”
“We have developed a reliable molecular procedure which facilitates, via genetic selection, the differentiation of human embryonic stem cells into an essentially pure population of lung epithelial cells,” said Wetsel, noting the procedure also can be used to create other types of highly-specialized cells.
Scientists at the IMM used the in vitro method to create lung epithelial cells known as alveolar epithelial type II. The cells were derived from a human embryonic stem cell line approved by the National Institutes of Health (NIH).
The method involves the use of protein markers under the control of cell-specific promoters to convert undifferentiated human embryonic stem cells into highly-specialized cells. The human embryonic stem cells were cultured on specially coated dishes and transfected with a lung epithelial gene regulator of a drug selection gene.
“It is a general technology for developing select cells from human embryonic stem cells,” said C. Thomas Caskey, M.D., the IMM’s chief operating officer, director and CEO-elect. “The technology has allowed us to develop a platform that could potentially be useful in the development of spinal cord cells, heart cells, nerve cells and others.”
James T. Willerson, M.D., president of the UT Health Science Center at Houston, said " I believe this is an important development by the Wetsel laboratory at the IMM. I look forward to seeing its transitional impact."
Alveolar epithelial type II cells are called “the stem cells of the lungs” because of their versatility and many important functions. They produce proteins including surfactant that inflates lungs. They also make other cells lining the inner lung. “They regulate lung fluids and oxygen levels,” Wetsel said.
The cells are part of the tiny air sacs lining the lower airways known as alveoli. Tissue thin, they transfer oxygen into the blood and remove carbon dioxide. If the walls of the hundreds of millions of alveolus in a pair of lungs could be spread out and placed side by side, they would cover the floor of a classroom.
According to Wetsel, transplantable alveolar epithelial type II cells can be explored as treatments for pulmonary genetic diseases, acquired lung disease, as well as lung trauma caused by car accidents, gunshot wounds and sports injuries.
“These are the cells that can potentially be used for regenerative lung repair,” he said.
Hereditary lung disorders most likely to benefit from transplantation of alveolar epithelial type II cells include respiratory distress syndrome of the newborn, alpha-1 related emphysema and cystic fibrosis, Wetsel believes. “All three of these diseases are caused by single gene defects and therefore have been logical candidates for gene therapy,” Wetsel said.
Respiratory distress syndrome of the newborn, a condition affecting premature infants less than 37 weeks of age, may be caused by a genetic mutation triggering a surfactant shortage. Likewise, alpha-1 related emphysema, a condition affecting 100,000 Americans, results from an inherited deficiency of alpha-1 antitrypsin. Further, cystic fibrosis is the second most common childhood onset inherited disorder in the United States.
Transplantable alveolar epithelial type II cells may also one day be helpful in the treatment of other lung diseases including chronic obstructive pulmonary disease (COPD), the fourth leading cause of death in the United States, claiming the lives of 122,283 Americans in 2003, and asthma, Wetsel said.
Still years away from their use in regenerative medicine, Wetsel said the next step involves research trials with mice.
Source: University of Texas Health Science Center at Houston
Source: http://www.physorg.com/news91879247.html
Saturday, March 03, 2007
Powerful Denial
Sometimes, my overwhelming desire to believe that my children will be okay runs my life very effectively. I go through the normal day-to-day experiences of raising my girls without much thought for Alpha-1. Yes, I know that they have a life threatening gene. Yes, I know that right now, things are really great for them. Yes, I know I'm lucky to have my children with me to hug and hold. I guess what I'm trying to say is that most days, I have sort of a robotic response to thinking, feeling, or talking about Alpha-1. It is like I'm on autopilot.
I can rotely tell anyone about Alpha-1...what it is, why it affects my children, what we can and cannot do about it. I even devote volunteer time to Alpha-1 by serving on the board of directors of the Alpha-1 Association, Alpha-1 Kids, and the Alpha Pack, Wisconsin's support group. Monthly, I write a newsletter for Wisconsin Alphas, and daily, I monitor an online bulletin board for Alphas. I answer questions, provide support, and remind people in the Alpha-1 community that they are not alone.
Yet, here I am alone inside my own head tonight dealing with today's breakdown of powerful denial that protects this mother's heart.
In my last blog entry I described having interviewed an Alpha-1 researcher, Dr. Ronald Sokol. He is going to head up a groundbreaking research study of children with Alpha-1. All week, I've been thinking about how excited I am about this study, but here and there, a subtle realization kept creeping in my head. This study really is about my daughters and their genetic disorder. My babies have Alpha-1, and today, that is overwhelming the hell out of me.
This mom is about to order up a good dose of autopilot again.
I can rotely tell anyone about Alpha-1...what it is, why it affects my children, what we can and cannot do about it. I even devote volunteer time to Alpha-1 by serving on the board of directors of the Alpha-1 Association, Alpha-1 Kids, and the Alpha Pack, Wisconsin's support group. Monthly, I write a newsletter for Wisconsin Alphas, and daily, I monitor an online bulletin board for Alphas. I answer questions, provide support, and remind people in the Alpha-1 community that they are not alone.
Yet, here I am alone inside my own head tonight dealing with today's breakdown of powerful denial that protects this mother's heart.
In my last blog entry I described having interviewed an Alpha-1 researcher, Dr. Ronald Sokol. He is going to head up a groundbreaking research study of children with Alpha-1. All week, I've been thinking about how excited I am about this study, but here and there, a subtle realization kept creeping in my head. This study really is about my daughters and their genetic disorder. My babies have Alpha-1, and today, that is overwhelming the hell out of me.
This mom is about to order up a good dose of autopilot again.
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