Hey Alpha-1 Community!
Hold onto to your hats. The producer of Prolastin, an augmentation therapy for Alpha-1 lung disease, is going public. Hot of the presses...
Talecris Biotherapeutics (TLCR) Files $1 Billion IPO
07-30-2007 09:06:31 AM
Talecris Biotherapeutics Holdings (Nasdaq: TLCR) has filed a registration statement with the SEC for an initial public offering of its common stock. The Company intends to apply to list its common units on the Nasdaq under the symbol “TLCR.” The proposed maximum aggregate offering price is $1 billion.
The offering is being made through Morgan Stanley, Goldman, Sachs & Co. and JPMorgan.
Talecris Biotherapeutics is a biopharmaceutical company that is one of the largest producers and marketers of plasma-derived protein therapies in the world. Talecris develops, produces, markets and distributes therapies that extend and enhance the lives of people suffering from chronic and acute, often life-threatening, conditions, such as immune deficiency disorders, alpha-1 antitrypsin (AAT) deficiency, infectious diseases, hemophilia and severe burns.
Monday, July 30, 2007
Saturday, July 28, 2007
Alpha-1 Antitrypsin Deficiency & the Human Genome
I found a really great summation of Alpha-1 Antitrypsin Deficiency on the Human Genome web site. Enjoy the reading.
http://www.genome.gov/19518992
http://www.genome.gov/19518992
Wednesday, July 25, 2007
Tumble
This morning, Gracie did her usual sprint down the stairs on her way to putting her shoes on before going to day care. I watched her long blond locks flowing behind her in a sort of "look at me world carelessness." After her recent collision with our wall, I yelled after her, "Be careful on the stairs Grace." She consistently stumbles and falls, and my husband and I worry the most when she is on the stairs. I was thinking, "Jeesh, that kid! She makes my heart skip a beat sometimes."
Grace jumped down and over the last three stairs and skipped off to get her shoes on. I was about three quarters of the way down our berber carpeted stairs, and Meghan was behind me one-by-carefully-one making her descent down the stairs. We were in a little bit of a hurry, but nothing too dramatic.
"Keep going Meghan. We need to get to school," came out of my mouth. I could hear Grace in the background whining that her socks were too tight, and that there was a "line" across her toes. I'm pretty sure I was beginning to tell Grace that I would be along shortly to help her with her latest sensory assault, the seam in her socks.
I had just reached the bottom of the stairs when I heard a noise coming from Meghan. I can't even really describe the noise, but I knew it wasn't a good one. As I spun around, I saw a flash of Meggie's yellowy hair flying through the air. I realized that she was in mid-fall down the stairs. The next thing I saw was the purple soles of her Dora the Explorer tennis shoes, which were hitting the wall along the stairs. She was now in full rolling tumble down the stairs, and she was coming at me very fast. "Catch her! Catch her!" was all that I thought. In an instinct, I outstretched my arms toward her rolling log of a body, and shoveled my hands underneath her shoulders and lower legs. With a scooping motion, I guided her rolling body into my chest as I knelt on the stairs. With just a few millimeters to spare, Meghan missed cramming her head into the wood banister on our stairs. My left hand saved her precious preemie head from injury.
"Waaaaaaaaaaaaaaaaa." came from Meghan along with sputtering coughs. I think her fall knocked the wind out of her.
"Are you okay? Let's go sit on the couch and see what happened to you honey." Meghan was sobbing, but mostly in fear. I inspected her, but somehow, she came away unscathed. She was just shaken up.
I thought, "Holy crap! That was a close one." I had adrenaline in spades for a good half an hour afterward.
And there I was thinking Grace needed to be careful. If there is one thing I learned today, it is that children certainly keep us parents on our toes.
Whew!
Grace jumped down and over the last three stairs and skipped off to get her shoes on. I was about three quarters of the way down our berber carpeted stairs, and Meghan was behind me one-by-carefully-one making her descent down the stairs. We were in a little bit of a hurry, but nothing too dramatic.
"Keep going Meghan. We need to get to school," came out of my mouth. I could hear Grace in the background whining that her socks were too tight, and that there was a "line" across her toes. I'm pretty sure I was beginning to tell Grace that I would be along shortly to help her with her latest sensory assault, the seam in her socks.
I had just reached the bottom of the stairs when I heard a noise coming from Meghan. I can't even really describe the noise, but I knew it wasn't a good one. As I spun around, I saw a flash of Meggie's yellowy hair flying through the air. I realized that she was in mid-fall down the stairs. The next thing I saw was the purple soles of her Dora the Explorer tennis shoes, which were hitting the wall along the stairs. She was now in full rolling tumble down the stairs, and she was coming at me very fast. "Catch her! Catch her!" was all that I thought. In an instinct, I outstretched my arms toward her rolling log of a body, and shoveled my hands underneath her shoulders and lower legs. With a scooping motion, I guided her rolling body into my chest as I knelt on the stairs. With just a few millimeters to spare, Meghan missed cramming her head into the wood banister on our stairs. My left hand saved her precious preemie head from injury.
"Waaaaaaaaaaaaaaaaa." came from Meghan along with sputtering coughs. I think her fall knocked the wind out of her.
"Are you okay? Let's go sit on the couch and see what happened to you honey." Meghan was sobbing, but mostly in fear. I inspected her, but somehow, she came away unscathed. She was just shaken up.
I thought, "Holy crap! That was a close one." I had adrenaline in spades for a good half an hour afterward.
And there I was thinking Grace needed to be careful. If there is one thing I learned today, it is that children certainly keep us parents on our toes.
Whew!
Monday, July 23, 2007
Discharged from NICU
Three short years ago today, we brought Meghan home from the hospital. She weighed a whopping 4 pounds, 9 ounces, and left with a sleep apnea monitor attached to her.
She had lived at our local hospital for 79 days in the neonatal intensive care unit and then transitioned to the pediatric unit a few weeks before discharge. If I had not looked at the calendar today, I would have forgotten the significance of the date. I suppose it is a good thing that I’m beginning to let those scary times fade into the fabric of our lives, but her prematurity is still there, just about every day, reminding us. It is in the subtleties, for which a casual observer would miss.
The left side of Meghan’s body weakens the more she uses it. Eventually, she ends up dragging it along with her. God bless her for not noticing or missing a step anyway.
The beautiful shape of her face is well…; some may call this harsh, toaster-headish, where the sides of her head are flat. This is a badge of microprematurity I suppose.
Yesterday my little sister noticed that Meghan’s ankles are tipping in again. I shook my head yes and made a mental note to get her back to the physical therapist for a new set of orthotics.
When Meghan needs to see something off to her side, her entire head pivots to the left or right as necessary instead of just moving her eyes to the left or right. This is because she has little to no peripheral vision. Her retinopathy of prematurity (ROP) took care of that aspect. Again, Meghan is none the wiser to this fact.
Meghan’s personality is extremely fiery. She is bull-headed to say the least, but we’ve always assumed this aspect of her pays homage to why Meghan survived the NICU in the first place.
With the size of Meghan’s personality being so ginormous, you’d assume she was large too. That is not at all the case. Meggie weighs in at 26 pounds at 3 years old. She is tiny, like she has always been.
These are just a few of the subtleties. There are hundreds more I could offer, so I hope you get the idea.
Yes, we are blessed. Yes, we are lucky she survived, but I guess today’s entry is about reminding my readers that prematurity lasts a lifetime. It has implications that last far past being discharged from NICU. Being born early presents many challenges throughout the life span. Don’t let the media fool you into believing that all is well upon discharge. Things can and often do get better, but former preemies lives are not the same as children born full term. Former preemies have challenges. They can and do overcome some of them. So my advice is to pay attention to your full termer’s miraculous ability to race across the room at top speed, and then turn on a dime to scoop a toy off the floor. Take note that he/she doesn’t fall while trying to get the toy or go crashing into a nearby wall. Take note of your blessings. I know I have noted our blessings.
Yes, Meghan is a miracle. Yes, we deal with her former preemie issues everyday.
So Meghan, I pay homage to your daily struggles to make your life similar to the other children in your life. You are one of the strongest little creatures I know. I love you baby girl, and am so incredibly proud of you and your sheer will to live.
Love,
Mama
She had lived at our local hospital for 79 days in the neonatal intensive care unit and then transitioned to the pediatric unit a few weeks before discharge. If I had not looked at the calendar today, I would have forgotten the significance of the date. I suppose it is a good thing that I’m beginning to let those scary times fade into the fabric of our lives, but her prematurity is still there, just about every day, reminding us. It is in the subtleties, for which a casual observer would miss.
The left side of Meghan’s body weakens the more she uses it. Eventually, she ends up dragging it along with her. God bless her for not noticing or missing a step anyway.
The beautiful shape of her face is well…; some may call this harsh, toaster-headish, where the sides of her head are flat. This is a badge of microprematurity I suppose.
Yesterday my little sister noticed that Meghan’s ankles are tipping in again. I shook my head yes and made a mental note to get her back to the physical therapist for a new set of orthotics.
When Meghan needs to see something off to her side, her entire head pivots to the left or right as necessary instead of just moving her eyes to the left or right. This is because she has little to no peripheral vision. Her retinopathy of prematurity (ROP) took care of that aspect. Again, Meghan is none the wiser to this fact.
Meghan’s personality is extremely fiery. She is bull-headed to say the least, but we’ve always assumed this aspect of her pays homage to why Meghan survived the NICU in the first place.
With the size of Meghan’s personality being so ginormous, you’d assume she was large too. That is not at all the case. Meggie weighs in at 26 pounds at 3 years old. She is tiny, like she has always been.
These are just a few of the subtleties. There are hundreds more I could offer, so I hope you get the idea.
Yes, we are blessed. Yes, we are lucky she survived, but I guess today’s entry is about reminding my readers that prematurity lasts a lifetime. It has implications that last far past being discharged from NICU. Being born early presents many challenges throughout the life span. Don’t let the media fool you into believing that all is well upon discharge. Things can and often do get better, but former preemies lives are not the same as children born full term. Former preemies have challenges. They can and do overcome some of them. So my advice is to pay attention to your full termer’s miraculous ability to race across the room at top speed, and then turn on a dime to scoop a toy off the floor. Take note that he/she doesn’t fall while trying to get the toy or go crashing into a nearby wall. Take note of your blessings. I know I have noted our blessings.
Yes, Meghan is a miracle. Yes, we deal with her former preemie issues everyday.
So Meghan, I pay homage to your daily struggles to make your life similar to the other children in your life. You are one of the strongest little creatures I know. I love you baby girl, and am so incredibly proud of you and your sheer will to live.
Love,
Mama
Tuesday, July 17, 2007
Got the Abstract!
Yahoo! Thanks Sarah.
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
I don't want to violate copyright law, but here is a snipet of the article's conclusions:
A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.
Can I translate this into English words? Yes.
Warning: I'm not a medical professional nor do I play one on TV.
Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does not grow well (intrauterine growth restriction, IUGR). In a pregnant mom, if the vascular system is screwed up, hypertension can happen. Also, blood vessels get leaky, and swelling occurs, more than the usual kind. Finally, the kidneys begin to spill protein. The kidneys are intimately involved in the vascular system. Hence, the nasty preeclampsia monster appears, as it did for me twice.
Busy, busy, busy, but thought some of my readers would be interested. If I get my hands on the entire article, I'll post more.
Looks like I'm hot on the trail of why I got preeclampsia...at least, I'm hot on the trail of the very intelligent, smarter-than-me researchers. LOL
Sunday, July 15, 2007
Preeclampsia and Alpha-1 Antitrypsin Deficiency
About 3 years ago on a lark, I looked up the location of the Alpha-1 Antitrypsin Deficiency gene on the human genome web site. To my surprise, I had an "aha" moment when I noticed that a different gene for hypertension (that I have) was startlingly close to the Alpha-1 Antitrypsin Deficiency gene on the distal long arm of chromosome 14.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
I've always wondered about this:
* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.
* Both of my children have ZZ Alpha-1, a severely deficient genotype.
* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.
Did these facts contribute to the development of my severe preeclampsia???
It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.
Today, someone found my blog by doing a google search of "A1AT preeclampsia." This piqued my interest so I also searched using the same key words, and well, I stumbled on an article that was published in the American Journal of Obstetrics and Gynecology.
I'm simply "dying" to read this article, but I'm too cheap to spend $30 on something about which I can't even read an abstract. This is all that I can find about the article:
Evidence for alpha-1-antitrypsin (A1AT) polymerization in preeclampsia: A novel mechanism for endothelial cell injury
Irina Buhimschi1, Guomao Zhao2, George Saade3 and Catalin S. Buhimschi2
1Yale University, Obstetrics/Gynecology, New Haven, Connecticut
2Yale University, Ob./Gyn.&Reprod.Sci, New Haven, Connecticut
3University of Texas Medical Branch at Galveston, Obstetrics & Gynecology, Galveston, Texas
483. Available online 4 December 2006.
I've got to get myself to the real library to find that article. Or, hey Mom, can you share it with me? Do you subscribe to AJOB? Let me know.
If this provides me with the answer for "why" I developed severe preeclampsia twice, my brain may finally allow me to progress to the stage of acceptance. I mean...a mom can only hope to ease the guilt of having two premature babies somehow.
Thursday, July 12, 2007
Alpha-1 Public Service Announcement
My support group leader, Noreen, made this wonderful public service announcement about Alpha-1.
Here is her description of the video:
1 min 18 sec - Jul 11, 2007
This is my PSA on the condition called Alpha-1 Antitrypsin Deficiency. It is a spoof on the Viking genes that have been passed down ... all » through hereditary means. The mutated gene pair is called ZZ and can cause emphysema, cirrhosis and/or panniculitus. As many as 25 million people in the U.S. are unaware that they are carriers of the Z gene. It is commonly misdiagnosed as asthma in young adults. Alpha-1 can lead to a lung or liver transplant. I am a lung-affected Alpha and was diagnosed at age 38 with advanced emphysema.
Click on the movie to make it play.
Here is her description of the video:
1 min 18 sec - Jul 11, 2007
This is my PSA on the condition called Alpha-1 Antitrypsin Deficiency. It is a spoof on the Viking genes that have been passed down ... all » through hereditary means. The mutated gene pair is called ZZ and can cause emphysema, cirrhosis and/or panniculitus. As many as 25 million people in the U.S. are unaware that they are carriers of the Z gene. It is commonly misdiagnosed as asthma in young adults. Alpha-1 can lead to a lung or liver transplant. I am a lung-affected Alpha and was diagnosed at age 38 with advanced emphysema.
Click on the movie to make it play.
Wednesday, July 11, 2007
Monday, July 09, 2007
Sensory Nightmare
When Grace was in the NICU, we began to observe that she was a baby who needed much attention and love. She frequently fretted or cried in her isolette. Grace's NICU nurses said she just needed extra love, which was a nice way of saying this kid is high-needs. Charlie and I quickly found that if we cradled her head in the cup of one hand and balled up her feet and legs into the other hand, then Grace would calm down a bit. I remember feeling her whole body begin to relax in my hands. It seemed to be one of a few things I could do for her while in the NICU.
Since those times, I continue to be a calming force in Grace's world. As much as Grace fills my heart with love, the opposite can sometimes also be true. Sometimes, it can feel like Gracie is literally sucking the life force right out of me. Yesterday was one of those days...
The church was old, and as I had guessed, it was not air conditioned. The humidity was oppressive, and I kept wondering if the candles were melting. I felt like I was melting. The conditions were not great, and I was pretty darn sure that my children would not cooperate well. In advance of the start of the wedding, I had prepped the girls for what their behavior should be during the ceremony. We talked about sitting still and using whisper voices.
Karma was not working in our favor. By some odd coincidence, the videographer set up his tripod just one pew behind us on the left. Maybe he didn't know how incredibly loud whispering children sound like? This heightened my anxiety even more since I didn't want my misbehaving children mucking up the happy couple's lasting tribute.
Knowing the girls so well, their behavior lived up to my low expectations. At one point during the ceremony, Meghan picked up a yellow church comment card and promptly swiped it at Grace's face. Grace screeched in pain. "Owie! Owwwwwwwwwwwwwwwwwwwwwwww!"
The card had given her a paper cut close to her eye. (This was the same eye injured a few weeks ago when Grace careened out of control in a wall.) My right hand cupped her mouth shut to minimize the loudness of the screaming. I pulled Grace onto my lap while Charlie scolded Meghan.
My arms squeezed against the sides of Grace's upper arms in a hug. I've learned over the years that she likes gentle pressure off and on over and over again. This seems to calm her quicker. I also showed her how to gently rub her eye using her knuckle instead of the tip of her finger. All of this was communicated in whispers, while Meghan squirmed during her scolding.
Shortly after, Grace expressed the need to use the bathroom by pointing to her crotch in a five-year-old equivalent of sign language. I smirked as she decided to point emphatically at her crotch several times to indicate the urgency. At this point, communion was being served, so I decided to take the opportunity to take both of the girls to the bathroom. As we walked down the side aisle of the church, Meghan made sure to stomp her "beautiful Easta" shoes in a clipity-clapity cadence.
"No stomping Meghan!" I whispered.
We found the bathroom, and Grace wiggled and squirmed while she attempted to pull down her underwear, which were sweatily stuck to her skin. At this point, she also decided that her bracelet was bothering her too. She yanked it off, and placed it on the counter top. Meghan quickly spotted the bracelet, and grabbed it.
"Girls, please don't talk out loud. Everyone in the church can hear us in here. Use your whisper......"
"Ahhhhhhhhhhhhhhhhhhhhhhhhh! Owwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww!" came stuttering out of Grace's mouth. Meghan, being the catalyst for Grace's disdain, had picked up the glass bead bracelet, and sort of sling-shot it at the back of Grace's right arm. A large welt was forming before my eyes.
"MEGHAN! You're in a time out!" Meghan didn't seem phased as I cupped my hand against Grace's mouth a second time. Grace screamed in agony again. My mommy brain was getting pissed. It was like a gigantic calamity of bad behaviors, and it only seemed to be ramping up instead of winding down. Meghan stood against the wall and smirked at Grace. In my mind, I kept thinking, "You little..."
Upon finally exiting the sweltering bathroom, I spotted a water cooler. Since it was so hot, I figured the girls needed more fluids. I filled small plastic cups with water and handed them to Grace and Meghan. They gulped the water down, and both tried to refill their cups using the water spigot at the same time.
"MEGHAN, me first!"
"Noooo GRACE!"
"SHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!" I could feel my temper flaring up just like the afternoon sun.
Fortunately, the wedding ended at this point, and the bride and groom entered the foyer of the church together. I thought, "Oh thank God in heaven, I don't have to make them be quiet anymore, and we can get back in the van to cool down in the A/C."
Our next stop was a museum on the lakefront, where the reception would take place.
Charlie drove the mini-van into an underground parking structure. We all got out of the van, and walked to an elevator. The doors opened, and we got in the elevator. Charlie was holding Grace's hand, and I was holding Meghan's hand. A moment passed, and the elevator wasn't moving. It was warm in the elevator so I pushed the "open door" button, and took Meghan out of the elevator. I turned around to see the doors closing again, and Grace's face. She had a painful expression on her face, and was about to cry loudly. The doors closed, and I heard muffled loud crying coming from Grace. Charlie didn't leave the elevator, and Grace decided that her world was about to end.
"Waaaaaaaaaaaaaaaaw! I'm scared! I'm scared! I'm scared! Moooooooooooommmmmmmmyyyy!"
The doors opened again, and Charlie guided Grace off the elevator toward me. "I don't like, like elevators, Mooommmmmmyyyyy!"
"You're fine Grace. The doors opened, and you got off the elevator. Calm down. Mom and Dad are taking care of you. You're fine!"
Next, we found an elevator that worked. I scooped up a screaming Grace, and forced her into the next elevator. "Noooooooooooooooooooooooooooooooo! I'm scared! I'm scared! I'm scared." Her pleas frequently come in threes.
It was a quick ride, and we got off on the first floor inside the museum. A wood plank floor greeted us. I think it was supposed to simulate a dock going out onto the water. Meghan gleefully stomped her feet against the floor to make noise.
As we approached a set of glass doors, I noticed that there were fish tanks on the other side of the doors. Grace and Meghan noticed too, and ran toward a fish tank. Grace began pointing to the fish and instructing Meghan to look at every fish she was viewing. Finger prints were being left all over the tank glass, and then pseudo rain began to fall into a pool of water in the center of the room. This startled Gracie, but upon reviewing the situation, she seem to figure it wasn't a threat.
Loud, fake, thunder boomed throughout the room. I thought, "Ah crap, here we go again." Grace's hands cupped both of her ears, and she bolted toward the glass doors.
"I'm scared. I'm scaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrreeeeeddd! I'm scared! I wanna go home RIGHT now, Mommy. I wanna go home!"
"Gracie, come back here. It is pretend lightning and thunder Gracie. It's pretend. Grace, come here!"
"Nooooooooooooooooooo!" She ran farther away from me, but I caught up to her. I scooped her up again, but this time she seemed heavier, as if she gained more weight in the five minutes it had been since I scooped her up last. This was getting very old, and my patience was waning. I know that Grace has sensory issues, but this was getting ridiculous.
Finally, the pretend thunder subsided. I coaxed Grace past the spot where the thunder emanated, and we walked down an incline deeper into the aquarium. Glass windows showcased many specimens of fish. Meghan squealed with delight as she spied some shiny fish. Grace pensively inspected the fish, and placed the tip of her index finger into her mouth.
At this point, Grace said again, "I wanna goooo home, Mommy. I have to go potty." It was clear to me that she'd do or say anything to get out of her sensory nightmare.
"No Grace, we are going to the party now. We'll walk past the fish, and go to the party."
She clung to my hand intently, and then suddenly stopped in terror. At this point, we arrived at a spot where we would be walking over part of a fish tank. The fish would be getting quite a view up our skirts, and well, Grace, she was not going to have any part of walking on the glass. Meghan hesitated too, but quickly figured out she wasn't going to fall in. She ran ahead a bit.
I scooped Grace up yet again, and carried her over the tank. I nearly dropped her as she wiggled and yelled again, "NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"
We finally reached the end of the path, which unfortunately, resulted in yet another elevator, which would take us to the 3rd floor. "NNNNNNNNNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO elevators! No elevators! No elevator! I'm not going on the elevator!"
I sighed, and made the decision to turn around and walk back the way we came. Charlie loaded Meghan on the elevator, and we turned around. Grace was not going to cooperate. She was a lost cause at this point. I defeatedly thought, "Man, this kid really needed to nap today. She is overly stimulated, and this sucks. I'm ready to go home too."
Unfortunately, I forgot about Thunder Dome, the sensory torture chamber, and needless to say, the same sensory responses came from Grace. Carrying a kicking, screaming kid in 90 degree weather in wet blanket humidity was quite an effort. At one point, my dress had hiked itself up in the struggle with Grace. I'm pretty sure that my underwear was showing, but I was on a mommy mission. I had to get her out of there, and work some Mommy magic on her. To quote my mother, I was "sweating my XXXX off."
We finally reached where we started, but we still needed to get to the 3rd floor for the wedding reception. I found a museum staff member and asked if there were some stairs to the 3rd floor. He pointed us in the right direction.
Grace dragged her feet up each stair one-by-painfully-one. We finally arrived and she saw a another bathroom. Again, she emphatically pointed to her crotch to indicate her need to use the bathroom.
"Grace, in our family, we use words to say what we want. Use words!"
"I need to go potty!"
I sarcastically thought, "Great! More stalling. Just what we need right now."
After yet another bathroom visit, I held Grace's hand and walked into the reception. I spotted Charlie at a table, and I couldn't wait to get there. I needed a drink. What was really a 10 minute event seemed to take 10 years of life off of me.
Meghan shrieked, "Mommy's here! Mommy's here!"
I slumped into a chair, and asked for a drink. My senses were shot, too.
Since those times, I continue to be a calming force in Grace's world. As much as Grace fills my heart with love, the opposite can sometimes also be true. Sometimes, it can feel like Gracie is literally sucking the life force right out of me. Yesterday was one of those days...
The church was old, and as I had guessed, it was not air conditioned. The humidity was oppressive, and I kept wondering if the candles were melting. I felt like I was melting. The conditions were not great, and I was pretty darn sure that my children would not cooperate well. In advance of the start of the wedding, I had prepped the girls for what their behavior should be during the ceremony. We talked about sitting still and using whisper voices.
Karma was not working in our favor. By some odd coincidence, the videographer set up his tripod just one pew behind us on the left. Maybe he didn't know how incredibly loud whispering children sound like? This heightened my anxiety even more since I didn't want my misbehaving children mucking up the happy couple's lasting tribute.
Knowing the girls so well, their behavior lived up to my low expectations. At one point during the ceremony, Meghan picked up a yellow church comment card and promptly swiped it at Grace's face. Grace screeched in pain. "Owie! Owwwwwwwwwwwwwwwwwwwwwwww!"
The card had given her a paper cut close to her eye. (This was the same eye injured a few weeks ago when Grace careened out of control in a wall.) My right hand cupped her mouth shut to minimize the loudness of the screaming. I pulled Grace onto my lap while Charlie scolded Meghan.
My arms squeezed against the sides of Grace's upper arms in a hug. I've learned over the years that she likes gentle pressure off and on over and over again. This seems to calm her quicker. I also showed her how to gently rub her eye using her knuckle instead of the tip of her finger. All of this was communicated in whispers, while Meghan squirmed during her scolding.
Shortly after, Grace expressed the need to use the bathroom by pointing to her crotch in a five-year-old equivalent of sign language. I smirked as she decided to point emphatically at her crotch several times to indicate the urgency. At this point, communion was being served, so I decided to take the opportunity to take both of the girls to the bathroom. As we walked down the side aisle of the church, Meghan made sure to stomp her "beautiful Easta" shoes in a clipity-clapity cadence.
"No stomping Meghan!" I whispered.
We found the bathroom, and Grace wiggled and squirmed while she attempted to pull down her underwear, which were sweatily stuck to her skin. At this point, she also decided that her bracelet was bothering her too. She yanked it off, and placed it on the counter top. Meghan quickly spotted the bracelet, and grabbed it.
"Girls, please don't talk out loud. Everyone in the church can hear us in here. Use your whisper......"
"Ahhhhhhhhhhhhhhhhhhhhhhhhh! Owwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww!" came stuttering out of Grace's mouth. Meghan, being the catalyst for Grace's disdain, had picked up the glass bead bracelet, and sort of sling-shot it at the back of Grace's right arm. A large welt was forming before my eyes.
"MEGHAN! You're in a time out!" Meghan didn't seem phased as I cupped my hand against Grace's mouth a second time. Grace screamed in agony again. My mommy brain was getting pissed. It was like a gigantic calamity of bad behaviors, and it only seemed to be ramping up instead of winding down. Meghan stood against the wall and smirked at Grace. In my mind, I kept thinking, "You little..."
Upon finally exiting the sweltering bathroom, I spotted a water cooler. Since it was so hot, I figured the girls needed more fluids. I filled small plastic cups with water and handed them to Grace and Meghan. They gulped the water down, and both tried to refill their cups using the water spigot at the same time.
"MEGHAN, me first!"
"Noooo GRACE!"
"SHHHHHHHHHHHHHHHHHHhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!" I could feel my temper flaring up just like the afternoon sun.
Fortunately, the wedding ended at this point, and the bride and groom entered the foyer of the church together. I thought, "Oh thank God in heaven, I don't have to make them be quiet anymore, and we can get back in the van to cool down in the A/C."
Our next stop was a museum on the lakefront, where the reception would take place.
Charlie drove the mini-van into an underground parking structure. We all got out of the van, and walked to an elevator. The doors opened, and we got in the elevator. Charlie was holding Grace's hand, and I was holding Meghan's hand. A moment passed, and the elevator wasn't moving. It was warm in the elevator so I pushed the "open door" button, and took Meghan out of the elevator. I turned around to see the doors closing again, and Grace's face. She had a painful expression on her face, and was about to cry loudly. The doors closed, and I heard muffled loud crying coming from Grace. Charlie didn't leave the elevator, and Grace decided that her world was about to end.
"Waaaaaaaaaaaaaaaaw! I'm scared! I'm scared! I'm scared! Moooooooooooommmmmmmmyyyy!"
The doors opened again, and Charlie guided Grace off the elevator toward me. "I don't like, like elevators, Mooommmmmmyyyyy!"
"You're fine Grace. The doors opened, and you got off the elevator. Calm down. Mom and Dad are taking care of you. You're fine!"
Next, we found an elevator that worked. I scooped up a screaming Grace, and forced her into the next elevator. "Noooooooooooooooooooooooooooooooo! I'm scared! I'm scared! I'm scared." Her pleas frequently come in threes.
It was a quick ride, and we got off on the first floor inside the museum. A wood plank floor greeted us. I think it was supposed to simulate a dock going out onto the water. Meghan gleefully stomped her feet against the floor to make noise.
As we approached a set of glass doors, I noticed that there were fish tanks on the other side of the doors. Grace and Meghan noticed too, and ran toward a fish tank. Grace began pointing to the fish and instructing Meghan to look at every fish she was viewing. Finger prints were being left all over the tank glass, and then pseudo rain began to fall into a pool of water in the center of the room. This startled Gracie, but upon reviewing the situation, she seem to figure it wasn't a threat.
Loud, fake, thunder boomed throughout the room. I thought, "Ah crap, here we go again." Grace's hands cupped both of her ears, and she bolted toward the glass doors.
"I'm scared. I'm scaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrreeeeeddd! I'm scared! I wanna go home RIGHT now, Mommy. I wanna go home!"
"Gracie, come back here. It is pretend lightning and thunder Gracie. It's pretend. Grace, come here!"
"Nooooooooooooooooooo!" She ran farther away from me, but I caught up to her. I scooped her up again, but this time she seemed heavier, as if she gained more weight in the five minutes it had been since I scooped her up last. This was getting very old, and my patience was waning. I know that Grace has sensory issues, but this was getting ridiculous.
Finally, the pretend thunder subsided. I coaxed Grace past the spot where the thunder emanated, and we walked down an incline deeper into the aquarium. Glass windows showcased many specimens of fish. Meghan squealed with delight as she spied some shiny fish. Grace pensively inspected the fish, and placed the tip of her index finger into her mouth.
At this point, Grace said again, "I wanna goooo home, Mommy. I have to go potty." It was clear to me that she'd do or say anything to get out of her sensory nightmare.
"No Grace, we are going to the party now. We'll walk past the fish, and go to the party."
She clung to my hand intently, and then suddenly stopped in terror. At this point, we arrived at a spot where we would be walking over part of a fish tank. The fish would be getting quite a view up our skirts, and well, Grace, she was not going to have any part of walking on the glass. Meghan hesitated too, but quickly figured out she wasn't going to fall in. She ran ahead a bit.
I scooped Grace up yet again, and carried her over the tank. I nearly dropped her as she wiggled and yelled again, "NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!"
We finally reached the end of the path, which unfortunately, resulted in yet another elevator, which would take us to the 3rd floor. "NNNNNNNNNNNNNNNNNNNNNNNNNNNOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO elevators! No elevators! No elevator! I'm not going on the elevator!"
I sighed, and made the decision to turn around and walk back the way we came. Charlie loaded Meghan on the elevator, and we turned around. Grace was not going to cooperate. She was a lost cause at this point. I defeatedly thought, "Man, this kid really needed to nap today. She is overly stimulated, and this sucks. I'm ready to go home too."
Unfortunately, I forgot about Thunder Dome, the sensory torture chamber, and needless to say, the same sensory responses came from Grace. Carrying a kicking, screaming kid in 90 degree weather in wet blanket humidity was quite an effort. At one point, my dress had hiked itself up in the struggle with Grace. I'm pretty sure that my underwear was showing, but I was on a mommy mission. I had to get her out of there, and work some Mommy magic on her. To quote my mother, I was "sweating my XXXX off."
We finally reached where we started, but we still needed to get to the 3rd floor for the wedding reception. I found a museum staff member and asked if there were some stairs to the 3rd floor. He pointed us in the right direction.
Grace dragged her feet up each stair one-by-painfully-one. We finally arrived and she saw a another bathroom. Again, she emphatically pointed to her crotch to indicate her need to use the bathroom.
"Grace, in our family, we use words to say what we want. Use words!"
"I need to go potty!"
I sarcastically thought, "Great! More stalling. Just what we need right now."
After yet another bathroom visit, I held Grace's hand and walked into the reception. I spotted Charlie at a table, and I couldn't wait to get there. I needed a drink. What was really a 10 minute event seemed to take 10 years of life off of me.
Meghan shrieked, "Mommy's here! Mommy's here!"
I slumped into a chair, and asked for a drink. My senses were shot, too.
Sunday, July 01, 2007
Pediatric Grand Rounds is Available
Enjoy this round's compilation by Shinga at Breath Spa for Kids:
http://breathspakids.blogspot.com/2007/07/paediatric-grand-rounds-26.html
I submitted my post about Grace's ER visit.
Jen
http://breathspakids.blogspot.com/2007/07/paediatric-grand-rounds-26.html
I submitted my post about Grace's ER visit.
Jen
Wednesday, June 27, 2007
"It hurts so bad."
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.)
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.)
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!
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