Lil' Ballerinas

I really have not been doing such a great job taking pictures lately.  I'm going to have to start doing better.  I did get this cute picture of big sis and lil' sis at dance class.   They love dancing.  Cade does too, but he didn't get to be in the tutu picture with the girls.   I just love my little ballerinas.
 

Brenna's Surgery

Brenna had her surgery last Monday at Dell Children's Hospital.  She had her tonsils and adenoids removed and a tube put back in her right ear.  We decided it was time to have the surgery after 7 cases of strep throat plus additional sore throats in the past year.  We were told her surgery would be in the morning, and we would spend one night at the hospital for observation.  I packed our bags on Sunday night loading Brenna's bag with plenty of books, games, and toys to entertain her during our stay.  We arrived bright and early at 6:30 AM on Monday morning.  We filled out our paperwork, and shortly after, they took us to the back to go over her medical history.  I had to think about it for a second when they asked me if she was full-term and if there were any complications with the pregnancy.  After going through the babies' history at so many appointments in the past year, it felt odd and great to say, "Yes, she was full term.  No complications with the pregnancy." 

A child life specialist came in after the doctor's questions were complete.  She talked to Brenna about the surgery and let her choose a flavor to breathe in the mask.  She was awesome and made Brenna feel really comfortable about what was going to happen.  She even pulled out her iPad and asked Brenna if she would like to play a game when she was in the surgery room.  Brenna chose Angry Birds.  It made me feel a lot better when we had to say good-bye to know the child life specialist would be with Brenna.  All Brenna remembers is playing Angry Birds and breathing in watermelon.  Not bad!

After her surgery, Jim and I went back to the recovery room.  She looked pretty sad in recovery; she was sleeping with a permanent frown.  Her lovey, "Jojo," seemed to help comfort her a bit though. 

After a few more hours of sleep and pain medication, she was ready to play with her new Polly Pocket dolls.  This was her best attempt at a smile.  Her lips are so red because she ate four popsicles.  Luckily, she took enough fluids in the observation room that we were allowed to go home around 1 PM.  We were so happy that we were not going to have to stay at the hospital. 

On our way home Brenna said she needed to go to the bathroom.  I stopped at McDonald's and told her we could use the restroom, and I would buy her a shake.  I thought she would be excited, but instead, she told me, "Nah, I think I want a Happy Meal."  I told her she could not have a Happy Meal.  Then she asked me if she could go play on the playground.  I thought that was pretty funny since she was still in her pajamas with hospital bracelets on.  We got the shake and headed home.

Recovery at home for the past week has been a little rough.  When she has her pain medication, she feels fine, but as soon as it starts wearing off, she is in pain again.  We can only give it every 4 hours, so sometimes waiting for the next dose is a little hard.  She has only been eating very soft things for the last week.  Anything with any type of texture at all is not a good thing, so it has been soup, yogurt, smoothies, and pudding all week.  It makes me so sad when she tells me her throat hurts really, really bad, and now she is saying her ears hurt really, really bad too.  I'm praying she'll feel much better soon.

Why Can't I Get Past the Trauma?

I've been thinking about this post off and on for some time.  I start to write it, and then erase it and move on.  I don't want to admit that I'm still traumatized by the twins' untimely birth and subsequent lengthy hospital stay.  I don't want to admit it for several reasons - I'll be seen as weak, everyone tells me how I shouldn't think about it anymore because they are healthy now, I know that other people have suffered far worse circumstances including death of loved ones, so what right do I have to be traumatized, and lastly, I don't want to have a "problem" and maybe if I just think it's normal, it will go away. 

Despite knowing all of these things, I can't stop the unwelcome thoughts that run through my head.  The thoughts creep in unexpected any time of the day, and they happen several times a day.  I've begun counting to see if I really do have a problem; they happen at least 5-10 times a day. The smallest things can trigger the thoughts.  I dressed Camdyn up in the cutest little ballerina outfit for her Music & Movement class.  She was dancing around in her sweet dress, and without my permission, my thoughts jump back to seeing her as a one pound infant in an isolette with tubes and wires everywhere.  My chest tightens for a moment, and then I smile and feel an overwhelming sense of happiness as I move back into the present.  Something as ordinary as giving your child pieces of chicken nuggets should not produce traumatic memories, but for me, as I watch Cade eat chicken nuggets, my mind might decide to take a detour.  It will produce images of Cade laying in the hospital bed after his g-tube surgery with tubes taped to his stomach.  From this detour, my mind will race back to the NICU and take a stop at the moment I was told the orders to "stop all oral feeds" due to him aspirating.  The trip down memory lane isn't complete without making its final destination to the crushing day when the ENT told me he had bilateral vocal cord paralysis and would possibly need a tracheostomy for life.  In that moment, I view myself as if in a movie, an out-of-body experience; I'm peering in from the neighboring NICU bay.  I see a mother clinging onto her infant son sobbing from a place deep within her soul.  Tears blanket her and the head of her baby boy, her thinking that if she holds him tight enough and never lets go, the doctors won't be able to tell her any more bad news.  And yes all of this can be triggered by the simple act of eating a chicken nugget.  It does not happen every time Cade takes a bite, but I paint the picture to show how the thoughts will enter at the strangest of times.

Brenna recently got her tonsils and adenoids removed as well as a tube put in her right ear.  I will write all about that in a separate post.  She deserves her own post aside from one about her Mommy's post-traumatic stress.  I had some reservations about being back in the hospital.  I figured some memories would be triggered, but I had no idea how many would surface.  It started when I saw a contraption on the wall with large tubing.  I read on its label that it was a "patient warming system".  My first traumatic memory of the day came pounding its' way in.  'I'm strapped to the operating table after being rushed into the ER.  Only moments earlier my doctor told me that the babies are coming now.  No, this can't be.  I'm only 23/24 weeks along.  Everything is happening so fast I am scared I will feel them cutting into me.  I'm shaking, trembling, frightened, freezing.  They strap on warmers to blow warm air on my arms.  Although it helps a little, arm warmers can't make a woman who is about to deliver twins 16 weeks early comfortable.'  I'm back in the present when the child life specialist walks in to show Brenna the array of flavors she can choose from to breathe in her "sleepy air".  I manage to stay in the present for most of the time while Brenna is in surgery.  Jim and I go to the coffee shop upstairs, read for a while, and head back to the post-procedural waiting room.  When we are allowed to see Brenna in the recovery room, she is groggy, but awake.  I notice that Jim and I simultaneously look up to check the monitor.  What are her saturations?  Oh, 99, great!  We know that blue number.  We've stared at it for hours on end.  We've willed it countless times to 'please, go up'.  We are too familiar with the blue number.  Fortunately, this flash back is quick and painless, so I can get back to focusing on my sweet girl recovering from surgery.  I sing to her, read books to her, and hold her popsicle as she sucks it in an effort to comfort her.  She drifts off to sleep as the pain medication kicks in.  As I sit there watching her sleep, the double doors next to us open automatically and they wheel in another patient.  The sight of the double doors opening brings on another traumatic memory.  'Jim is holding my hand running alonside my hospital bed as doctors urgently rush me into the operating room.  I hear them frantically yelling, 'Open the doors ahead.  Emergency C-section.  23 weeks gestation.  Twins.  Alert the NICU.  Prepare the OR.'  We fly down the hallway as tears roll down my face.  I'm in shock.  How can this be happening?  It doesn't even seem real.'  Brenna turns to me and in her sweet voice asks me for another popsicle which happily brings me back into the present.

I recently came across this article titled "For Parents on NICU, Trauma May Last."  There were several parts that really resonated with me.

“The NICU was very much like a war zone, with the alarms, the noises, and death and sickness,” Ms. Roscoe said. “You don’t know who’s going to die and who will go home healthy.”

I didn't just worry about my own babies when we were in the NICU; I worried about all of the babies.  One of the moms who I met there, lost her baby after a year-long stay.  I think about them often.  I've never been to war and can't imagine what veterans must feel, but I can see how the NICU can be described as a "war zone."  Each day is a battle.  Some will lose their lives while others will survive.  You may see your friends lose their child.  You may see your friends' babies deal with lifelong issues as a result of their NICU battle.

It makes me feel a bit more normal to read this, "In another study, researchers from Duke University interviewed parents six months after their baby’s due date and scored them on three post-traumatic stress symptoms: avoidance, hyperarousal, and flashbacks or nightmares. Of the 30 parents, 29 had two or three of the symptoms, and 16 had all three."

The quote that spoke to me the most was the following, "'It may be several months later when they’re ready to process what they experienced, but at that point, family and friends don’t want to talk about it anymore,' Dr. Holditch-Davis said."

This has been the hardest part of dealing with my post-traumatic stress.  I couldn't understand why it was just now 'popping up'.  Shouldn't it be getting better?  After reading this, it makes sense that I am only now ready to process what I experienced.  During their NICU stay, I was in a constant state of shock, helplessness, fear, etc.  I wasn't ready to begin processing what was happening.  It was unimaginable.  How can one process the unimaginable?  Then for the first year they were home, we fed them every 3 hours around the clock while raising a toddler, going to endless doctor's appointments, and running a business.  I was too tired to process anything!  Now, I am ready to process it all, but everyone else has moved on.  No one can understand why I'm still thinking about it.  After all, I should just be happy they are healthy.  No one is happier than me that they are healthy, but the memories come on their own.  They are separate from my happiness.  They have nothing to do with me being unhappy. 

After this very long post, I just realized I don't have a pretty conclusion to sum it all up because it is a healing process, and I've only begun to process it all.  I think I'm far from healing.  In fact, I don't know if the memories will ever go away or if I even want them to.  They do serve as constant reminders of how far they have come and what a miracle life is.  My goal would be for the memories to come less frequently and less unexpectedly.  I hope in the future to recall the memories on my own terms rather than them rushing in uninvited.

Wake Up "Carpe Diem" Mom and Smell the Roses!

This article written by an exhausted mom who gets annoyed at older women telling her she should "Carpe Diem" has been floating around e-mails and Facebook a lot lately.  I'm in a minority of people who think this article is really annoying based on all the likes and shares it has received.  I'm sure my view is biased by several factors.

She talks about how she can't wait to put her children to bed at night and how she only has fleeting thoughts of thankfulness throughout her crazy day.  I dare say her opinion and views would change significantly if she were ever faced with a medically fragile child.  

When I found Cade and Camdyn sitting on our front door step because Cade had figured out how to open the door and Camdyn followed him outside, I stopped in my tracks.  I didn't know if I should be happy or mad.  I was thrilled he had the mental capacities, fine motor skills, and gross motor skills to do this.  Again, when I found them sitting picnic-style with a box of cereal spread all over the kitchen floor eating Cheerios off the floor, I didn't know if I should be mad or happy.  After all, that meant they had to open the pantry door, pull the cereal off the shelf, open the box lid, and proceed to pour out the contents.  Those are fantastic fine motor skills.  To top it off, they sat there EATING and enjoying it.  After more than a year of feeding tubes, there sat my son happily eating Cheerios off the floor.  I was elated!

This author most likely never saw her one pound baby with tubes and wires covering every inch of her 11 inch body.  She probably has never watched her son nearly die while neo-natalogists bag him in a last ditch effort to get him to breathe.  She hasn't been told her son may need a tracheostomy for life nor viewed x-rays of her daughter's collapsed lungs.  She didn't hold her breath while her one pound babies underwent heart surgeries.  She probably hasn't wept over brain bleeds.  She never had to face the decision of administering potent steroids in hopes of weaning her children from ventilators not knowing what long-term effects those drugs would have.  She probably has never dealt with the news that her children may be blind, deaf, and/or unable to walk.  She most likely has never pleaded with God to let her children live.

 I'm not saying I go through my day in an endless state of happiness, but I am abundantly thankful every day for my kids.  I understand the stresses of parenting.  I have a four year old and twin one year olds.  I get it, but unlike this author, I know that things could have turned out very differently and I may not have had the opportunity for this amount of craziness in my life.  My older daughter often tells her baby dolls, "You're making me crazy!" because she has heard Mommy say that multiple times.  I understand the feeling of being overwhelmed, but overall, I welcome the craziness.  It means that my kids are busy and getting into things and making messes and most importantly, alive!  I "Carpe Diem" every crazy moment. 

It's Not Easy Being "Normal"

Now that we are living a more "normal" life, I've noticed that I don't exactly "fit in" with other moms anymore.  I'm trying hard to be "normal," but it isn't easy.  Let me try to explain.

 

Scenario 1:

I pick up Brenna from pre-school.  It's a pretty day, so I let Brenna and the twins play outside on the playground.  I talk to the other moms while the kids play.  One mom begins telling us how hard it was when her son was a baby because she had to take him back to the hospital for weekly check-ups for 4 weeks due to an orthotic issue which is now resolved.  What I'm thinking, "I'm sure that was hard for you, but you had your baby at home with you during that whole time.  What's the big deal about going in for 4 little appointments?  Try living without your baby for 16 weeks and going into the hospital daily to visit and crying every day when you have to leave them there. Try going to over 200 appointments in the first year alone."  What I do instead - put on a fake sympathy face and just nod.

 

Scenario 2:

Jim and I go to a friend's holiday party.  Jim goes to talk to the guys, while I hang out in the kitchen sipping some wine chatting with a couple of friends.  A friend of a friend who doesn't know me or our story comes over to talk.  We begin talking about babies because one of my friends is pregnant.  The friend of the friend reminisces about how tiny her baby was at 4 1/2 pounds.  She goes on and on about how preemie clothes were too big and just how small she was.  What I'm thinking, "4 1/2 pounds is downright big.  By the time my kids got to 4 1/2 pounds, I was able to breathe a sigh of relief.  When they were allowed to finally wear clothes, a preemie shirt looked like a dress.  I had to order micro-preemie hats off a special website that made size 2-5 pounds, and even then, I had to wait for them to reach 2 pounds to wear them."  What I do instead - put on my fake sympathy face and just nod.

 

Scenario 3:

We go to a playdate at a petting farm, and I talk with the other moms while the kids play.  A new mom is talking about how her baby is having reflux issues.  She says she is already on some medication, but she doesn't know what else to do.  I tell her Cade had reflux too and thickening the formula with rice cereal really helped.  I told her our GI suggested this too.  She asks me, "Oh, have you seen a specialist?"  Another friend who knows our story just chuckles.  What I'm thinking, "Have we seen a specialist?  We've seen around 14 specialists for almost every body part!  I could tell you about our trips to the cardiologist, opthamologist, otolaryngologist, pulmonologist, gastroenterologist,etc., but we aren't really talking about all of that."  What I say instead, "Yes, we have seen a GI.  Try the rice cereal; hopefully, it will help."

I don't want to be the person who always has a bigger, better story than someone else, so I usually just let the other mom go on and on about their big problems.  I want to be able to relate to other moms on the same level, but I'm not sure it's possible.  I want to be considerate and compassionate.  I felt a real sympathy for the mom whose baby had reflux because I knew what it was like to have a puking kid who seems to be in constant agony, but I have a hard time listening to moms whose "problems" seem so minor to me.  I want to tell them that their "problems" could be far worse, but I don't want to be preachy.  I also know that we had it so easy compared to others, so I too don't want to burden the world with my "problems". 

We are very much enjoying our new "normal" though.  We have had fewer doctor's dates and more playdates!  Here are some cute pictures of our recent activities:

I met up with a friend at Elephant Lunch.  The circus was in town.  The day of the first show they parade the elephants out and set up a buffet for them.  The babies didn't seem too interested, but Brenna thought it was really cool.

Camdyn found this hat prop at the dance studio and decided she needed to wear it through most of the Music & Movement class.  I do think she looks pretty cute!

Here are some of my students in our Music & Movement class.  Their favorite part of class is the bubbles.

Camdyn and Cade checking out the donkey at the petting farm.

I was quite surprised that Camdyn actually fed the donkey.  I thought she would be too scared, but she squatted right down and fed the donkey the carrot.

An Extraordinarily Ordinary Day

Today we went to the mall to return an item and buy a Rapunzel dress for Brenna with a Disney store credit.  We had already made a deposit at the bank and dropped off some clothes at a consignment store.  That all seems like a fairly ordinary day, right?  That's what I was thinking as I shuffled kids in and out of the car and stroller today running various errands.  The mall was our third stop of the day, and it felt pretty much like any regular day of running errands.  It was in the mall food court as I was cutting little pieces of Chick-fil-a nuggets and distributing them out to the twins that I realized this day was anything but ordinary.  It was a dream come true!
You might be wondering how such an ordinary day could be so extraordinary that I would call it "a dream come true".  Well, to understand why, you'll have to read a post that I wrote one year ago, A Trip to the Mall.  One year ago I longingly wished to be doing exactly what I did today, "One day I hope to go to the mall pushing my double stroller with my daughter trotting alongside.  We won't see danger looming in unsuspecting sleepers or run to "anti-bacterial heaven" after riding a kiddie ride.  We won't spend our entire lunch staring at a woman feeding her babies or think badly of parents strolling their infants uncovered.  We will simply enjoy our outing - one day! "
After doing our returns and purchasing the very important Rapunzel dress, we all sat around a table in the food court happily eating our Chick-fil-a meal.  I didn't stare at other women feeding their children wishing my own children would eat.  They were eating!  We didn't have to shop for any special sleepers that would allow for easy g-tube feeding, and if women were strolling their babies along uncovered, I didn't notice; I was too busy with my own kids.  Here's the craziest part - I even let the kids climb all over those germy rides.  They had a blast! 
Some things haven't changed though.  Brenna is still getting strep throat all the time, hence, the upcoming surgery to remove her tonsils and adenoids.  Cade is still wearing 12-18 month clothes, and we did still run to "anti-bacterial heaven" aka Bath and Body Works to disinfect ourselves from the germy rides.
We really did enjoy our outing.  "One day" was today, and it is a dream come true!

Brenna taking the babies to the kiddie rides.  Brenna insisted on wearing the Snow White dress to the mall today.  She said she felt beautiful in it, and who am I to argue with that?  You can only get away with wearing princess dresses around town for so long, so I may as well let her.                                                    

Camdyn and Cade "driving" the bus.  They were both going "vroom, vroom".  It was very cute!

Camdyn and Cade in the airplane.  They wanted to check out every ride, so their attention span was very limited.

A guy at a kiosk was demonstrating a toy helicopter which the kids found fascinating. 

and there you have it - my twins in their double stroller with their big sister trotting alongside (in a princess dress nonetheless).  Yes, it was an extraordinarily ordinary day!

Our Year in Numbers

2011 was our year of appointments.  The twins came home in August of 2010, and by the time we set up early intervention services, it was already September.  We had a lot of appointments from Sept.-Dec. of 2010, but this year, we've had a full 12 months of intensive therapy in addition to our regular check-ups.  You may be surprised by some of our numbers.  I know that several of the calculations surprised me.

Number of therapy, doctor, and specialist appts. - 232!

Amount we spent in co-pays in 2010 - $16,000

Amount we spent in co-pays in 2011- $10,535.22 
(better but still a lot!)

Amount insurance has paid out on our kids - $15,776
(much better than the 1.5 million they did last year)

Number of therapist, doctors, and specialists we've seen - 15
(pediatrician, surgeon, anesthesiologist, ENT, GI, pulmonologist, cardiologist, opthamologist, MDCP coordinator, PT, OT, ST, developmental specialist, ECI OT, dietician)

Number of these therapists, doctors, and specialists we no longer have to see in 2012 - 7

Number of surgeries - only 1

Major milestones met - 3 each and counting
(EATING!, walking, and talking- still in the works)

Pounds Camdyn gained over the entire year- only 5 (Camdyn doesn't even weigh what Cade did last year at this time yet!)

Pounds Cade gained (over the entire year)- only 4

Camdyn's current weight - 18.5 pounds

Cade's current weight - 23 pounds

Number of words for Camdyn - around 20
(We're working hard on this one.)

Number of words for Cade - around 40 and growing daily

Number of smiles, giggles, hugs, and answered prayers - countless!

When I hear someone say babies are expensive with the cost of diapers and formulas, I laugh to myself.  Babies aren't so expensive; micro-preemie twins are though.  With the $26,000 we have spent since they were born, it's like putting a child through college - only we didn't have 18 years to save for it.  As much as I dislike that our schedule revolves around going to appointments, I am so thankful that we are able to get them the therapy they need.  I'm even more thankful for all the progress they have made since last year.  I know we are extremely blessed; I never forget it.

I have set some goals for Camdyn and Cade for 2012.  Please join us in praying about the following goals:

- to gain a much larger vocabulary
- to learn more signs to help them communicate without getting frustrated
- to gain weight
- for Camdyn to get on the growth chart
- to stay well

Thank you all for the continued prayers.  It means a lot to us that so many of you follow our story and pray for us often.  Best wishes to all of you in 2012!