Amazing Women

At first glance of the picture above, one might think this is a group of friends going out for dinner and some drinks.  That guess would be partly correct.  One might think we are getting together to catch up on the latest gossip, talk about our relationships, discuss the newest movies, etc.  This is where the picture would be deceiving.  One would never guess by looking at this group of ladies that our conversations include feeding issues, g-tubes, swallow studies, brain scans, brain bleeds, weight gain (not our own but the minimal weight gain of our preemies), Synagis shots, therapies, specialists, and surgeries. 

Back in the NICU, a few moms and I met once a week in the lobby cafe for lunch.  We would share our preemies' progress, setbacks, and challenges.  It was comforting to know we were not in this alone.  We could relate to each other even if all our stories were different.  We were preemie moms.  We loved our children, worried about them, wanted the best for them, and desperately wanted them to be able to come home.

After leaving the NICU, I realized I missed the conversations and support of these women.  A few of us decided to get together again for coffee or dinner once a month.  Our little group that started out with 3 has now grown into 10+ and continues to grow.  I look forward to our monthly meetings.  It is comforting to know others have walked similar roads.  When they offer advice, it's because they have been there.  It's not just random advice that people offer up because they don't know what to say.  They don't ever say, "Don't worry; everything's going to be okay," because they know that is not always the case despite everyone's hopes that it will all be okay.  We can laugh together about how our skin just crawls when people complain about being pregnant.  We can vent about the stupid policies of the insurance companies.  We can share valuable information about therapies and specialists.  Most importantly, we are there to sometimes, just listen - without that awful look of sympathy those who have not walked this road unknowingly give.

These are some of the strongest, most amazing women I know.  (A few are not in the picture because they were not able to make it this last time.)  Anyone would be amazed and honored to sit at the table with these women and hear their stories.  I will only be using the names of the women who have blogs because I know they are open to sharing their story.  Everyone who reads this blog already knows that my twins were born 16 weeks early weighing 1 lb. 2 oz. and 1 lb. 8 oz.  Fortunately, after their first year with major feeding challenges, they are now showing fewer and fewer signs of their extreme prematurity.  Another mom in the group had her son at 25 weeks also weighing only 1 lb. 2 oz.   Katrina has the most incredible birth story I have ever heard; she had her son, Bryce, at only 24 weeks gestation, unexpectedly on her bathroom floor.  You can read Bryce and his mommy and daddy's amazing story here.  Mackenzie also has twins.  When she was pregnant, she unknowingly contracted a food-borne bacteria which passed on to one of her twins.  Doctors told her it was a one in a million chance.  You can read her amazing story here.  We have another mom in the group who has twins who were born at 25 weeks gestation.  Two moms in the group have triplets! 

Natalie has twins who suffered from twin-to-twin transfusion syndrome in utero.  She tells what unfolded from the point she learned this so grippingly in this post on her blog.  Her daughter, Harper, will be undergoing major brain surgery on Dec. 7th.  You can read about the surgery here.  I have been praying for this family a lot lately.  I can't imagine what she is going through with the decisions she has had to make and is still having to make for her girls.  Please join me in praying for all of these amazing women and their incredible children, especially for little Harper as she undergoes surgery soon.

It's Beginning to Look a Lot Like Christmas!

We had a great Thanksgiving - ate some turkey, visited with family, all that good stuff . . . but it all just leads up to the really good stuff - Christmas!  I love Christmas. 

We took the kids to visit Santa at the mall before Thanksgiving.  I did not want to wait in a long line with a bunch of other kids.  I also didn't want all those snotty kids sitting on Santa's lap right before my kids did.  How many times does Santa wash that Santa suit anyway?  I know that sounds terrible, but we still have to be very careful about protecting the twins from colds and viruses (especially RSV) this winter.  This was their first year to visit Santa since they were in complete isolation last year.  Cade just looked confused and Camdyn was on the brink of a meltdown.  They snapped a quick picture just before Camdyn had a meltdown.  She had no idea why I would set her on this crazy man's lap.  I quickly picked her up and all was good again.  In the picture below, the kids are checking out the giant tree in the mall.

                                

 
My sister and I are those crazy Black Friday shopping people.  We make it a marathon of shopping.  We started at 8 PM and continued shopping all through the night and into the next morning.  We finally wrapped it up at 10 AM.  It was a total of 14 hours of shopping!  We do all of our Christmas shopping and save hundreds!  Yes, my sister had these fun shirts made for us a couple of years ago.  The back says, "Step aside and no one gets hurt" jokingly, of course.  We might be crazy shoppers but we don't start any fist fights or carry pepper spray. 

We put up our Christmas tree this evening.  I'm not sure how long it will last with decorations actually on it with two destructive one year olds in the house, but we have to have a Christmas tree.  Here the babies are "helping" decorate.  I would give them an ornament and tell them to hang it on the tree.  They would take the ornament over to the tree and either lay it (Camdyn) or throw it  (Cade) in some of the branches. 

Camdyn carefully laying her ornament on the branches.

Here's Cade after he threw his ornament into the tree.

Cade's "I didn't do it" look after pulling several ornaments off the tree!

The stockings were hung . . . (5 stockings still looks like a lot to me)!

My mom gave Camdyn and Cade these adorable "Baby's First Christmas" ornaments last year.  I just love how cute they look together all "twinny".

Brenna's section of the tree.  She decided to hang all of her princess/Barbie ornaments very close together because "they are all friends".

Brenna loves playing with all of the ornaments on the tree.  We have a lot of ornaments that play music or have moving parts.  She was so excited about decorating the tree and playing with all of the decorations again this year.  She told me we could not eat dinner until all the decorating was done.

In our old house, our Christmas tree looked huge.  In our new house which has very high ceilings, our tree looks a little like a Charlie Brown Christmas tree.  I plan on buying a new taller tree after Christmas.  As you can probably figure after reading about my crazy Black Friday shopping, I have to wait for a sale.  I rarely buy anything for full price.

The shopping is done, the Santa picture is taken, the presents are wrapped, the stockings are hung, and the tree is up.  Yes, we are ready for Christmas!



Thankful

This Thanksgiving, I am so thankful for all the progress Camdyn and Cade have made.  I looked back on a post from last year around Thanksgiving.  This is where we were last year:

"Camdyn - Camdyn now weighs 11 lb. 11 oz. She is still very tiny, but she is following her own little preemie curve. The doctor said that for 7 month olds, she is in the .08%. She is not even in the 1%. She still takes forever to take a bottle, but she is slowly getting more efficient. We are trying them on a 4 hour schedule instead of a 3 hour schedule, and it seems to be working alright. We are hoping that it will work because it gives us two more hours in our days.



Cade - Cade now weighs 16 lbs. 2 oz. (almost 5 lbs more than Camdyn). He is huge for a preemie. He is actually in the 12th percentile for all 7 month olds which is incredible since he should really only be 3 months old. He hasn't made much progress with eating orally. He takes his pacifier very well, but he hates the bottle. We have tried just about every type of bottle, and it doesn't make a difference. He is still getting therapy to work on feeding three times a week. He has a GI appointment at the beginning of Dec. to talk about the possibility of needing a g-tube."
 
Wow!  Looking back at that exhausts me all over again.  I am thankful that we no longer have to feed them every 3-4 hours.  I am thankful that I can now give both of them full bottles, and they drink them down in no time!  I am thankful that Cade eats!  I am thankful that they are walking and getting into everything.  I am thankful for all the progress they have made.  I wish I could have seen our lives now when they were in the NICU and during the first year home.  They are so amazing.
 
I am also so thankful for my sweet daughter, Brenna.  She makes me laugh every day.  She gives the best hugs, and she helps take care of the babies.  She loves being a little "mommy" to her baby brother and baby sister.  She also loves being a "therapist" helping them learn new things. 
 
I am thankful for my wonderful husband.  I can't imagine raising three kids without him!  I love the way Camdyn runs to him when he gets home and says "Da-y".  She is daddy's little girl.  I love the way he lets Brenna sleep in our bed more than he should.  I love how he lays on the living room floor and lets all the kids crawl all over him like a jungle gym.  I am thankful that my kids have such a wonderful Daddy.
 
Every day is Thanksgiving for me.  I count my blessings every time I see the babies do something new.  Their beginnings make me look at life in a different way.  I appreciate more.  I am thankful more.  I never forget the gift of life.

19 Months (15 months adjusted)

We went in for our "18 month" check yesterday.  They are 19 months old, but our regular pediatrician was out of the office due to a back surgery.  We decided to wait until he returned instead of seeing the fill-in pediatrician.  I felt like it would take forever to go over their entire histories, surgeries, hospitalizations, etc.  It was much easier to wait for our regular pediatrician, whom we love, to be back.

Cade - Cade is now 22 lbs. 5 oz. and 32 inches tall.  Our pediatrician only uses chronological age and not adjusted age, so the charts are based on all 19 month olds.   For height, Cade is in the 25th percentile.  For weight, he is in the 5th percentile.

Camdyn - Camdyn is now 18 lb. 3 oz.  and 31 inches tall.  For height, Camdyn is in the 15th percentile.  For weight, she is not on the charts at all.  She would have to weigh about 20 lbs. to even make it to the 3rd percentile.  She eats well and drinks high-calorie Pediasure all day, but gaining weight is hard for her.

We also had Cade's first appointment to get his Synagis shot yesterday morning.  It was a busy appointment day!  Cade qualifies for Synagis this year, but Camdyn does not.  Cade will be getting a Synagis shot (actually 2 shots now because of his weight) every month until March.  The shot costs $2800 each month.  Fortunately, insurance covers it.  The expense of the medication is why it is so hard to get qualified.  Camdyn did not meet the guidelines for approval for a second season.  It feels very strange to know that one child will be protected against RSV, and one will not.  Her pediatrician says her lungs sound very healthy though, so if she were to get it, she should be able to fight it off.  Just the idea of her getting RSV sends me into a panic attack.  She doesn't qualify because she has not had any recent history with lung problems like wheezing, upper respiratory infection, or pneumonia.  Regardless, she was still born 16 weeks early with very underdeveloped lungs, spent 5 weeks on a ventilator, several more weeks on oxygen, was hospitalized at 5 months old due to lung issues, and still only weighs 18 pounds.  Her lungs can't be that big (i.e. healthy)!  We will be in semi-isolation again this winter and washing/sanitizing frequently.

I surrendered and bought the monkey leashes.  I always thought those things were terrible until I had two toddlers.  Cade runs off into the parking lot while Camdyn is taking her sweet time.  I had to have a better system of keeping them together.  We could use the stroller, but I think walking, climbing stairs, going up and down ramps, etc. is good for them.  Brenna thinks it is a lot of fun to "walk" the babies.  Doesn't that sound terrible?

Brenna "walking" the twins

Camdyn looking so pretty in her panda outfit.  This was Brenna's.  Brenna wore it when she was around 10 months old, and Camdn is wearing it when she is almost 20 months old (and it is too big)!

cute smiling girl - She's probably happy because she doesn't have to get a painful Synagis shot.

In the News

Camdyn and Cade were featured in a news article in our local paper.  You can read it here.  I didn't know they were doing this, so I was really excited when a friend posted it on facebook.  What a pleasant surprise!

Fall Photos

My good friend, Jennifer Glynn-Schattle, took these wonderful fall photos for us at a local pumpkin patch last month.  I wanted to make sure to post them before Christmas creeps up on us.  I love how these pumpkin photos turned out.  The kids were enthralled with all the pumpkins.  I loved watching them crawl over the pumpkins and try to pick them all up.  It was a great day!  I had a hard time narrowing my favorites because they were all fantastic.

my lil' pumpkins in the pumpkins

All 3 of my precious pumpkins.  Aren't those tights the cutest?

We posed the kids like this, but Cade had other plans.  He decided to pull his sisters in the wagon.  I didn't think he would be strong enough, but before I knew it, the girls were rolling down the hill, and I was running after them to stop the wagon!



Cade and Camdyn enjoyed being pulled in the wagon through the pumpkins.

my beautiful Brenna



I love how the sun is shining behind her on this one. 

my adorable Camdyn - Her eyes look so amazing in this picture.

Cade was very serious for most of his photo shoot.  Even so, he still looks adorable with his white-blonde hair and baby blue eyes.

I tried to get him to smile in this picture.  I threw my hands up and told him to yell, "Yay!"  This is the silly face we got.  Isn't it precious?

Thank you Jennifer for all of these awesome photos and for all your patience with my kids.  Check out Jennifer's blog at www.jenniferschattleblog.com.



World Prematurity Day

November 17 marks the date for the first annual global World Prematurity Day.  On this day, families of infants born prematurely are encouraged to share their story.  Thirteen million babies are born prematurely every year.  Of those, one million do not survive.  Tomorrow we will be wearing purple to celebrate World Prematurity Day in honor of our premature babies and in memory of all the premature babies who did not survive.

I sat beside another mom in the lobby of the therapy clinic last week.  We began talking.  She told me her son was there for a slight speech delay.  I told her my twins were there for speech therapy and physical therapy.  I did not tell her, at that point, they were born 16 weeks early.  When talking to other moms now, I always tread lightly.  I don't delve into their scary, traumatic birth upon meeting someone.  When people ask me how old they are and I say 19 months, I often get the reply, "They're so little."  I usually just say, "Yes, they are."  Sometimes that's the end of the conversation and other times, they ask further questions like, "How much did they weigh when they were born?"  I'm certain they expect me to reply with a "shockingly" small weight like 3 or 4 pounds.  When I casually reply, "1 lb. 2 oz. and 1 lb. 8 oz." their mouths drop in awe and their eyes widen in shock.  That's the direction this conversation took.  After the twins came home, I so desperately wanted things to just be normal that I hated these casual conversations.  I didn't want to relive the experience.  After a few more months passed, I began wanting to tell everyone their amazing story.  It's such an incredible story afer all.  Now, I think I have found a perfect balance.  I don't jump into telling others about their prematurity at the first opportunity nor do I avoid it.  I wait to see if the person I am talking to is truly interested and can handle the details.  The other mom at the therapy clinic was truly interested in their story and asked respectful questions.  She told me that she could not even imagine what it would be like to see your child at only one pound.  I tried to tell her without frightening her what it was like to look at your child only weighing a pound.

When I first looked at my own children, I couldn't believe how small they looked.  Jim had tried to prepare me for what I would see before my first trip to the NICU, but you can not prepare a mother to see her one pound babies.  If you were to look back at the beginning of this blog, you would see that I never posted pictures of the babies their first few weeks.  I still can't find the words to explain why I couldn't bring myself to share their pictures.  I knew that when I looked at my babies, I saw my babies, tiny and with lots of tubes, but still my babies.  I also knew that when others looked at my babies all they would see were tiny, sick babies with lots of tubes.  I didn't think they would be able to look past the tubes to see my precious babies.  Hands, feet, fingers, toes - those are all the pictures I took of the babies in their early days.  Those were the parts that looked "normal".  Fortunately, my mother-in-law took lots of pictures, and she took pictures of the whole baby!  I am so thankful she did this.  I recently asked her to send me all the pictures she took. 

In celebration of World Prematurity Day, I am posting their birth pictures along with a recent picture.  These pictures tell an incredible story and serve as a testament to the power of God, prayer, and advances in the field of neonatology.  We are blessed!

Camdyn at 1 week old (she had dropped down to just 1 lb.)

Camdyn now (17 pounds of cuteness!)

Cade at 1 week old (he had dropped down to 1 lb. 6 oz.)

Cade now (23 pounds of fantastic trouble!)

Join us in praying for all families who have been affected by prematurity - those who are dealing with effects of their child's prematurity, those who are currently in the NICU watching their children struggle to live, and especially those families who have lost a child due to prematurity.

Favorite Things

One of the best things about having twins is coordinating outfits, and one of the best things about cooler weather is dressing your babies in footed pajamas.  When they are toddling around the house in these adorable pjs looking cuter than cute, I can't help but smile!

Preemie Power!

I am excited to announce that Camdyn and Cade were the winners of the Preemie Power Contest in the 1-5 year old category!  There were over 91 contestants from 29 states entered in the contest.  Three winners were selected in different age categories.  We were thrilled to find out they won the "Preemies of the Year" title.  We already knew they were amazing, but now they have superhero capes to prove it! 

The Preemie Power Event hosted by Hand to Hold was held this past Sunday.  Brenna, Camdyn, and Cade along with their cousins all had a blast!  Camdyn and Cade were running all over the place and checking out all the booths and activities.  I was chasing one while Daddy was chasing the other one.  They were so interested in everything.  

We had a chance to visit with Dr. McCormick, their neonatologist, and Yvette, the NICU coordinator from NAMC.   

Big sister Brenna enjoyed watching this clown make her a balloon flower; however, she did not want to get too close to him.  He leaned over for a picture, and she took a step back!

Cade was fascinated with Scooby Doo and Shaggy at the event.  He was willing to give Shaggy a high-five but he would not give Scooby one.

I tried to get a picture with both Camdyn and Cade looking at me next to their prize winnings, but Cade was too busy checking out the new stuff to look at me.

Camdyn was ready to pull her wagon of goodies out the door, but her superhero cape was a bit long, and she kept stepping on it.  (It reminds me of the seamstress on Incredibles who says, "NO CAPES!" after telling about how all the superheroes' capes got in the way.)

Super Cade is off to save the day (or at least accomplish some amazing micro-preemie feat)!

Super Camdyn posing for a picture and showing off her new Preemie Power cape.

Thanks again to all of you who voted for The One Pound Wonders in the Preemie Power Contest.  It means a great deal to me that all of you have supported Camdyn and Cade along their journey from one pound micro-preemies to the active toddlers they are today.  I love that you all root them on as they accomplish things we were told they may never accomplish.  Thank you all for your love, support, and prayers along the way!

We lost something today . . .

What happened today, prompted me to write the Micro-Preemie Handbook post.  If you haven't already read it, click here to read it first.  It's an essential part of the story.

After therapy today, I went to change both kids' diapers in the bathroom at the clinic.  Their physical therapist was helping me with the kids when she noticed something on the bathroom floor.  She pointed to the mysterious object and said, "Is that the door stop?  What is that?"  I look down and shockingly replied, "No, that's Cade's g-tube!"

Between him pulling on it all the time lately and me picking him up with one arm around the stomach since I was holding Camdyn in the other arm, it popped out.  The balloon part of it that holds it in his stomach had burst open.  I threw it in the trash and asked for a band-aid to put over the hole in his stomach.  The hole is very small (about the size of a belly button).

It was 12:15 PM.  I tried calling both the GI office and the pediatrician's office, but they were both closed for lunch.  That's how Cade rolls!  He learned his Micro-Preemie Handbook lessons well.  Do the unexpected.  He had to add in, "at the most inopportune time!"

When I finally reached the GI office, the nurse told me we needed to head to Dell Children's ER and soon!  The site would start closing up within the next 45 minutes.  We did not have any back up g-tubes at home to reinsert.  I had called the supply company about sending us an additional one when we used the last one.  I was told they can only send one every 6 months.  There's another stupid policy in this whole micro-preemie world! 

I asked the nurse about the necessity of going to the ER to get another tube when we hadn't used a tube since March.  She asked the GI doctor, and much to my surprise, he told us we could let the site close up on its own.  WHAT?!

She goes on to tell me to use gauze and tape to cover the site for the next couple of weeks.  She rambles off some very vague instructions and is ready to end the conversation.  Wait - I have questions.  To her, this is an everyday occurrence.  To me, it's my son with an open hole in his stomach!

This is definitely not how I had this planned, but what do the babies ever do according to my plan?  So, here's what Cade looks like now. 

The bandage looks much worse than it is.  We could probably cover the hole with one of those little circle band-aids, but this is how we were told to do it.  We are supposed to keep the area clean and dry.  Cade will be taking only showers for the next few weeks.  He can't sit submerged in water. 

We have an appointment the week of Thanksgiving with the surgeon to assess the site.  He will determine if it has closed on its own or if he needs surgery.  As stange as it may seem, I want him to have it surgically closed.  Right now, a stitch is trying to come out causing a bump around the site.  I know he is going to have a scar, but I want the scar to be pretty.  You can see in the above picture that the right side of his belly already has a big scar.  When the nurses removed the lead tape from his translucent, thin skin back in the NICU, it just pulled the skin right off.  He deserves a pretty scar.

I've been waiting a long time for this.  This is the first time since Cade's birth that he has been completely tube free.  He did pull his ng tube out on many occassions, but we always knew we had to put it back in.  This is different.  He's tube free, and there is no plan to put any tubes back in him or on him or anywhere around him!

Micro-Preemie Handbook

After micro-preemies are stabilized in the NICU, the next order of business must surely be the commencement of the Micro-Preemie Handbook lessons.  I'm convinced this must secretly take place in NICUs all over the country.  When mom and dad aren't present, the nurses sit by the isolettes reading from the Micro-Preemie Handbook to all the tiny babies.  The parents are told after several months their babies are now "feeder-growers" meaning they only need to gain weight and learn to eat; however, the truth is the babies have not finished learning all the rules from the Micro-Preemie Handbook.  Once they have an adequate understanding of their micro-preemieness and all that entails, they are then given a graduation/discharge date.  Here is what the micro-preemies must learn:

1.  Always worry your parents.
2.  Never do what is expected.
3.  Never do what is expected.
4.  Never do what is expected!

If you do the above, your parents will go slightly crazy.  Do not fear, this will keep them on their toes and make them the best advocate for you.  In so doing, you will teach your parents patience, hope, faith, and a love that will redefine their entire perspective on life, so go ahead - worry your parents and always do the unexpected!

All of Me

I wrote these words back on August 10, 2010 just 4 days before the babies came home.  We had just been told that Cade had bilateral vocal cord paralysis (which later turned out to be an innacurate diagnosis) and would possibly need a tracheotomy for life.  I was feeling devastated by this news, when I wrote the following:


"I don't really even know what, how, or if I should hope at this point.  You hear things like "false hope," "don't get your hopes up" and then also, "hope for the best" and "hold on to hope."  What the heck?!  What am I supposed to do?  I don't want to give up hope that everything is going to turn out great, but I don't want to build up some false sense of hope when I should be working on acceptance.  This is so confusing, and often times, it is just too much."


My tell-it-like-it-is sister told me quite frankly I was being very pessimistic and responded on the blog, "get your hopes up, fill your heart with love, continue to pray, and make a wish whenever you can!"


I did continue to pray despite my feelings of despair, and I continued to love my babies unconditionally.  Throughout their NICU stay, I tried my best to stay strong for them.  I knew they needed me to believe in them. 


As I was driving today, a song came on the radio and unexpectedly I began sobbing.  I mean really sobbing.  It opened wounds that I thought were healing.  It's like I had tried to bandage a wound needing several stitches with a tiny band-aid.  This is where I would normally quote a few lines that particularly touched me, but every line in this song feels like it was pulled straight from my heart.  Here's the song for those who need a good cry (have tissues ready), and be sure to click on the link at the end that tells the writer's story. 


http://www.youtube.com/watch?v=50ygAc2qP5A

Halloween

I know it's past Halloween, but I'm just getting around to posting all our cute Halloween photos.  Last weekend, we took the kids to another fall festival.  They had several different activities, and the kids loved it.

Little Bo Peep took her sheep for a spin in the pink Barbie Mustang.  Doesn't it look like a cartoon?

Jim's look cracks me up here.  Can't you just hear him saying, "Do you really have to take a picture right now?  Can't you put the camera down and grab a kid?"  As I was taking the picture, I was already planning the photo description - 'Daddy herds the sheep'.  I didn't realize how appropriate their costumes were until then.  We are constantly herding our little sheep these days.  They are enjoying their newfound independence with walking.

Daddy helped Brenna make a pencil box at the Home Depot booth while the babies enjoyed banging blocks together.  Cade wanted to hammer something too, but we quickly put a stop to that.

Camdyn's first pony ride.  She wasn't too thrilled.  She wanted Daddy to hold her about halfway through.

Brenna loved the pony ride.

Cade's first pony ride.  He looks very bored in this picture, but he actually loved it.  He cried when we took him off the pony.

Brenna holding a baby chick in the petting zoo.

On Halloween, we had our niece, nephew, and our new neighbors come over.  We had fun painting pumpkins, decorating cupcakes, and eating hot dogs before going trick-or-treating.

ready to go trick-or-treating

The babies trick-or-treating with Aunt BB.  They really enjoyed walking up to the different houses, and all the neighbors loved their costumes.

It's finally getting to be long-sleeve weather here in Texas.  I couldn't wait to put Cade in this adorable shirt I found.  It says, "for a small guy, I'm still a BIG DEAL"  I just love it!