Wednesday, May 30, 2012

Teeny Weeny Bikini

This is too crazy not to share.  I bought this adorable ruffly little bikini for Brenna when she was a baby.  She was born in February, and the following pictures were taken the first time she went swimming in May.  She was 3 months old.  The bikini was a size 6-12 months and was a little big but fit fine.  She was a chubby little baby with lots of rolls.  I saved some of Brenna's cute clothes after she grew out of them just in case I would have another little girl in the future. 

And along came my teeny tiny girl.  Camdyn has finally grown into the bikini her big sister wore when she was 3 months old.  Camdyn is 2 years 1 month!  Whether on a chubby 3 month old or a pretty, petite 2 year old, this swimsuit has not lost it's girly charm.  It's hard to believe that the same suit that fit my 3 month old now fits my 2 year old!

Friday, May 25, 2012

Brenna's Pre-School Graduation

It feels like just yesterday that I was dropping Brenna off for her first day of school this year.  She had gone to school when she was 2-3 yrs old.  Then the twins were born, and our world was turned upside down.  We decided to keep her out of school the first year the twins were home from the hospital.  We couldn't risk her bringing home any viruses with the twin's compromised immune systems.  By the time this year rolled around, she was ready to go back to school.  Here's a picture of her so excited on the first day sporting her new backpack.

When she realized Mommy was leaving, this is the face that happened.  It made it really hard for me to leave with those big tears rolling down her cheeks.  She continued to cry every time I left for about the first month.  I felt so bad about that.  I knew it was because we had kept her home the previous year and she was used to spending a lot of time with me.  She has had to sacrifice a lot for her baby brother and baby sister. 

And, here is my big girl on her last day of pre-school.  Now, I was the one with the tears when I dropped her off.  I don't know how she got big so fast!

Her pre-school graduation ceremony was absolutely precious.  The kids sang some really cute songs complete with hand motions and dancing.  They were adorable!

Brenna with her "diploma" - a super cute devotional Bible especially made for "God's Little Princesses".  She loves it!

Here's her pre-school class singing and dancing.

She is really excited to start "big girl school" in the fall.  She asks about it every time we pass by the school she will attend.  It's on the street to our house, so we pass it several times a day.  I hope she stays excited so she won't have to cry on the first day.  There is no hope for me though.  I know I will be crying after I drop her off.  At least, I have a whole summer before I have to take my baby to kindergarten.

Tuesday, May 8, 2012

It's Nice to Be Me Again

Having a child changes everything so the saying goes.  It's true; it does, but having a micro-preemie (or two) takes your life and swirls it around like Dorothy's house dropping it with a thud in a place that may as well be Oz.  Nothing is the same.  Everything becomes before and after.  Nothing that you worried about previously matters, and everything that you worry about now matters.  If concerns are not "life or death", you don't have time for them because you now know that "life or death" is not just a saying; it's all too real.  That is life in the NICU.

The four and a half months that we were in the NICU felt like an eternity.  Time moved at a warped speed.  Each day, each week, each month seemed to drag on forever.  Recently, a mom who is in the NICU now asked me how I got through it.  I didn't have a magic answer for her.  I only told her to accept help from family and friends.  That's the only way the rest of my life could go on.  Friends volunteered to watch Brenna while I went to the hospital and family and friends brought us meals.  You can only deal with so much at one time, and when you are dealing with watching your babies struggle to live, there isn't a lot of room left over for anything else. 

At my dance studio, my sister and all the teachers and staff took over to run the business.  I will be forever grateful for that.  There was no way I could run the business at that time.  I hate to admit it, but I simply didn't care.  Thankfully, I have a wonderful staff who took over caring for me when I couldn't.  The only thing I cared about was that my babies would live and that they would be able to come home to live with their big sister, mommy, and daddy.

I remember nurses telling me that years from now I would look back on our time in the NICU as "a distant memory."  Maybe enough time hasn't passed because it's far from "distant;" however, I am pleased to say that it no longer consumes my entire being.  Not a day goes by that I don't think about the fact that my twins were micro-preemies.  I watch them sleep and marvel at how long they look in their cribs now and think back to seeing babies less than the size of a ruler curled up in their isolettes.  It's never "distant" in my mind.  These reminders pop up throughout my day, and I thank God every time they do.  Then, I move on.  I am more than a micro-preemie mom.  I can have other facets to my life now.  I can become passionate about dance again.  I can run the business I worked so hard to create.  I can spend time with my husband.  I can take my kids to the park.   

If I could change things, I certainly would.  No one wants their children to be born 16 weeks early only weighing a pound each.  But, I can't change that for them.  They will have to work harder to do what comes easily for other children.  They may have lasting effects from their prematurity.  I pray it makes them stronger individuals.  I know they have made me a stronger person.  I'm a different person than I was before they were born.  I don't fret over trivial problems anymore.  I take nothing for granted, and I thank God several times a day for all my blessings.  Those first four and a half months, I felt numb.  The first year, I felt like I was in survival mode followed by exhaustion with so many doctors and therapy appointments.  Now, I feel busy, but more importantly, I feel happy to be me again.  It's nice to be me again.

We Have Words!

Watching Camdyn and Cade turn into little people now is so much fun.  They are developing very distinct personalities.  They know what they want and can usually communicate enough with me now to get it.  They both are talking a lot more.  Cade repeats nearly everything you ask him to say and uses words to get what he wants most of the time like "up", "down", "out", "buckle" to get out of the car seat, "dink" for a drink, "eat", etc.  Camdyn is repeating more words now, but she struggles more to make the correct sound.  I'm happy she is trying.  That is huge progress.  When she couldn't say a word before, she would shake her head no telling us she didn't even want to try.  Her vocabulary is expanding every day now, and she is becoming more comfortable with trying new words even when they don't come out right.  We found out that our insurance is going to pay for speech therapy after several appeals.  Yay!

I took a video of all their new words, but it doesn't want to upload for some reason.  Here are some of my favorite things they are saying now:

1.  "sissy" or "shishee" for "sister"
2.  "cool" - sometimes "sissy cool" meaning we need to pick up Sissy from school.  They know when we pass by her school.  I can not drive by the school during the day unless we are there to pick her up.  They flip out, pointing to the window saying "sissy cool" over and over, then cry when we don't get her.  Very sweet but also sad!
3.  "nanu", "shashoo", "la oo" which all mean "love you".  It seems to come out different each time, but no matter how it comes out, it makes my heart melt!
4.  "dan cass" for "dance class".  They both love the Music & Movement class I teach at my studio.  They get very excited to go to "dan cass".
5.  "pay" or "pay ow side" for "play outside".  Cade does a lot better with putting two words together.  We are working on putting two words together with Camdyn
6.  "skeez" for "squeeze".  This is my new favorite.  When I ask Camdyn for a "squeeze" now, she wraps her skinny little arms around my neck and gives the daintiest little hug you can imagine and says "skeez".  I LOVE it!

I know most 2 year olds are speaking in sentences or at least phrases that are much more complex than two words, but I can honestly say that I am just happy to be seeing progress.  I know that once Camdyn gets more comfortable with speech and producing sounds and words, she will be talking all the time!

This video decided to upload correctly.  Here's Camdyn and Cade having a dance party with their cousin, Brylee.  We love when Brylee comes over.  She says she is going to be a therapist when she grows up, and if she decides to pursue that, she is going to make a great one.  When she comes over, it's like getting free speech, occupational, and physical therapy all at once, and the kids adore her!

Wednesday, May 2, 2012

Cade's 5th swallow study

I vowed never to do it again.  Look up stuff on the internet, that is.  It's depressing; it's worrisome.  Of hope, it is barren.  I began searching for videos of swallow studies which lead me to browsing the internet for articles on aspiration, silent aspiration, barium swallow studies, and back to vocal cord paralysis (as if I haven't already read just about every article out there on the subject).  Two years ago I had never even heard of these terms.  Now, I'm obsessed with finding out as much as I can, and although I hate to admit it, it all goes back to feeling guilty that I couldn't carry my babies to term.  Had they been born at term these words will still be unbeknown to me.  Instead, they are now part of my vocabulary, and the thought of aspiration enters my mind on a daily basis - at most every meal.  Each time Cade coughs when he drinks, I know that he very likely just aspirated at least a small amount.

The best description of aspiration I found in my depressing internet search is this:

"When the larynx is not closed tightly enough, food can penetrate into the trachea. The only cause for aspiration during the swallow is reduced laryngeal closure. During the swallow, the larynx closes at 3 levels: epiglottis and aryepiglottic folds, false vocal folds, and true vocal folds.

In order for aspiration to occur during the swallow, food must penetrate all 3 levels. " (UMD)

Cade did his 5th swallow study last week at Dell Children's Hospital.  He did better than he has in previous swallow studies but far from ideal.  At his last swallow study, we were told he should only drink from sippy cups with stoppers or slow-flow bottle nipples.  At this study, we were told he had a delayed swallow on every cup we tried.  I brought five different types of sippy cups, sports bottles, cups with straws, etc. to try.  He did best with a sippy cup that has a rim.  It did not have a stopper, but the flow was still slow enough for him to manage it.  When he tried to drink from an open cup, he had a silent aspiration which means he didn't even try to cough it out.  It went straight into his lungs.  That is very dangerous.  That leads to aspiration pneumonia. 

I left feeling once again defeated.  It wasn't what I wanted to hear.  I don't know if I'm ever going to be able to accept that they both still face challenges due to their prematurity.  It's really scary to hear him cough when he takes a drink too fast; it's even scarier to know that he is aspirating silently at times.  We were advised to use the cup with a rim that he did best with and to "proceed with caution".  I don't know exactly what that is supposed to mean.  Am I supposed to tell Cade's epiglottis to be careful?

I found this short video on YouTube that shows aspiration when swallowing.  You'll see the liquid going down the back of the throat.  That is what it is supposed to do.  You'll also see a thin line going down the front of the throat which is the airway.  That is aspiration.

As disappointed as I was to learn he is still aspirating, the speech therapist was hopeful.  She said he has already made progress and that he is getting stronger.  She told us that the best therapy for swallowing is swallowing.  As time goes on, hopefully he will get stronger and his swallow reflex will improve.

Birthday Party & Sea World

 Saturday morning we went to a birthday party for some of our triplet friends and NICU buddies, Wesley, Andy, and Natalie.  It was a wonderful party at a play place with a face painter and balloon artist.  They even had a lady making home-made play dough.  My kids had a blast and did not want to leave at the end of the party. 

Brenna had a butterfly painted on her face which she absolutely loved.  You can tell by the smile!

Camdyn wanted a turn next.  I think she mostly enjoyed sitting in the big chair.  I had the lady paint her hand.  When she finished painting her hand, Camdyn put her other hand out for it to be painted too. 

After the fun birthday party, we headed to San Antonio for the weekend.  Our cheerleading team from my studio was competing at Sea World.  They won 1st place!  I was really excited to bring the twins along this year.  I knew they were going to love it, and they did.

When we first arrived, we went to check out the dolphins.  Here Camdyn is waving at the dolphins.  How cute!  I think we have mastered the word "fish" after this weekend.  We called everything from dolphins to sharks to whales to sting rays to fish "fish".  Everything was either "big fish" or "little fish".

Camdyn and Cade looking in the aquarium (and licking on the glass)!

Camdyn and Cade rode a carousel for the first time.  Cade cried when he had to get off.  

Camdyn enthralled with the dolphin show.

Brenna on the carousel.

I was so impressed by how my "babies" were such big kids.  Not that long ago, they wouldn't even go through a tunnel on the ground at therapy.  At Sea World, they loved going through these net tunnels that were 15 feet high!  I still can't believe it.  I was scared.  I was so proud of them for being so adventurous.

Brenna was proud of herself for going on this ride all by herself.  She also rode her first big ride.  She and I along with cousin Colin rode Journey to Atlantis, a water coaster ride that drops down from way high up and splashes you at the bottom.  I thought she was going to cry, but instead she loved it.  We rode it two times before the park closed.

We stopped for a quick picture before climbing up the netting to go through the tunnels. 

It was a great weekend.  The kids are still tired from the weekend though.  They have been sleeping a lot.  I am having so much fun with the twins now that we are able to get out of the house and do things.  I love watching them discover the world around them.