Happy 5th Birthday, Maddi Bean

Maddi turned 5 today.  Maddi was our first scheduled c-section so we were able to choose this day specially for her.  We were so excited to meet her, our first daughter:

Maddi has always had a smiling personality and laughs easily.

6 months old

Happy birthday, sweet girl.  I hope you always stay the happy, funny, beautiful little girl both inside and out, forever.  

5 years old!

I also turned this:

Into this:

Her performance of Let It Go is much better in her Elsa dress!

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Inspiration

My friend, Kim, shared this piece of inspiration from 105.1 The Buzz's Facebook page:

May 2, 2013:

"Meet David Herron. He's a former military man, whose daughter couldn't find a prom dress that she liked because they were all too girly.....so, despite having no dressmaking experience, David bought a pattern and fabric.....and made it for her BY HIMSELF!"

I hope that Maddi's Elsa Gown turns out as well as David's daughter's dress did.  And not like this Denise Huxtable Gordon Gartrell Classic from the Cosby Show:

In case the embedded video doesn't work: http://www.youtube.com/watch?v=6ZNkgxB9Tlc

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LoLH Phase 1: Advice Needed and Videos of M & M

Yesterday was a Snow Day in Michigan.  On March 12th.  I can hardly believe it.  But, the day wasn't a total loss because the Postal Office delivers in rain or shine, snow or sleet.  Therefore, the new sewing machine still arrived on our doorstep.  Introducing the Brother Project Runway CS5055PRW Electric Sewing Machine!  Just the name alone makes me feel like a professional...Project Runway...oohhhhh.  Good marketing, Brother, good marketing.

After work, when the roads had cleared, I stopped at JoAnn's for a pattern and fabric.  I started looking for a pattern by opening a drawer and was faced with this:

Thinking that there must be an easier way to find a pattern, I flagged down the experienced woman behind the enormous cutting counter and she pointed me to a well-organized book.   I looked through the book and realized that this dress would require different parts of two different patterns. That doesn't scare me in the slightest (eek).

The next job was to pick out the fabric for the top, the skirt, and the cape.  With the perfect fabric selected, I took it to the cutting counter where there was a man also buying fabric and thread.  I followed him to the thread section, haha.  I also purchased new cutting shears and lots of pins.  I went home and set up shop, here is my workstation:

You may notice that I chose four different fabrics.  Again, why not go big?!  The top material is a bit see-through so it will need a liner.  I have no idea how to best attach the liner for easy sewing.  The woman at the store said I could do something to it - the word started with a "b", but I can't remember the word to even google the method - anyone know?

I found a nice stretchy, flowy material for the bottom of the dress which will hopefully lay better than the poofy skirt in the pattern.  I couldn't find a 100% sequined fabric in blue for the top of the dress, so I went with a fancy design of swirls sprinkled with sequins:

Next is the sleeve and cape material.  It has glitter all over it, much to my chagrin, but it was the best fit for the project and color of the other fabric:

After setting up the sewing station and reading the sewing machine instructions, I successfully wound the bobbin and tried a few practice seams.  The fabric may be tricky to work with since it is delicate, meshy, and stretchy.  I have already gone to Facebook to ask for advice on reverse stitching, but still have more questions.  If you have any answers or tricks and tips, please share here or on my Facebook post.

1.  How do you recommend marking the lines to be sewn - with one of those chalky white things that I see the seamstress use or pin the pattern to the fabric and sew together (then tear the pattern off after sewing?).

2.  Should I follow the pattern for the size Maddi is currently or measure her and compare - in other words, how accurate are patterns for sizing, typically?

3.  It was hard to guide the material and sew a seam at the edge of the fabric, should I leave a bigger edge and then trim later?  Or is leaving a bigger edge on the inside of the dress no big deal?

4.  Using the single stitch setting felt flimsy, which type of stitch is your go-to stitch?

5.  Repeating from above, what is the best way to attach the liner to the top?

6.  Anything else that a beginner sewer should know?

Thank you in advance for all of your advice and help. I told the nice lady at the store that she would likely be seeing me again (asking for help). She smiled and said, "yes, please come in and show us the finished product".  I chuckled, blushed, and thought, "I'm not sure I will want to bring it out into public", but then I realized that Maddi would love to wear it into the store and she will probably be beaming; and that's all that matters.

To make a lengthy post even lengthier, I want to share these videos of Mason and Maddi.  They have a new bedtime routine for Ava.  Mason reads her a book and then they both take turns singing Ava a lullaby before shutting the door.  They're the sweetest lullabies I've ever heard.  Mason creates different lyrics each night (my favorite song, that I didn't capture on video, was when he called her little darling).

Maddi singing Twinkle, Twinkle Little Star (it's dark and she sings softly):

Mason's song (also dark in the room and he sings softly):

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A New Etsy Store or A One Hit Wonder?

The last time I sewed a piece of clothing was in 6th grade.  I thought it was 8th grade, but it was actually in 1987 when I was 12 years old and taking my first Home Economics Class.  I chose to make a pair of Bermuda shorts since they were all-the-rage.  They looked something like the picture below.  I remember mine to be more of a yellow background, even uglier, and I wore them...in public...a lot. Ugh.

1980s Bermuda Shorts
Photo Credit: Polyvore.com

It would be 25 years before I would attempt another project.  That is really hard to type, for the record.  I thought it would be a good idea to make Maddi's 3rd brithday cake.  A Hello Kitty Cake.  It seemed simple enough, Hello Kitty doesn't even have a mouth so decorating would be simple.  I decided to invest in a Wilson many-pieces frosting set thinking that I would make elaborate birthday cakes for each child every year, thus saving us tons of money and putting the new kit to good use.  I made Maddi's cake and several cupcake cones, dropped the tip of the froster down the disposal, broke the disposal which necessitated a new disposal.  And haven't seen the frosting kit again.  I believe it made it through the move.  It may even be sitting in our pantry as I type, I just won't be confirming its location any time soon.

Similar to Maddi's cake.  Sadly, I cannot find a picture of the actual creation.  Maddi's cake had black piping around the bow and a yellow jelly bean nose!
Photo credit: on the watermark

So, of course it makes perfect sense that I would now, 2 years after my many one frosted cake, decide to start a new project for Maddi.  One I am calling - Labor of Love and Humor.  Like every 5 year old girl and her mom, we love the movie Frozen.  Maddi especially loves Elsa when she is fancy and glittery and shoots ice.  She requested an Elsa ice dress (and high heeled cowgirl boots) for her birthday.  Sure, no problem.   Googled Elsa dresses and they range from $50 (cheap)-$200 and up, depending on the Etsy maker.  Problem - I refuse to spend that much money on a dress I don't even like.

Enter brilliant idea #1 - I will borrow Grandma's sewing machine and make my own dress.  Wait 5 minutes, brilliant idea #2 - I will buy my own machine and make the dress myself (and the machine will get good use because I can then make curtains, throw pillows, all of my children's future clothing).

I've ordered a sewing machine that had a review from a teacher that uses them with her 4th-8th graders with no problems.  Perfect for me since the last time I sewed I was in 6th grade!  Add 1 to Cart?  Yes please.

I have decided to blog about this Labor of Love and Humor so that it is saved forever. Anyone remember the heirloom bracelet that got flushed?  Well, I can't have that happen with the Elsa Gown.  That one day it will be gone from sight and forgotten. I am writing about this process so that one day Maddi will know that even though I never crafted with her (glitter and glue - I just can't do), I tried to do something crafty for her.  Maddi is my stop-and-smell-the-roses little girl.  She is the best of me (love of life) and the worst of me (stubborn) all rolled into one.  But, for her 5th birthday I am channeling her stop-and-smell-the-roses attitude and appreciating the time, energy, and the stepping-out-of-the-box-ness this will take of me. And I am excited about it.  I am hoping that the next project will be something we will make together.

Why is it a Labor of Love and Humor?  Because I'm making this out of love for Maddi and the humor will come during the process and the end product, I'm sure.  Stay tuned.  I'm sure it will be a breeze to create this:

Photo credit: Disney

And who knows, maybe this will be the first creation of a new Mother-Daughter Etsy Store...just kidding!

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Ava turned 3 and thoughts about Rare Disease Day

February 24, 2014 marked Ava's third birthday.  I can hardly believe that our little girl is 3 years old. It seems like just yesterday that she looked like this:

Leaving the hospital

Mason and Ava on her first day home

Maddi and Ava - sisterly love

In typical third child fashion I did not get any good pictures of her small family birthday gathering.  So, this phone picture will have to do:

Ava getting ready for her cake

Ava has had quite an adventurous first 3 years.  She has opened eyes and captured hearts.  We love you, baby girl, and can't wait to see what this year brings.

Family beach trip in July 2013
Photo Credit:  Chad Button

Today, February 28th, is Rare Disease Day.  I don't often consider what Ava "has" to be a "disease", but rather more of a chromosome "change", because Ava does not have a named diagnosis other than a "partial trisomy of the 1q".  It may also be because the word "disease" scares me.  Statistics indicate that 30% of children with rare diseases will not live to celebrate their 5th birthday.  This is terrifying, heartbreaking, and too close to home.  We have no reason to believe that Ava would not celebrate her 5th birthday, but there are many children with rare diseases who may become or are part of that 30% statistic. As I wrap my brain around the enormity of rare disease I will be looking to National Organization for Rare Disorders (NORD) and other non-profits for guidance and education.  I want to be educated about as many rare diseases as possible so that I can best support the many families living with and through rare diseases.  For more information about Rare Disease Day visit www.rarediseaseday.org.

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Feeding Tube Awareness Week 2014: Nothing Can Hold Us Back

1008 Days Ago.

1008 days ago, it was a typical day with our family at home juggling care for a newborn and her older siblings; Mason was three years old and Maddi was two years old.  We knew that Ava was not gaining weight well, but we had no idea what was preventing appropriate weight gain or what was in store for us.  Late in the night on May 10, 2011, Ava developed a high fever and we rushed her to the emergency department.  Ava’s oxygen saturation was low and they admitted us for flu observation and oxygen support.  Six days later, Ava would fail her first swallow study, we would discover she had aspiration pneumonia - not the flu, she would receive her first NG tube to prevent aspiration, start genetic testing, and not eat or drink by mouth until December 19, 2011 when she was cleared for nectar thick foods and liquids. 

Ava all dressed up for the Royal wedding, 11 days before admission, this dress was swimming on her! - April 2011

1002 Days Ago…

Is when life, as we knew it, changed and we entered the world of tube-feeding with all of the struggles and blessings it holds.  1002 days ago, Ava had been in the hospital for six days while the doctors and nurses tried to figure out why this tiny ten-week old baby girl was not gaining weight and needed oxygen to keep her breathing at a normal level.

Ava after 4 days of NG feeds - May 2011

2 years, 8 months, and 26 days...

Is a long time to live with a feeding tube and to parent a child who is fed with a tube.  Especially when the initial assessment was that she would have an NG tube for one week and then reassess (which in my mind meant she would pass the reassessment and we would be tube-free in seven days).  It is also a long time to emotionally grow and thrive as parents, while our child physically grew and thrived with her tube feeds.

Maddi and Ava in May 2013
Photo Credit: Jenn Clark Photography

I remember feeling fearful when Ava first received her NG tube in the hospital.  Not fearful of what people would think or that she would have it forever because we initially thought it would only be for seven days. I was fearful of the discomfort it would cause her and of learning how to put it in.  I hated the tape on her face that irritated her delicate skin.  However, learning to feed Ava with the tube was easier than I anticipated.  Ava was continuously fed small amounts of food for 24 hours a day to prevent aspiration.  That meant that we not only carried Ava everywhere we went, but also her feeding bag, and for several weeks upon discharge, her oxygen tank.

Annual visit to the peony garden, June 2011, shortly after discharge

Super Daddy with Ava, the feeding pump, and oxygen tank - June 2011

For the two weeks that Ava was inpatient, we kept Mason and Maddi at home and in daycare to keep their daily lives as normal as possible.  I primarily stayed in the hospital with Ava since it was the end of my maternity leave, while my husband juggled work and Mason and Maddi.  We switched places a couple times during those two weeks to give each other a break and for each of us to see the other children. 

After two weeks in the hospital, we went home with Ava still using oxygen 24 hours a day and still feeding through her NG tube 24 hours a day.  I remember the day we went home like it was yesterday.  Mason and Maddi had not come to the hospital and so they had not seen Ava with her NG tube and oxygen cannula.  I was worried about what they might think or say; sometimes kids have a way of being very innocent and honest, but say things that adults may not be ready to hear.  I was sitting on the couch with Ava in my lap and just staring at her tubes…at her tubes…not at her. 

Mason, in his three year old wisdom, came over and lovingly patted Ava’s head and said in his sweet little voice, “awweeee….she’s so cute”, and walked away.  I froze...and realized that my heart was pounding because I was afraid he would say something about her tubes and I hadn’t yet figured out how I felt about them, much less how I would explain them to a three year old little boy.  But in that moment, seeing Ava through Mason’s eyes, I was forever changed.  I no longer saw the tubes on Ava’s face…I only saw Ava.  And I knew that Nothing Would Hold Us Back.

Mason and Ava in May 2011

That is when our lives changed again.  From that day forward, the way I felt about and viewed tube feeding was in a positive way and not with fear.  Tube feeding does not define Ava, it is merely the way she receives her nutrition.

Ava on the beach, July 2011
Photo Credit: Chad Button

Where are we 1002 days after May 16, 2011?  Ava now has a g-tube and is successfully fed a blenderized diet over four meals a day.  She is also cleared to eat or drink all consistencies of food and liquid.  Ava’s oral muscles are still weaker and so she is primarily fed via g-tube, but she enjoys oral eating and is orally eating more and more.  Mason and Maddi help carry Ava’s food backpack and have still never questioned Ava’s feeding tube.  If people ask about it they simply say that’s how Ava gets her food.  Ava has played in the ocean and swims in pools.  We bike, camp, hike, run, and enjoy all the activities in life we can handle with three children aged six and under.  One just happens to be primarily fed through a tube.   

Ava and the kids hiking in the Hocking Hills.  Ava was simultaneously tube feeding and hiking.  The Danger was for the cliffs, not for the tube feeding! - August 2013
Photo Credit: Stacey Thomson

How do we feel about our child having a feeding tube?  Thankful.  The feeding tube not only SAVED Ava’s life, but it allows us to LIVE life.  Without her feeding tube, Ava would not be here.  I don’t say that dramatically, but rather factually.  Ava aspirated fluid into her lungs.  If we had to continue feeding her orally before her muscles were ready, she would not have survived.

Photo Credit: Renee Tarmoom

Before Ava had a feeding tube I am not sure if I truly paid attention to other children or adults who had them.  After Ava received her feeding tube I wanted to run up to every family I saw in public or in the hospital and yell, “MY daughter has a feeding tube, I’m part of the club!!”…but that would be creepy and stalkerish.  So, now I politely smile and wave to the kids or smile and nod to the adults.  I don’t have a sign on my forehead that says, “I’m a tube feeding mom”, but I am ordering an “I heart a Tubie” button from the Feeding Tube Awareness Foundation store and will wear it with pride!

Feeding Tube Awareness Store

Feeding Tube Awareness Week 2014 Video:

For more information about tubefeeding awareness, please visit www.feedingtubeawareness.org.

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