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Friday, July 21, 2017

In Honor of April Rey- A Donation That Can Save Lives

Mama's Organized Chaos: A Babywise Blog
When we learned of April Rey's condition, our first thought was that her life could serve a purpose by helping others. Unfortunately, we quickly learned that she was not eligible for organ donation.

Our next thought was that we'd love to donate her body to science. We've hit some roadblocks with this, but are still actively pursuing this as an option. Donating her body to science of any level- whether it is high end research or a first year medical student who needs to practice, would bring us great joy.

This morning I woke and realized that we can do even more than this...

Thursday, July 20, 2017

Trisomy 13- April Rey's 17 Week Anatomy Scan

Mama's Organized Chaos: A Babywise Blog
Today we had our anatomy scan. This appointment has been scheduled for awhile- long before we even knew that April had trisomy 13. I wasn't sure what to expect, honestly. April's ultrasounds have looked beautiful thus far, and as I've discussed previously, trisomy 13 babies often don't show abnormalities on ultrasounds- especially at this early gestational age.

I figured we'd continue to see good ultrasounds for awhile longer. I was so very wrong...

Today, we started seeing significant defects on her ultrasound images, and also received our final amniocentesis report.

Tuesday, July 18, 2017

Fun at the Grocery Store with Our Toddler (2.5 Years Old)

Mama's Organized Chaos: A Babywise Blog
I've been writing sooo much about April Rey and our trisomy 13 journey. This post is a nice little break from the sadness in our worlds right now. The truth is that Caroline brings us so much joy, even in such a time of grief.  It's moments like these, that we get to just be in the moment and enjoy our beautiful little girl.

It was after dinner, and one of those rushed grocery store trips that was relatively last minute, but needed. We needed to stock up on fruit, milk, yogurt, cereal- the basics.

Monday, July 17, 2017

Why Breastfed Babies are at a Higher Risk for Iron Deficiency, & What to do About it

Mama's Organized Chaos: A Babywise Blog

This post originally appeared at on May 11, 2017.

When it comes to feeding your baby solid foods, there is one very important mineral to keep in mind- iron. Babies are actually born with a backup of iron stores. These iron stores supply iron to your little one for approximately the first 6 months of life, until they are depleted around that age. So, what does this mean exactly? It means you need to get iron into your baby so they don't get deficient.

The next question is if the baby is breastfed or formula fed.

Formula fed babies are getting the iron they need from the formula they are drinking. Most formulas are iron-fortified. This means you don't have to worry about iron deficiency as much (depending on how much formula you are feeding your baby).

Breastfed babies, on the other hand, do not get enough iron from breast milk. Breast milk actually contains very little iron. As a result, breast fed babies actually need some form of supplementation to get the iron that they need, otherwise they are at risk for being deficient. So, at 6 months of age, it is no longer safe to 100% breastfeed your baby. There has to be supplementation somewhere.

Most parents are thinking about starting solid foods somewhere between the age of 4-6 months, with the trend now being to start at 6 months. My only caution with this, is that many babies don't take to solid foods quickly, so if you are breastfeeding your baby and only start introducing solid foods at 6 months, there needs to be a quick turnaround on acceptance of the food, and a high focus on iron intake, in order to be sure your little one is getting enough. As with everything, every choice you make needs to consider everything that is right for your little one. The recommendation to start at 6 months is only part of the big picture to keep in mind.

The next question, is where do you focus in order to increase iron intake? 

Friday, July 14, 2017

Moms, Stop Apologizing

Mama's Organized Chaos: A Babywise Blog
Moms, Stop Apologizing

“Sorry for the lack of make-up and mom bun.”

“Please look past the mess on the floor.”

“Don’t mind the spit-up in my hair.”

“Sorry I have a sink full of dishes at the moment.”

“Excuse the toilet that hasn’t been scrubbed in a couple of days.”

Whether it’s a picture that is posted to social media, or a friend coming over to our house, women do nothing but apologize for being REAL. For not having all the time in the world. For being US. For being YOU. For being a MOM.

BFBN Week (Guest Post)- How To Teach Your Children Self-Control

Mama's Organized Chaos: A Babywise Blog

It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today we are hearing from Emily on "How To Teach Your Children Self-Control". This is one of my favorite techniques to use!

"When you begin to see those early signs that your kids are going to lose it physically or verbally, instruct them to fold their hands and work on getting some self-control. That is all you need to do. Teaching your child that self-control begins with the folding of her hands is a wonderfully concrete way for her to understand calmness. Her eyes focus on those peaceful hands lying still in her lap, and soon physical and verbal self-control is achieved."

Thursday, July 13, 2017

Trisomy 13- My Worst Fear That I HATE Admitting

Mama's Organized Chaos: A Babywise Blog

There are a lot of people following this journey with us, and I am so very thankful that everyone is allowing me to write what is in my heart without judgement. All of the responses on my FB page and on the blog have been supportive. I think most that read these posts realize that until you walk the path, you have no idea how you'd feel, and so there's been this outpouring of love and sympathy as a result. I so appreciate that. I appreciate being able to write a post like the one today, and feel secure that people will rally with me, not against me. These feelings are things that I truly hate admitting to myself, much less the entire world. But I'm terrified to feel this way partly because I feel so alone. So if this post reaches someone else that is feeling alone, then it is worth publishing. 

The option to carry to term is out there. I could meet April Rey. She might be alive and we could have a few moments together before she dies. I know we wouldn't take any life saving measures. We'd let her go peacefully if we decided on this option. I have a hard time leaning toward this option because of my worst fears, however.

First, there are the "what ifs" that we think of that make me WANT to carry to term and find out....

What if she is the miracle child with nothing wrong. What if she proved all these tests to be wrong and was a normal healthy baby? It's probably less than a one in a million chance, but what if...?

Then there are my WORST FEARS...

What if she is in pain?

And the one I hate to admit but it's there....

BFBN Week (Guest Post)- Temper Tantrums and the Happy Heart Rug

Mama's Organized Chaos: A Babywise Blog

It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today we are hearing from Carrie on "Temper Tantrums and the Happy Heart Rug".

"The book "Toddler Wise" specifically addresses Temper Tantrums in the "Toddler Topic Pool" chapter. It states that "how [a child] controls and expresses his emotions is far more important than the fact he merely controls or expresses himself...... A temper tantrum is a coping mechanism occurring because an individual has not learned how to correctly manage disappointment." This is so important to us because we believe that part of raising adults is teaching our kids that they are responsible for their own emotions and they have a choice and control over how they handle them. "

BFBN Week (Guest Post)- Self-Control is a Base Virtue

Mama's Organized Chaos: A Babywise Blog

It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today we are hearing from Cole on "Self-Control is a Base Virtue".

If there is one character trait that I think is most worth focusing on with little children (at least of the ages mine are), I believe it self-control. Self-control is the ability to manage and restrict the expression of one's emotions and desires, and it is most definitely NOT an attribute we are born possessing. It must be taught and practiced over and over, day in and day out.

Wednesday, July 12, 2017

Trisomy 13- Getting More Information & Our Plan Moving Forward

Mama's Organized Chaos: A Babywise Blog
With a full trisomy 13 diagnosis, and almost 100% of April Rey's cells representing the chromosomal abnormality, it seems like a straight forward diagnosis. And, for the most part it is. Trisomy 13 is a fatal condition that typically involves severe intellectual disabilities along with physical defects and most major organs impacted. It's devastating.

Many parents have NO idea that their child has this condition until they are born. It doesn't always show up on ultrasounds. And without any indication on an ultrasound, or any high risk factors being flagged, there's no reason to do DNA testing, or diagnostic tests like an amniocentesis.

We very well could have been in this situation. I am 33 years old, so not to the age of 35 where they start recommending additional testing. Our ultrasound images so far (at 15 weeks) look beautiful.

If you've been following this journey with us, you've heard why we were tested, but just a quick recap:

How to Give Instructions to Your Toddler & Achieve Successful Results

Mama's Organized Chaos: A Babywise Blog
It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today is my post on "How to Give Instructions to Your Toddler & Achieve Successful Results"...

It may be of surprise to many, but the Babywise theory by Gary Ezzo, is actually so much more than schedules and sleep recommendations. Not only that, the Babywise series has recommendations that extend into the teenage years! I haven't personally read the the older books yet, but I've read Babywise, Babywise II, PreToddlerwise, Toddlerwise, Preschoolwise, and Childwise. I am always amazed to see all that is packed into these books. From discipline to potty training, mealtime recommendations to family dynamics- the books really cover so much! 

I always find it interesting to see how well our parenting style really fits in with many aspects of these books. We'll come up with something to incorporate into our parenting, and then I'll re-read one of these books for more ideas, only to find that many of our favorite ideas are also recommendations in these books. I then read the section again, and find even more ways to expand on the idea that we've been incorporating already. Just goes to show that Babywise is a great fit for my family!

One of our favorite techniques with our daughter, is something we use when asking her to do something or giving instructions.

We require two things:

Tuesday, July 11, 2017

Trisomy 13- Why Would I Ever Consider Not Fighting the Fight?

Mama's Organized Chaos: A Babywise Blog
Before anyone reads this post, I want to make something very clear. I have no judgement of those that chose or are choosing to fight the fight. This post is no reflection on anyone else's decision or pathway. This post is just my raw emotions right now in the moment. It's indicative of our pathway- the one that's right for our family. Often tone and intent get lost in written words, so I just want to be clear that I have no ill intentions with this post, nor any judgement of parents that have fought the hard fight with their beautiful trisomy children. And I know that many will be turned off by this post, but I feel the need to post it. Why? Because it's real. It's my real thoughts, my real emotions, raw and uncut. And there are other moms out there that are feeling this way. I want them to know they are not alone. 

In my efforts to better understand trisomy 13 from the perspective of parents that have chosen to fight the fight and keep their little ones alive... I posed a question to a Facebook community of trisomy families.

My question was very specific...

BFBN Week (Guest Post)- 5 Ways to Teach Children Kindness

Mama's Organized Chaos: A Babywise Blog

It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today we are hearing from Caitlin on "5 Ways to Teach Children Kindness".

Chapter Four of On Becoming Childwise says 'We know you want to instill honesty, empathy, compassion, kindness, gentleness, respect, honor, and self-control in your children.  This is not a wish list from never-never land.  It is a reasonable goal for your children.  But they are not born with these virtues.  They're cultivated.  It is the duty of the parents to put character into their children and not sit back and hope good character emerges naturally.  It won't.'

BFBN Week (Guest Post)- Intentional Parenting: How Our Beliefs and Goals Shape Our Parenting Decisions

Mama's Organized Chaos: A Babywise Blog

It's Babywise Friendly Blog Network week! See below for our full schedule this week (8 AMAZING posts on Babywise series topics that are not schedule or sleep related). Today we are hearing from Kim on "Intentional Parenting: How Our Beliefs and Goals Shape Our Parenting Decisions".

Both goals and beliefs are important in raising our children.  Beliefs are our intrinsic values.  These are things like what we view as right or wrong.  What do we place importance on and give respect to?  Things like honesty, compassion, kindness- these are beliefs.  Goals are what we want to achieve.  These are results that come from action.  Do you want your child to go to a certain college or enter a certain profession?  Do you hope your child is a vegetarian?  These two ideas- beliefs and goals- do overlap a lot, especially in the big things we want for our kids.  I think it is safe to say most parents want to raise happy, successful adults.  These fall into both belief and goal categories, so we need to be looking at both as we parent."

Monday, July 10, 2017

Genetic Counselor Questions Asked and Answered

Mama's Organized Chaos: A Babywise Blog
Bright and early this morning, I called to make an appointment with the genetic counselor. I wanted to make sure we got in today, as we had questions upon questions just nagging at us. When the genetic counselor returned my phone call, I knew she'd be the right person to walk me through this. Her background is in molecular biology. She is a geneticist that is also a counselor (obvious from her title, but comforting to hear her expertise was the science part). I gave her a heads up as to everything I wanted to discuss in our meeting, and I told her I wanted it given to me straight. No sugar coating. I wanted everything upfront, and I wanted the data. I wanted the facts. I wanted the science.

We presented her with our questions, and she even brought out a science book and was showing us chromosomes. She did an excellent job and it was comforting to know the data.