"Meeting" Other Preemie Families

Sadly, premature births are not uncommon. And I have the pleasure of meeting other preemie moms in real life rather frequently. Happily, these are often moms of babies born between 33 and 36 weeks... not quite the same scenario as my 24 week early arrival!

One of the great joys of writing this blog is that I get to "meet" other preemie parents, all of whom have their own unique stories and journeys.

Yesterday was a day that really brought that connection to the foreground...

Kristie McNealy talked about how prematurity affected her family...

Phoebe recalled her first child's sudden and dramatic entry into the world too soon...

The Murray Crew mama of quads- FOUR preemies!- and I reminisced about shooting commercials for two (rival *wink*) Indianapolis children's hospitals...

Chic Crafty Chick shared about her miracle baby... her unending faith and a doctor's stubborn doubt.

Heather writes about her experience giving birth far too early with her first child. (Happily, her second was born full-term just two weeks after my third!)

I could go on and on about the inspirational stories that I've had the pleasure of reading.

Yesterday was Prematurity Awareness Day and I urged you all to educate and empower yourselves.

I, for one, am committed to working for and supporting preemies every single day. This beautiful online community has helped introduce me to others with the same determination, faith, and perseverance.

That works for me.

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This post is linked to Works For Me Wednesday, hosted at We Are THAT Family.

A Reason To Fight

It's hard for me to imagine that any of my readers haven't already read my birth story. On the off-chance that you haven't, you can find it in my side-bar or click here.

For the rest of you, you already know that a large part of what I blog about and a large part of who I am is tied up in my second child, who was born almost four months early and weighed in at 1 lb 5 oz. My little girl's story is one of great triumph, but not without a world of worry and challenges.

No one knows the reason I went into labor at only 23 weeks gestation. No one could ever find a single cause for C's prematurity. I was blessed to have a full-term birth prior to that one and even more blessed to have had one since. But my life will forever be changed and touched by the premature baby I brought into the world...

Today I'm joining forces with close to 400 other bloggers* to Fight for Preemies. Won't you please take just a couple minutes and visit the March of Dimes website? There is a wealth of information there... from what causes premature birth to statistical rates to how your state ranks to how you can help.

Today, November 17, bloggers unite to Fight for Preemies. Won't you join us?

(In an ironic twist, today is also my sister's- a preemie herself!- birthday... Happy Birthday, JB!)

*Update- happily the number of bloggers uniting to Fight for Preemies has soared well beyond 400 now.

Right Where She Needs To Be

C. sings for her class at their Halloween Party last Friday (that head full of hair belongs to her brother)

I'm inwardly celebrating a little bit today.

It's a big day for us.

And, by us, I mean my former-micropreemie-now-three-year-old daughter C. and me.

Today she is attending her very first "friend" birthday party. She thinks she's very big stuff. She probably thinks that's what's making her mama smile too.

It's not.

I'm celebrating because, the other day as I watched her preschool class enjoy their Halloween party, her teacher leaned over and told me,

"You know I've been doing testing for her upcoming review and I have to tell you- there are no cognitive goals for me to write anymore. She's just exactly where she's supposed to be!"

Praise God. And huge thanks to all the teachers and therapists who've helped her get so far.

I'm feeling mighty grateful.

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This post is linked to Gratituesday, hosted at Heavenly Homemakers.

Speaking Up For Those Who Can't

(Image from Allposters.com)

Honestly? I don't make a lot of waves. Sure, I'm a feisty and opinionated lady. No doubt about it; just ask my husband or family. But, that being said, I don't often speak up loudly and clearly about too many controversial or political issues. I'm pretty comfortable just living in my own world with my own ideas and beliefs.

There are a couple of exceptions. One, of course, is my determination to speak up about prematurity awareness. That is evident throughout this entire blog. It is a mission and a labor of love for me and I don't see myself ever tiring of it. I know how little I really knew about it and I know how little support I could find for parents of the very earliest preemies. It's critical to me to get more information out there.

The other cause I'm not afraid to voice my opinion about is abortion or, rather, my opposition to it. I've been very clear on that stance here before. I shared some of my concerns on Inauguration Day. I went on to go into more detail about the Freedom of Choice Act and what it could mean a few days later.

Trying to change the minds of all the pro-choice Americans around me doesn't work for me. That would be a daunting task and, I firmly believe, a futile effort. While I truly believe in my heart of hearts that abortion is murder, simply carrying a placard that reads those words is not how I choose to convey my message.

Instead, I just want to educate. I want people to truly KNOW what a second trimester fetus looks like so they don't have some misguided notion that we're talking about a blob of cells. I want people to realize what exactly is involved in a partial-birth abortion... because the name sounds pretty innocuous compared to the reality of the procedure. I want mothers and fathers to realize that there are millions of people who support taking away your right to know about your minor daughter's decision to abort. And I want to help dispel the idea that abortion is "good" for women-- that it is freeing, empowering, and essential to our equality. Making men be accountable for their role in creating life is how we establish equality... not by killing the one and only innocent party involved.

Speaking up for those who can't yet speak for themselves... that Works for Me.

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For more Works For Me Wednesday, visit Rocks in My Dryer.

How Much Do You Know About FOCA?

The Freedom of Choice Act (FOCA) has been around for a number of years. It's becoming a hot topic again because we now have a president who has openly, vocally, and frequently supported abortion rights.

I've said it before and I will say it again: I am unapologetically pro-life. I don't get into a whole lot of politics on this blog, but my pro-life stance is intricately linked with the topic of this site. While I certainly described myself as pro-life before my daughter was born, it was upon learning that some people thought it should have been MY right to terminate her at the point she came into this world that I became more radically pro-life. If you've read my birth story or seen the pictures of her in the early days, then you know she was, inarguably, a baby. No one can tell me otherwise...

FOCA would lead to changes in current abortion law. Changes that could easily result in many more abortions being performed. Here are some things you should be aware of:

1. FOCA could force taxpayers to pay for abortions. (By requiring they be covered by Medicaid, for one.)
2. FOCA requires all states to allow "partial birth" and other late-term abortions. (If you don't know what is involved in a partial birth abortion, please go here. If you want an "impartial" article about it, check out this one.)
3. FOCA strips parents of their right to be involved in their minor daughter's abortion decision.
4. FOCA seeks to eliminate informed consent laws.

As a pro-life woman, I'll openly admit that a lot of the research I do happens at pro-life sites. But, to be fair and informed, I went to NARAL Pro-Choice America to read up on this act as well. While the verbiage is different, the content is exactly the same. It was actually at the NARAL website that I was drawn to a triumphant headline announcing, "Obama restates his commitment to abortion rights". Less than 24 hours ago, on the 36th anniversary of the Roe v Wade landmark decision, our president spoke out:

On this anniversary, we must also recommit ourselves more broadly to ensuring that our daughters have the same rights and opportunities as our sons: the chance to attain a world-class education; to have fulfilling careers in any industry; to be treated fairly and paid equally for their work and to have no limits on their dreams," Obama said. "That is what I want for women everywhere."

It is this type of speech that has many pro-lifers like me worried that FOCA will be reintroduced in the 111th Congress sometime soon.

I don't want to see this bill pass. There's a part of me that thinks, "How could it? How could enough people really support these ideas?" But, in reality, it could. Too many people buy into the idea that abortions make life better for women. And it's best that we be aware of that and take what action we can.

I receive a weekly publication called The Catholic Moment. It should come as no surprise that this paper has a strong pro-life slant to it. Enclosed in yesterday's edition were postcards to send to our senators and representatives. You can bet mine will be in the mail today. You can find out more about this campaign here. If you'd like to make your voice heard as well, feel free to send a postcard or letter to your state senators and local representative with the following message:

"Dear Senator (Representative),

At this time of serious national challenges, Americans should unite to serve the good of all, born and unborn. The Freedom of Choice Act (FOCA), the most radical and divisive pro-abortion bill ever introduced in Congress, would create a "fundamental right" to abortion that government could not limit but would have to support. FOCA would overturn many existing widely-supportd policies, including laws protecting parental involvement and conscience rights and those preventing partial-birth abortion and taxpayer funding of abortion.

Please oppose FOCA or any similar measure, and retain laws against federal funding and promotion of abortion. As your constituent, I would appreciate a written response telling me how you would vote on these matters.

Respectfully,

(Name and address)"

Just as it was my duty, privilege, and right to vote, it is my responsibility to make my voice heard when it is this important to me.

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What are your feelings about FOCA? Will anyone be joining me in the postcard campaign? Do you have other ideas for making your voice heard? I'd love to hear about it in the comments...

Early Intervention

This morning I will meet with our First Steps coordinator for the last time. We have a "case closing meeting" and it's a great milestone!

First Steps is the name of our Early Intervention program here in Indiana. Different states use different names ("Birth to Three" seems to be common), but it's all the same idea. It is a program designed to ensure that children between the ages of 0 and 3 receive any therapy interventions they may need to help them succeed and reach their highest potential.

My little C. turns 3 on Christmas Eve and, as a result, she will be receiving her therapies (speech and occupational therapy) through the school system from here on out. I've already met her new therapists and they're lovely. I'm excited about this next step. But I'll be forever grateful to First Steps.

Early Intervention worked for us in so many ways.

First of all, it was so helpful to have a team of experts come out and evaluate our child and let us know how she was doing. So much more relevant than trying to compare her to charts in those "What to Expect..." books. We were given a summary that broke everything down so we could see very specific skills that would be emerging soon and areas where she could use a little help.

Secondly, once a plan was in place, our therapists came to our home. Since I had given birth to two babies in less than a year, this was a huge help to me. I didn't have to schlep two babies, an oxygen tank, an apnea monitor, and feeding gear all over the place.

Thirdly, because we were already involved with First Steps, our transition into the school system was simple. All of C's paperwork and history was forwarded on, saving us a lot of extra work. Her new therapists have comprehensive reports about her abilities and progress to help them structure a plan that will help her continue to develop and succeed.

I want to encourage other moms of little ones (preemie or not) to educate yourselves about your state's program. Know that you can contact them if you have any concerns. Some things that worried me (like my son not walking until he was 15 months old) turned out to be nothing needing intervention. Some things I may have just written off as an annoyance (my daughter's persistent tongue thrust when we tried to feed her solids) ended up being resolved after a few sessions with an OT. It never hurts to ask.

Here are just a few more reminders to help make the road as smooth as possible:

• Keep your contacts straight- The first person you'll need to get in touch with will have a title like "Intake Coordinator". Then you'll be assigned a "Service Plan Coordinator". There will be an evaluation team. There will be therapists. Make sure you know who you should call with questions.
• Know your rights- I want to be very clear here. I am NOT advocating that you be a demanding, bossy, law-quoting parent. I, personally, do not think that's the greatest way to go about things. But read your packet of information. And don't be afraid to speak up. I made it very clear, in a very polite way, that I wasn't interested in my child working with a "developmental therapist" in place of an occupational therapist (Dev Ther are more plentiful and cheaper to hire in our area). Our First Steps team was very receptive to my reasons and helped me secure an OT within a few weeks.
• Be there when you say you will- Keep your appointments. With the Early Intervention staff and with the therapists. If you can't be there, be sure and call just as soon as you can. This is just common courtesy.
• Try to be your therapists' "partner"- Early Intervention therapists can just as easily meet with your child in a daycare setting as at your home. But if you can be there, that's fabulous. Pay attention. Ask questions. See if your therapist has recommendations for games, activities, or toys that will help expand the skill-set he or she is currently working on.
• And, finally, don't forget these important people at the holidays- I'm not saying you have to buy an expensive gift. You could make an ornament with your child. Bake some yummy cookies. Buy some pretty soaps. Whatever. But, honestly, my kids see their therapists more often than their local aunts, uncles, and cousins. They're a big part of their lives! My son still gets excited when he sees the penguin ornament on our tree given to him by one of our therapists. It's a really meaningful relationship for them. Honor that.

I learned about it after our little girl was born four months early. But, for all children, I would say knowing about Early Intervention Works for Me!

What's Your State's Grade?

Today is Prematurity Awareness Day, in case you didn't know! Pretty much every day is "prematurity awareness day" around here, but, still, it's a great time to talk about some things...

The March of Dimes graded each state based on the overall prematurity rate as it compares to the nation's objective goal of 7.6%. My state got an "F". How about yours? As a country, we averaged a "D". Ouch.

Check it out here.

While you're there, consider signing the Petition for Preemies!

Choosing a Great Preschool

I think there are so many factors to consider when it comes to educating our children. What's right for one family will certainly not be a perfect fit for another. As family units, our priorities, histories, and preferences vary dramatically at times. It should come as no surprise that a group of great parents will choose different paths for their kids.

For us, there were a few factors that needed to be in place:

1. The program had to be play-based: We believe this is how our children learn and grow. Our 2- and 3-year olds would not thrive in a classroom where they sat at desks all day and practiced tracing letters. They, do, however build imagination and motor skills as they play dress-up and explore a sensory table.
2. There needed to be enough, but not too many, kids: There are ten children in the 2-year old class and thirteen in the threes. There are two teachers for each class. I want to make sure that my children are adequately supervised. I also want them to have plenty of peers. And guess what? You know one reason I think preschool serves a role that a play-date cannot? My kids need to learn to interact with individuals who are not their buddies. They need to learn problem-solving, negotiation, and compromise skills... and not just with their best friend down the block. Social development is a critical skill that we use throughout our entire lives. We don't take that lightly.
   
3. The preschool needed to be affiliated with the public school system: Why? Because this is how my children are able to receive any needed therapies. As C. turns three and ages out of early intervention, the school system takes over. By sending her to a preschool affiliated with our school system, we allow her to receive her therapies as part of her daily routine. Additionally, preschools with therapy services on-site are often developmentally based and that fits our philosophy perfectly.

A few things that didn't matter?

1. A religious component: I would not have a problem with Christianity being woven into my children's education. But it's not a reason I'd choose a school. Guiding them through faith is MY job. And my responsibility. The lessons they need in this area should come, I think, from our family and our church.
2. Proximity: I drive 17 miles each way to that school. When C. turns three, she'll qualify for school-provided busing. But, until then, it's a hike. I'd much rather drive than settle for an inferior program.
3. Status: There's something to be said for enrolling in a preschool with an excellent reputation. But I refuse to be part of a status game. I've heard of parents paying well over a thousand dollars a month for preschool (although I often ask myself if this is truly school or just fancy-pants childcare???).... to me, that is borderline crazy. We each make our own choices, but- to me- I would never (and could never) pay that kind of money just to say, "My child attends Super Awesome Brilliant Kid Academy."

Is there a perfect solution? Of course not. I would encourage you to make a list of your own priorities if this is a decision you'll be facing soon. Successful children can come out of all sorts of educational frameworks. My only definite recommendation is that, regardless of what avenue you choose, you notify your public school system if you have any reason to suspect a delay (in speech, fine motor, gross motor, cognitive development, etc.) Your school system will guide you through the process of evaluation. If, in fact, your child could benefit from therapy, they'll help you know your rights- whether you choose a public school, private school, or to home-school.

Good luck!

For more great tips, check out Works for Me Wednesday, hosted at Rocks in My Dryer!

For another chance to win a Basket of Indulgence, be sure to check out this post. Thanks!

Redefining Normal

I think that most of us, from the moment we find out we're expecting our first child, start thinking of goals and milestones...

At first, these milestones apply to us, the moms, and where we "should" be at in a pregnancy-- how we should be feeling, how big we should be getting, how early we should feel movement. There is this ridiculous part of human nature that tries to make everything, even bringing life into this world, a competition. I remember feeling like a failure when I didn't feel movement until AFTER my five month ultrasound...

Once the baby arrives, the focus is all about that bundle of joy. And the charts and comparisons begin. There are dozens of books and hundreds of articles all designed to tell us what's "normal". All established to provide us with a benchmark by which we can measure our own children's achievements ( or lack thereof).

Maybe it's just me, but I did not find this helpful. Never in my life did one of these books bring me comfort or joy. Instead, they caused unnecessary worry. They caused me to lose hundreds of hours of sleep over my son who didn't speak until he was almost three... and now, at nearly four, can count to 20 in five languages. And read. Chapters. We went from profoundly delayed to incredibly advanced.

And you know what?

He's the same kid. The. Same. Kid. Loving and snuggly and my biggest fan. The very most important, fundamental things about him never changed. Am I happy to hear his voice (finally)? Of course. Do I think it's wise to always be aware of what's "typical" so you can get help as needed? Absolutely.

But I think perhaps it's time we also consider redefining "normal". It's time we stop feeling like failures for not following the "book chart" month by month. By the same token, we should not feel triumphant just because we "met" that guideline. Rejoice with your children in all their discoveries and achievements. Be aware of situations where early intervention is appropriate.

And, above all, love that unique, wonderful gift who will forever be so much better than just... normal.

Speak up!

Here is a lesson that I believe is important for just about any parent, but I can about guarantee it's vital for a preemie parent-- speak up. Learn to ask lots of questions. Take notes if you need to. Do not assume that medical staff will remember and/or have record of every little detail about your child.

Here's a recent example of just what I'm talking about:

Yesterday, we took our former micro-preemie (now 2 1/2 yrs old!) to the hospital for eye surgery. We went to the same hospital where she stayed in the NICU. We were there for 3 1/2 months at the time. We've been back a LOT. We've been featured on the news for this hospital. We filmed a COMMERCIAL for this hospital. Suffice it to say, they know who we are.

Nonetheless, when the anesthesiogolist popped his head in her pre-op room, he was armed with Versed, a medication used often in children to create a kind of "amnesia" so the process of surgery is less traumatic. This is standard procedure. In most cases, it's a wise way to go-- it eliminates separation anxiety and reduces fear for these children. However, Mommy knew better in this case...

Way back in the day, when she was just itty-bitty, C had to have laser eye surgery. She was given Versed (by the same opthamologist's team) and had a reaction. By "reaction", I don't mean she got nauseous. I don't mean she had irritation. I mean she went into respiratory distress and had to be put back on a breathing machine. Yikes.

And so I spoke up. I retold the story and listened patiently to the anesthesiologist tell me why he felt such a reaction was unlikely to happen again. He may well be right. I didn't want to take the chance. I know my child. I know how tough she is. I asked that he attempt to put her to sleep without it-- I assured him that she separates well and can tolerate a LOT without "freaking out". He agreed to try it.

Five minutes later, her nurse popped her head back into the room, smiled, and said, "She went to sleep beautifully. Dr. N has already started the procedure."

No Versed needed.

You know your child. You love your child. You NEED to advocate. No one will judge you for making educated requests. Keep it polite, keep it informed, but speak on up! You have my support and prayers...