It's just not like I thought it would be...

Before I had kids I thought a lot about what kind of mother I wanted to be. It's funny how different I am than what I planned.

These are just a few of the things that just aren't like I thought they would be...

What I Thought: My kids will be really healthy eaters. They will eat fresh fruits and veggies, very few processed foods, and low fat healthy snacks.

The Reality: Bwaaahhaaahahaha. I would feed them hot dogs and ice cream for every meal if they would eat it! Kool-Aid is better than water because it has more calories. And BUTTER! Butter on everything!

What I Thought: I will NOT have a picky kid. They will eat what I put on the table, and they will LIKE it. If they don't eat what I make, they will just have to wait until the next meal. I mean, it's not like they will STARVE.

The Reality: They are extremely picky and if they don't like what I serve them they throw it on the floor with a look of pure attitude! I offer as many as five different foods at a meal hoping that I will hit on something they might at least TRY.

What I Thought: MY kids will never throw a fit in the middle of the store!

The Reality: Pretty much every trip to Meijer ends with Holland tantruming because she wants to ride the horsie. We've gotten pretty good at calmly ignoring her. It's a bummer because I sometimes WANT to let her, but I can't because I know how it will end.

What I Thought: No bottles or pacis after age 2.

The Reality: As long as they are drinking them, I'll be giving them. Luckily Holland doesn't take a paci. Eden still uses hers, but on a really limited basis (only at bedtime, and not even every night). But if they wanted it, I'd still let them have it.

What I Thought: I'll never let my kids watch videos (especially Barney) for more than a half hour a day.

The Reality: How the heck else am I supposed to get anything done????

What I Thought: I will keep my house clean, and free of dust and dog hair that might aggravate allergies.

The Reality: IT'S NOT!!!

What I Thought: Kids today have too many toys. I won't buy toys for my kids.

The Reality: I can't resist. Every time I see something really cool that I think they will like, I HAVE to buy it. It's a obsession. I just love to see their faces when they get something new and intriguing. They play with their new toys, for a minute. The rest of the time they pick the oddest things to spend hours with.

What I Thought: I will not let having kids take over my life. I'll still be able to hang out with my friends and do all of the things that I did before.

The Reality: My world revolves around them. For better or worse.

It's just amazing how much motherhood changes you...

Clothes

Or not...Yay! Snow day! Well, actually it's not really a SNOW day, just a too-freezing-to-go-to-school day. Which means I don't have to go to work! You gotta love a free day that you weren't expecting. Apparently yesterday was a too-freezing-to-go-to-school day too, but since I don't usually work on Mondays, I didn't even know the schools were closed.

So, lucky for you (and me), I have some time to write a post while the girls are having their bottles and watching Barney.

In kind of an addendum to my last post, about having teeny tiny girls who won't eat, I thought I'd mention how hard it is to buy clothes for tall skinny kids. I was looking at some of the tags on their new clothes. Cherokee brand (Target) size 24 months is for kids between 33-35.5 inches, weighing 26.5 to 28 lbs. Old Navy brand, size 2T, is for kids 33-36 inches, 30-33 lbs!!! Now that's why I love an adjustable waist!

H and E have definitely outgrown their 6-9 month clothes, except for a few 9 mo onesies that run big. They have mostly outgrown their 12 months clothes, but pretty much only in length, and they are starting to get too long for some of their 18 month clothes. So, I have been buying 24 months, or 2T for summer and next winter.

The majority of their clothes are hand-me-downs from my sister Missy. My niece Claire is a year older than my girls, and is also a teeny tiny little thing. She was full term and is very healthy, but only weighs 26 pounds at 3 1/2. It works out great for us, cause as she is growing out of her clothes, we are growing into them! And my sister has great taste, so we get some REALLY cute clothes.

There is potentially a slight hitch in the hand-me-down situation that really bums me out. Missy just called me last week to ask if I could bring the 12 months clothes to my mom's. Her youngest daughter Kate is outgrowing the 6-9 month clothes! Uh oh. She's going to catch us! I guess that's what happens when your kid totally likes to eat. They go and grow.

I'm guessing by fall Kate will be in the same size as H and E, so we won't be able to get the hand-me-downs anymore. Also, my sister-in-law Sabrina is expecting a girl at the end of May. If this little one is anything like her big brother, she'll pass everyone up, including CLAIRE in a matter of months!

I promise not to complain TOO much, because I really LOVE shopping and buying clothes for my girls. I get to buy not just one cute girlie outfit, but two! It can be expensive though. That's why I buy all of their clothes at Old Navy, Children's Place, and Target. Preferably on clearance. Nothing makes me happier than a good deal on cute baby clothes (or should I say KID clothes?).

I went to the Kensington Valley outlet mall last week with my sister Kim. Children's Place was having a "50% off already reduced prices" sale. I was so excited. I stocked up on some adorable clothes for next winter at incredible prices. I got the girls 4 skirts, 6 tops, 4 pairs of pants, 2 denim jackets, 2 pairs of tights, and 4 pairs of PJ's for $100.00!!! Now that's a deal I just couldn't pass up!

Two and a Half Stats

I checked the girls' current stats at home, and plotted them on their growth charts. It's so weird for me that we had their last physical when they turned two, and don't have another one until they are three. How am I supposed to go a whole year without weight checks to make sure they are growing okay? I think I will send the pediatrician an email to see if he thinks we should come in earlier, or if he thinks I am just being neurotic.

Anyway, Holland's weight at 30 months (unadjusted) is 21 pounds 3 ounces. She is 33 inches tall, and her head circumference is 46.75cm. This puts her at the <0 percentile in weight, the 3rd percentile in height, and the 10-25th percentile for head circumference. Her length to weight ratio is at the <0 percentile.
Eden's weight is 19 pounds 2 ounces. She is 32 inches tall, with a head circumference of 48.5cm. Her weight is even further from the curve than Holland. Her length is hovering close to the 3rd percentile (maybe at the first), and her head is at the 50th percentile. Obviously, her length to weight ratio is also at the <0 percentile.

In other words, we don't seem to be getting anywhere fast. On the bright side, they are bigger than they were at two, and they ARE growing. On the not-so-bright side, they are impossible to feed, and although there are some good days, it isn't getting much better. Meal times take SOOOO long, and I feel like my life revolves around trying to get them to eat. It's excruciating. It really is.

The truth is that I start feeling like this (depressed and stressed out) every time I plot them on the stupid chart. At least when we are at the doctor's office he can talk some sense into me. He always stresses that he thinks they are fine, and he doesn't feel like their small size is something we should worry too much about right now.
In some ways I feel like I should get a second opinion. At the same time I am fairly certain if I go looking for someone to say Eden needs the g-tube, I will find them. But does she need it or not?

I think the pro of a g-tube would be that we wouldn't have to worry so much about how many calories we are getting into her. We could make up for anything she did not eat during the day at night while she is sleeping. We could load her up on calories and she might grow. The cons would be another surgery, the possibility that her reflux would worsen and cause problems with her wanting to eat, and her losing the ability to regulate when and what she wants to eat. I wonder if she felt full all the time if she would EVER eat.

I really don't know. I guess at this time, I still feel like the cons outweigh the pros, so I don't think I will go looking for someone to say she needs it just yet.

Other considerations I have to take into account...I looked at John and myself on the adult weight charts. For our heights, John is at the 5th percentile for weight, and I am at the 2-3rd. It just isn't very likely that we would have big kids under any circumstances. Also, Eden's PT pointed us to a growth chart for kids with CP. Eden is between the 10th and 50th percentiles on that chart (around the 30th). So, she has small parents, was born 16 weeks early weighing less than 1.5 pounds, and has CP. G-tube or no g-tube, she is always going to be little.

Maybe I should focus on the advantages to having tiny kids. They aren't as heavy...period. This alone makes it easier to care for Eden. It makes getting her in and out of the tub easier, carrying her, lifting her, moving her around, all of those things. The smaller she stays, the easier it will be to take care of her. And she won't have to worry about her weight when she gets older.

Of course, I'll still continue trying to force all the food and calories into skinny little Eden that I possibly can, in hopes that she will one day grow to a normal adult height and weight.

PT with 2-year-olds

We increased Eden's private PT (paid for through our medical insurance) to twice a week at the beginning of the year. Holland gets private PT once a week, and they both see the therapist from the school district once a week. That's five hours of PT a week between the two of them. Eden also has hearing impaired services (teacher consultant and speech and language pathologist) for an hour a week, so we have about 6 hours of therapy at home every week. That's a lot of work for a 2-year-old!

Eden has always been such a good worker. She never complained during therapy, and has always tried everything we have asked her to do. I guess those days are over. The older she gets, the more stubborn she is becoming! I guess it's a good thing, because she is just letting us all know what a "normal" little 2-year-old she is. She only wants to do what SHE wants to do. She yells and screeches, throws herself down, turns into a total limp noodle, or a stiff board, any time we try to get her to do something she doesn't want to do. It's getting harder and harder to get her to work at all.

At first, Eden's fits were so upsetting to me. I had a hard time not crying through therapy myself. The more it goes on, the more I am noticing that she is just being a total punk! I swear, she looks at me to help her, save her, but I can see the smile hidden beneath the snarl that we have become so familiar with. It's a half smile, barely noticeable beneath all the yelling and hitting and pushing us away. She is totally testing us. She will yell and yell and complain and complain, then turn into her beautiful angelic self as soon as you find an activity that she WANTS to do.

The problem has been compounded by the pony walker. We LOVE the pony walker, and Eden is zooming around the house now. She gets better and faster in it every day. Except now, that's all she wants to do. She wants to be upright, and she wants to be mobile. She does not want to do any of her floor work. She doesn't want to sit, and she certainly doesn't want to practice her military crawl. She doesn't even want to climb!

At the same time, she is getting better and stronger at these things. When we are not paying attention to her, I see her pulling herself along on the floor with her head up nice and tall. If I make a move over to help her or to encourage more, she starts yelling and (fake) crying at me. Argh. It can be really frustrating!!!

I've been repeatedly reassured by her PT that this is completely normal for her age. It happens to the best of them between the ages of 2 and 3 1/2. Pam says it will get better again in a year. A YEAR!

SO, like I've always said...Eden is very smart, very determined. She is strong-willed, and persistent. Her attention span and focus for a task is amazing.

OR, you can look at it this way...Eden is very STUBBORN. She is hard-headed, obstinate, and inflexible.

Whichever way you look at it, she is adorable. I love her spunk, and her persistency in making her needs known. Those traits are going to take her far in life. If we can just make it to 3 1/2!!!

***Okay, before anybody freaks out...the scissors were NOT my idea! Markers, fingerpaint, playdoh, and tea parties with shot glasses? I'll take the blame for those. The scissors belong to one of Eden's PTs. Of course, Eden thought they were GREAT, and threw a huge fit when it was time to do something else!

Micropreemie Blogs

When Holland and Eden were born I did a lot of research looking for other parents of micro preemies, and micro preemie stories. That was almost 2 1/2 years ago (oh my god I can't believe it). It was before the whole "blog" thing really took off, and I had never even HEARD of a blog. There was a lot of information about preemies out there, but not a lot of real life stories. I found a handful, but most of them were no longer being updated. The stories that we did find, especially the adorable and amazing Lucas and Austin, were very inspiring to us.

The biggest reason we started the blog was practicality. It was easier to keep our friends and family updated via the internet when we were spending every spare moment in the NICU. But I also thought it would be a nice way to meet other parents facing similar circumstances, as well as to offer hope, inspiration, and information to other parents out there wondering what they might expect as they began their journey.

I had no idea that "blogging" would have such a big impact on my life. I have met so many wonderful people that I now consider "friends" even though we only know one another in the cyber world. Halle Grace was one of our very first micropreemie friends after her mom found our blog and sent me an email. We had the chance to meet our micro preemie friend Kaitlyn in "real life" when we visited California last summer. I really can't imagine enduring this journey (the NICU stay, doctor appointments, feeding issues, delays, disabilities, and many many other issues we have faced) without the support of the other families we have met through our blog. In the midst of all the stress and fear and worry, it was at least helpful to feel a little less alone.

Since we began our journey, our list of micropreemie friends keeps growing and growing. As much as I want to, and would if I could, it has gotten hard for me to keep track of everyone! I don't want to leave anyone out.

So, I am creating this post as a blogroll of all of the micropreemie blogs out there, and am hoping it can serve as a directory for new parents looking for information and stories similar to their own. For this purpose, I will define "micropreemie" as any preemie weighing 2 pounds or less at birth, or preemies born before 26 weeks gestation.

If you have a blog about a micropreemie, please comment and tell us their name(s), your link, their birthday and gestational age, birth weight, length of NICU stay, significant NICU events, surgeries, and ongoing issues or complications if there are any.

And thank you to all of you who have supported my family and my girls over the years!!! I don't know how we would do it without you!

Amazing Children with Special Needs

In the beginning our blog was all about having micro preemie twins, the many issues that we faced in the NICU and since, related to extreme prematurity. Over the past two and a half years it has evolved, and has become more and more about raising children with special needs.

I've gone from constant googling of "micro preemie stories" to looking for children with profound hearing loss, cochlear implants, cerebral palsy, and other moderate to severe disabilities. In looking for others with similar circumstances I found Fiona, who is close in age to my girls and has a cochlear implant. More recently I have found Jack and Moo, adorable little boys diagnosed with CP, who are a bit older than Eden and slightly further along on the CP journey than us. I have also found Dream Mom and Mete, who I have found to be wonderfully kind, supportive, and insightful in their blogging about life as the parent of a child with severe disabilities. I gain my inspiration to be the best mom I can be from these women, and from other parents who have paved the road before me.

I'd like to use this post as a resource for parents out there looking for information and support in raising a child with a disability. If you are a parent raising a special needs child, please comment. Tell me your story, including your child's name, age, and type of disability, so that parents looking can find others dealing with similar issues.

I am also interested in hearing from adults living with disabilities, particularly those with cochlear implants, CP, or who use a wheelchair to get around. I am sure your stories will provide hope and guidance for me, in my quest to be a strong advocate for my daughters, as well as for them in having role models to look up to as they strive to find their places in the world.

Random Acts of Cuteness

Pony Walker!!!

This is one AMAZING little girl! We had such a good day of therapy. Today Eden got her pony walker. I have really been looking forward to it, ever since Pam, her PT, mentioned it to us before Christmas. Eden was showing lots of signs that she was ready to try it...bearing a tiny bit more weight on her legs more often, moving her legs like she is trying to walk when you help her, and saying the words "walk," "jump," and her most recent favorite "run." She's been really wanting to be upright, and to get around more, and has been crying and pitching a good 2-year-old fit when we put her down. So, I knew she was ready and I was really getting excited to try the walker.

I swear Eden knew what it was from the second she saw it. I said, "do you wanna walk?" and she got SO excited and started trying to get into it from my arms. Once in there, she grabbed the handles and started trying to walk right away. She did so good! She could move herself all the way across the room (about 10-12 feet) and probably could have gone further if we had more open space. She was SO happy.

She started playing a game with me, saying "bye, see ya" and I was supposed to go ahead of her so she couldn't see me. She would then walk until she could see me and would exclaim "HIIIEEE" with the hugest smile, then would immediately tell me "bye, see ya" again. She really thought she was BIG STUFF and would have done this for hours. She also liked turning the Christmas tree on and off, trying to buckle the belts in the high chairs, and opening and shutting the refridgerator door. We could tell that she was so proud and happy to be up and able to go where she wanted. It was a lot of fun and she didn't want to get out. In fact she cried and said "more... walk" repeatedly when we were done, even though we could tell she was getting tired. She was in there for like, 45 minutes, on her first time!

I know, both from our experiences so far, and from reading other blogs, that getting new equipment can sometimes be painful and emotional. Getting a new stander could mean that she will never stand on her own, getting a walker might mean she will never walk, and getting a power wheelchair might mean that she will never be able to get around on her own. I know these feelings, but today I am just happy for Eden because she is so happy and proud of herself.

On the other hand, I do feel some brief moments of sadness, just in knowing that she has been watching us, and Holland, for so long doing the things that she really wants to be doing herself. I hope this walker will help Eden do more of the things she wants to do independently. I will continue everyday in my pursuit of making her life as normal and happy and independent as I possibly can. Everyone knows she is doing her part!