Saturday, March 31, 2007

Seattle with the Girls

Billie, Jessie, Lisa, Amy, and Donna

Lisa, Billie, Amy, Donna, and Jessie

We drank a LOT of wine, talked, walked, shopped, ate, talked, and ate some more. It rained the first two days, but it wasn't too cold (except for Lisa, the Southern California girl), and didn't pour continuously. On the third day, the sun came out just in time for us to enjoy Pike Place Market, and the new Olympic Sculpture Park. The trees were flowering, and the city was grand. But the best part by far was the time spent with my friends. Love you guys!

Friday, March 30, 2007

Drama Queen

"Miss Holly is positively operatic in her tragic faces!"

"She does not do emotions by halves!"

I loved Sadie's comment on my last post. While browsing through some recent pics, I realized how true it is...

Wednesday, March 28, 2007

Days Like This

They are fewer and further between, but still once in a while, usually around feeding time, the depression and stress and PMS combine to create another meltdown moment.

I had one of those last week, the day before I left on my girls' trip to Seattle. It was a vacation that I sorely needed. I had a fabulous time, and missed my sweet, adorable girlies like crazy. I was so happy to come home, and they were equally glad to see me. Now they are sick, but I have pulled myself together, and am feeling much more able to handle it. Until the next time...

Thursday, March 22, 2007

Before I Go

Look Mom, no headband!

We have tried a few times to get Eden to wear her CI processor without the headband, but she won't have a thing to do with it. She automatically pulls it off and yells at us. Funny, she doesn't complain at all about wearing the headband. The only thing I don't like about the headband is that it is causing the front of her hair to break off. Oh well. The least of my worries really. But doesn't she look super cute without her headband???

This is Holland "laughing". I love how she covers her mouth and bends over. Makes me feel like the funniest person EVER!

Look at Eden pretending to play Playstation with Daddy. So cute. Mommy is TOTALLY not a video games person, so Daddy will have to teach his girls how to play. If he's lucky they'll take after him.

This is Holland talking to her little people. She LOVES the Little People, and knows all of their names. I love hearing her refer to "Sonya Lee" and "Farmer Jed." Lately she has been following us around the house with either Little People or a stuffed animal, saying "Maggie (or insert other character) talka Hanen." She wants us to make her toys talk to her. Constantly. It's mostly super cute, but can get old after the 100th time!

Eden LOVES ice cream. Especially from a cone. She also enjoys sharing, and holds her mouth WIDE OPEN with her tongue out to give Daddy a bite. Do you think she'd gain weight if we gave her ice cream every day? For every meal? Would that be healthy? Do we care? It has fat and calcium, right?

More Little People play. Holly plays really good by herself for about 5 minutes each day. The rest of the time she follows me around and wants me to play with her. Don't get me wrong, I LOVE to play, but I do enjoy that 5 minutes of peace.

There you go! I am leaving for my trip tomorrow morning, and will post again when I get back. In the meantime you should go to Ryn Tales and read this post. It is very thoughtful and well written, and touches on many of the topics I have been thinking about lately.

The issue of inclusion, and preschool, has come up as we approach the girls THIRD birthday, and I have a lot to say about my thoughts on the issue. I'll start working on a post on this topic when I get home from Seattle!

Finally, we still need a lot of help if we are going to reach our WalkAmerica goal! Please visit to make your donations in honor of Holland and Eden.

Saturday, March 17, 2007

Partied Out

St. Patty's Day Ramblings

Happy St. Patrick's Day!

The girls are dressed in the green garb, and ready for tonight's party. They're looking forward to meeting a couple of little girl friends, Shilo and Cecilia, who we haven't had a chance to meet before. Holland and Eden are always up for a good party. The more people, the better, in their eyes! They absolutely love playing with other kids.

I just got done writing out the bills. We are still paying through the nose for Holland and Eden's orthotics. You seriously wouldn't believe how much they cost. Holland's ONE orthotic is costing us over $600.00, and it doesn't even fit her anymore. We paid $100 for a pair of JumpStarts, and they work better for her anyway. Ugh. I can't believe how piss poor our orthotics coverage is.

On the bright side, I checked into our coverage for Durable Medical Equipment, and it is great. We are in the process of ordering Eden her very own Pony Walker, and it's going to be covered 100%. Pam, our PT, told us this week that she needs the borrowed Pony back. I started panicking because there is no way we can even go ONE day without it. Eden would be so upset.

Hmmmm... What else??? Oh, today Holland has already said "I don't want to" three times. What? Really? How old is she anyway?

I'm leaving for Seattle on Friday morning for our first annual Girl's Weekend. I am meeting four of my best ever junior high school girlfriends there. Jessie lives in Alaska, Lisa in LA, and Donna in exotic Lansing, MI. Amy lives about 6 miles from me and I don't see her as often as I'd like to either. I am very excited. These girls are my "hair posse" and I miss them like crazy all the time!

I am bummed that Lizzie can't go, but it's my fault cause I sent her all the info on email and she didn't get it on time. Now she has to work. Next year I will call, but you all know how much I HATE talking on the phone. I avoid it at all costs. Email is so much cooler, and you're much more likely to get a return email than a phone call:) Of course, don't tell that to all the people I haven't gotten around to returning their email lately. I am a terrible procrastinator at most things, but especially so when it involves making phone calls!

And finally, another shout out for support in our WalkAmerica efforts. Please visit our donation page at to make your contribution. Holland and Eden would not be here today if it weren't for the efforts of the March of Dimes, but more research is needed to help us understand the causes of prematurity, and to improve the quality of care that preemies in the NICU receive. Maybe future efforts and research will lead to a reduction in the life altering disabilities that so many premature infants face. I hope and believe that it will.

Monday, March 12, 2007

WalkAmerica 2007: Team Holland and Eden!

It's that time of year again!

We're gearing up for the big day once again, preparing to join the efforts of the March of Dimes to raise awareness about prematurity, and to raise money to fund research targeted at preventing prematurity, and lessening the negative impact that it has on so many lives.

We were overwhelmed by the generosity of others across the country, and internationally, who supported our efforts last year. We set our initial goal at $1,000, and were able to MORE THAN DOUBLE it to raise $2,613.00 in honor of Holland and Eden. I'd love to be able to raise even more this year.

We will be walking on Saturday, April 28, 9:00am at Hines Park in Westland, MI. We had an incredible team of about 30 walkers last year, and would love to have you all back, as well as anyone else who wants to join us.

Please visit our WalkAmerica site at to donate in honor of Holland and Eden, to sign up as a walker for our team, or just to monitor how much money we have raised.

Thank you in advance for your support in helping us reach our goal!

And gosh, can you believe how much they have grown and changed in the last year???

Sunday, March 11, 2007

It's all fun and games...

...until your sister steals your toy!

Happy 31st Birthday Daddy! Hope you enjoyed your night out and getting to sleep ALL DAY today. We love you.

Thursday, March 08, 2007

Growing Up So Fast

The girls are learning new things every day. Every time they do something really cute, I think that I should blog about it, but then I forget! Their babyhood is almost gone, and I am afraid that I will forget all of the really sweet moments that we are having at this stage.

Holland is especially growing up fast. I swear, within just a few days she wakes up a whole different child! She has recently climbed (fell) out of her crib for the first time. She has also peed once in the potty (for my mom), and has pooped in the potty once. I didn't even notice when she pooped in the potty the first time. She told us she needed to go, and we put her on the potty. She kept standing up and didn't really want to sit. I kept encouraging her to sit back down and try to go potty. Finally she stood up and shut the lid to the potty, so I put her diaper back on and she promptly pooped in it. I didn't think any more of it until the next day when the bathroom was smelly and I couldn't figure out why. I lifted the lid on the potty and looked in to see a little poop right there in the bottom! She had gone and I hadn't realized it. I felt bad that we didn't get to have a poo-poo party! I did congratulate her, but of course by then she had no idea what I was talking about. There is definitely some interest in using the potty, and I think we'll be able to master it over the summer.

Holland's language development is just amazing lately. She is stringing sentence together better all the time. And it's not just that she has a great ever-expanding vocabulary and an awesome memory, but that she seems to really GET it. She understands so many concepts, and can listen and follow multi-step directions really well.

She loves to help, and will go get something from the other room and bring it back to me or to Eden. She can sometimes be really sweet to her sister (when she's not crying or yelling at her), and will pick something up that Eden has dropped and give it back to her. The conversation goes like this: "Here you go Eden, thank you Hanen, you're welcome Eden." She has started talking for Eden a little bit, when she wants her to say a certain thing.

I walked into her bedroom a couple of weeks ago to get her, and she exclaimed "polka-dot pj's mama, cute!" What a nice way to wake up. She's also so sweet at saying please, thank you, and excuse me. It's the best to hear her always saying "thank you mama" and "excuse me Eden."

Yesterday I was picking them up from my parent's house and I called her into the living room to get her coat on. She yelled from the other room "wait a minute!" perfectly clearly. It was so funny.

She also has this really goofy fake laugh right now. She covers her mouth and bends over and says "hahaha, mama funny." She's telling us all the time when she thinks something is "funny." So cute.

In some ways it is nice that we get to enjoy Eden's baby-ness a little longer. But she is becoming a big girl now too, in her own way. She put three words together for me for the first time the other day. She was in her highchair and ready to get down. She said "all done, up, walker" with the sign for each word. I was so impressed!

She makes up her own signs for the things she wants, to help us understand. For a long time we couldn't distinguish between "wa" for water or drink, and "wa" for walker, so she made up her own signs. An index finger in her mouth means she wants a drink, and she waggles two fingers like they are walking to mean walker. Now we can understand the words "drink" and "walker" but she still uses her signs at the same time. Really adorable.

Eden is currently obsessed with Blue's Clues. She can spot a paw print a mile away, and gets SOOOO excited. She points and exclaims "cooo cooo" (means "a clue, a clue"). If she sees Blue she puts both hands up by her face and opens and shuts them, and says "boo, coo." Her favorite game in the world is for us to hide the "clues" that we cut out of paper plates and colored paw prints on. She will look for her clues all day, and gets SO EXCITED when she finds them. She will run across the room in her pony walker to get the clues. We spend hours doing this. Hiding clues works great during PT, because Eden will basically do anything to find a clue. Hilarious.

Eden's voice is slowly getting louder, her articulation better, and her expressive and receptive vocabulary are growing. But we're still pretty much the only people who can understand her. She has quite the odds stacked against her when it comes to volume control with her voice. With 30 days on mechanical ventilation after she was born, a PDA ligation that may have damaged her vocal chords, a severe hearing impairment, and low (no) tone in her trunk due to the CP, she has a lot of obstacles to overcome. Even as a tiny baby her cries were little more than squeaks and hisses, and her voice is very very soft and quiet.

To work on volume was have practiced "calling." We "call" daddy, zippo, mommy, nana, and Holland, but Eden's favorite is daddy. She puts her hands up around her mouth and calls as loud as she can "daaaa, daaaa." It's the quietest yell you'll ever hear, but getting louder all the time. As her "calling" has improved, we see her voice getting louder and her articulation improving. She is also getting more two syllable words, and attempts to say more words on demand. Some recent favorite words (of ours) are "thank you" and "sesame street."

Eden LOVES LOVES LOVES her walker. She asks for it all the time, and wants to spend all of her time in there. I love that she lately wants to hold my hand and walk with me when she is walking. I can't wait until summer and we can stroll down the sidewalk together. Wait, I take that back. I can wait.

Monday, March 05, 2007

Pondering the Future

It's my curse. I am a planner. My brain is always thinking ahead. I constantly ponder the future. I envy people (like my husband) who are able to live so fully in the moment.

You can see, with my planning problem, how having premature children has really turned my world upside down. And having children with disabilities even more so.

Life is just not as predictable as I want it to be. I experience a lot of anxiety about this. I try to plan, and I want to plan, but I am terrified of the future. I worry so much about all of the "what ifs". What if Eden never walks? What if other children tease her? What if she doesn't feel like her life is worth it? What if I get cancer and die? What if John gets in a car accident on the way home from work? It goes on and on.

Before having the girls, I was oblivious to all of the bad things that could happen to me or my family. I was young, and felt invincible. Maybe because nothing really horribly bad had ever happened to me.

Not that having premature twins with disabilities is so horribly bad. I understand it's a matter of perspective. There are certainly many, many people in the world who may see my life as a complete cake walk. It absolutely is, when you look at how life has turned out for many other people. It could be worse.

That's exactly the problem. I know now, more than ever, that it could be worse.

When the girls were first born, I started to do some research about micropreemies and outcomes, but it was much too difficult to face, so I stopped. I decided early on that I would focus on the positive and hope for the best. I shied away from preemie stories where the outcome was less than perfect. Instead I focused on the few stories I could find where extreme preemies were seemingly beating all the odds. Thinking back now, was this the best approach to take? For me, I think it was the only approach to take, although there have been times that I think I should have prepared myself better for the possible far-less-than-perfect outcomes. But how can you? When you are in the trenches, all the negativity out there could bury you.

I find myself at a place now where I am getting back into the research. Why now? Because I am once again looking toward the future and beginning to think about whether or not we will have more children. I know it's still early, because if (big IF) we do decide to try it again, it won't be for a least another year. But this time my preparations for any future pregnancy would be so extremely different than last time. There are big, heavy questions that I am forced to ask myself that were not even within my realm of thinking before.

What if I get pregnant with twins again? What if they are born before 26 weeks? These are overwhelming, inherently hard questions under any circumstances (although most people never think of them), but made even more difficult by our situation. The girls are only 2 1/2. We've got some major life obstacles to overcome already, and have no idea what other hurdles may be ahead of us. The research shows that we still have the increased risk of significant learning disabilities and mental health issues to look forward to once the girls hit school age.

We also have no idea why H and E were born so early, and no idea what the risks are for me to attempt another pregnancy. These are questions I will explore over the next year. I could make a list of pros and cons, and I bet the cons side would be much longer. But, the pros side would be much heavier. Because in my heart of hearts, I long to have another baby.