Sunday, December 30, 2007

Different

I've been thinking, pondering, wondering... How do I teach Eden that she is just like everyone else? That her disability does not define her? That she can do whatever she wants, based on her strengths? That everyone has strengths and weaknesses?

How do I teach others that she is a "normal" kid? That she should be treated the same as everyone else? That she loves all the same things that the other kids like? That she wants to play too?

Then it hit me...

She is NOT like everyone else.

If I fail to recognize and accept her differences...if I fail to recognize and embrace her many strengths, I am failing her.

She is different.

Just like everyone else.

Saturday, December 29, 2007

It's a Wrap!

Tuesday, December 25, 2007

Merry, Merry Christmas...

...from our families to yours!!!

Mommy's side cousins: Claire, Marion, Holland, Jenna, Malachi, Kate, Mitchell, Evelyn, Eden, and Matthew!


Daddy's side cousins: Cody, Holland, Briana, Eden, Justin, and Connor!

Sunday, December 23, 2007

A Spoonful of Sugar...

...yeah right.

We are having a heck of a time getting Holland to take all of the medication she is on right now. As far as the cold goes, she is getting better. Still some stuffiness, and occasional wheezing, but mostly better. But she is still on an antibiotic for an ear infection, and the oral steroid Prednisolone for the lung/breathing issues, in addition to her usual Zyrtec and Singulair.

The steroid tastes like CRAP, and she HATES taking it. I know how bad it is because I tasted it. It is such a sad, dramatic battle, that I can hardly stand it. She has to take it twice a day for 4 days, but she's already thrown it completely up twice, so we'll probably have to redose those. It sucks. It's a nightmare trying to get her to take it, then she gags and retches, and ends up throwing up. She cries so hard, puts her hands up over her face, and throws her head back. We try to hold her down and she thrashes all around. We've tried to keep our cool, and bribe her with everything in the book. Nothing is working.

In addition to that, side effects of the medication include irritability, mood swings, and difficulty sleeping. Well, we've got that. To the total extreme.

Any advice? At least a little empathy? Anything? Please...Help...

She's making me crazy.


On a happier note...Holland and Eden both got gifts from their secret Santas. They both LOVE them SO much. A great big THANK YOU to Brooke and Nathan (and their moms!). It was REALLY fun to get presents in the mail, and both girls received gifts that were perfectly suited for them:) We greatly appreciate your thoughtfulness and kindness. Merry Christmas!

Saturday, December 22, 2007

An Early Gift


My little Eden made me so happy and proud today!

We've had a demo powerchair at our house for the past month. It is the same chair, the Koala, that we decided on and are in the process of ordering for Eden. The problem, up until today, was that Eden REFUSED to even sit in it. Holland loves sitting in it, and would drive it around the house and make it go up and down, but even after watching Holland, Eden said "NO WAY" when we asked if she wanted a turn. Every time we tried to push the issue she would cling to me like a little monkey and start crying. If I tried to get her in the seat, she would stiffen like a board, and a couple of times even held her breath until she turned blue. We had kind of backed off, and even decided to give the chair back for a while until she seemed a little more ready.

Holland took a little trip around the house today, and when we asked Eden if she wanted a turn she said "okay, my turn!" We put her in, and away she went!!!! After about 10 trips around the house, John asked her if she was done, and she said "NO WAY!" She probably took 20 trips around, and was very happy the whole time. Then later in the day she took another turn to show off for some of the family. When she was done she said, "that was fun!" It was SOOOOOO awesome and exciting! She totally gets it, and was very happy with her newfound independence. Now we just have to teach her how to steer before our walls are completely destroyed:)



She also spent some time playing the piano in her chair. I love the lift function, because at the lowest height she is eye-level with Holland, but the chair can lift up to reach the piano or a dining room table. Awesome. I can't wait until we get hers. It's going to be a while still...at least 6 months.

Friday, December 21, 2007

Bad Timing???



The girls are both sick. I can't decide if the timing is terrible or great. It has made it really difficult to get ready for the holidays, but at least Santa won't have to visit us in the hospital. Yesterday was a bad day for Holland, but today seems better. I took her in to the doctor's office. Yesterday she was satting 91 when we got there, but came up to 94 after 2 treatments. Today when I took her for a recheck she was at 94. So, it looks like we are on the upswing and should be better in time for the big day:)

Sunday, December 16, 2007

Snow Angels




I can't remember being this excited about a snowstorm before! Finally, Holland got her wish. Alas, it just isn't good packing snow, so no snowman today. I'm hoping as it warms up over the next couple of days we'll have more luck with that:)

The first big snowfall of winter is just one of those things that is so much more fun when you have little people to share it with!

Monday, December 10, 2007

Thursday, December 06, 2007

3-Year-Olds Continued...

So, I kinda summed up the current state of eating and growing at our house in the last post. Incidentally, today was an excellent eating day, and that always puts me in a happy mood:)


What I've really been wanting to do is to write about some of the really cute and funny things they are doing and saying lately. I love this age, despite all the bickering and whining that sometimes goes on. It seems like the are learning so much so fast, and the next thing you know I will blink my eyes and they will be teenagers. There's so much that I don't want to forget!

I'll start with a few Holland stories. Holland is pretty much talking in complete sentences, asking and answering questions, and following multi-step directions. Well, at least when she actually listens... She adds words to her vocabulary EVERY day, and amazes us with some of the things she comes up with.

I started putting the xmas tree up while Holland was napping. When she woke up and came downstairs she got really excited and said "OOOOHHHHH, it's Christmas!!!" The next day she saw the tree after I had gotten the lights on it. She said, "Wow Mom, you finished it! Can I touch it?" I said "sure, you can touch it." Then she said, "no, I'm not going to touch it...it has germs on it." When she saw the stockings hanging from the mantle she said "Wow Mom, that looks beautiful!"

Every time she looks out the window and sees snow, she says "It's snowing! Can we go sledding? Can we make a snowman?" Nevermind that the snow isn't actually sticking to the ground yet! When she hears a Christmas song on the radio that uses the word holly, she says "Me Mom? Me?" I'll say "Yes you!" And she says "they're singing about ME!"

Many times lately when I ask her to do something she responds, "I can't now. I too busy." The other day I asked her to come down in the family room so I could get her shoes on, and she said "I'm never ever coming down there." "Never ever?" "Nope, never ever."

The first thing she said when I walked in to get her up in the morning after last Thursday when I was sickly ill, was "MOM, you're HAPPY!" I couldn't convince her that the reason I was in bed the day before was NOT because I wasn't happy. She's also still very big on informing us when she is sad. "I'm SOOO SAD." We hear this A LOT! She's also very great about saying "I'm sorry." Sometimes she says it at the wrong times though, like she falls then tells me "I'm sorry Mom." I don't know why she feels the need to apologize all the time. She clearly doesn't get this from me;)


Holland is also thinking a lot of things are "scary" lately. We hear "I'm scared" almost as much as "I'm sad." She is very afraid of the previews to her DVDs especially the Disney ones. I've tried analyzing this fear, and what I can gather is that she does not like the music/noise or the announcers voice that comes on with the digital Disney DVD. I think it surprised her once, so now she thinks it is coming every time the screen turns dark. She either hides, or makes us hug her during the previews of any Disney movie. She'll hide her eyes with certain parts of other movies, but once the video is on, she is okay.

Holland also LOVES dogs, and loves to BE a dog. She also want ME to be a "mommy dog." All. day. long. Every stuffed toy needs to have a mommy and a baby. She pretends to be a baby, and wants me to be the mommy. She says "mommy." I say "baby." Then I get big hugs. Gotta love that. Until about the 200th time, but that's okay.

Eden's language is really coming along now too, but is clearly delayed both expressively and receptively. I'm not sure how much of the delay is due to not hearing for the first year, having CP, a combination of the two, or something else entirely. Even so, I am very encouraged with the progress we are seeing lately, and I think if we can continue to be patient with her she will continue to amaze us all.

She is a total parrot lately, and repeats everything her sister says. Having Holland there as a model, as well as a motivator has been extremely helpful with Eden's speech development. Eden has had a couple of her own breakthroughs just this past week that I am very excited about. First, she has started alerting us when her cochlear implant is not working!!!! Yippee!!! I have waited 2 years for this! Just this past weekend when I was feeding her a meal in her booster chair, I noticed that her magnet would come off when she turned her head. She repeatedly reached up and touched the coil, then looked at me and pointed to her cheek. Now, we have taught her to point to her ear when she hears something outside of the room, and to say "I hear it." She does this ALL the time now, when she hears something interesting like a siren or an airplane, or a dog barking, but instead of her ear she points to her cheek. So her pointing to her cheek when her magnet comes off is her way of saying "I can't hear it!" She did it in school on Monday when it had shut off, and let me know that I needed to fix it. It almost made me cry! I am so glad that she will be able to let her teachers know when she can't hear when she actually starts going to school without me. I was envisioning her at school unable to hear, and never telling anyone. We'll keep working on it until she gets really good at it, so I don't have that worry!


The other really cool thing that she started doing lately is saying and signing diaper change after she poops. Historically she would sit in a wet or poopy diaper all day and never make a peep if I wasn't on top of it. I wondered how it would ever be possible to potty train her if she didn't even care if she had a dirty diaper! In just a week she is consistently telling me when she needs a diaper change, and at least 3 or 4 times has told me BEFORE she actually pooped! We've had her sitting on the potty when she asks, but so far nothing in that department. But I think it will happen...someday. Maybe it will happen for Eden before Holland. You never know. After experiencing some early success with using the potty, Holland has decided that she really is not interested anymore. The only times she asks to go "poop in the potty" are when we are sitting down for dinner at a restaurant, or when it is time for bed. Of course, neither time does she actually need to go:)

The other thing Eden has gotten really good at lately is saying "no way." Why is "no way" SOOOO much more annoying than just "no." And why not "no thanks?" Why "no way?" I don't know where she got that, except for maybe her sister.

I love how Eden says "Hi Guys!" when she enters a room, or when she is playing with her little characters. I also love when she covers her mouth to laugh and says when she thinks something is "funny." I love when she wears the fleece Cinderella shirt, that she has to keep the hood on all day long, and says "uh-oh" over and over if it falls off. I love that she calls us "mommy" and "daddy" now instead of always mama and dada. I love that the past few days she says "santa ho, ho, ho" when she sees a santa, and repeats it over and over if you laugh cause she loves to be funny.

They are both so cool, and funny, and smart, and loving. There are still plenty of challenges, but when I step back and look at the bigger picture, we are mostly pretty lucky, and I have so much to be thankful for.

Monday, December 03, 2007

Three Years

Don't you just hate it when your life gets in the way of your blogging??? Let me just tell you that this has been a crazy, hectic couple of weeks at our house. I can't believe it's already DECEMBER! I guess that means it's not going to get any more relaxed around here until after the holidays.


The girls had their 3-year NICU graduation/due-date birthday on November 17th, and I've been meaning to do a post about what they are like as 3-year-olds. I haven't gotten around to it yet because we've been weathering some sickness. The girls had colds just before Thanksgiving. Holland had it first, with worse cold symptoms, then Eden caught it and didn't eat for a week which is totally just as bad. When Eden gets a cold we always notice an increase in her reflux, more vomiting, and a major breakdown in any progress we thought we had made in her eating. To say it sucks would be a complete understatement. I cannot believe how stressed out we (John, me, my mom) get when she stops eating. Every time I tell myself repeatedly that it is temporary, but I still freak out. It's no help to anyone and we need a better game plan. She really does bounce back pretty well once she feels better, but during this time of year when it's one thing after another we sometimes don't even get a chance to bounce back!

This past Thursday I woke up at 4am with a NASTY stomach bug that lasted about 12 hours. We were so terrified that the girls would catch it, so my awesome husband stayed home and quarantined me to the bedroom. He took the girls downstairs and kept them fed and entertained the entire day, then sanitized the entire house after they went to bed. He also brought me each meal according to the BRAT diet, and didn't get upset when I could only eat a few bites. So far, the girls haven't shown any signs of catching it. Maybe the quarantine worked.

So, what ARE the girls like as three-year-olds? I'll start with Holland, who will always be my baby A. And, of course, I'll start with eating and growing, since that what we spend the vast majority of our days focused on...

Holland is eating pretty well now and has gained over three pounds in the past 4 months. She FINALLY hit the chart for her real age around the 3rd percentile at 25 1/2 pounds. She is just about at the 25th percentile for height at 36 inches. So, she may still be skinny for her height, but I am perfectly happy with those numbers, especially considering her genetics, history, and the way she is eating lately.

Holland LOVES spaghetti, and it is hands down her favorite meal. She gets the high calorie version with ground beef in the sauce, butter, parmesean, and spritzed with olive oil. We eat it at least once a week. With leftovers, she probably has it at least three times a week. Spaghetti, and Ramen Noodles, are probably the only things that Holland will actually feed mostly herself. Oh, and broccoli. Most meals she starts feeding herself, but after a few bites loses interest and we have to take over. She still eats in front of a DVD, and we feed her the vast majority, but she almost always eats without a fuss and actually enjoys it. Three pounds in four months proves it!

Eden has also gained some weight in the past 4 months...about 2 1/2 pounds actually, putting her at 22 pounds. She is not close to the chart for her age, and I truly wonder if that is even a realistic goal. On the CP Growth Chart she is about the 20th percentile for weight, and above the 50th for length at 35.25 inches.

It's hard to talk about how Eden's eating is going, because it can vary so much from one day to the next! Today was a good day. On a Good Day Eden can seriously pack away some food. I am not kidding. Some days you might wonder where she even puts all the food she eats. She will eat everything offered to her for an entire day and we might even stop offering her food because we're afraid she might make herself ill. Then, the next day, she might not eat a thing.

I think the Prevacid Solutabs might be a wonder drug for Eden, as we saw a real significant improvement in her eating in first couple of months after we started it. I only regret that it took us 3 years to try it. I'm also beginning to think we might need an increase on the dose. In addition to the Prevacid, we started the Periactin, and the jury is still out on whether that works for her as well. It's hard to tell because the times we've stopped using is just happened to correspond with a sickness, so I don't know if she stopped eating because she was sick, or because we stopped the Periactin. We're going to renew the prescription another month and see what happens.

Eden's favorite meal is fajitas from Chili's. She LOVES her some Mexican food, just like her mama. She eats the fajita chicken with sour cream, shredded cheese, and especially avocado and guacamole. We've started buying bulk in avocados and she eats at least a few slices every day. In fact, she likes it so much that it works great as dessert after she eats something else. You know, after you can't get her to eat another bite...you just bust out with the avocado.


Don't get too excited about Eden's eating though. I don't. We still have some really rotten days when she WON'T eat a thing and we go crazy worrying about what could be wrong. I am noticing that bad days almost always correspond to an increase in the reflux, which almost always corresponds to a sickness or teething, even if it's not immediately apparent. Luckily she and Holland both JUST cut their very last tooth, so we don't have that worry anymore. Eden's was her last two-year (haha) molar on the top left, and Holland's was that second tooth from center on the top right that I had pretty much resigned myself to thinking must not be there.

I have lots more 3-year-old blog fodder running through my mind, but I am out of time for tonight, so I'll try again later in the week. I have so many cute stories and funny-things-they-say to tell you about! Will post again soon:)

Sunday, December 02, 2007

Silly Faces


Don't you love that one little thing you can actually get them to do on command??? They crack themselves up. Us too, of course:)

Sunday, November 25, 2007

Grieving

Tertia has asked me to write a post about my experience with grief. My perspective is unique in that I have not actually experienced a loss in the form of death. But this acknowledgment, that what I am feeling is grief, is precisely why I appreciate her thinking to include me. It was, and is, the first step for me in learning to cope with my emotions. The acknowledgment that it is normal and okay for me to grieve, even though my girls have survived. The loss that I have experienced is very deep and very real, though difficult to put into words.

It is the loss of ideals. The loss of having the pregnancy, birth, and brilliant, beautiful, "perfect" children that I dreamed of all my life. I think that every parent of an extremely premature infant deals with grief over the loss of their chance at a normal pregnancy, without the heartache of the NICU and the struggles that continue once you get home. I am sure that every parent of a child with a disability also deals with grief over the loss of the child they had imagined.

Time helps to lessen the grief. I can only imagine that once a preemie begins to walk and talk, and begins to appear more on track developmentally, the grief over the NICU experience lessens. But when your preemie survives with more significant disabilities, you have a constant reminder of your grief. After three years, there is not a single day that goes by when I do not think about their prematurity. Not a single day goes by that I am not reminded of their disabilities.

But it is getting better. The days spent crying, and not wanting to wake up in the morning, are definitely fewer and further between. The joy of having them in my life, and seeing them happy and thriving, is slowly drowning out the sorrow.

But still, there are bad days. Days when the big questions loom in my thoughts. What would Eden be like now if she hadn't been a preemie? What would THEY be like? How would my life be different? Is it my fault? These questions are so hard for me. They arouse such sorrow and heaviness and guilt. My hands tremble as I type them, and I wonder if I should really put them into words.

I am reminded of these questions at random times. Like when I am struggling to get Eden out of the bathtub, all wet wriggling 22 pounds of her, and I think "how will I do this when she is 18 and weighs 90 pounds?" Or when I am carrying her into the restaurant, and she spies Holland walking and squeals and literally tries to leap from my arms to get down and walk with her. Or when, for the third, or tenth time that day, I watch her looking on as the other kids run and jump and play, with such longing in her eyes. Waiting, and often demanding, for someone to get her and help her to join in the fun. When I am tired, and my body aches, as I crawl with her through the tunnel for the umpteenth time, or hold her on the monkey bars, or push her around on the firetruck, because...well, because she wants to and I don't want to hold her back because of my own limitations.

Having a child with a disability can be very isolating. I think grief in any form is probably isolating. Part of it is because other people don't know the right thing to say. Another part of it is because I don't know the right thing to say. I don't want to monopolize every conversation by talking about myself and my kids, but it's difficult to make small talk when such huge thoughts are looming in my mind. It's like the elephant in the room.

I've struggled to find a balance, and for me this blog, and my online support groups have been vital. This is where I can "let it all hang out." Where I can laugh, and cry, and share, and vent, and brag until I am blue in the face without feeling like I am burdening anyone. It allows me to get my feelings out, to let everyone know how I am feeling, without putting us in an awkward situation. It also allows people to reflect on what I have said, and to respond in a more supportive and thoughtful way.

I am lucky to have many awesome and amazing family and friends who are generally thoughtful and supportive people. People are all different, and not everyone is comfortable providing emotional support during stressful times. I try to be respectful of this and I definitely don't hold it against people when they say the "wrong" thing. I'm not sure there is really a "right" thing to say that will work equally well in all situations. I do know that it is important to let the person who is grieving set the tone. I hate to give a list of things NOT to say, because many people reading have said these things to me, and I honestly take them as they are intended and do not hold them against anyone. I know when your heart is in the right place, and I appreciate the effort.

That said, it isn't particularly helpful to hear things like "everything happens for a reason," "God doesn't give us more than we can handle," or "it could be worse," when you are in pain. Things like "at least she's cute," and "they never should have been saved in the first place," are even worse. "You are a stronger person than me" or "I could never do what you are doing" are also difficult to hear, because trust me, I would have said the same thing to someone else in my place three years ago.

But gosh, with so many things NOT to say, what CAN you say? You can say that our children are beautiful, that you think we are doing a wonderful job, that you recognize the blood, sweat, and tears we have put in to get where we are. You can listen to me, laugh with me, rejoice in their progress with me. I don't want your pity, but I will take your empathy. When I am down, and looking for a shoulder to cry on, you can cry with me.

Cecily, Snickollet, Alida, Vanessa, and Tertia are all doing posts about grief, and reading their posts will offer different perspectives on the topic. Linda, Sarah, and Liz have also taught me a lot about how to support and provide comfort to someone who is grieving. Thank you all for putting your thoughts and feelings into words. It means so much to many people who are looking for someone who understands.

Monday, November 19, 2007

Fashion Show Pics

Sorry, the pics aren't great, but you get the idea... I don't usually post pics of other people on my blog, but since Allison and Shannon both have their own blogs, I think they are fair game:)

Set One: "A Family Affair"

My Family



Allison's Family


Shannon's Family


Set Three: "Holiday Celebration"

Friday, November 16, 2007

Fashion Show Speech

My pregnancy seemed to be a pretty normal one. John and I had been married for 6 years, and were elated at the idea of adding a baby to our family. We planned the pregnancy, and put a great deal of thought and research into the type of birth we wanted to have. I received prenatal care from a well-respected midwifery practice, had regular check-ups, ate all the right things, avoided caffeine and alcohol and second-hand smoke, and basked in the glow of my pregnancy. I loved my growing belly, and felt overwhelming joy every time I felt the baby move.

It wasn’t until almost 24 weeks into the pregnancy that my world came crashing down. I began feeling poorly, and started to wonder if the pain I was feeling could possibly be contractions. Just after arriving to the hospital, with absolutely no idea of what was to come, I received two of the biggest shocks of my life. First, I found out I was having TWINS! Second, I was in labor and already dilated to 4cm.

Holland and Eden were born four days later on July 31st, 2004, 16 weeks too soon. At birth they weighed 1 pound 3 ounces, and 1 pound 5 ounces, and were just under 12 inches long. They were perfectly formed, and to me, already beautiful. There was no infection, no abnormalities, and never an explanation for why they came so early.

We were told prior to their birth that the chance they would both survive was slim, and that IF they did survive, it would likely be with some degree of disability. Looking back now, I don’t think that this information ever really sank in. We knew from the beginning that we desperately wanted them, and that we would love them whatever the outcome would be.

Prematurity is not something you can plan for. It is something that you gloss over when you are reading “What to Expect when you are Expecting.” You think that it won’t happen to you, that it CAN’T happen to you. When it does, it is just pure luck that lands you in such a place as the NICU at St. Joe’s. Our girls spent the first 110 days of their lives in the NICU. During that time we certainly had some very long and very sad days. Both girls were transferred out for PDA ligation surgery on their hearts. They both underwent laser surgery on their eyes for retinopathy of prematurity. We lived through more than one infection, one which Holland almost didn’t survive. Both had some degree of bleeding in the brain. Both needed a lot of coaxing to learn to eat and grow. Many people refer to the NICU course of a 24-weeker as a roller coaster. I don’t like that analogy because we choose to go on roller-coasters and we enjoy the thrill. There are no thrills in the lows of the NICU… just grief and devastation.

But our time in the NICU was also filled with small moments of happiness, and even times of great joy, many of which were made possible and enhanced by the staff who worked with our babies. I clearly remember the nurse who asked if I wanted to hold each baby for the first time, and how much work they would do to get us ready for kangaroo care. I remember the care with which they taught us how to touch our babies, how to change their tiny diapers, how to take their temperatures. I remember a special nurse who would take pictures of them doing cute things at night, when we weren’t able to be there, and taping them to the isolette to surprise us when we came in the next day. I remember the excitement of our rescue team who came to another hospital to pick Eden up after one of her surgeries, and how happy they were to have her back safe and sound. I remember the doctors giving hugs and high fives when Holland’s platelets finally went back up following a nasty infection. I remember, when things were slow in the NICU and our babies were doing well, doctors sitting with us to chat about good places to eat. I remember them listening to our endless questions, and sitting down with us to draw diagrams to help us understand complicated medical issues, never annoyed by our incessant attention to detail. I remember the nurse who helped us give their first baths, and dressed them in real clothes for the first time. I remember the support and encouragement they gave me in pumping and attempting to breastfeed, and how they kept me motivated by always oohing and aawing over the calorie content of my milk. I remember them crying with me over the loss of another NICU baby that we had befriended, and how I realized then that these babies are so much more than a job to this NICU staff. They really and truly care about each baby and family, and they make each tough medical decision just as they would if it were their own baby. I remember that I felt loved…and I don’t think you can feel like that in the NICU of every hospital.

Holland and Eden are three-year-olds now. They are vibrant, loving, and smart, and they are the joy of my life. Our struggles did not end when we left the NICU. We went home on oxygen, and monitors, and with countless doctor appointments for the first 6 months. Holland has had ongoing issues with her lungs and her vision. She has had surgery on her eyes, and has been hospitalized several times with pneumonia and respiratory illnesses. She has been diagnosed with mild cerebral palsy, and did not start walking until after she was two.

Eden was diagnosed with profound bilateral hearing loss at 6 months of age, and underwent a cochlear implant surgery when she was 14 months old. She has more severe cerebral palsy, and will likely never walk independently. Both girls have had ongoing issues with eating and growing, and feeding them has always been a source of worry and stress.

While I feel like it is important for the general public to be aware of the ongoing issues that extremely premature infants face, I really hate listing their disabilities or medical issues when describing them. Terms like “chronic lung disease,” or “profound hearing loss,” or “cerebral palsy” do not give you any insight into the little people that they are becoming. Those things are such a very small part of who they are. I’d rather tell you about how Eden’s smile lights up a room. About how they both say “I love you Mommy” and give the absolute BEST hugs and kisses. About how their excitement over the simplest things is completely contagious. About how they love to play ring around the rosie, feed our dog way too many milkbones, and each hold one of my hands while we walk around the living room pretending were going on an adventure. They love to dig in the sand, run full speed through the sprinklers at the water park, sing along to their Elmo videos, and think we are the absolute best parents ever for taking them to meet Clifford the Big Red Dog.

I am not a person who believes that everything happens for a reason. Sometimes bad things just happen. What I DO believe, is that when bad things happen, we can become better people because of them. We can learn and grow from them. We can take the negativity and turn it into something positive. I am a better person because of my kids and what have gone through following their traumatic birth. I do not take life for granted. I don’t sweat the small stuff. I have learned to appreciate every step of progress they make, no matter how small it may seem. I am better able to support people who are going through similar circumstances. I am more compassionate, and a better advocate for my children’s needs than I may have been otherwise.

I addition to all of that, I have had the opportunity to meet so many incredible people that I would never have known otherwise, and my life is richer because of them. Thank you so much to the NICU staff of Saint Joseph Mercy Hospital. For the dedication and compassion you show to the babies and families you care for. And for giving us so much to be thankful for.

Tuesday, November 13, 2007

Top Ten Best Things About Having a Micropreemie


10. Not as much baby weight to lose.

9. You get to take full advantage of your medical benefits.

8. You don't have to worry about cooking. They won't eat it anyway!

7. They are not as heavy, therefore easier to carry around.

6. They can wear their clothes a whole lot longer.

5. Very competent babysitting for the first 3-4 months (maybe more).

4. You don't sweat the small stuff.

3. You don't take life for granted.

2. You have the opportunity to meet so many amazing people, doctors, nurses, therapists, families, friends, and bloggers who go above and beyond to help you, support you, and give you a shoulder to cry on.

1. This...

Happy Homecoming Day Edie!

On this day, exactly three years ago, Eden came home with us for the very first time. We spent the next four nights awake, staring at her while she slept. Then Holland came home, and we didn't sleep for the next five months.

Happy homecoming day Edie. Thanks for making our home such a happy place to be!

WalkAmerica Awards!!!

Tonight we attended our second annual March of Dimes WalkAmerica awards. Last year they were held at Comerica Park, and we got to watch a Tiger's game. This year they were held at the newly opened MGM Grand Hotel and Casino in Detroit, so we got to blow a whole $5 on absolutely nothing in less than 30 seconds.

Last year I received an award for being the #7 individual walker for our region. This year I got an award for being the #2 individual walker, and another award for being the top family team at our walk site!!!!!!!!! Pretty cool, huh? I need to find out how much the #1 walker raised, so I know where to set our goal this spring;)

It's such a small world too... Right when we got there I spotted a girl (woman? lady? chick? I never know what to say there...I'll stick with girl because that's what I would prefer myself) that John and I went to high school with. She was there with her husband, who also went to our high school, and their 4-year-old twin girls, Sydney and Olivia, who are former 25 weekers. Her girls were so cute and really reminded us of H and E. They made us miss our girls and wish that we had brought them with us...well, kinda. On the other hand, a night out sans kids was pretty nice too.

Thursday, November 08, 2007

Stepping Out...

...out of my comfort zone, that is.

Sorry I haven't been keeping up with my blogging lately. I am swamped beyond swamped with things to do. We are in the last stages of preparing for this year's NICU fashion show. I am only doing a small fraction of the work, but boy does it feel like a lot. I put together three awesome slide shows for the event, and I am busy writing my speech. I am going to tell our family story this year, in front of a crowd of more than 300. Holey moley. That really is out of my comfort zone.

I am NOT a public speaker. I am actually quite shy in groups until I feel comfortable and get to know the people.

I want to do it though. I am hoping it will be a great experience for me to really break through my fear. I was an absolute wreck in college when I had to do public speaking or presentations to the class. I would get SO nervous I could hardly speak. But this is different. I am going to be talking about my kids, and about our experience. It's the one thing I am an expert in. Obviously I know my subject matter!

I was actually feeling pretty okay about it until this week when I was writing the speech. I had to stop and cry with every paragraph. I wonder if there is any possible way that I will even be able to get through it. I don't mind some tears, or showing emotion. I just don't want to have a complete breakdown and not be able to speak. I hope I can do it. I think if I go through it several times, maybe it will be easier when the actual time comes. Or maybe I need a couple of glasses of wine??? Are there any good pills I could take???

The fashion show is next Thursday at 6 in Ann Arbor. I have tickets available to sell if anyone out there is interested in coming. If you haven't let me know already, just send me an email and I'll give you the details. I took 20 tickets to sell, thinking it would be a piece of cake. I mean, who doesn't want to hear me talk? Or see me in my holiday evening wear? Or watch my two adorable daughters ham it up on the stage? On top of ALL THAT, it's for a good cause. The best cause, actually. The ticket money will be used to support the best NICU in the world...the one that saved my babies' lives!






Wednesday, October 31, 2007

Happy Halloween!

I really cannot believe that this is Holland and Eden's FOURTH Halloween! But it is, the pictures prove it:) Happy Halloween, and Happy Two-Years-Hearing Day to Eden!