Take the Chickies Bowling

We took the girls bowling today and had a lot of fun. I had the idea that Eden could bowl in her stander, and John noticed some kids bowling with one of these ramps when he went with work. We called ahead, and found out that the ramps were available at the alley near our house, and they have nonsmoking open bowling every day for a few hours! It worked out GREAT! Eden was the perfect height in her stander to reach the ball on the ramp, and her stander fit right up to it. It was a total win! Eden bowled an 87, and Holland a 105. They both bowled over my average:)

We try really hard to find ways that Eden can participate in everything we do. It requires a lot of planning ahead, but is usually possible with some adaptations and a lot of work. Tomorrow we are taking the girls swimming. I have to think about it... I know we can go and take turns holding her, but she tries to get down the whole time and will wear us out. It will be much more fun and a lot easier when we get her headfloat. I was thinking of waiting until spring, but if she enjoys herself tomorrow maybe we'll make the investment sooner. There's a place nearby where they will make her a custom one for her tiny self.

Speaking of tiny...Eden has been a real pill lately about eating. For the past two or three days she is giving us a really hard time, and has eaten next to nothing. Last night she threw up her lunch and the little bit of bottle she had drank, and wouldn't take another drink. She went to bed on a totally empty stomach. It is so sad and stressful. She is so skinny that she feels like she will break when you pick her up. You can feel every bone in her body. We're doing our best to remain calm about it, and just do the best we can without forcing the issue. I'm not exactly sure what is going on, cause she had been doing so well. I know that she is teething...again, and I think that has a lot to do with it. She doesn't drool at all, so I think she swallows all that extra saliva and it makes her tummy feel full and upset. She has been chewing on her fingers constantly and burping and refluxing a lot more than usual. Same thing has happened every time she gets new teeth, and we worry every time. And every time the worrying just doesn't do any good. Shouldn't I know this by now??? But still I worry.

Eden's Obsession

Eden loves to wash. She washes her hands, the sink, cups, spoons, bowls, and anything else she can get her hands on. She asks to "wash" about 50 times a day. She has so much fun playing in the water, but it gets kinda hard to hold her, so I rigged up a great system where she can kneel and do some PT at the same time she is washing! She and Holland were at the sink for about a half hour the other day and had great fun. I got some great shots, but I think this may be my new all time favorite pic.

Santa Spent Too Much Money!

Holland and Eden slept in this morning until 10:00! I have to enjoy it now, because by next year they will probably be up at the crack of dawn to see what Santa brought.

Santa really did take it easy this year, and didn't buy TOO many gifts. Mostly because he knew that Holland and Eden would be so spoiled by their family (which they were), and because they are still too young to really comprehend the whole Santa and Presents thing. Even so, Santa still spent too much money.

Holland opened her gifts and picked out two little pieces of her Playdoh set to carry around the rest of the morning. Eden first opened a matchbox airplane from her stocking, then didn't want to put it down to open more gifts. The second thing she opened was a tube of three little plastic Sesame Street characters. Her airplane went flying, she grabbed Elmo and Zoe, and refused to put them down the rest of the time! Holland had to open all her presents for her, and Eden wasn't the least bit interested. She sure loves Elmo and Zoe though. Woulda cost Santa about $3!

At my mom's house this afternoon Holland and Eden opened the Little People Farm. Holland was SO excited and said "open...farm...out...farm...open it" and Mommy couldn't resist, so I opened it. She and Eden both started playing and didn't want to open any more presents! They would have been perfectly content if that had been all they got!

I think it might be a good idea to save some of their presents in the box, and get them out one at a time over a couple of months. That was we can extend the play time, and get more mileage out of some of their toys. I find that the toys I keep put away, and only bring out once in a while, are enjoyed a lot more than those they have available all the time.

We had a WONDERFUL Christmas this year. It's so fun for me to see my girls growing up loving their grandparents, aunts, uncles, and cousins. We are so lucky to have two big, kind, loving, loud, crazy families to spend the holidays with. I love them all so very much!

Christmas Eve

Glasses

I am hesitant to put this post at the top, because I just love the pic of Eden standing so much I could leave it there forever and look at it all day long. But, Holly is awfully cute in her new pink glasses. She looks so grown up and studious. We took her to pick them up at nap time (bad idea), but we could tell when she first put them on that she knew something was different. Once we got home and really got to try them out she was pretty good at keeping them on. I suspect it will take a couple of days, and then she won't want to take them off:)

Standing

Speaking of Eden doing things everyday to make me cry...

Eden was so excited about standing by the couch. She has never been able to bear any weight on her legs, but we are very SLOWLY starting to see some progress. She worked so hard with Daddy for over 15 minutes practicing holding her weight, and readjusting the position of her feet to balance herself. She was holding herself up by the couch for a couple of seconds at a time and was so proud of herself. She didn't want to stop! In fact, when we had to stop she kept signing "more, more."

It's the little things, that people with "normal" kids take for granted...

Hustle and Bustle

Whew...Christmas time is so busy! We have one party after another from now until after the New Year. Saturday we had my mom's family party at my sister Kim's house. Tonight we had my niece Jenna's birthday at my sister Missy's. Friday night we have my dad's family at my cousin Jill's house. Sunday during the day we are having John's parents and siblings and our nieces and nephews over to our house, then later in the evening we will go to my Grandma's. On Christmas day we will spend the morning here with the girls opening their gifts from Santa, then we will head over to my mom's for brunch and will stay for dinner.

John is taking the week after xmas off, so we will be able to recoup for a few days, then we are having people over our house on New Year's Eve to ring in the new year. It's such a BUSY time of year, but I am totally not complaining. I love the holidays! I love decorating, shopping, buying presents for my family, and most of all, I love spending time with the people I love. I am a total sucker for family traditions, and I look forward to introducing my favorite traditions to my girls, as well as developing some of our own.

Unfortunately, I have been so busy that I'm afraid I have neglected to answer some emails and to return some phone calls. I've gotten more than one message this week from friends worrying about me because I haven't called them back. So, if you have sent me a recent email, or have left me a message, you might have to cut me some slack. Actually, if you really want a response, you might have to leave another message, cause I've totally forgotten who I need to call and my emails are so backlogged I might never get to them!!!

Along with all the hustle and bustle of the holidays, we continue with our usual schedule of therapy and doctor appointments. Holland and Eden have PT twice a week at home (once through Early On and once with a private PT). We're thinking of increasing Eden's private therapy to twice a week beginning in Jan. Eden also gets once a week services from our county hearing impaired program, alternating between a teacher consultant and a speech and language pathologist.

Eden has recently been making tons of progress with her communication skills, picking up several words and signs each week. In fact, I have to mention (even though I know she is reading this), that she made her speech therapist cry this past week with her perfect little vocalized "more" accompanied by the sign. The truth is that she has her mom (and her Nana) in tears almost daily with the cute, smart little things she does. She is getting so good at initiating communication and using words or signs to tell us what she wants. For example, this week at my mom's she crawled all the way across the room, raised her arms to me and said "up, up, up." I picked her up and asked her what she wanted, and she rubbed her hands together and said "wash" and pointed to the kitchen. She was telling me that she wanted to wash her hands.

Another time she was sitting in her chair next to Holland and they were playing with a stuffed animal. Holland dropped the toy and a bit later Eden started signing and saying "more, more more." I couldn't figure out what she wanted "more" of. I kept asking, and she kept telling me no. Finally she signed "baby." I picked up the stuffed animal off the floor and she got so excited that I figured it out! I didn't even know she remembered the sign for baby! We had done it together several times, with her imitating me, but never with her coming up with it on her own. I thought that was so smart. She was trying to think of a way to tell me that she wanted that animal (which happened to be a baby Tigger), and she came up with "baby" all on her own. Very clever if you ask me!

In addition to all the therapy, we've also had a few doctor appts mixed in. They both had a post-antibiotics check-up with the pediatrician last week and got the all clear on their double ear infections. Eden had an ear drum that had actually ruptured, but her peed said that it looks good as new.

Holland had an appt with her ophthalmologist on Monday. I was expecting the usual..."everything looks fine see you in a couple of months". Unfortunately, we didn't get the "keep an eye on it" news I was hoping for. We've known since, well pretty much since before they even left the NICU, that H was going to be nearsighted and would eventually need glasses. What I wasn't expecting was how suddenly it would happen, and that her eyes would get so bad so fast. She went from being a -2 in her right, and a -3 in her left in Jan, to a -3 in her right, and a -7 in her left now. Basically, that means that she can't see clearly more than a foot in front of her face, if even that far.

Now, John and I are both in the -3 to -4 range, and we absolutely can't function with out our contacts or glasses. The weird thing is that if we had not been going in for regular checks, I would have NEVER guessed her vision was/is so bad. Aside from the occasional eye turn, or that she looks a little unfocused when she is tired, she functions really really well. She looks at books, watches videos, recognizes people clear across the room, etc. etc. etc. She knows her colors, many of her numbers and letters, imitates facial expressions, and just seems very in tune with what is happening around her. It just goes to show once again at how amazingly adaptible people are, especially children.

So, on Wednesday Nana and I went with Holland to pick out her pink wire frames. I'm sure she will be totally cute in them. I just hope we can talk her into keeping them on her face!

Silly Faces (Updated)

Happy 30th Birthday Aunt Jessie!!! We love you and can't wait to see you!

Updated (12/11/06): And Happy 12th Birthday Matthew and Marion! I can't believe you are almost teenagers! You are two of the best cousins ever to H and E and we all love you so much.

Love, Billie, John, Holland, and Eden

I switched the picture of Eden because I love this one even more. Is it possible for a girl to be TOO cute? How about for a girl to have TOO many headbands? I made this one today, and it turned out so great that I see many more personalized headbands in Eden's future. Maybe one in every color???

All Things Toddler

I thought I'd write a little bit about what the girls are up to right now in All Things Toddler. You know, like eating, drinking, peeing, pooping, sleeping...that sort of thing. Certainly not very exciting to many of you, but really right up my alley. When you are the mom of a toddler (or two), these things are fascinating. And if you have a kid who isn't doing things that are "developmentally appropriate," it might help to make you feel a bit better, cause we're right there with you!

Eating and Drinking: Ahhhh. My favorite topic. Not. I hesitate to say that we are doing better in this area, because I might jinx myself, but we ARE doing better.

The girls are still drinking 16-17 ounces of 27cal formula per day. This is a very expensive habit that I don't see us outgrowing any time soon. I do have a slight problem, because they are still drinking it in three bottles a day. Yes, BOTTLES. I have no idea how to break them of this, or if I should even try. The real goal is for them to drink it, and we have had no success in drinking milk out of a cup or straw. They will drink water, juice, pop, etc. from a sippy cup or straw very well, but if I try to sneak some formula in they are NOT having it. So, I really haven't forced the issue. I guess I should probably get motivated to work on this, but I just don't want to add any more stress to my life right now.

In addition to three bottles, the girls are also eating three meals a day. Breakfast is around 10, a six ounce bottle at noon, lunch around 3, a four ounce bottle around 4, dinner around 7, and 6-7 ounce bottles at 8:30ish, then bed. I know it seems like a weird schedule, but it's what works for them...and I've tried a LOT of different things. For example, just TRY to feed them breakfast before 10. They WON'T EAT! So, we just do what works.

Holland is definitely a fruit and veggies girl, like her daddy, while Eden is all about the carbs, like her mom. You'd think Eden would be a bit chubbier with her love for bread and doughnuts and ice cream, but you know...it's not WHAT you eat, it's HOW MUCH of it you eat! They are doing better though, and with our many tricks they are slowing beginning to work up an appetite. Of course, they insist on a circus sideshow to eat anything, and although I was one of those moms that said I would NEVER do it, I do.

Peeing and Pooping: Everything is pretty normal in this regard. Holland's constipation issues have pretty much been resolved, and both girls are fairly regular. They are both taking Augmenten right now for double double ear infections, and boy does that bring on the poop. I changed four really nasty stinky diapers today. Okay...too much information I know.

The only thing I really wanted to mention on the peeing and pooping front was potty training. Haven't started and don't have any plans to. MAYBE when they are three. I'm hoping that eventually one of them will show some interest, but honestly they have NEVER complained of a poopy diaper. They would seriously sit in it for hours and not make a peep. I have a well trained nose, so luckily they don't have to. But really, how do you potty train a kid who doesn't care if their diaper is wet or dirty??? It'll be interesting to say the least.

Then with Eden there is the whole disability issue. She won't be able to take herself to the bathroom, or get herself on the potty, or even sit on the potty, blah blah blah. I don't want to worry about it now. I'll just cross that bridge when I come to it. I do know that eventually they will BOTH be potty trained. At this point I have no reason to believe otherwise.

SLEEPING: This is where my kids are stellar. Finally, I have something to BRAG about! Besides their insane cuteness of course...

They go to bed so easy now, and sleep all night. We have bottles in my bed around 8-8:30, then I put them in their beds around 9 and they go to sleep. Easy as pie.

Holland has been waking up in the morning around 8-8:30. Around noon she takes a 2-3 hour nap like clockwork. That's easy too. She finishes her bottle, I scoop her up, put her in her bed with a blankie and a teddy, and within minutes she is snoozing. She's such a sweetie about going to bed.

Eden prefers to sleep in in the morning and skip the nap. She often sleeps until 10-10:30 in the morning if I let her. If she sleeps in, she won't take a nap. That's kind of a bummer, cause I really enjoy nap time, but it's also kind of nice to have a couple of hours of Holland time in the morning, and a couple hours for Eden in the afternoon, when there isn't a jealous little sister trying to hog all the mommy time! On days I work, and get Eden up at 7:30, she does take a nap at Nana's house.

I've can finally say that I've gotten fairly comfortable in our routine. I'm not constantly worrying and second guessing every little thing I do. We're just plugging along slowly but steadily. The only nagging fear I have now in the back of my mind is that they will be 2 1/2 at the end of next month. Should I be working on these things, like getting rid of the bottles, and trying to potty train? Ugh. I like things the way they are. I'm comfortable. I know what I am doing. Why do they have to go and GROW UP on me now???

Unseasonably Warm Fall Day

It's Beginning to Look a Lot Like Christmas

What I am Thankful For...

This was the third Thanksgiving in a row that we have spent at home. Before kids, John and I would go to my Grandma's in the afternoon, and to John's Aunt's in the evening. We would stuff ourselves with turkey and lots of yummy food, and spend time with our extended family, that we don't see but two or three times a year.

We had planned on bringing the girls to their first Thanksgiving parties this year, but alas, we are all still sick. So, I am feeling down, and we didn't have the Thanksgiving I was hoping for.

On the bright side, these pictures serve as a reminder of all that I have to be thankful for. I have a LOT to be thankful for.

Happy 2nd Due Date/Homecoming Day!

Two years ago today was Holland and Eden's due date, and the day that we brought them home from the hospital after 110 days in the NICU.

Last year on this day we celebrated by visiting the NICU to thank the staff, and to let them see how far the girls had come. I had hoped to make a tradition of it, but we couldn't go today because we are STILL sick:( At the beginning of the week, we seemed to be in an upswing, but today poor Eden has been hacking so much I'm afraid she may cough up a lung. So, instead of visiting the NICU, we celebrated by meeting Daddy for lunch, where Eden began coughing so hard that she ended up throwing up all over Daddy's work clothes! Luckily, we were seated in the back, far enough away from the other customers that I don't think we ruined anyone else's lunch. The good thing is that I think we are more bothered by Eden's cough than she is, cause she continues to be in a fairly good mood. I don't think I would handle a cough like that as well:) She's such a good girl.

So anyway, in honor of the girl's 2nd adjusted age birthday, I thought I would talk a little bit more about what they are like as two year old's...

Holland is really into walking and talking on the phone right now. Aunt Lizzie gave her an old flip phone that she has continuously been walking around the house "talking" on. You can understand a lot of the conversation, including "hi, bye-bye, and, who is it?". She always knows who she is talking to (usually Nana, but sometimes Kimi, Missy, Papa, or Daddy), and she always tells them it's "Hana."

Holland has an incredible memory. She can count to ten, knows her colors and shapes, and can identify every animal and the sound they make. She remembers everyone's name, including mommy's name ("Bebe"), daddy's name ("Don"), sissy's name ("Enid"), and her own name ("Hana"). She also knows the names of every one of her favorite television characters. We have a Barney book where Barney is leading a parade and all the animals are playing instruments. Holland can name the instrument that each of the animals plays, and if we see that instrument somewhere else, she will inform us as to who plays it (e.g. the squirrel plays the triangle). She is just now starting to get good at putting two words together like "hana turn" and "mama sit" and "hi o-pus (as she holds the phone to the octopus' head)." She also knows all the moves to many many songs and can supply a missing word in all of her favorite songs and stories.

Eden is a totally sweet, cheerful, silly, little girl. She has a great sense of humor and when she smiles you can see the joy in her entire body. She is quickly getting more and more responsive to questions and is saying more words all the time. Right now she can say mama, dada, more, all done, bubbles, up, what's that, hi, yes, woof, stinky, baba, and roar, clearly and consistently. She often repeats what we say, but it's not always clear to anyone except us:) I am really encouraged that she is answering our questions so much more lately. Like, I asked her today if she wanted a cracker, and she signed "more" then "eat." She signs and says "more" all the time now, which makes it a lot easier to understand what she wants. And, by the way, it's so frickin cute when she signs that I want to cry every time!!!

Eden is also enjoying "talking" on the phone, and has mastered the military crawl through her new tunnel. When we count she will repeat some of the numbers, and will pretend to count with her fingers. She likes things to be very orderly and makes up her own games which often involve lining her toys up in neat little rows. Eden also loves to color. She has to hold the crayon perfectly in her hand, and makes little marks like she is writing. She will look at the paper for any blank space, then deliberately goes to that space to fill it in. She is also particular about what color she uses and will throw every color until we hand her the one that she wants:)

You know, the word on the street is that preemies "catch up" by age 2, and this is the age at which doctors and therapists stop adjusting for prematurity when doing evaluations. Quite possibly, many or most preemies DO catch up by age 2, but many or most MICROpreemies do not. Even though my girls are beginning to do some of the things that 2-year-olds do, they are still quite far behind in many ways, even aside from the obvious physical delays due to the CP. One of the neonatologists at our NICU said to me that we should allow one year for each month they were early. H and E were born 3.5 months early, so they will not "catch up" until age 3.5 or 4. Even then I KNOW that the effects of their prematurity will linger. The effects on them, as well as on me.

Prematurity Awareness Month

November is National Prematurity Awareness Month, and November 14th is Prematurity Awareness Day.

Through the end of the month, donations up to $100,000 are being doubled by Mastercard (if you use your card), so it's a good time to get the most bang for your buck!

If you are interested in donating on behalf of the girls, their virtual bands can still be found here: Holland Mirabell and Eden Deanna

Brusha Brusha Brusha

I messed up. I went and wished the first two years of their lives away, and now look...she's practically a teenager!




I feel sad at moments like these, when my smooshy little babies seem too grown up. I feel sad because I didn't take enough time to enjoy them. Their babyhood was so full of overwhelming stress, anxiety, sadness, and worry that it was hard to keep my head above water. Looking back I wish I had been able to spend less time worrying over every silly milestone and had just enjoyed the little snickerdoodles that they were.

I just couldn't see it then, that I could wait until LATER to worry. Maybe that should be my new mantra, "I'll worry about it later." If I don't stop worrying so much I'm afraid I may blink and they will be grownups. And grownups just aren't that much fun!