Thursday, February 28, 2008

Music to Cry By, Part II

So this is another song that I would try to sing to my babies while we were camped out in the NICU...

You Are My Sunshine
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away

The other nite, dear,
As I lay sleeping
I dreamed I held you in my arms.
When I awoke, dear,
I was mistaken
And I hung my head and cried.

You are my sunshine,
My only sunshine.
You make me happy
When skies are grey.
You'll never know, dear,
How much I love you.
Please don't take my sunshine away.

I only knew the first verse and the chorus, but it really didn't matter since I could barely choke out the last line, of the chorus, never mind getting through the first verse. I may never be able to sing this song to my boys. gulp. sniff. sigh.

I found the complete lyrics on the National Institutes of Health, Department of Health & Human Services web site. I love this site, they have lyrics to tons of Children's songs and many have audio files. I found the complete lyrics to this installment of "Music to Cry By" plus this little tidbit of lesser known information at the NIEHS.

The song was written by former Louisiana State Governor Jimmie Davis and Charles Mitchell; and is one of two official songs for the State of Louisiana.

As a public service, I thought I should include these almost never heard lyrics. (unless you are in Louisiana)
Louisiana my Louisiana
the place where I was borne.
White fields of cotton--
green fields clover,
the best fishing and long tall corn;

*Note: I'm not always this melancholy. My friend Lindsay is taking a trip down memory lane, as we get closer to her boys birthdays. It is really difficult for parents of preemies as we near those dates etched into our minds, our doctors appointments, ultrasounds, admissions to Labor and Delivery, hospital stays. All of the memories come flooding back it makes you catch your breath, pause, and sometimes cry. Most days we look at our children and marvel, revel, and the hard memories are distant. I know I will have a few difficult posts coming up soon, we are nearing that day, the day my happy pregnancy stopped, and the terror began.

Wednesday, February 27, 2008

Number 2 pencils please.

As preemies, we are closely followed by the team at the Infant Special Care Follow-Up Clinic. Because of their rough starts, preemies are at risk for developmental delays. The team tries to follow all of the at risk babies that graduate from the Infant Special Care Center (NICU). We've had several follow-up appointments in the last two years and they always fill us with a mix of anxiety, worry and apprehension. And really, we shouldn't feel so up tight about the whole thing. I tell Scott that all the time.

The developmental follow up has us taking a standardized test, called the Bayley Scales of Infant Development. If you don't know how I feel about standardized tests, I hate them. I hate them in our public schools. I really hate them when they are used on my babies to determine if they are 'normal'* or not.

One of the big problems with a test like this, done on babies and toddlers is, they are in a clinical setting, with strange people and if they are like Evan, they are afraid of situations like this. (they usually end with painful shots or tests)

During the test, the child is given "tasks" to perform, from the simple to the more complex. As they get something "right" they move on, if they fail to perform five tasks in a row the test is finished. The tasks range from stacking blocks, or putting blocks into a cup to following two step directions (get the ball and give it to daddy), or completing a simple puzzle. They also have to point to pictures of objects or actions with a verbal cue. It's hard work, and it can be very frustrating for the child. They just want to play with that puzzle, or the doll. "Why are you giving it to me and then taking it AWAYYYYY!!!" Plus if you are a twin, you've either been sitting in the waiting room for an hour and a half before you can start the test, or you'll have to wait for your brother to finish!

It's excruciating for the parents too, because they will ask your child to do something, or point to something, that they CLEARLY KNOW. AT HOME. and they will NOT point to it, say it, or do it, no matter how many times the really nice lady asks them.

All that being said...Ryan and Evan are doing REALLY, REALLY WELL!!!!! Cognitive scores place them at 22 months (they are 22 months!!!!!) Language scores have Ryan at 20 months and Evan at 19 months (we all know that Evan's language is much more developed than Ryan, he just refused to do the tasks on the test) Gross and Fine Motor scores have Ryan at 21 months, and Evan did not complete his test, but what he did had him at 18 months.

This is all really great news, we still adjust their age for tests like this to 19 months, but they are really close to not needing it! They are REALLY close to being caught up to 'normal' 22 month olds!

I think Scott and I have finally stopped holding our breath. We still have so many challenges ahead, (getting Evan to chew and swallow) but it is SO encouraging to see, that even when not at their bests, our boys are doing so well.

*I don't buy into the whole 'normal" label. I think every person can have something to offer, something to contribute. With what my boys went through just to be alive? 'normal' is a bonus. What I do worry about is how the boys lives will be. Like any parent I want them to be happy and healthy. In our society, 'normal' might get you less teasing on the playgrounds, it might make it easier for you to enjoy a productive life. That's all I really want for these boys, happy, healthy and productive lives.

Sunday, February 24, 2008

Maybe I'm Complainin' a bit...


Alright, I gave in. Sort of. I had to get the boys some rain gear. It KILLS me to buy something that they are only going to wear a couple of times and out grow, but...we are tired of staying out of the backyard (or park) when it rains. So we got some boots, and jackets (they've already gone back to the store, the hoods didn't stay up, and the zippers kept coming apart, we'll be ordering some really nice ones from Land's End) and the boys stomped in puddles to their hearts content.

One. Two. One. Two. Three. Four.

Scott has taken to giving the boys cooking utensils at breakfast to keep them entertained. We may have the second coming of John Bonham.


video

I've always said who ever believes it is a good idea to give these boys a drum set, can keep it at their house, now what? Deprive our baby his bliss just for our own need for peace and quiet?

Friday, February 22, 2008

Music to Cry By

We were listening to music the other day. We listen to music everyday, all day. But there are some songs that really hit me. Songs that make me well up with tears. They all relate back to our time in the NICU.

In the early days, when the boys were so sick I couldn’t touch them, I’d sit next to their isolette and sing what ever I could just so they would hear my voice. Scott read them books, tons of books, the Lord of the Rings Trilogy, the complete works of Winnie the Pooh, Dr. Seuss’ “Oh The Places You’ll Go”, and he did Sudoku with them. I would sing. I would talk to them, sometimes read too, but most of the time I’d sit and talk, or sing. I don’t have a great singing voice, but I love to sing. I’d drive around (pre kids) and sing at the top of my lungs. It was here that I realized that I don’t know the words to a lot of songs. I know some of the words, but not all of them. When you are singing along to the original artist, well, you get prompted, when you are sitting in a NICU, there’s nothing but beeping to help you keep time.

It was shortly after James Blunt’s “You’re Beautiful” hit it huge that the boys were born. It was all over the radio. Sometimes in A nursery the radio would be on and I’d hear the song 4 or 5 times a day. There’s a couple of lines that still choke me up. I’d barely be able to get through them in the NICU, and I’m sure it’s still part of the NICU Post Traumatic Stress Disorder that has me get all teary eyed today.

You're Beautiful
by James Blunt

My life is brilliant

My life is brilliant.
My love is pure.
I saw an angel.
Of that I'm sure.
She smiled at me on the subway.
She was with another man.
But I won't lose no sleep on that,
'Cause I've got a plan.

You're beautiful.
You're beautiful.
You're beautiful, it's true.
I saw your face in a crowded place,
And I don't know what to do,
'Cause I'll never be with you.

Yes, she caught my eye,
As we walked on by.
She could see from my face that I was,
Flying high,
And I don't think that I'll see her again,
But we shared a moment that will last 'till the end.

You're beautiful.
You're beautiful.
You're beautiful, it's true.
I saw your face in a crowded place,
And I don't know what to do,
'Cause I'll never be with you.

La la la la la la la la la

You're beautiful.
You're beautiful.
You're beautiful, it's true.

There must be an angel
with a smile on her face,
When she thought up
that I should be with you.
But it's time to face the truth,
I will never be with you.

I know the song is about losing a girl, but loss is loss. The loss James is singing about, I related it to the loss of a normal pregnancy, loss of the ability to even touch your precious babies for fear they’ll stop breathing, the possible loss of your dreams of being a parent.

There were moments that my babies were one breath away from being angels, there were moments that I felt I would never be with them, my love was always pure.

Some day I’ll write about the other songs that ALWAYS make me cry.

I Am A Horrible Mother, Part II

I love ice cream.

My motto is "A day without ice cream is like a day without sunshine"

I'd say this is new thing, but I'd be lying. Ice cream is a huge part of my youth. I can still remember that as a small child, my parents would take me to Baskin Robbins for ice cream. I'd get Mint Chip, my Mom Jamoca (the best coffee ice cream ever), and my Dad would get Strawberry. I had countless birthday parties at Farrell's Ice Cream Parlour and picked many plastic animals out of many a Zoo Sundae.

My love of ice cream even influenced my first job, I worked at Baskin Robbins. I wasn't even 16 when I started at the neighborhood Baskin Robbins. (Circa really ugly polyester brown, pink and orange striped dresses.) By the time I left for college, I was their primary cake decorator and longest tenured employee. I ran the store when the owners went on vacation including taking care of payroll. (a lot of responsibility for an 18 year old) My first year at college, I would come back to the store for the holidays, primarily Valentine's Day and Mother's Day, anytime they needed back up with the huge number of cakes. One Valentine's Day we filled 500 cake orders. I made about 5000 roses over four days to put on those cakes. I came back to help and make some extra cash sure, but there was the added bonus of two free scoops per shift.

More recently, when I was pregnant with the boys, my consumption of ice cream increased dramatically. I don't drink milk, so my excuse was, I NEEDED ice cream so I could get enough calcium!!! And then I was lactating, so well, I REALLY NEEDED my calcium!!!!!!!

In my effort to reduce my calorie intake, I've started eating the Breyer's Slow Churn. It's super yummy, and it's supposed to have fewer calories and fat. I haven't looked because I'm pretty sure if I knew, I would have to make the painful decision to remove the sunshine from my day.

Anyway...back to why I am such a horrible mother. The other day, I needed to pick up a few things at the store. I generally do my shopping in small bits, it's highly inefficient, but I usually have the boys with me and I buy what I can fit in the stroller. I've tried the pulling the cart behind me trick and well, my heels came away bruised and bloody. We went to the store specifically for yogurt for Ryan, Eggs for Ryan and a few last minute things for dinner that night. When we got there I found that Ryan's Dino bites were on sale ($4.99) I picked up 10 bags, stroller getting really full now. Then I saw that Breyer's was on sale, buy one get one free. I got four containers. (that should last a couple of weeks) I had no room in the baskets for all this ice cream, so I put two containers on top of the sunshades. I thought about asking the boys to hold them, but I decided that their hot little hands might melt my sunshine. We were packed, I couldn't carry another thing. The problem, I still needed eggs. Ryan only had 4 more, that's two days of breakfast. I weighed my options, put two of the containers of ice cream back and get Ryan's eggs, or make a real effort to get back to the store before we have a breakfast crisis.

I'm ashamed to admit, I chose my own joy, above the nutrition of my child.

But as one of our nurses once told me..."If Mama ain't happy, ain't no one happy." That's my motto and I'm sticking to it.

BTW: Ryan got his eggs, and I'm having a bit of sunshine.

Wednesday, February 20, 2008

"I'll never stop the rain by complaining"

It was raining today and I thought (in my clearly insane mind) that it would be a great day to get a bunch of errands done. Since the boys couldn't be playing outside, we might as well accomplish something so we could play tomorrow when the sun was out again.

I mean really, what is wrong with the logic behind loading and unloading two boys in the rain several times, being a good idea? It makes perfect sense to me, and that is why I'm sure that being a mom sucks all of the brain cells straight out of your head.

We did have a great day, and we did everything we needed to do, except get something made for dinner, and we had no troubles at all. (as long as you don't count slightly wet boys)

The real reason I am telling you about my day is to say that I spent $300 on diapers today!!!! Gasp! Gulp! Sigh! Actually it was a bargain. How you ask? I got the diapers for $.2427. And I bought them at Babies R Us of all places! I had no idea that with their coupons you can buy as many boxes as you would like and they'll take the $5.00 off all of them! I am seriously going to have to keep my diaper purchasing options open from now on.

By the way, I looked at potty chairs today.

"Because they're cousins...(not) identical cousins..." (did anyone ever question the science behind identical cousins????)

The Cousins
I’ve been trying to blog for a few days now, but Scott’s Company something has been preventing me from logging on and adding a new post.

We had such a fun filled weekend with Shelley and Madison. It was a whirlwind, but we managed.

Shelley went with us to our first ever soccer “game”, we had her on the sidelines taking pictures, but she soon realized that no one was going to notice an extra “parent” on the field. She was right.

On Sunday the five of us went to the Wild Animal Park. My game plan is always to get there right as they open and leave right after lunch. That gives us several hours of good play time, and we leave before it either gets too crowded or too hot. Little did I know just how important leaving after lunch would be.

The park is really a great place for toddlers and kids, there is a lot of walking, but with strollers and willing parents, it’s pretty kid friendly. We started the day with tours of the play areas, before the other little germ infested kids arrived. We had full run of the play ground, although my boys were only interested in two things. This jeep made of stone,
and this one made of plastic. We did a lot of pushing, and a lot of walking.

By the time we left we had three exhausted toddlers. On our way out, the line of traffic trying to get into the Park extended more than two miles. The parking lot was filled to the overflow dirt parking area. I have never seen it so busy before! I was never so glad to have been the early bird!

Ryan took a shine to Shelley, he is such a flirt. He would grab her hand and look up at her coyly, and just give her the biggest smile. Evan does it too, only he's a bit more up front and in your face. He'll just stand in front of you and smile, smile, smile. But Ryan really WORKS IT!





Madison is growing into such a big girl. She is really starting to listen to what her Shelley says, and even her aunt and uncle. She was so good when we asked her to be quiet when the boys were sleeping. She would make a noise, and then put her finger to her lips and say "shhhhh" like she was reminding herself to be quiet. She has so much to say and isn't afraid to tell you! And she is such a sweet, sweet girl. She had to give every animal in the petting zoo a hug. How Cute!!!!!

Really, really fun weekend. Far too short. We missed Todd, but we made up for it by eating ice cream every night.

Saturday, February 16, 2008

Just call 'em "Becks"

I know you can barely see, 'em. We hope to have some better pics in Shelley's Camera, and I'll post video very soon, but if you look very closely I think you can see the makings of the next David Beckham or Renaldo. After all of that blazing fast footwork we had to cool our feet in the stream by our house. Unfortunately the rain on Thursday left the water a little high at this crossing and we couldn't get to the horse trails, but it's a good thing we are easily distracted by rocks, sticks and water.



video video

Thursday, February 14, 2008

I Am A Horrible Mother

That's the truth of it, and because of it, I'm sure my kids are going to get beat up at school all the time.

We went to music class today, and in walked these adorable fraternal twin girls, in red heart covered skirts, pink shirts, tights and black dress shoes. It was at that point I realized it was Valentine's Day. I looked over at my boys in their green and blue shirts, jeans, not a speck of red (or pink) on them.

These poor boys are going to be those kids in elementary school wearing the paper shamrocks pinned to their shirts by teachers so they don't get pinched on St. Patrick's Day.

I sure hope that before it really counts, I can start relating to dates and days to months. Right now my brain works like this, WAP (Mon.), OT/EI (Tues.), Aquarium (Wed.), Music Class (Thurs.), Farmer's Market (Fri..), repeat, or I do the how many more days until Scott is home for the weekend countdown.

Maybe I should keep a stack of holiday stickers in the glove compartment to be safe.

Wednesday, February 13, 2008

Fun in the Sun

We are so lucky to live here. First of all, it's been near 80 for the past week, and then there's all the fun activities we have at our disposal. We went to the Wild Animal Park on Monday, we've been going almost every week now, and we have our little pattern. We go run around Condor Ridge (thanks Jen for the suggestion!), we spend some time walking out to the Elephant Outlook, we hit the petting zoo, the ducks, the meerkats and depending on time, we may go see the gorillas. I think we need to add something new to our repertoire because while I was looking at this... The boys were more interested in this...
While we were at the Park, we ran into fellow twin and NICU mom's Lindsay and Jen. Lindsay and I had a play date scheduled for our boys on Wednesday, so we just said a quick hello and goodbye.

Wednesday had us at the Aquarium, another one of our weekly haunts, with Lindsay and her identical twin boys, Tyler and Dylan. Our four boys had tons of fun, playing with the plastic sea stars, lobsters and shrimp, but the highlight of the day was most definitely the puddle of water. I tried to get some pictures of all four boys, playing together, but trying to get the faces of four toddlers running in four different directions is like trying to catch lightning in a bottle. At least they are all in the frame, almost. Tyler and Dylan are just a couple of weeks older than us, born at 29 weeks. We met Lindsay and Jamie before all of our boys were born during our tour of the hospital. Lindsay just wrote about this chance meeting in her blog. I said the same thing to Scott, hand slapping my forehead, "We should have gotten their phone number!" I thought at the time that we had missed an opportunity to make friends with someone else with twins, someone who would be able to relate to what we were going through!
Little did we know that two short months later we would all meet again. Scott remembers far better than I, as I was doped up on Magnesium Sulfate, the worst drug ever. Mag Sulfate leaves you, or left me, totally oblivious to everything. I felt like I was drunker than drunk. While I was on hospital bed rest, I'd stare up at the ceiling and everything would move. I couldn't focus on anything, I couldn't read, I could barely watch television. I know I talked to a ton of people on the phone, and had lots of visitors, but those conversations are just fuzzy and distant memories.

I digress...So, after the sudden arrival of Axel and Outlaw, I was promptly put back on Mag Sulfate, my first visit with my boys was while I was drugged and stupid. We also ran into Lindsay and Jamie when I was drugged and stupid. I remember Jamie coming over and talking to Scott, I remember smiling and nodding, I remember asking Scott, "who was that?" I remember a few days later, not so drugged and not so stupid, having a conversation with Lindsay and Jamie. They were so kind, they offered a hand of support when we needed it the most. They were NICU veterans by this time (two weeks ahead of us), they gave us suggestions, offered their experience as guide, their hands in support, even as they were going through their own struggle.
I don't think you can begin to understand what a difference it makes to have someone reach out to you when you are drowning in a sea of the unknown. And now, all of that struggle for life behind us, it is beyond wonderful to see our four boys running (even when they are supposed to be holding their Mommy's hands), laughing, screaming, playing, and being little boys. It's hard to believe that a little more than two years ago, all of those things were just distant hopes and dreams.

Tuesday, February 12, 2008

There's Something About Mary

Our Early Intervention teacher made us a bunch of laminated pictures of the family. I've been showing the boys pictures of everyone and naming them. We've had a strong emphasis on those family members joining us for February Sweeps.

Both boys have become quite adept at picking out the correct family member when asked. It's really not a fluke when they are right 95% of the time, so I'm convinced that they really do recognize the clan.

Last night, I showed the boys a picture, and asked, "Who is this?" and RYAN, my silent Ryan, said "mar" and Evan looked at him and said "Mae-Mae". I did not call blog about this immediately last night because, with babies learning to speak, it could all be a lucky coincidence of consonant/ vowel combinations.

So tonight, another test, and tonight another "Mae-Mae" from Evan.

Sunday, February 10, 2008

Driven to Distraction

Scatterbrains, that is really the only way to describe myself these days. Formerly, I was this ultra organized, extreme multi-tasker extraodinaire. These days, I can't seem to keep a single thought in my head, I leave one room to do something, and get three steps away and can't for the life of me remember what I was doing, or I'll start one thing, and get side tracked on to another, never to finish the first thing, or I'll forget to take my ATM card out of the machine, and then forget I had even gone to the bank when the nice person from the bank called to tell me I'd forgotten my card. That being said, this post, like so many others may jump from topic to topic randomly. Welcome to what it is like in my brain.

Our second round of February visitors arrived on Wednesday afternoon. Great-Grammie Abby and Nana (Cindy). Grammie hasn't seen the boys since June, and for Cindy it's been since Christmas. We had some fun activities planned for their visit, but most importantly, we planned time when we did nothing but play. We played so hard that the boys had to be rousted out of deep sleep after 3 hour naps.

It has been spectacularly beautiful here, we've had weather in the high 70's all week. It was especially beautiful in La Jolla at the Aquarium. We love this place. I think we go once every 10 days or so, sometimes more often. The boys love to play with the fake lobster, shrimp, sea stars, and shells. Evan especially love to stick his hand in the tidepools and touch the sea stars and sea cucumbers. Ryan prefers the plastic variety. With Nana and Grammie in tow, we enjoyed all the Aquarium had to offer, with a strong emphasis on the outdoor activities.


I didn't have my camera handy for this, but we have a big slide very close to the house. We've gone over to it occasionally, and the boys love it. It's not something I can do by myself. Some one has to be at the ladder, with each boy, it's really big, and once you send one boy down, he's bound to come running around to the ladder again and start climbing before you can get the other boy down. So it is really a two person operation. Cindy and I took the boys over one afternoon, Ryan must have gone down this slide 30 or 40 times. It wasn't long before he realized that he could turn around at the bottom and yell and scream and point "request" that Cindy join him at the bottom of the slide, via the slide. It was really cute and funny, and I think Cindy made at least 20 trips down the slide herself.



Ryan tried to feed Nana potato pancake. And Evan says, no, if I can't see you then you can't leave! We had such a nice visit with Grammie and Nana. Visits are always too short and we are sad to see our family go home. Grammie had a great time watching the boys interact. She got a kick out of our "ritual" (or how we get Evan to open his mouth to eat) of singing at mealtimes. Sorry again for me being out of tune! and best of all, the boys got some wonderful quality time with their Grammie and Nana.



Sunday we went to the Zoo with our friend Tobin and his Dad Philip. I of course didn't take any fun pictures of us, because that would require me remembering to take out the camera and do so. I did remember to take these photos.

Why you ask?
We are still working on being out of the stroller in public, so today we would move from exhibit to exhibit in the stroller and in relatively controlled environments, let the boys out, to hold our hands as we walked or looked at the animals. It was getting pretty near lunch time, and both boys wanted water, (did I mention it was almost 80 degrees at the Zoo today?) I gave them their cups. I was walking with Evan, and he became distracted and no longer wanted to carry his cup. So, I had his hand with one hand, and his cup with the other, we were standing on Monkey Trails right up against the wire fence. Mind you, I could see it all happening in slo-mo. Evan was sticking his leg through the wire, his heel on the lowest wire. Just as I was getting "Evan, we don't..." out of my mouth, yep his shoe went flying. Down, Down, Down. My reflexes were not even close to being able to catch it before it went over. We then spent the next 15 minutes looking in the bushes trying to find this brown shoe, in amongst bark and mulch. No luck. Scott climbed over the barrier that keeps Zoo guest a safe distance from the animals. No luck. Finally, on one last attempt, we tried to estimate the trajectory of the shoe from above.
So the first picture is the bush where we FINALLY found the shoe. And the second, I'm pretty sure that's the guy that tried to attack Scott as he was climbing through the bushes, yes, that is why they have that buffer zone between the guest and the animals.
Before we hit the freeway, this was the cuteness in the backseat. The upside of all this out of stroller activity? VERY tired boys.







Tuesday, February 5, 2008

February Sweeps

In the world of Television, February is a big month. Every quarter the industry re-asseses their ad rates. So in February, May, August, November the networks and the affiliates pull out all the stops and try and attract viewers. This is when you will be most likely to see "A very special episode of..." or a string of guest stars or the long awaited return of a hugely popular show.

In our world this February is going to be a bit like sweeps in that we'll be having a string of very special guests.

Sweeps started off this weekend with a visit from Maric.

The boys love Maric. Ryan, loves Eric. He's really bonded with his Uncle. It's really amazing to see, it's been since Christmas, yet as soon as Ryan saw Eric, his face lit up, and I think he started making gestures to be held. Ryan really loves people. He really seems to know the people in his life that love him and he is always so comfortable in their presence.Evan is also really starting to be more comfortable with people that aren't his Mom and Dad. He still makes sure we are around, but as long as we are near, he is good. (Ya-Ya has to be close by too or he will start calling for him. "Ya-Ya, Ya-Ya,Ya-Ya!")

We had such a nice weekend of eating, (Ryan also ate two pieces of pizza from Pizza Port this weekend!!! I won't even begin to think it, but, breakthrough???) wandering the horse trails, and riding the escalator up and down, and up and down, and up and down. (Who knew that we could milk hours of enjoyment out of escalator rides?)

Visits from Maric always end too soon and leave us hoping they will be back soon, but because this month is sweeps, our next guest stars arrive tomorrow.

Friday, February 1, 2008

No Explanation Necessary*




*For those of you that require an explanation, we are at Phil's BBQ, Ryan is chewing on a rib bone, and yes, he ate his first baby back tonight, with gusto. I guess he does belong to us.

ALWAYS Take Time



to stop, even with twins, and smell the flowers.