Thursday, February 23, 2006

I Carry Your Heart

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear; and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than the soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

ee cummings

Sunday, February 19, 2006

Growth Curves

One of our commenters had asked about which growth curve the doctor charted the girls on, so I thought I would write a post about it. Holland and Eden's pediatrician plots them on the growth curve for their actual chronological age. At the last appointment they were 18-months old (January 31st). I wrote that they have hit the charts for head circumference and length, but not in weight.

I printed out the NCHS growth charts, and plotted them according to their adjusted age, which is now 15 months, and the picture isn't much brighter. Holland is really close to the third percentile in weight, but Eden still isn't close. I did all of their measurements at home. Holland weighs 18 pounds 3 ounces, and Eden weighs 16 pounds 12 ounces. At 15 months, 18 pounds 8 ounces would be right at the 3rd percentile, which is the very bottom of the chart. To be on the chart for 18 months (their actual age), they would have to weigh 20 pounds.

Our pediatrician plots the girls according to their actual age because research shows that "85% of premature infants have catch-up growth and land on the regular growth chart by two years of age." This website gives a lot of information about "catch-up" growth and reasons why some babies might not catch up. Of course it's always a good idea to keep genetics in mind! John, at 5'5", is the tallest of his siblings. I am only 5'4". Grandma (John's mom) is 4'11"! We have a 2 1/2 year old neice who weighs 23 pounds and is just barely at the 3rd percentile herself. Of course, we also have a 4 1/2 month old nephew who weighs 22 pounds, but he is a boy so it's different (and he isn't on the charts either!).

I just don't think H and E were destined to be very big girls. That doesn't mean that I'm not pulling my hair out trying to get them to eat. If they were just at the 3rd percentile I wouldn't have to worry so much...The doctor at the developmental clinic at U of M charts the girls on a special chart for Very Low Birth Weight (VLBW) girls. On that chart they don't look so bad. I think Holland was around the 25th percentile, and Eden around the 10th. Of course, the last time that chart was updated was in 1985, and it really isn't considered very valid anymore because a lot has changed in the care and nutrition of VLBW preemies since then. I'm not sure exactly why that doc still uses it. Maybe just to make us feel better:)

I have heard that children with Cerebral Palsy follow a different growth curve than "normal" children, so I also printed out that chart and plotted Eden on it. There we are looking a lot better. Even using her actual age she is just above the 50th percentile in length, and just below the 50th percentile for weight. This chart is for babies with quadriplegia, where all four limbs are affected. Eden has diplegia, where just her lower extremities are affected, but she does have a lot of trunk involvement, so her Physical Therapist thinks it is still fair. It takes a lot more effort, and burns a lot more calories, for Eden to move and get around, so it really makes sense that she will grow more slowly. Especially considering that she doesn't really care about eating!

Sunday, February 12, 2006

Because They're Cute!

Happy 30th Birthday Aunt Lizzie! Daddy's next...

Thursday, February 09, 2006

The Bad Things...

The bad thing about Holly being able to crawl up the step from the family room...
I can no longer leave her in one place and expect her to be there when I get back!

The bad thing about Eden being able to roll...
Now I am chasing two bare butts instead of one, trying to get the diaper on!

The bad thing about Holland being able to pull up...
She is constantly using Eden as a prop!

Tuesday, February 07, 2006

Problem Solved!

I am happy to report that our outstanding hospital bills have been taken care of! It helps to have loving, caring, doctor friends who continue to check up on the girls even though they have been home from the NICU for 14 months. The NICU at St. Joe's is top notch, made so by the doctors and nurses who work there. They continually go above and beyond the call of duty to advocate for their growing NICU family. I wouldn't have wanted to be anywhere else. I have been so happy with the care that my kids have received, and I will continue to take the girls there for any care that they may need (but hopefully they won't need it). Thank you so much to all of the doctors who took it upon themselves to help us. The doctors involved met specifically regarding our case, and we have been informed that our experience "will result in a serious review of all of their processes and should make life better for families in the future." I just have to say, "WOW"! What a serious load off of our minds.

Now that we don't have to worry about hospital bills, we can focus all of our energy on what is important...our girls. They had their 18-month appointment with the pediatrician on Friday. I cannot believe that they are 18 months old. Holland now weighs 18 pounds, is 29 3/4 inches long, and has a head circumerence of 44 1/2 cm. Eden weighs 16 pounds 9 ounces, is 29 1/2 inches long, and has a head circumference of 46 1/2 cm. We have finally hit the charts for 18-month-olds in head circumference and length. Eden's head is at the 50th percentile(!), and Holland's is at the 10th. Their lengths are between the 3-5 percentile. They are no where near the charts in weight, and who knows if they will ever be. I seriously doubt it.

A big part of the reason that Eden isn't gaining as much weight as we would like, is because she doesn't like to eat. She does OK with a bottle now, drinking 5-6 ounces at a time during the day, and up to 8 ounces at night, although occasionally she will still refuse even the bottle. Solid foods are pretty much nightmare. She has some good days where she will eat pretty good, but she has whole weeks where she eats close to nothing. She is a total pro at refusing to eat. She clamps her mouth shut, shakes her head, and smacks the spoon out of our hands. On bad days, she will throw up after eating only a few bites. It is beyond frustrating. We've had her evaluated by an OT who determined that there isn't anything physically wrong. She doesn't seem to have an oral aversion, very common in preemies, either. In fact, she loves putting everything in her mouth. As far as I can tell she is just VERY picky about what she likes, and how she likes it. Teething has also exacerbated the problem. Between the discomfort and the excessive amounts of drool that she swallows, and a little bit of mild reflux, I think her tummy sometimes feels a bit upset.

Ultimately, of course, the goal for any baby is to get them off of bottles and formula, and eating solid foods full time. Apparantly some kids accomplish this by 12-months. If we get there by age 2 1/2, I'll be happy. Our pediatrician did recommend going from 4 bottles a day, with 2 solid meals, to 3 bottles a day, with 3 solid meals. So, instead of 24 ounces of formula a day, they will be getting 16 or 17. Hopefully this will help with the solid feeding, because they will actually be hungry when we try to feed them. We've been at it since Saturday and it seems to be working okay. Eden has done pretty good the past couple of days. She LOVES cheese, so to get her eating more meat we've been making meat and cheese balls. Working pretty good. We've gotten her to eat fish, chicken, and ham this way.

The most exciting news in the past week concerns Holly. She is now pulling to stand! She did it for the first time on Thursday, and since then has been practicing nonstop. Now she is pulling to stand on everything, even Eden. I walked in the other day to find her standing next to Eden with her hands on her belly! She's also enjoying pushing things around the family room on her knees, and she has learned to go up the step from the family room to the kitchen. Anthother couple of months, and we will have a little munchkin walking about our house. Weird.

Eden is learning a lot too. Since she started rolling, she has become a little rolling bean. She had figured out how to turn and pivots her legs to change directions. She can pretty much go wherever she wants. Which is usually straight to where Holland is playing, where she grabs Holland's toy away and makes her cry. Her language development is taking off too. She is really starting to understand a lot of what we say. She knows "where's the light?", "where's Daddy?"...the dog, your eyes, your mouth. She verbalizes "ahhhhh" when she wants us to turn the light on and off. She talks a LOT when she is playing, and is doing a lot of turn taking when practicing conversations with us. She is so cute when she talks. She scrunches up her nose and eyes and nods her head saying "ahhhhhh." It is totally adorable, and it is amazing how far she has come in just a few months...