Emily will be 19 weeks on Saturday, but her corrected age is 6 weeks. The physical therapist was here on Tuesday, we spent 20 minutes out of the 30 minutes trying to get Emily alert enough to work on tracking, but she is getting better. Certain toys capture her interest more than others. Norco was here yesterday to get the apnea monitor (hallelujah! Let me remind you it sounded like a fire alarm). And I was sad to move Emily out of newborn diapers into size 1. In the NICU, larger diapers were a ceremonious affair. Now it's a reminder of time passing quickly!

Play time

I scheduled the medical company to pick up the apnea monitor on Wednesday. Emily is supposed to be kept on it until Tuesday, but I've been tired of lugging it around so she's really only on it at night and long car trips, but most of the time I forget to turn it on. Can't wait to have a completely wireless baby!

A fellow NICU parent sent me this link, thought there was a lot of truth to it. Hits close to home. Cut and paste the following link for an article on NICU trauma. http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=1&_r=2&sq=infant%20nicu%20stress&st=cse&scp=1

Emily is doing everything a newborn should, other than the fear of exposing her to colds and the flu (why does there have to be a pandemic the year I have a fragile preemie???) it's getting easier to treat her like a normal newborn.

Physical Therapy

The therapist came to the house for Emily's 30 minute weekly session. She worked on Emily's tracking for most of that time. There was a therapist in Twin Falls that our pediatrician recommended. I think I'll take Emily there to at least have another evaluation done and to compare with the one with the Infant Toddler program.

The journey

One thing I'm thankful that I did, good days or bad, is take a daily photo in the NICU. Lately, Aaron and I have been talking about how much Emily is changing. Her cheeks and thighs are really getting chunky. So, I put together a slideshow of the pictures because it really is amazing to see the changes. However, it was too large to put on the blog, so I downsized to a photo a week.

Puzzled

Our candle for Nadia

Emily's goals

Yesterday I met with the therapist and someone from the Infant Toddler program to set goals for Emily. It's easy for me to come up with the correct language as a teacher, but it was a different role for me to be the parent representing my own child. In the end, we came up with two different goals. The first is that in two months Emily will be able to track Aaron and I around the room and the second is to work on head control. They're not much different than what you would expect from a three month old infant that was full term. Aaron and I have also decided to "double dip" and see a physical therapist in Twin Falls that specializes more in premature infants. Hopefully between the two, if a problem does become evident , the intervention will be early enough that by the time Emily hits a year the only thing premature about her will be a petite size.

Nadia Erin Hughston

STILL
music & lyrics: Gerrit Hofsink

I’ve been waiting for you
For such a long time
You’re always on my mind

And I’m lying awake
Most of the night
Waiting to hold you tight

Now that I do
And look at you
My heart is breaking
This can’t be true

Chorus:
Lost you before I found you
Gone before you came
But I love you just the same
Missed you before I met you
On earth we never can
But in heaven we’ll meet again

Close to my soul
Close to my heart
Right from the start

Lost in time
Lost in space
Can’t wait to see your face

Now that I do
And look at you
My heart is breaking
I know it’s true

Chorus:
Lost you . . .

Sometimes I find myself wondering what to do
With this pain that I’m going through
But I know one day, God will take me away
And I’m coming home to you

And when I do
And look at you
My heart is healing
I know it’s true

Chorus:
Lost you . . .

Appointment Update

Today we saw the pediatrician in Twin Falls for Emily's 4 month check up. Her weight is up to 6 pounds and 11 ounces and they measured her as 19 inches long. Dr. Scott was really pleased with Emily's weight gain and answered all of my questions (yes, Aaron and I are to get the swine flu vaccine and she's going back on prilosec for her acid reflux). Two more weeks of the monitor, and if it doesn't alarm then Emily is done with it. Emily even tolerated her two shots well. We'll have to go back in a month for another growth check. The next step is to set goals with the physical therapist on Thursday. But after today's discussion, I have decided to use the therapist provided by the infant toddler program and also take Emily to a therapist in Twin Falls that specializes in cases like Emily's.

Newborn essentials

Now that Emily has been home over a month, there are things I know are essential to own. The Moby wrap, ingeling products (best swaddle blanket & the one piece with a zipper makes nighttime peaceful) and petit bateau (a luxury item, but long sleeve body suits that actually fit). However, one thing I wish I had stocked up on overtime is batteries. With everything that swings, vibrates, plays lullabies, shines lights, or creates nature sounds - we are going through batteries like crazy.

Today we made a trip to Twin Falls to store the RV for winter. So long summer home. We'll be back in Twin next Tuesday for a doctor's appointment. We'll be out of medication by then, so hopefully there isn't a problem considering it's Friday and there won't be a way to refill a prescription over the weekend. Next Thursday I meet with the physical therapist and someone from the Idaho infant toddler program to see goals for Emily.

Family portraits

More pictures from the photographer. I had to export the slideshow in a smaller format, so the pictures aren't super clear. Enjoy!

The dogs...

A lot of people have inquired how the canine members of the Hughston family feel about Emily. Most of you know that Mig was diagnosed with bone cancer and doesn't have long to live. His personality is slowly changing from active and playful to calm and lovable. He'll give Emily a quick lick occasionally, but is quite content to lay around. Gerda doesn't understand why she can't have the toys since Emily has yet to show interest in them. In fact, there's a basket of stuffed animals on the floor of Emily's room. One day I caught Gerda with one of them. When I went to put it back, I found Gerda's squeaky toy in Emily's toy basket. She must have thought an exchange would be okay. So much for the "evil rottweiler" reputation. As for Faryn, she's her normal independent self. Irritated if you sit on "her" couch or if her meal time is delayed because Emily is eating.

Snow...

The only thing wrong with this is the date on the calendar...

First Snowfall...

Look closely at the grass, it's starting to stick!

Okay, so it's hard to see, but it really is snowing!

Go Hawkeyes!

15 weeks old

The weather has definitely changed here, Idaho is trying to decide between fall & winter with the talk of snow. And now that swine flu is officially in the valley, Emily and I are really on lock down. I wish more than anything we could open our doors to visitors and have the opportunity to show off this miracle baby, but with a preemie's weakened immune system, that's just not the case. WIth doctor's appointments to keep that's already more exposure than I care for.

Emily is starting to eat more at each feedings, at times taking 3 to 3 1/2 ounces. The best part about that is that I'm occasionally allowed five hour stretches at night of glorious sleep (on the couch because Emily prefers the pack and play over the bassinet that is in her room).

Appointments

Yesterday Emily had a check up with the eye doctor. The blood vessels in her eyes appear to be growing where they should be, so we don't have to go back to see that doctor until February. Today was our last appointment with home health care. Emily weighed 5 pounds and 11 ounces today. We also had the physical therapist visit for the first time. Her assessment was the Emily has the ability of an 11 day old newborn, which isn't too far of from Emily's adjusted age of being 2 weeks old. The therapist mentioned that because Emily is doing so well that she may not get approval to visit every week, but possibly twice a month. In the next few weeks we can work on Emily's tracking by encouraging her to follow objects and infant massage to help her become more aware of her extremities.