Tuesday, April 08, 2008

The Great, Long-Awaited NICU Drive!

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My cousin Karen took this photo for me and I just couldn't be more crazy about it.

Like all things in my life, I start out with the very best of intentions and get completely sidetracked by reality. A month and a half ago I found out that my NICU had a need and I knew I could count on the mighty forces of the internet to save the day. And then my life crashed down around me and I went into my cozy little cave and ignored all the rest of the world. I'm starting to get back on my feet now, so I have to follow through on this.

Babies in the NICU (or Special Care Nursery as they call it in my hospital - probably because it sounds nicer. They're not in need of "intensive" care....oh no, just special care. That's much less scary.) have a lot of special needs. And because most babies are born when they're supposed to be, there isn't a huge marketplace out there providing all the special things these tiny babies need. Preemie clothes are rare out there, and they don't take into account the fact that a lot of these babies have tubes and wires and have to be incredibly easy to remove should an emergency arise. The environment of the NICU is harsh and loud and the polar opposite of the nice dark cozy womb the babies are still supposed to be in, so the babies need things to try to recreate that environment as closely as possible.

Almost all NICU's rely on donations for these items. Medical costs are high enough, particularly on top of the high costs of everything else a baby needs, so if donations aren't forthcoming, the babies have to do without. The hospital won't buy these things, even if they're available. They just make do. At my hospital this means that the angel nurses, who all have their own families they're caring for on top of my boy, go home and with their own money and time, make all the items the babies need.

Meanwhile, us poor moms are frantic nervous wrecks feeling frustrated and impotent and completely alone in the world. Suddenly there are healthy, happy babies everywhere you look and all you can focus on are how empty your arms feel. Any support you receive is so treasured you just want to kiss everyone who so much as pats you on the shoulder. When you see a little tag on a blanket that reads, "Donated with love from the sisters at the Church of the Living Christ" you feel buoyed up by the loving hands that made the blanket that cradles your baby, especially when you can't.

Over the next little while I'll be sharing items that the NICU needs. It may take me a while before I get all the items up because I have to draft a few patterns, and while it couldn't be simpler in the flesh, turning them into a digital format is a little complicated for my weak photoshop skills.

The first item is what the NICU needs the absolute most. Miniature quilts.
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These little quilts are good for everything in the NICU. They serve first and foremost as isolette covers. As I mentioned, the NICU is a very hard environment. There are bright florescent lights on all day and all night, so not only is there no regular day/night cycle, but these poor babies go from a place of total darkness where they are safe and protected, to a lifesaving but still harsh plastic box that - by necessity - leaves them vulnerable to all the stimulus in the chaotic room.

The blankets are also used to keep the babies warm in the moments when they are allowed to be held, a cozy cover when the mothers get to work on breastfeeding, and they go home with the baby as a memento of what they accomplished there.

Studies have shown that preemies are at much higher risk for learning disabilities, ADD and ADHD, and the commonly accepted reason for this is due to all the stimulation they can receive in the NICU. A baby who spends a great deal of time there experiences so much more stimulation through all the lights and sounds and interaction with the nurses, that many doctors feel their brains retain more pathways for communication, which can lead to trouble processing information later on. These simple little blankets help to shield the babies from all the activity around them, keeping their little isolette as dark and quiet as possible while still allowing the nurses to keep a watchful eye on them.

These blankets can be any style you dream up. They should be thick enough to dim the light, so handknits are not a great option here. It is helpful to have one side that is a solid color because some babies - such as babies born addicted to drugs - are extremely sensitive even to the visual stimulation in a bright bold pattern. They should measure roughly two feet by three feet, but that is not an exact measurement by any means. They can easily be bigger since blankets do fold easily, but they shouldn't be very much smaller. Since they will be going home with the babies, snuggly fabrics are a plus, but not a necessity. They can be an elaborate hand pieced quilt, or a simple little blanket. The blanket Atti received was a snuggly microfiber on one side, a bright Care Bear themed cotton on the other, sewn together like a pillow with a simple topstitching around the outside. No batting, no further quilting. And it works great.

If you are interested in donating to our cause, you can mail any completed blankets to:

Removed until I get a new P.O. Box.
Email me for info! tresa at reesedixon dot com

(this address may be subject to change, but I'll be sure and warn you)

If you don't have time to make a blanket but still want to contribute, I'll happily take any stash you have off your hands and put my teenage girls from church to work. Fabric, batting, thread, anything you want to get rid of that could work for baby blankets.

Oh, and if anyone can come up with a clever name for this, I'd love to hear it. Right now my brain can't come up with much more than, "Is my baby coming home? When is my baby coming home? Can my baby come home today? How about tomorrow?" And that isn't very good at describing what we're trying to do here.

Here's me when I got my first good snuggle while they changed out his tubes. Apparently, pure unabashed joy makes me turn into an anime character.
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Sunday, April 06, 2008

Atticus update

Let me start by thanking all of you who are about to pay your California state tax bill. Because thanks to you Atticus is going to turn out OK.

As soon as his doctor told us he had cerebral palsy, our minds immediately went to the worst case scenario. We thought of Jerry's kids, or a full grown young man with his arms curled up into his chest as he used a joystick to maneuver his wheelchair. That won't be our guy.

He's had several brain scans since the bad one, and there has been no further damage. Which means that the problem that started all this was an isolated incident and not a problem with his circulatory system that would result in further oxygen deprivation down the road. The doctors describe his brain damage as "mild to moderate" which we believe is medical speak for, "depending on how the damage manifests, he'll most likely be able to overcome it, but there are no guarantees, so we're going to warn you as such so you don't sue us."

The doctors have also repeated to us over and over again, separately and as a big white coated group, that the number one determining factor in his future success is the environment his parents create for him. If a child has moderate damage but parents who got him into therapy, were aggressive about his treatment, didn't write him off as crippled but pushed him to be his best, that child will do way better than a child with mild damage whose parents don't do their job. One doctor was also trying to explain to me the advantages we have as educated middle class parents, but he couldn't come out and say that an educated middle class parent has advantages, so he said that "studies have shown that children do much better when their parents are....um...sophisticated." I had to laugh as I pictured changing diapers in pearls and white opera gloves.

Now here's where living in California is amazing. Because he is premature and has special needs, the state has programs that will send physical and occupational therapists to our home. There are home health nurses that will drop by to make sure that everything is OK. I can get any equipment - leg braces, therapy aids - completely free. There are even therapy opportunities that involve going horseback riding (for core strength and trunk stability) and swimming with dolphins (water resistance exercise). And all for absolutely no money. None. I can get a MediCal waiver so that no matter what happens with Bear's job, Rookie will always be able to get medical care.

We've also discovered that we had resources staring us right in the face all along. Bear's sister-in-law is an Occupational therapist that works with disabled children, and she has been indispensable in educating me about my options. Bear works with a team of OT's and PT's, and his director of rehab has visited our little guy twice to do her own secret evaluations and make sure she approves of his care. And we hear stories at least once a day from someone we know who knows someone else diagnosed with cerebral palsy who is a completely healthy functional person.

We have tons of hope for him. And I'm thrilled because my Type A, OCD self has a research project to focus on while I try to distract myself from the fact that he's still not home.

Wednesday, April 02, 2008

I LOVE YOU INTERNET!!

It's our very own "It's A Wonderful Life" around here.

I have been so buoyed up by all the comments. I can't begin to say what a life line you all have been to me. I'm so touched by all the old friends, new friends, former lurkers, and internet friends that have rallied around me. You are all beautiful people, and I have no idea what I would have done without you.

P.S. unscrappable survivors...someone throw me a link, would you?

About a week ago we started getting cards in the mail. The first one trickled in all by itself, so we thought that one of Bear's cousins was being extra thoughtful, and we were floored to open it and discover he sent us $200. Then more cards came. And more. Every day brought another love note from a cousin or an aunt with a bunch of money here, a whole lotta bunch of money there. Since it was all family members, it was pretty easy to figure out that one of the cousins had rallied the troops and they showered us with love and support and checks.

Today I ran out to JoAnn's to pick up more quilt batting (one of these days I'll show you the bedding I'm working on for Atticus) and when I came back Bear was standing at the doorway saying, "Hurry up, hurry up, something amazing has happened." He pulled me to the dining room table where a stack of gift cards and cash were waiting for me. A whole bunch of anonymous strangers sent us gift cards under the name "Operation Gas Card." Bear just said, "OK, which one of your internet friends did this?"

I'm at a total loss. I know a lot of internet people, and I've seen every group come together to support one cause or another. Is it the Feminist Mormon Housewives? Is it my crosstitchy friends the Wagoners? Is it the unscrappables remembering their long lost friend? Is it a network of friends from one of the many places we've moved away from? I'm stumped. We've examined postmarks, we've brainstormed, one envelope had the name in the return address blacked out and we held it up to the window light trying to decipher it. We've given up.

I don't know who you are, but after I recover from the ugly cry, I'd love to give you a big wet kiss on the mouth.
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