Oh how I wish I was exaggerating for dramatic effect.

Just when things were going so well....

I naively hoped that finally, Finally, FINAAAAAAAALLLLLLLYYYYYYY, things were going to turn around for us. After a decade of struggles it looked like we were going to have everything we wanted. Great house, great job, great family.

I must have forgotten how my life actually works.

For the past year now, just after we bought the house - of course, Bear's job has been in jeopardy. Not through anything he did or didn't do. He is incredibly good at his job. His staff adores him, he breaks all kinds of financial records, he supervises over excellent care for the patients. But shortly after he was hired his company, a huge national corporation, decided to make a number of changes in their business model which included selling their Southern California buildings.

It is standard procedure when a new company comes in to fire the administrator because usually you only sell a building if it's not making money, and if it's not making money it's the administrator's fault. But our circumstance was different because they had just replaced the long time administrator with Bear, who was turning things around remarkably fast. We really thought we were in a pretty good position.

All year long we've been holding our breath as one company after another came through, tried to buy the building, threatened his job, and then fell through. After over a year now, one company finally stuck it out and the sale becomes official sometime next month.

This industry is very small (which is why I'm being so vague) so we had lots of friends and contacts feeding us information and rumors about the new company and their plans. Bear prepared an impressive presentation, met with the new owners, and we were sure we had it in the bag. They even had conversations where they told us that they couldn't talk out of turn but that we should "read between the lines" about our future with the company. Without handing us a contract, they made it as plain as they could that we were staying on board.

Until Friday when they called Bear out of the blue and told him he was fired.

We turned down so many offers and other opportunities. A couple of months ago when we flew to Tuscon? We had a job offer that was fantastic and the only reason we aren't in Arizona now is because we felt so sure this one was going to work out. The market is kind of bleak at the moment, so we don't know what is going to happen.

Obviously, we were pretty distraught over this, so we rushed down to the hospital to spend some time with our baby and put a few things in perspective. We knew we were in trouble when we walked in and the nurse ran to get the doctor who wanted to talk to us.

The biggest risks for preemies are lungs, brain, eyes. In that order. Friday they did his first eye exam and everything looks pretty good. Even if he were to stop progressing at this point he wouldn't be blind, he'd just need some laser surgery. So that's good. He's making great progress on the oxygen and now there's only one more step down before he's off of it for good. That leaves the brain.

In a routine scan, they discovered two little "cysts" in the middle of his brain. These are areas of the brain that had at some point been denied oxygen and consequently been damaged, resulting in Cerebral Palsy. They are located in the part of the brain that governs gross motor skills.

We won't know the extent of the damage until he's at least two years old. We'll have to see how he develops to discover how the brain damage will manifest in his abilities. He might be able to resolve his issues with physical and occupational therapy, or he could have lifelong limitations. Based on the size of the injury, he most likely won't be one of the kids you think of when you hear "Cerebral Palsy." He probably won't be in a wheelchair. Hopefully. But he definitely won't have an easy road. And any hopes Bear held on to about our Rookie still being a super athlete despite his prematurity, pretty much died.

This is a man who has two loves in his life. Me, and sports. Particularly football. He has no other passions, and even few other deep interests. And now the son that he's longed for for so long most likely will not be able to participate in them. Devastating doesn't even begin to describe it.

We've had a few days to process everything and we're doing pretty ok. We're probably doing far better than we should be given everything we're facing. Luckily we're both fixers and after a couple days in bed eating our feelings (fancy European chocolates for me, crappy pseudo pastries - Ding Dongs, donuts - for him) and watching sports underdog movies (we own Rudy, Rocky, and Hoosiers and had a marathon this weekend) , we sat up and came up with a battle plan. Bear is so good at his job and he has a specialized skill, he'll be able to find something. We might just have to revise what we're looking for a little. He also works with PT's and OT's and I know I can take Atticus into the therapy room and have them show me what to do and I'll turn myself into his personal physical therapist. There are state programs we qualify for that send therapists to our house and I am going to take advantage of them and get educated and throw myself into this.

We're resolved to get through this and tackle these challenges, but I would be so lying if I didn't also say that we are terrified and feel angry at God and completely betrayed. We are good people. We help others whenever we can. No one should have to go through what we've gone through in the past ten years.

Making Progress

This photo is already a couple weeks old. Now he has a little more chub to his cheeks, and he's even beginning to sprout a double chin. Instead of looking like a weird little wrinkley thing, now he looks like a baby. I'll take photos tonight, but between my lack of time to do absolutely anything, and the fact that anytime I ask my computer to do something it practically starts smoking, I can't promise when they'll actually find their way here.

So far we think he's going to be a mini-me. He's definitely got my nose. That nose is a Brown family tradition. It's apparently the most dominant gene in the world, because you can't make a baby with a Brown without getting that nose. I think he's also got my chin and my cheeks, but for so much of his life we've had to view his face from under tape and tubes, so we could easily be mistaken there. I'm also guilty for his attitude, but I'll get to that later.

Atticus seems to have finally turned a corner. After ripping his tube out himself a grand total of five (5!!) times*, he is now on a nasal canula, with high flow oxygen. Here's what that means: There are basically four types of oxygen he could be on, and as of this moment he is on the second least aggressive. If he can sustain this level, then we can move forward and start working on eating by the weekend or so. This is unbelievably huge. Once he can take all his feedings by mouth, he can come home. Even if he has to stay on oxygen, they'll send him home with a tank. As long as he can eat from bottle or breast.

*5 times. My son ripped out his tube five times. Everyone in the NICU was in disbelief with this kid. The nurses said it was a record. The respiratory therapist said it was unheard of. My kid is apparently so willful and pigheaded that he wants things done his way even if it means he can't breath. He did not like that tube and no amount of logic or necessity was going to prevail upon him. It's going to be interesting to see what he's like when he's two. I think we're screwed.

For the most part my mood has been pretty good. We've fallen into a routine, and just like other times of high stress in my life, I've found so much comfort in a familiar rhythm. The days have been flying past in no time at all because I can only think in three hour chunks. I wake up, pump, eat breakfast, pump, eat lunch, pump, work on something for an hour if I hurry, pump, either work on something else for an hour if I hurry or make dinner, pump, eat dinner, drive down and visit Atticus, drive home, pump extra long to make up for the missed session, sleep, pump, sleep, pump, sleep, pump, lather, rinse, repeat. There's not a ton of time to be depressed or anxious because I always need to be moving on to the next thing needing to be done.

Living strapped to the pump is getting wicked old, though. For years I've heard stories of the pain of engorgement or rock hard boobs from the milk coming in and I can't relate to any of that. I have to be religious about pumping because I don't have any biological inspiration making things work the way they're supposed to. I have to manufacture my milk supply through constant, unceasing pumping. I'm totally my lactation consultants favorite student. A lot of moms of preemies give up, because as I may not have made clear, it is an AWFUL lot of work. But it's something I'm committed to. My milk supply is the joke of the NICU. I currently take up four bins in the freezer when other moms are allowed one.

When I can squeeze it in between pumpings (or as Bear calls them, milkings) I've been working on his room. I've now got all the painting done and the vinyl letter border up, and now I'm working on the bedding. I don't have much time left though, because if he keeps heading in the right direction, he could be home in two or three weeks.

Riding the neverending roller coaster

They say that as a parent, you're only ever as happy as your unhappiest child. I didn't imagine that the saying included infancy, but apparently it does. When he has a good day, I am just elated and I can see little cartoon birds cavorting around my shoulders. When he has a setback, I'm looking for the razors.

Sunday we went down to see him in the morning, which we almost never do. I think I've seen the day shift twice so far in his month of life. We prefer going at night because we get more time with him. During the day there are labs and xrays and blah blah blah poking poking poking, and we basically end up in the nurses way or having to leave him alone anyway because whenever he gets fussed with, he needs time to calm down afterwards. At night the nurses are much more mellow, they're happy to see us and help us spend time with him, and it works better for us to go down together when Bear gets off work. We're already spending hundreds of dollars on gas as we drive two hours every day, making two trips would make us lose our house.

Anyway, Sunday Bear's parents drove down from Orange County to visit our teeny little super guy, so we went at around 10am so the whole family could get together for lunch. When we arrived, the nurse was just finishing up some work with him. He was a little grumpy like he always is when they can't just leave him alone, and all of a sudden he started crashing. His oxygen saturation plummeted and alarms started beeping all over the place. Nurses came sprinting from all directions, someone yelled for the doctor, the respiratory therapist charged her way over, and Sally and I had to dive to get out of the way.

I just sat there watching my tiny little man surrounded by all these frantically moving bodies, and once again I was completely superfluous. Once again I felt torn in half: grateful beyond words for the fantastic care he's receiving, and so jealous I could shoot lazers out of my eyes that I can't be the one to give him that care.

It ended up just being a mild scare. He had woken up from a nap and coughed, and ended up clogging his ventilator tube with mucus. The nurses were so sweet and all patted me and made sure I understood that "he just had a booger stuck in the pipe." They brought me tissues and told me how much they all loved him. They gave me hugs and empathized and told me how good it was to cry and get my frustration out, how they understood how hard it was to just stand back.

I love those nurses. But I would also shiv any one of them in the kidney if I thought I could just scoop my boy up and run all the way home.

After that visit, I was morbidly depressed for two days. I tried to get out of going to lunch in favor of taking to my bed, but Bear was hoping that some company would take my mind off things. So I went to lunch with the family and quietly cried through the whole thing. And then I went home and took to my bed.

When he has a day like that, it's so easy to give in to the sadness. It's so easy to tell myself, "Well, I can't do anything for him anyway, why should I even go to the trouble of going down there. The nurses will take care of him." When he is in crisis, no amount of my voice or touch is going to help him. Luckily, I've read the preemie books and I know that this reaction is ridiculously normal. The books have told me that there's nothing wrong with me for thinking this, I just have to push through until he has a good day.

Yesterday we made our usual nighttime visit. On the way down we were chanting, "Come on, good nurse. COME ON, good nurse." We even debated between all our favorites as to who we really wanted to see that night and settled on the sweetest little thing that reminds us of our friend Jess. She looks so young we keep wondering if she's even old enough to be a nurse (sound familiar Jess?), but she's so sweet and enthusiastic and laughs at all our dumb jokes and lets me do everything I can for little Rookie. Sure enough, who's at Atticus' bedside? Our favorite little Kathleen.

We had a great visit with him. He's still on the blooming ventilator, but I got to take his temperature and change his diaper and dress him in his little vest. I got to kiss on him and sing to him and he held my finger in his tiny fist. And best of all, we found out he had a growth spurt and he's now 1345 grams, and we're holding our breath until he gets to 1500 when they'll try taking him off the ventilator again. That is, if he doesn't yank it out again in the meantime. Did I mention he yanked his tube out for the second time? This little boy of mine is such a stubborn little pill. I have no idea where he got *that* from.

Sure enough, today the sky is clear and all is right with the world. Today the roller coaster is climbing and I am happy because my baby is growing. And eventually he'll be OK.

Last night I also got to talk to a nurse who spearheads their donations, and I just couldn't be more thrilled. Finally, I've found something I can do. I can't clear his airways or put in an IV, but by gravy I can sew like the wind. And I can unleash the forces of the internet to help me. Stay tuned, and over the next couple of weeks or so I'll be posting my new NICU donation drive. Go through your fabric stashes and pull out all baby related fabrics, because I have patterns and more patterns needing volunteers.