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.

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.

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.

Yesterday I was in such a state that I almost didn’t even want to go down to the hospital. I was so emotional and distraught that my baby didn’t need me, that I didn’t think I could handle seeing him at all. I couldn’t stop crying all day long, and when I went to make dinner Bear found me ten minutes later standing at the kitchen counter with my face buried in my arms sobbing my heart out.

Bear suffers from a charming disease I call, “Prince Charming Complex.” He is a fixer. Even more than that, he is a rescuer. Particularly of damsels in distress. Being the hard-headed feminist that I am, there are times when this makes me want to roll my eyes at him as I save my own dang self. But along with being a hard-headed feminist, I am also not stupid, so I’ve learned to be very very grateful for his “disease” through the years.

Last night Bear swung into action. He called the NICU, explained the situation, and begged the nurses to find a way to let me hold Atticus. They agreed that as long as he was stable, they’d help me find a way.

We raced down to him as fast as we knew how, and when we got there he wasn’t stable. His blood sugar was low and his oxygen saturation was all over the map. Our supernurse started taking care of his blood sugar while we waited and prayed he’d settle down enough to qualify as stable. He started fussing even more from all the moving and poking, so I started to talk to him and cheer him on.

There’s a very popular kids book called I Love You Forever. In that book a mom sings a song to her little boy over and over again that goes:
I’ll love you forever
I’ll like you for always
As long as I’m living
My baby you’ll be

Years ago I made up a tune to that little poem. We also changed the line, “As long as I’m living,” because as Latter Day Saints we believe in eternal families, so we thought, “From now to forever” was more appropriate. While I was pregnant I’d sing this little song to my bump all the time, and when I saw Atticus in trouble I started singing it again.

It was like magic. He settled. He started breathing better. His nurse was able to finish her work and he stabilized enough that with the help of our supernurse and two respiratory therapists, we managed to get him and all his cords and wires transfered into my arms where I held him and kissed him for two hours. And the nurse kept commenting on how much he loved it, how good his stats were and how regularly he was breathing.

It took nearly two weeks without holding him to break me. But those two precious hours are going to be enough to get me through.

Has it really been two and a half weeks? Not just one never ending day? I feel like I’m living life in fast forward and slow motion at the same time.

Thank you all so much for all the comments and emails and phone calls and flowers and presents. I just can’t believe the outpouring. I especially appreciate the new people I haven’t met before popping out of the woodwork to cheer me on. I’ve had some pretty terrible internet experiences, but this has been one of the most beautiful things in my life.

Oh for crying out loud, there’s so much to tell.

Atticus is doing OK. Better, actually, but just for today I’m depressed and gloomy. He’s still on the ventilator, but he just can’t seem to make it that next step. They took him off once, and then two days later they had to put him back on because his lung wasn’t inflating all the way. Then his lung decided to cooperate, but they wanted to keep him on it so he could use his energy for growing and putting on weight instead of working hard to breath. After a couple days of this he just got sick of the thing and yanked it out himself. Again, he made it two days on his own and then last night, minutes before we showed up for our visit, they put him back on the ventilator because he tired himself out.

I’ve been doing surprisingly well. I keep asking myself, how do I not have post partum depression? For one thing, I had all the risk factors, and for another, I went into the doctor’s office for what we thought were gall stones and ended up being strapped to a table while my baby was torn from my womb three months early and kidnapped to the NICU while I nearly died. Please understand I’m not trying to say the medical team did anything but give us both the best quality of care, I’m just trying to illustrate that the whole thing has been pretty darn traumatic. And until today, I’ve been pretty much OK about the whole thing.

Today, I’m depressed. And incredibly sad. And guilty. And frustrated. And feeling torn in so many directions I feel schizophrenic.

Sunday I suggested we not go down to the hospital so we could have a day to get caught up around the house. I was sobbing the whole time I was suggesting it, feeling like a terrible neglectful mother, but I just felt like we needed it. Then I start feeling funky. My skin feels sensitive, my joints hurt, I have a massive headache and then I start shaking uncontrollably and my milk production slows to a trickle. We hadn’t been grocery shopping since Atticus was born, so we were completely out of drinks. Since I really hadn’t been drinking all day and yet I was still pumping every three hours, we assumed I was massively dehydrated. Bear ran to the grocery store to go get me drinks, I guzzled two bottles of water, and went to sleep. Monday I wake up and it’s more of the same. I’m pushing liquids until I’m peeing water, and nothing changes. Bear gets home, takes one look at me and freaks out. I was shivering, my lips were blue, I was miserable. He calls his dad the doctor who says that I’ve caught some super nasty aggressive strain of the flu that’s going around that operates in cycles. First it lowers your body temperature, then you get a fever for several hours, then your temperature crashes again. All of this means that I can’t go see my baby.

By Wednesday it had all pretty much cleared up. The flu also gave me this crazy rash that covered like 70% of my body, and by the time I woke up that had pretty much disappeared as well, but the preemies are so fragile – and the flu is the absolute worst thing for them to be exposed to, so I figured it would be best if I took one last day to make sure everything was completely out of my system.

And, I was also kind of enjoying my break. As much as I missed my baby, it was kind of nice to be able to rest and work on getting pumping the breastmilk down without also driving two hours to spend an hour where all I could do was look at my baby in a big plastic box and put my hand on his back. And try to stay out of the nurses way. It was nice to have an irrefutable excuse that I wasn’t being a horrible neglectful selfish mother by taking some time to recover.

Yesterday driving down to see him was all I could think about. In between pumpings I spent my day running to the library to pick up books on preemies and making him a fancy little nametag for his isolette. Once Bear got home we raced down to get to him like it we were on the Price is Right, and when we walked into the NICU we saw his little bed surrounded by nurses, the doctor, and the respiratory therapist. The doctor explained to us that they just finished putting him back on the ventilator, and it was all I could do to not collapse to the floor screaming.

I know he’s not dying. I know it’s just a matter of time. Every sign points towards him making it out of here eventually and being just fine. But when he’s on the ventilator, I can’t hold him. I hadn’t even been able to see him for five days, and because I took that extra day off, I missed my window. If I had gone to see him Wednesday night, I could have held him and rocked him and kissed his fuzzy head. Instead, I got an hour with my hand on his head, and then I had to stop before he got overstimulated.

In my defense, we had no idea he was off the ventilator until after 9pm Wednesday night since the phone call to inform us got neglected because that was also the first day the nurses had to go paperless and they were all struggling to keep up with their duties while managing a new computer system. But like rational arguments make any difference to me now? I also recognize that it was the healthy thing to do to make sure the virus had completely run it’s course. But do you think that matters one iota to me now that I know I could have held my baby?

I just don’t think there’s anything I can do to make me feel like I’m doing things right. Whenever I’m not with him, I feel like an unnatural mother. Like I’m neglecting my poor tiny son when he needs his mom the most. But when I am with him, I’m blindingly aware of the fact that for this very moment, I’m not who he needs the most. Right now the nurses can do more for him than I can, and if I spend more than an hour at a time with him, I’m really just getting in their way. Once he’s off the ventilator and I can hold him and we can start working on breastfeeding, that won’t be the case anymore, but for right now I am largely impotent, and that makes me so frustrated all I can do is cry.

Here’s the kid!

We told the kid to not be shy so we could see the gender, and it listened.

There’s his junk, on display for the world to see. And I’ve officially invaded his privacy before he even makes it into the world. I’m sure it will just be the first time of many.

Bear is so crazy thrilled, he can’t even contain himself. He honestly believed we would have a passel of girls and he would never end up with his football player, and here he is, first time out. Bear’s parents are beside themselves at the “miracle within a miracle,” since most babies that show up despite infertility are usually girls because of the characteristics of the sperm yadda yadda yadda.

During the ultrasound the rookie waved at us with his left hand. Bear was so excited that he might come out left handed. Because if he’s left handed and has even the most basic athletic prowess, Bear says he can find success as a pitcher. Already we’re starting with this.

I have to admit, I’m working on coming around. I had my heart so set on a girl that I’m kind of grieving that loss. It’s not that I didn’t want a boy, it’s just that all my dreaming involved girl stuff and dolls and dressup. I don’t even know what boys are like. I know I’ll love him like crazy, I just have no idea what our days together will look like. I might have to develop a fastball.

Just this week I’ve finally figured out what little bumps are him and what are gas or growing pains or any of the other million little things going on in there. He moves around non-stop now, except for when Bear tries to feel it. I think our kid already has a twisted sense of humor. He’ll fit in well.