Another Anniversary

A year ago we brought Lexie home from the NICU. She spent 6 weeks there healing and growing. When she was there, we stayed informed of her status and the minor procedures she underwent, but I didn't get too deep into the details. I just mentally couldn't go there. That's why I don't know for sure about what happened to her in the hours after her birth, and I didn't know for sure what the possibilities were for complications in the weeks after her birth, and I didn't know specific details about how procedures like feeding tube insertions were performed.

A couple of months ago the (in)famous Duggars welcomed a preemie into their gigantic family. I never thought I'd watch that show, but since the arrival of 19th child Josie at 25 weeks gestation, I've been tuning in. I'm not so interested in the family's activities, but I've been watching the NICU footage carefully. I've now seen a feeding tube insertion on TV, and I know how far down it goes (far -- to the small intestine). I've seen this little TV preemie encounter complications that we avoided, but now I understand how they occur, and I realize how lucky we were that nothing serious befell Lexie during her time in the hospital. I now understand that when the nurses said "we're giving her .4 ml an hour of milk, and we'll see how she does," they were watching for a bowel perforation or necrotizing enterocolitis, in which the intestine begins to die. We didn't dig any deeper and just happily accepted it each day when Lexie did well and her feeds were increased.

I'm glad I didn't know that much about it at the time.

Too Much Navel Gazing

I've been thinking lately that my retrospectives must be pretty boring. I mean, they're even getting boring to me. This whole month everything has reminded me of being in the hospital last year. Even the Today Show's holiday programming reminds me of being in the hospital (and watching the show every day for four long hours). The memories permeate everything, to the extent that I don't even feel much like writing about them. So I've had radio silence here for more than a month.

The New York Times recently published an article about NICU parents with Post-Traumatic Stress Disorder (PTSD). When I read it, I thought it probably applied more to people whose children were at death's door repeatedly. I hate thinking about Lexie's time in the NICU, but after the first two weeks she was pretty much a feeder-grower (although not the best feeder), and there wasn't too much drama. But a while back I visited the beautifully written blog "A Fifth Season," by a mom who lost her baby daughter after 11 weeks in the NICU. On her daughter's second birthday, the mom posted a video tribute with clips and pictures from the NICU. I was watching the video and feeling sad for this mom, when suddenly the unmistakeable sound of a NICU desat alarm blasted loudly over the soundtrack. I felt a sudden wave of panic, just as I had so many times when Lexie desatted as I fed her in the NICU. And I surprised myself with a series of sudden, gasping sobs.

I have no idea where my reaction came from. I suppose any PTSD will pass, with time. I have no business being traumatized when so many people don't get the happy ending.

A Run-In in the Hospital Garage

One of the things I hate about the DC area is the apparently excessive number of people who have an entitlement complex. As in, I'm better than you, so I deserve X.

I had a run-in with a couple of these people back in February in the Inova Fairfax blue garage, and I've only recently calmed down enough about it to write the story.

The Inova Fairfax blue garage is a complete disaster, with dozens of spaces reserved for visiting doctors, physical therapy patients, cancer patients, radiology patients, etc. On a busy day, there's a lot of jockeying for the few remaining unmarked spaces. One cold day in February, I was headed in to the hospital to visit Lexie in the NICU when the line of cars in the garage came to a complete stop. Far ahead, I saw a giant black SUV backing down the ramp from the roof. I sat and waited. Normally this kind of thing might have annoyed me, but I was too tired and worried to expend any energy on being annoyed at that point. I waited, and waited, and waited, more than five minutes, and the line didn't move.

The black SUV still sat at the bottom of the ramp ahead of us, blocking everyone's forward escape from our row. Cars had pulled in behind me in line, so I couldn't back up, either. Finally, I started to notice a few people coming out of the elevator bay and getting in their cars, and I figured this would unclog the bottleneck. The first two cars left, and the two cars in front of me took the spaces. Now only one car remained in front of me. And what do you know -- a space just in front of that car opened up. I waited patiently for the car in front of me to take the space, but it just sat there. After a minute or so, I figured, hey, I guess I'm next. I drove around that car and pulled into the space.

Suddenly I heard someone leaning on the horn. And I mean leaning. I decided to ignore it as I pulled together my bag and my cooler of milk for Lexie. As I was walking away from my car, Mr. Black SUV pulls up and yells, "THANKS FOR STEALING OUR SPACE." I continued to ignore him. "I JUST DROPPED OFF MY PREGNANT WIFE!" Oooooh, wrong thing to say to me.

"OH YEAH?" I yelled back. "WELL I'M GOING TO VISIT MY PREEMIE IN THE NICU." He sped off like the witless coward he was. He probably gave me the finger or something, but I didn't look back. I was a little thrown -- it had been a long while since I'd had to fight with someone like that, but I tried to calm down and headed into the elevator bay.

Standing inside the door was a young-ish pregnant woman. She looked expensive. She watched me walk by, probably saw that I looked exhausted and frazzled -- like a weak, easy target -- and she made a big mistake.

"Thanks for stealing our space," she tossed at my back, maneuvering to show off her pregnant belly as I turned my head.

I stopped.

I turned around.

I engaged.

"I had no idea it was 'your' space. I'd been waiting forever without moving and a space finally opened up. I had just as much right to that space as you did." My voice rose and she began to shrink away, muttering a few "never minds" -- ha, too late, idiot. "And this is a hospital. We've ALL got problems. I'M GOING IN RIGHT NOW TO VISIT MY PREEMIE. I HOPE *YOUR* PREGNANCY IS A SUCCESSFUL ONE."

I spun on my heel and strode into the hospital. It really pissed me off that she thought a pregnant woman at the hospital should get special treatment over all the people there who may be DYING on any given day.

I do hope she felt sorely ashamed of herself, at least for a moment, before she went back to her rich little bubble of a life with her jerk of a husband.

Two Weeks Home

Alexandra has been home with us now for two weeks, which marks the first two weeks since November that no member of our family has been in residence at the hospital. I still think of the families there and all the babies in the NICU. This whole experience has brought me countless new perspectives, even just walking around the hospital.

Whenever I'd see women in their hospital gowns being wheeled into the NICU to see their premature babies for the first time, I'd think, "that was me."

Up on the 6th floor, where Lexie lived for two weeks just down the hall from my old room, I'd see glimpses of the women on bedrest and think, "that was me."

When I'd see tired, worried-looking men getting off the elevator with takeout dinner for their hospitalized wives, I'd think, "that was Steve."

When we were finally checking out of the NICU, I saw other mothers watching me and I knew what they were thinking, because that had been me, every day until it was our turn.

My mom is visiting this week, helping us get some extra sleep. Lexie is doing well here at home, although she hasn't quite taken to her bassinet the way she did her NICU crib. She's a great sleeper now as long as someone is holding her. We're trying to get her used to the bassinet, little by little.

It hasn't been an easy road to parenthood, so I'm wired to expect adversity. Because preemies are more likely to die of SIDS, I'm completely paranoid. This probably contributes to my wanting to hold her as much as possible. (Then I can make sure she's still breathing.) I know I'll have to chill out, especially when Steve goes back to work and I'm on my own here at home, but for now this makes me feel better.

Here's Lexie hanging out in her bouncy seat. She's not too sure about it.

Here's a shot of her fluffy hair, post bath, while she chews on my sweatshirt.

Close, but No Cigar

Yesterday, we got the big news that Lexie might be able to go home today. What?! Today, you say?! Holy crap, we need to run out of here and clean up the house, finish putting together the bassinet, clean off the changing table, install the carseat, and omygod what else...

Today, Steve and I headed in there, Lexie's "going home" outfit and carseat in hand, nervous and excited to bring our girl home. But Lexie had other plans, spending the day sleeping almost nonstop, barely waking up to eat. And she didn't eat enough to get the OK to leave.

On the bright side, she passed her "car seat challenge."

We suspect the sleepiness was due to her Synagis shot last night. It's not a scientifically known side effect, but all babies are different, and *something* was causing her to be out of it.

Hopefully tomorrow will be the big day. Fingers crossed. In the meantime, Steve and I went out to dinner. It might be a while before we can do that again.

Pump Room Soundtrack

The NICU provides a pumping room for NICU moms who spend a lot of time with their babies. It has its own culture and etiquette, which I won't get into here. It also has its own radio, which is worth mentioning for the sheer inappropriateness of much of the music.

Some songs I've heard while pumping:
Black Dog, Led Zeppelin
Nights in White Satin, Moody Blues
The Reaper, Blue Oyster Cult
Free Bird, Lynyrd Skynyrd (seriously)
We Will Rock You, Queen

The last one was the most jarring. I mean really.

Today, I finally heard what I deemed an appropriate song for the environment (the chorus, at least) -- Red Rubber Ball by Cyrkle:

And I think it's gonna be all right.
Yeah, the worst is over now,
The morning sun is shining like a Red Rubber Ball.

36 Weeks

Today Lexie reached the equivalent of 36 weeks gestation. This had been the goal when I checked into the hospital in November -- getting the pregnancy to 36 weeks. Obviously we didn't quite make it.

Last week Lexie was moved to yet another "step down" room for babies who just need to learn to eat and grow. It happens to be on the 6th floor (the regular NICU is on the 2nd floor). And it happens to be within spitting distance of the hospital room I lived in for so many weeks. Every day I see my old door at the end of the hallway. It's always closed. Inevitably, I've been thinking a lot about an alternate universe in which I am still behind that door. In that alternate universe, today I walked out the door on my own and headed home to wait out the rest of my pregnancy, instead of being quickly wheeled out, terrified, heading to the labor and delivery floor many weeks too early.

But things continue to improve in real life. Yesterday Lexie's feeding tube was removed. That's not entirely accurate -- it would be more accurate to say that Lexie pulled out her feeding tube again. And her doctor decided not to replace it as long as Lexie continues to eat enough on her own. So far, so good. She looks like a regular little baby now without the tube taped to her little face.

In other real-life news, we just received our copy of Lexie's birth certificate as well as her Social Security card. She's not even supposed to be born yet, and already she's just a number in the eyes of the government. Welcome to the world, kiddo. We're so glad you're here.

Pumpin' Ain't Easy (NICU Mother Theme)

As you know, I've been spending a lot of time working to produce enough healthy food for little Alexandra. It's a struggle for NICU moms, because our babies aren't with us -- the hormones don't quite kick in the way they do when you're with your baby 24x7. Plus, one of the most common tips, "think about your baby," is more likely to stress you out ("I wonder how she's doing ... I hope she's not crying ... I hope she's gaining weight ... I hope she doesn't feel all alone ..."), especially in the early days when you can't even hold your baby, than it is to create happy warm babymom feelings.

Anyway, as an outlet for my frustration (and yes, I've talked to the lactation consultants -- I'm working it out), I came up with this interpretation of a hiphop classic.

Pumpin' Ain't Easy (NICU Mother Theme)
[With Apologies to Ice-T]

NICU mother's in the house...
Grab yo' phlanges

Pumpin ain't pumpin ain't easy woman [repeat 4X]

Take a look at me, everything I wear's stretched out
Pump baby, I can't see my nips with the lights out
This is how I do it, pumping milk really blows
NICU mother baby, and it's a heavy load
Step back, hater make a little room for my hose
Slippers on my feet, hope the milk really flows
Baby is the reason all the real pumpers know that
NICU mother puts pump to breast
She got no chance trying not to get stressed
I pump on the right and I pump on the left
If you don't dig the pumpin I could really care less
Increase my supply, increase my supply baby

Pumpin ain't pumpin ain't easy woman [repeat 3X]
Pumpin ain't pumpin ain't easy...

Lexie Update

I've been spending all my time at the hospital, pumping (ouch), eating, and a bit of sleeping here and there, so blogging has taken a backseat for now. But I wanted to post a quick update for anyone who's still checking in.

Alexandra now weighs 4 pounds, 13 ounces. She'll be allowed to come home once she can eat all of her meals on her own, instead of getting too tired with the bottle and needing to supplement with a feeding tube. She also needs to keep breathing steadily during those feeds -- right now, when she gets really tired of all the exertion during a feed, she sometimes starts breathing shallowly or forgets to breathe for a little while. (This causes what is called a "desat," in which her blood oxygen level starts to decline.) She needs to go a week without a major desat. She had one yesterday, so as of now the earliest she could come home is the 23rd. That said, the clock keeps restarting on the 7 days, so we haven't begun a real countdown yet. Maybe if she gets to 3 or 4 days without a desat while eating well then we'll start to get excited.

People keep telling us "get some sleep now!" As if we're sleeping soundly all night long. I'm pumping regularly, which seriously interferes with my sleep schedule, and to tell you the truth, you don't sleep very soundly when your baby's in the NICU. (This is why NICU parents are given a special phone number to call for an update anytime, day or night.) I know people are just trying to think of something to say, but they really don't fully understand what's going on.

Hopefully it won't be too much longer until Lexie comes home. I'm looking forward to staying in the house all day long with my baby. And to being awakened regularly by her little lungs.