Odds and Ends

Well, Elijah has had a fever and runny nose the last three days. He's still getting fed the usual amounts and hasn't had any problems so far with that. He's miserable, but it's not a set-back, for which I'm thankful. They diagnosed him with a blood infection, which they say is common when they remove PICC lines, so they have him on antibiotics (again), and they are watching him closely.

The day before he got his fever, we successfully breastfed for the first time. It was really exciting. I'll be glad when all my joyful moments with him aren't tempered by moments of pain. He's been in the hospital for 60 days today.

In other news, we are moving in with my mother in three weeks. I have been spending my free moments packing up our odds and ends and making runs to mom's to drop stuff off. Between packing our things, going to the hospital, and frequent breast-pumping sessions, it's been hard to find time to be "wife of the year," but I somehow have managed (smile). Adam and I have been working on his music project, and I was able to help him with lesson plans for his work the other day. All this while making meals. He rewarded me by letting me splurge on a haircut yesterday. We had to spend the morning negotiating length because of my history. Those who know me understand. I've been known to have a mohawk, buzz cut, pixie cuts, and other styles of all shapes, sizes, and colors (Phil was largely responsible for such lunacy.). We settled on a nice, jaw-length style with bangs and lots of layers. If there's a day in the near future where I look presentable, I'll take a picture of it.

I'm going to go exercise now. It should be easier now that I'm not hindered by a soccer-ball-sized belly.

You Know You're a NICU Mom When...

You know you're a NICU mom when...

1. You not only know how to change your baby's diaper and take his temperature, but you also know how to clean and change his ostomy bag, turn off the beeping noise on his IV machine, and connect/disconnect his feeding tube.

2. You don't have to ask what NPO, PO, Bolus, Bili, PICC, PIV, TPN, Dehis, Brady, Desat, Apnea, or Lipids mean.

3. You know better than the nurses do how your baby's surgery wounds, pimples, rashes, and fecal output have improved.

4. You do not find the cow decoration in your baby's nursery to be cute or amusing.

5. All of the nurses, receptionists, security guards, and shuttle drivers know you by name.

6. All of the nurses, receptionists, security guards, and shuttle drivers know your schedule, and if you deviate, they notice and say they missed you.

7. Your breast pump starts talking to you.

Warning: Whining Ahead

Elijah's room has a crib, 4 different monitors, a rocking chair, a recliner, a fridge, and a sink. It has no windows, but it does have a digital clock that marks hours, minutes, and seconds in large green numbers. I have come to think of it as the time box, the coffin where my day goes to die. Time loses all meaning in Elijah's room. The time box doesn't mean where the sun is outside, or when I should eat, or how long I've been there. The time box only means that if the first number hits 8, 11, 2, or 5, we must do something to the baby: change his diaper, check his ostomy, or, if he's really lucky, give him a bottle.

If I happen to emerge from Elijah's room and turn left, I can see out the window. I am always surprised by what I see, namely The Outdoors. If the sun's shining, I'm surprised that there is a sun. If it is night, I am surprised that the day is gone. Anything that happens in The Outdoors is novel to me because I forgot for a while that there was any such thing. When I am in Elijah's room, there is only that room and a box that sucks time up.

We are caught in a groove of waiting. There are no exciting reports or changes. He must get bigger, and that is all. Once he is bigger, it's time for his second operation, the one that puts his intestines back together. After the operation, we start over with his feedings until he lives off of the bottle again. I wish his operation was the magic threshold and we could take him home after that. It's just the first step in a new phase of waiting. It's been seven weeks today, with no projected release date.

On a lighter note, my husband made my first Mother's Day very special. He bought me flowers, made me breakfast, and took me to dinner. Elijah slept through our whole visit, which is good because it helps him gain weight. It was a nice break from the routine, and I really enjoyed having the opportunity to have a sane day. 

Waiting and Waiting and Waiting and Waiting

There was a Code Blue in the NICU the other day. For those of you who are unfamiliar with hospitals, a Code Blue means that a patient is in need of immediate resuscitation due to cardiac or respiratory arrest. I don't know if the baby made it. We passed the mother in the hallway on our way home. Judging by her face, it looked like bad news.

It is easy to forget where I am sometimes. The nurses do such a good job of creating a nursery atmosphere. All of the hallways are named like streets (Starfish Circle, Seahorse Street - Elijah lives on Dolphin Drive). Some of the rooms have swings, baby blankets, and mobiles, and you can hear music in the hallway as you walk by them. Then you see the babies themselves and remember why we're all there. Some babies weigh as little as two pounds. Many can't breathe by themselves. Every moment they are alive is a miracle by the standards of medicine as recent as 50 years ago.

My heart broke for that mother, not because I couldn't imagine her pain, but because I could. I had envisioned that phone call so many times when Elijah was at his sickest. I knew the anguish of watching him stop breathing and imagining life without him. I grieve with her.

I also forget that Phil's gone, not just some of the time, but most of the time. When I remember, my gut feels like lead. Maybe it's just tiredness that makes me forget these things. Or maybe I am coping. It's always better to go through life without constantly dwelling on how bad things are.

Elijah has his very own crib, so we are out of the isolette. If he keeps up his body temperature, he can stay out of it. He also has a bouncy seat. His crib has a mobile that plays classical music, and he's loving it. It calms him right down. He weighed in at 1.91 kilos last night (about 4 lbs 3 oz). We have 1.1 kilos to go before we put him back together.

There are very few things that I count as a success or as progress. Weight gain is one of them. I don't get excited about him coming off the feeding tube or the IV except that those events give him comfort, if only briefly. He came off the feeding tube for a few days, but he had to go right back on it when he didn't tolerate his food well. That is not a victory. Taking out the IV will be nice, even if it just gives him a break for a while, but it is not a victory. Gaining an ounce is a victory. Wearing clothes is a victory. Those are things he won't move backwards from. My Aunt and Uncle gave me very good advice, having walked this path themselves. They told me that every day will feel like two steps forward and one step back. We had a few backward steps the last couple of days. I've become better at managing disappointment, but I'm still desperate to get him home, away from the world where babies stop breathing and their hearts stop beating and their mothers stand helplessly by.