On Being a Level 3 Parent

Lillian with Wires

There is a distinct difference between level 3 parents and level 2 parents. Level 3 is where the sickest and smallest babies go. There are occasionally exceptions to this: when level 2 is full, loud, full term babies will scream throughout level 3. This can actually be shocking as none of the babies who usually should be in level 3 make much noise.

You can tell level 3 parents by their expressions: joyous on a good day, tear streaked or grimly determined on a bad day, stressed on an indeterminate day. We tend to be quiet and completely focused on our babies. There is not a lot of fraternization between the parents: we are so full of dealing with our own babies. We give each other encouraging looks as we pass in the hallway.  In level 3, where each baby is in her own room, your baby becomes a world unto herself. It’s often unnerving to reenter the real world after spending all day with Lills.

Level 3 parents whom I have seen move to level 2 become more relaxed, happy people. They understand how far they have traveled to get there, and are truly grateful to be one step closer to going home. We celebrate with them when we see someone graduating to level 2, praying that our day is not too far in the future.

The parents who went straight to level 2 are kind of like the new level 3ers. They are scared and confused about how exactly they got here. I have twice had  moms cry to me in the lactation room about their tiny babies. Feeling great sympathy, I asked how small: “4 pounds and the doctors say we may be here a couple weeks. How big is your baby?”

“2 pounds,” I mumble, “and we’ll be happy to have her home by Christmas.” It’s hard for me because I want to be where they are so much; I have to remember that their road is as hard and scary: just a little bit shorter.

Under the high stress in level 3, superstitions quickly pop up. The universal one seems to revolve around the parents’ bracelets. In order to identify you as a parent and link your child to you, the hospital issues bracelets — you can never cut it off unless your baby is discharged; it can wear out and fall off, but you can never, ever cut it off. Other personal superstitions spring up about hand washing, time of visit, length of visit etc.. My personal superstition (if it is  really one) revolves around my ride. My dad drops me off in the morning; if he can stay, the day will be fairly uneventful; however, if he has to go and I am by myself all hell breaks loose. I will get hard scary news and have a mini meltdown or Lillian will have an awful day or any number of terrifying things. It does not really happen every time: it just seems that way.

I am slowly beginning to get the pattern to the bad days. I go have a meltdown in the lactation room (usually I am there early enough to have it to myself) Then I go back to be with Lillian. Bad days are impossibly long and difficult. One day at a time is easy on good days — even on so-so days — and impossible on bad days. But on the worst days, when I am not sure I can do this, Lillian surprises me. She reaches out and grabs me and won’t let go, reminding me that for her I can survive pretty much anything.

Born of Frustration

Lillian and her mom

I have never been good with big lessons. The moment someone tells me I ought to do something, I dig in my heels. Patience is a big lesson I have never really managed to learn. The thing about micro preemies is everything goes so s-l-o-w. We make a little bit of progress one day and it’s undone the next.

I seem to be having the hardest time with the little progress aspect of the NICU. I realize that maybe I ought to take this time to learn patience. But since I “ought” to I don’t want to. As Josh astutely pointed out, I am the Veruca Salt of level 3: I want it now!

Her breathing progresses in the tiniest of steps. The main thing is that her lungs make minuscule progress every day. I don’t know how other parents sit like saints at their child’s bedside. I sit there chanting “grow lungs grow!”  I can work myself into a horrible mood in seconds by dwelling on her breathing.

But, some days I astonish myself with how much patience I’ve gained. I don’t watch her alarms, trusting Lillian to work her way out of any “de-sats”, which she does regularly with no trouble. The next day I am made of frustration. Nothing is going fast enough, and I can get obsessive about every alarm beep. I even hear the alarms in my sleep.

Lillian in her Mom's hands

Unfortunately Lillian is her mother’s daughter. As soon as the Doctor thinks she ought to be weaned from the vent, she digs in her heels and refuses to budge. She is almost a month old and already has a determined face. It says, “I am determined to ruin the day of anyone who crosses me.” I am told this is a good sign.

So Lillian and I both wait for her to get big. We both are frustrated by the long road ahead. Hey, at least we’re not alone on that road. I can hold her hand, and sometimes she even holds mine.