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.

Living in the NICU

Lactation Room in the NICU with pump in foreground

I have to pump at least 9 times a day. I really cannot have more than 4 hours between pumpings. My day starts at 4 am during the week. I wake up and pump and Josh calls the NICU and we get our morning update. It is usually just her weight and vent settings.

I try to sleep a bit more but am up by 7 am. The pump pieces must be sterilized, hungry moms need breakfast, and cats need to be paid attention. My wonderful ride is there by 9 am to whisk me away to the hospital.

Entrance to the NICU at Memorial Hermann Southwest

Walking down the hall to Lillian’s room is filled with such anticipation. My dad and I go into her room and peek at her. Sometimes we’re lucky and they are changing her diaper which means a much better view. We wait for the nurse practitioner to give us the morning update and then it is time to pump. The rest of my day is spent reading by her bedside, singing or talking to Lillian, assisting with diaper changes, and pumping. Josh arrives as soon as he can after work and we spend some family time together.

Entrance to the Daisy Room

Tuesday is my hardest day. It is grand rounds day. I go and sit at a big table with all the people on Lillian’s team. It feels somewhat like the inquisition at the end of that table with everyone looking at you. I learn all the scary things she is facing in the next couple of weeks. I have learned that it is okay to have a bad day — especially on Tuesdays.

I downloaded an app that allows me to blog by Lill’s bedside. So I expect to be more of a presence here in the coming weeks. I’ll leave the details to my dad. It is much easier for me to look at the big picture. All prayers and good thoughts are always appreciated.