Something in the Air

When I sit still enough for more than a few minutes, I am able to feel just how tired I am.
Most of those times, if I close my eyes for a while, I will usually fall asleep for a few seconds or minutes.
The other day as I held and rocked Tikva in the glider next to her layette, I not only managed to soothe her back into a peaceful sleep, but I ended up rocking myself to sleep too.
Today sitting next to her bed reading a book, I had a hard time keeping my eyes open.

Right now is one of those times - I am sitting in the little sunroom that is in the center of our house, feeling the tiredness in my body, so aware that I could easily fall asleep for the night right now.
But it's only 8:11 PM and in a few hours I need to pump one more time before going to bed, so that I will only have to wake up once in the night to pump again before morning.
That is probably the one and only "advantage" to not having Tikva home with us - longer stretches of sleep at night.
Honestly though, I will happily and with overwhelming joy give up sleeping at night the second she is ready nurse and come home.

Here is what today looked like...
Not an entirely unusual day at UCSF and in the ICN.
One of those days when I realize just how intense it is way up there on the 15th floor of the big hospital on Mt. Parnassus.

It was a regular July day in San Francisco - foggy and gray and windy.
I parked way down in the pink E level of the garage because my usual spots in blue F were dark and creepy since the lights there had gone out.
I came out of the parking garage and crossed the street to the hospital, passing a massive worker strike of UCSF service employees, wearing green t-shirts and holding picket signs and loudspeakers.
Crossing the street in the other direction was a man in an orange prison uniform, handcuffed, being led to or from an appointment by two marshals.
As usual, I passed the "smoking shelter" just outside of the Emergency room entrance to the hospital, trying not to inhale to avoid the smoky air.
There is something so depressing to me about smoking sections, and the irony of this one just outside the Emergency entrance to the hospital isn't lost on me.
Inside the entrance, I walked by another prisoner in handcuffs, waiting with two other marshals who were talking about which one of them had the restraints.

Deep breath...

I walked down the long hallway and waited for the elevator and watched it climb up, stopping occasionally, to the top floor, #15.
I showed my purple ID bracelet - as Dave calls it my "all-access pass to the ICN"- to the woman behind the welcome desk and she buzzed me in.
I walked down two more long hallways and entered into the West Wing and all the way to the back room where Tikva was.
On the way in, I talked to Roberta, the main doctor who has been following Tikva for the past 5 weeks, and got the latest on her daily x-ray results.
I found out when I arrived at Tikva's bedside that she was back on the nasal canula and doing well- more progress.
Then Roberta said something about Tikva's neighbor who arrived yesterday - Ana Estrella - needing to go on the ECMO machine.
And one of the nurses mentioned that Tikva and one other baby would need to move to a different bay in the West Wing in order to make room for it all.

So now Tikva is in the middle bay of the West Wing, just across from her friend Kalmin, in a space that is so much more peaceful than the intensity of the back room where she has been since birth.
I immediately asked the charge nurse today, Jennifer, if she could please not be moved again - it's time to keep Tikva out of that intense back space where all the babies are in such highly critical condition.
It's stressful there, and the energy is sometimes just too much - not just for Tikva but also for her parents.
Jennifer said that if she does move again, it will be forward, not backward.
Sounds like a plan to me.

In between each bay of the West Wing, there are high windows that sometimes have a curtain pulled across them.
Today as I sat with Tikva I could see through the window into the back room as it became an operating room once again.
There were about 20 people, all in full surgical scrubs, in that room, and a lot of machines.
This time they were putting in a huge line into one of the main arteries of Ana Estrella's neck into her heart.
Through this line, they attached the ECMO machine, which is now doing the work of oxygenating Ana Estrella's blood for her.
Essentially, her blood now runs out of her body, through the machine, and back into her body with every beat of her heart.

ECMO means extracorporeal membrane oxygenation.
This machine is the final one used in the worst of circumstances... They try everything else first before they use it.
We were told all about it before Tikva was born, and the possibility of her needing it scared me.
Long term, it's very hard on the body to be on ECMO.
Not all hospitals have ECMO machines.
We were glad to know UCSF has them, and also relieved that Tikva never needed it.

As I sat by Tikva's layette in her new bay, watching doctors and nurses and respiratory therapists and residents walk in and out of the back bay throughout the day, I realized once again how far we've come.
Looking down at Tikva and the simple nasal canula giving her oxygen through a little tube in her nostrils, thinking about little Ana Estrella on ECMO, thinking about all the machines Tikva has been on to help her breathe, I felt the most enormous gratitude for where Tikva is, for the leaps she has made in 5 weeks, for the fact that each day she is less and less dependent on machines and drugs.

Driving to UCSF this morning, I had tears in my eyes as I felt how draining this whole experience is.
I was feeling so tired of it all - the repetition, the day after day of seeing my little girl in the hospital and not being able to bring her home at the end of the day.
The surreal feeling of those days when I go somewhere without her and feel as though she hasn't been born yet, because it's as if nothing has changed from when I had just one child.
The strangeness of having a baby girl but not having her with me all the time.
This morning I felt such a longing to move on from this stage and into the next, and such an awareness that it is still going to be a while before Tikva is strong enough to come home.
Yet after what I saw today in the ICN, I was able to come back to the present, to being just where I am, where Tikva is, where we are.

In 5 weeks, I have seen so much in the ICN.
Sometimes I feel as though I blend into the walls and go unnoticed because I've been there for a while, and the doctors and nurses let down their guard and I am able to see probably more than I should be seeing.
Today I recognized that I am Tikva's mother, her primary caregiver, even in a room of nurses and doctors.
I was the one who decided that a nurse who had disturbed Tikva to take blood from her would not be allowed to disturb her a second time when she realized she hadn't gotten enough blood.
I was the one who changed Tikva's diapers three times.
I was the one who suctioned out her mouth and changed the cloth diaper under her mouth when she spit up some of her formula.
And when I did these things, I wasn't "playing nurse" - I was being Tikva's mother.
It may be a while before Tikva leaves the ICN, but I am not going to wait until then to be her Mama Bear.

Tonight and in the coming days and weeks, please add Ana Estrella to your prayers.
She breathed in meconium during her birth and is now in critical condition.
Thankfully, Kalmin is doing better every day as the antibiotics are helping to clear his pneumonia.
Tikva and I are glad to be in the same bay as our little friend and his parents again.
J. Ann is doing really well, her father told me today.
She has no brain damage from the oxygen she lost before she was born, no longer needs breathing assistance, and today I saw her in her mother's arms.
Brian, the other CDH baby in the West Wing, had his surgery and is on his own path of healing.
I've given his parents - who don't speak any English - a lot of smiles lately.
I don't think they have a clue that I know so intimately what they are going through.

I thought today that, after all I've seen in the ICN, I am forever changed.
While I know that most babies are born smoothly and healthy, and that what I am seeing is a tiny sliver of the picture.
And yet I wonder, should we have another child one day, if I would be able to choose to have my baby at home like I imagined I would have Dahlia and Tikva.
I don't need to answer that question now, but it is definitely something I think about.

After many hours sitting next to sleeping Tikva, when no one was nudging her and the commotion all around us had subsided, she opened her eyes and just looked at me.
I lay my face right next to her on the layette and we talked and sang and gazed at each other.
I touched the softest spot of skin on her body, the bottom of her cheek just to the right of her pointy chin.
We grounded our energies together and just connected, calmly, after a busy day that my girl chose to mostly sleep through.
I stroked her eyebrows and helped her drift back into sleep.
I watched and listened as she sucked on her pacifier making Maggie Simpson sounds.
Then I kissed her third eye and told her I'd see her tomorrow.

I retraced my steps to the elevator, down 15 flights, back down the long hallway and out the door and past the smoking shelter.
To my left the workers' strike continued, and the man on the loudspeaker was asking, "Are you ready to fight?!"
No, I'm not ready to fight.
I'm not fighting, this isn't a fight.
I come in peace and in love - that is all my daughter needs to support her journey.
I took the garage elevator back down to pink E, got into my car, left the garage and drove away from UCSF to go pick up Dahlia at a friend's house.

Even though it's all I've known since Tikva was born, it is still strange to leave the hospital each day without her.
As I drove today, I had a flash forward of being in a yellow kitchen in a beautiful house with Dahlia and Tikva a few years from now.
Both of my girls are happy and healthy and well and chatting, having a snack.
I've seen this vision before, for many years actually, only today the little girl in the vision had a name and a face.
There are such good things ahead, Tikva Ahava.
Such good things.