Filling Tikva's Well

Yesterday afternoon, after we got home from the hospital and picking up Dahlia from school, I couldn't keep my eyes open so I got in bed and quickly drifted into a nap.
I slept for about an hour and a half and I dreamt about Tikva.
I dreamt about the day we brought Tikva home.
Not of leaving the hospital, but of arriving home and adjusting to caring for her here.
In the dream I thought we didn't have any diapers, and discovered that the hospital had sent us home with some.
In the dream I was negotiating how I would bathe Tikva while she wore her nasal canula for oxygen.
In the dream it was a little daunting to all of a sudden find ourselves as her primary caregivers - finally.
And at the same time, it felt SO GOOD.

I woke up from this dream with an incredible clarity about exactly what Tikva needs in order to come home.
This is where you all come in...

Yesterday Dave and I spent a good chunk of the middle of the day with Tikva in her little room in the ICN.
She was incredibly alert for a lot of the time, looking around, looking at her nurse Jennifer, looking at us.
She had moments when she was peaceful and still, resting, dozing, sleeping deeply.
And moments when she was really agitated.

I've used that word a lot because it's a word the nurses and doctors use a lot.
Maybe you're wondering what it means and looks like when Tikva gets agitated.
I'll explain...

Tikva's greatest challenge right now is breathing in a way that brings enough oxygen into her bloodstream and therefore to her body.
Her second greatest challenge is digesting her milk without the reflux bringing it back up.
A third challenge which came up yesterday is making sure that none of the spit-up milk gets inhaled into her lungs, which can cause fluid to accumulate there and lead to pneumonia.
And finally, the pulmonary hypertension in her heart and lungs makes breathing even more challenging, because not enough oxygen gets pumped into her lungs and therefore into her body.

A term they use a lot when talking about CDH babies is "air hungry," meaning that they struggle to get enough oxygen with each breath.
This is why Tikva gets extra oxygen through the high-flow nasal canula.
And not enough oxygen is often what makes Tikva agitated.
She'll try to take a deep enough breath, feel the oxygenation in her blood not being quiet enough, this can make her anxious, and the anxiety can make her more agitated and less able to catch her breath and relax.
Some days she is able to bounce back from this experience and calm down faster than others.

It's never easy to watch her go through these moments.
I wish I could do the work for her, relieve her of her struggle and make it my own.
But what I can do is sit with her and put my hand on her head, hold her hand, talk to her quietly, close my eyes and breathe deeply myself, try to help ground her.

Digestion is also a lot of work for Tikva.
CDH babies have reflux, this is something we knew about all along.
It's something they usually outgrow, but it requires their bodies being big and strong enough to fully digest milk without some of it coming back up.
It has to do with not having a full diaphragm, and that she is working so hard on everything in her little body.
Reflux can agitate her too, as it can agitate all babies when they spit up.
Sometime today, they are going to lower Tikva's feeding tube so that it empties out past her stomach directly into her jejunum, which is the top part of the small intestine.
They are also giving Tikva her milk on continuous feeds, which means that she gets milk continually over 24 hours.
This will help minimize reflux and reduce the risk of pneumonia.

Tikva is now getting 50% mama's milk and 50% formula, after a month on just formula.
I can't tell you how good it felt to pump my milk yesterday, give it to the nurse, and watch it go directly into the large syringe that is attached to her feeding tube.
No need for freezing or even refrigerating.

Here is another thing the nurses and doctors say a lot: That Tikva, like all CDH infants, doesn't have a lot of reserve.
This is all part of the agitation.
She gets air hungry, she tries to get enough oxygen and can't, it makes her anxious (I know it would make me anxious), she gets agitated, and because she doesn't have enough in her reserve to catch her breath when she gets worked up, the oxygen saturation in her blood lowers and it can take a lot of external support to help her bounce back.

Complicated, isn't it?
You're probably wondering what this all has to do with you, and how you can be part of bringing Tikva home...

Yesterday as I sat with Tikva through a period of agitation caused both by breathing and digesting, I closed my eyes.
I felt a wave of gratitude for my ability to BREATHE DEEPLY and for my healthy and strong digestive system.
I breathed really deeply and pictured myself standing with my feet firmly rooted in the ground, holding Tikva's hands as she stood just in front of me, her little feet also firmly rooted in the ground.
And I visualized a grounding channel in both of us traveling from the bottoms of our tailbones all the way from the 15th floor ICN down the 15 flights to the street, further down through Mt. Parnassus to sea level, and further still until it reached the very core of the earth.
Grounding, for both of us, helping my little baby girl get grounded and calm her energy.

As I breathed deeply, I pictured Tikva's lungs and sent them extra energy and strength - into the two chambers of her lungs, into the four chambers of her heart, into all the vessels in each of these important organs, into her entire bloodstream.
I pictured her stomach and intestines, her entire digestive system - from her mouth with its luscious lips all the way to her cute little tush - and sent them all extra energy and strength.
And I made it SPECIFIC: strong lungs, large lungs, fully developed lungs, an abundance of vessels coursing through her lungs and providing the capacity to hold in all the oxygen she needs to breathe deeply, consistently, and cry out loudly and powerfully.
I made it SPECIFIC: a strong and effective digestive system that absorbs all the nutrients she needs, a stomach that holds food and digests it fully, healthy poops, painless ease from start to finish, the ability to fully digest my milk, to swallow milk herself when her feeding tube comes out, to nurse from my breast to get all the nutrients and comfort she needs.
I made it SPECIFIC: a heart and lungs that are strong and complete and healthy, able to pump oxygenated and healthy blood through her entire body, giving it all the strength and RESERVE it needs, always.
I made it SPECIFIC: a resilient and healthy body that is free from infection and illness, VITAL, THRIVING, FULL OF ENERGY AND RESERVE for whatever Tikva may encounter.

Tikva is working really hard - it is so clear when you see her and feel her that she is doing all she can to strengthen and grow.
It is a time of great patience for Tikva and for us - her healing now is happening on a very deep level, and it is happening more slowly and completely.
Tikva is like a beginning runner preparing step by step for a marathon.
Her healing is going to take time and a lot of focused energy.

I want to ask you to help Tikva now by making your prayers specific.
By holding visions that are specific when it comes to her lungs, her digestion, her resilience, her health.

WHEN YOU THINK ABOUT TIKVA, ABOUT US, AND WONDER HOW YOU CAN HELP, THIS IS HOW:

Pray for these specific aspects of her healing.
Send her energy that can fill the well in her being and build up her reserve.
Hold specific visions for ease of breath, calm, smooth digestion, growth, a healing of the pulmonary hypertension, increased health, resilience, wellness, less and less tubes and wires until nothing needs to be attached and Tikva can wiggle freely around.
And yes, hold specific visions too of Tikva in a carseat, Tikva on a blanket in the sunshine at the park, Tikva snuggling with Dahlia in our bed, Tikva dozing happily in a sling on one of us.

When I awoke from my nap yesterday, I felt an incredible clarity about this.
If every one who has been holding Tikva so lovingly since before she was born sends prayers and energy and visions out for these specific realities, we can help Tikva heal deeply and bring her home.

The vision I hold now is of carrying Tikva close to my body in a sling at High Holy Day services this year.
Celebrating Rosh Hashanah and Yom Kippur with our community and singing songs to my girl as she dozes and breathes peacefully against my chest.
When I close my eyes and dream of this, I breathe deeply and send my breath to Tikva at the hospital, and I picture her own lungs growing, strengthening and healing with every breath she and I take together.