Roller Coaster Loop

Have you ever ridden a roller coaster that loops a few times and brings you upside down?
That's how time feels right now - moving in loops, rather than on a straight line.
We're still moving in one direction, but in order to do so, we have to loop back around so that it feels like we are going backwards.
Right now it feels like we are suspended on the upside down part of a loop, waiting to roll downward to coast forward again.

The past three days have been probably the hardest of my life, and I don't know if there are more even harder days ahead.
Tikva has been reintubated and is back on the ventilator.
The doctors are trying to figure out what is going on.
The oxygen in Tikva's blood desaturates on a dime, not just from agitation but sometimes also out of nowhere in the middle of a deep sleep.
It's really hard to bring her back to stability and good numbers and requires a lot of hand ventilating and extra support, and a lot of doctors and nurses and respiratory therapists running into her room really fast to help her.

Two days ago that experience terrified me; I thought I was going to lose my girl.
I held onto my husband for dear life.
Today I noticed myself getting used to it sort of, even though it makes me want to cry without stopping and fills me with fear each time.
Tonight for the first time, when Dave and I left at 10:30 at night, I was afraid to leave.
For fear of...

We have done a lot to advocate for the needs of our girl the past few days.
Since the experience of her being with a less experienced nurse two days ago who was not prepared for her sudden and extreme desaturations.
That's when I stepped in and saw the color of her skin and noticed that she was gasping for air really slowly - such terror in my heart - and told the nurse to call someone and turn on the extra oxygen so I could hold the mask in front of her face.
That's when I stepped in as her MOM and did what Tikva needed and that brought the doctors - within seconds - in a huge hoard to her isolation room.
It made me so scared to think what if I hadn't been there... but I was there, I was meant to be there.
Tikva bounced back; she bounces back, but it takes a lot of help; and she desats more now, and more intensely, bounces back more slowly.

DEEP BREATH.
Each time I remember to take a deep breath, I do it for my Baby Girl.
What an incredible privilege it is to be able to breathe so deeply.

Tonight I reminded Tikva what I remind her almost every day: That I am always in her heart and she is always in mine.
No matter what.
I also told her this tonight: That I am not giving up, that I am in it for the long haul.
No matter what.

Light Lou With Love

I am struck on a deep level these days by the reality that good people sometimes become very sick.
I am struck as deeply by love as it is expressed by a parent.
And I believe even more deeply in the healing power of love, community and collective energy.

Please read the following about Lou, a special young man whom I don't know personally but have been aware of for over a year now.
He is my age - 37 - and his body is battling cancer.
I can tell that in his community, which distantly intersects my own, he is as much of a teacher as Tikva is.

My humble prayers go out to Lou and his family.
Light and love and hope to you, Lou.

David's Words

Dave wrote about today on his blog...

A HUGELY IMPORTANT REQUEST

Please pray hard for Tikva right now.
Really hard, from the deepest part of your being.
She needs all the love and strength and calm and faith you can muster.
All the incredible visions for the development of her lungs, the resilience of her being.
Today was one of the hardest experiences I have ever had in the past 7 weeks, in the past 6 months.
I don't have the energy to write in more detail right now, but I will soon.

And one more thing:
Please refrain from asking when Tikva will be coming home.
It is a question I can't answer, and nor can the doctors.
The attending told us today that they are in it for the long haul at the ICN.
And it is going to be a long road to Tikva's full and complete healing.

Huge gratitude for the ongoing support, for the meals that continue to appear at our door and nourish us, for all your love in so many forms.
Please keep praying and keep holding those visions.
And sending love to our Amazing Baby Girl.

How Much Good Can YOU Do?

(From our dear friend Tracy. Is this woman special or what?!)

This morning at the gym, for no particular reason, I decided to hop on a machine I had struggled through and given up on when I first started my routine a few weeks ago. Something was drawing me back to this machine, and while I didn't know why at first, I decided to listen to that something and try the machine again. I stepped on the pedals, played with the buttons as I set my weight and distance, and all of the sudden it hit me. I needed to be on this machine to struggle, to huff and puff and blow lots of good healthy air towards my friend Tikva. Tikva, born June 10, has been thriving and amazing everyone around her despite life-threatening circumstances. Her mom, Gal, sent out a request for specific visions and prayers to help Tikva breathe easily, digest her healthy milk and formula without reflux, and continue to thrive and amaze all of the people in her life. As I stepped onto this machine, I realized that I could do my part to help Tikva by asking God to temporarily allow ME to struggle for her while I exercised. For 15 minutes, I decided to huff and puff and sweat and struggle as hard as I could so that Tikva could take a break and breathe easily. I don't know how it turned out on Tikva's end, but for me, my prayer resulted in an amazing and empowering workout. I did struggle non-stop while on the machine, but I made it through, smiling hugely as I pictured Tikva's gorgeous face and strong, healthy lungs.

So I have a charge for any of you who read this: Whenever you workout or challenge yourself physically, take a minute to ask God to let YOU struggle so that sweet baby girl can breathe easily for the duration of your exercise. Send her all of the good, strong breaths you can exhale. Push yourself as hard as you can so she can relax and enjoy the simple pleasure of non agitated breathing.

Imagine the good we could do for Tikva and her family if we all came together to do this for her.

As you exercise and pray, remind yourself and God that You're With Tikva. I know I am :)

Amazing Footage

Please check out the amazing new videos on Dave's website.
The latest videos are at the bottom of the list.

A Sigh of Relief

This afternoon I visited the West Wing again to see Kalmin and his parents.
Kalmin is adorable, and was enjoying Frank Sinatra playing from his stuffed animal MP3 player.
While I was there, in the spot Tikva occupied for so many weeks, I saw that Dana Estrella is off the ECMO machine.
Not only that, but I don't think she is on any kind of ventilation support.
She looked good, and has a head of the thickest black hair.
I don't know more, but it was good to see her sleeping peacefully on her bed without that huge complex machine pumping her blood.
The ICN is an intense place - thus the use of "intensive" in the name - and babies sometimes don't make it.
But many times they do, and they leave the ICN and go on to thrive healthily in their lives.
Many times the ICN is simply a place where they can get a little help with their beginnings.
Dave keeps saying that this experience is not going to define who Tikva is for the rest of her life, and he is right.
This experience is just a part of her beginning, and it is here that she is building the strong foundation of health that will allow her to soar.

A Great Need

by Rumi

Out
Of a great need
We are all holding hands
And climbing,
Not loving is a letting go.
Listen,
The terrain around here
Is
Far Too
Dangerous
For That

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.

Sweetness

My favorite moments are when I get to hold my girl. I can feel her softness, smell her yumminess, and just hold her amazing body. It feels incredibly natural and so familiar.


Notice how Tikva's little arm found her way into my shirt, where she nestled her hand in between my breasts.


Tikva's new private room... aah... Her bed (and Tikva) is in the bottom right corner of the photo. The prayer flags Sharon made which our friends wrote on at Tikva's blessing gathering in early May hang on the wall.


Tikva was super alert and incredibly peaceful when I visited last night. She lay really still and just looked with wide eyes.


Eventually she dozed off. Deep healing requires a lot of rest. After a more challenging day with a nurse I didn't love, I enjoyed connecting with two more seasoned nurses who work the night shift. Very special people, taking very wonderful care of Tikva.


Getting stronger with every day. I call her Tikva-Vader, Force of Light.


The funny hat that holds Tikva's c-pap on her face. We'll be lucky if we ever succeed in getting her to wear a hat in the future.

Witness & Participant

I am a witness to Tikva's journey.
I am a participant on the journey she and I share.
I am her support.
I am capable of helping her ground her energy.
I hold her and I love her and I touch her soft skin and I love her like only her mother can.

Lately I have been recognizing that, right now, I am not her primary caregiver.
At the end of a visit to see her and hold her and rub her back and adjust her c-pap mask, I leave the hospital without her.
Today on the way out of the ICN and down the elevator, I saw two new moms and dads leave with their new babies in carseats.
In the last 6 weeks, I have probably seen this 50 times.
For 40 days, I have left the hospital without my baby.
For probably at least 40 more, I will continue to leave without her.

That is why sometimes I feel like a witness, and other times I feel like a participant.
I have assumed my role at the ICN, and the nurses and doctors all know me and flow with it.
I change Tikva's diaper, I suction the goop from her mouth, I make suggestions to the nurses and doctors and respiratory therapists about what might be helpful to her.
I hold her and talk to her and sing to her and pump milk that soon she will drink.
I do all I can under the circumstances.

Just yesterday, Tikva's cousin Isaac was born.
His birth was blessedly smooth and he was born healthy and strong and easily.
Deep relief flowed through me, a reminder that birth can go smoothly and babies can be born without drama.
Just the reminder I needed after last Friday.
Such excitement and joy for Dave's cousin Dan and his wife Deidre, and the happiest new grandparents ever, Dave's aunt and uncle.
The newest little member of our family, and a shared vision we all hold of the three cousins - Isaac and Tikva and Dahlia - sitting together with all of us grown-ups for a big shared meal with the whole family.
Soon...

A twinge of envy... mostly touching my deep desire to hold my child without any wires or breathing mask or worry.
A desire to comfort her with my breast, soothe the restlessness that all babies feel and which only a mother can soothe.
A desire to put Tikva in her own carseat, pack up all her little belongings, say goodbye to the ICN once and for all, and this time take her into that elevator, out the exit, into the car, and bring her home.

I think of all the things I took for granted with Dahlia, because I could never know how good I had it.
It's a good reminder now not to miss the preciousness of all the moments she and I share.
In the same way that she is already four and a half years old, I know that before I know it she will be fourteen, then twenty five, then herself a mother, and I'll wonder where the time went.
And one day when Tikva is four and a half, or fourteen or twenty five, we'll have a conversation about this time and I'll be able to say to her, "Oh yes, I remember the summer of 2008."
And it will be just a memory from the past.

The other day I was sitting next to Tikva in her little private room pumping milk.
She started stirring so I reached up and took her tiny little hand in mine.
I felt its tiny-ness, its softness.
Later that night after reading Dahlia a book and turning off her light, I took her hand in mine.
I was struck by how much bigger it felt than Tikva's.
Four and a half years and her hand is so much bigger.
Before I know it, Tikva's hand will feel that big in mine.

In the ICN, people make donations of glider rocking chairs, and some of them have little plaques in memory of a child lost or in recognition of ICN staff.
There is one that reads, "Love your child. Face your fears. These moments are precious."
I read this plaque for the first time during the first or second week Tikva was in the ICN.
When I did, I completely lost it and started to cry.
But it is pure truth, because you really never know what is ahead when you choose to love a child.
It's one of the scariest things ever, no matter how healthy your child is.
Yet for me, being mother to Dahlia and Tikva is the greatest gift I have ever received.
It is a gift I receive over and over, each day.
These moments are truly precious.

Heartbreak

A baby died in the ICN today.
His name was Raul, and he was no more than a day or two old.
As his parents and family members wailed, he went back to the spirit world.

I watched his father walk hunched over, crying tears the depth of which I pray I will never know.
We are not made strong enough to outlive our children without being marked for life.
No matter how young or old the child is.

Just behind the father, a young man - an uncle perhaps - carried Raul in a bundle of blankets just minutes after he passed.
Out of the ICN, I assumed to a room where the rest of his family waited.
I have never seen or felt death so close, not even after more than 5 weeks in the ICN.

Stephanie the social worker was a rock today.
She held Raul's family.
She held the other parents in the ICN, like me and Dave, who witnessed all the sorrow.
She held Sue, Raul's nurse, a rock of a woman who has clearly been a nurse for decades, whose eyes were red from tears.

Another Sue, one of the respiratory therapists, was near the end of her rope today from darting around all day to take care of the breathing of so many babies in critical condition.
Robin, today's charge nurse, was solid as a rock, calm, serious, present for all who needed her.
She told me that not only is the ICN almost full, but there is really high acuity - that means most of the babies are in critical or chronic need.

Today I hated it there.
I wanted so much to take Tikva home with me.

Yet amid this horrible grief, this crazy intense chaos, we received a blessing:
Tikva was going to be moved again, this time to her very own private room.
Calm, quiet, peace, and the beeping of only her monitor and nobody else's.
She's starting on a new breathing treatment for her pulmonary hypertension, and the treatment can cause a rash.
Any baby with a rash needs to be isolated, even if it isn't contagious.

Incredible relief.
A chance for Tikva - and all of us - to get some space, some serenity.
A quiet place where she can do the incredibly deep healing she is so completely engaged in right now.
A break from witnessing every second the intensity of the ICN.
A break from seeing the faces of all the other parents all day long.

I am completely unable to not connect in some part of my heart to what is around me.
To do so, I would have to turn off my compassion, and that is physically impossible for me.
Perhaps God knows that, and decided that a little isolation would do me good along with Tikva.

When we got Tikva settled in her new space, she was still agitated and having a hard time settling down.
I thought about what Allyson would do for Tikva, and suggested to her nurse that maybe she could use a dose of Adavan to calm her and help her get much needed sleep.
When another nurse brought the Adavan, I asked her if she might have an extra dose for me.

Dave wrote on his blog about today... Check out the videos there too, to get a sense of what our days are like in the ICN.

Maybe today won't be the day when I stop eating chocolate on a daily basis.
I was going to start today, substitute fruit for chocolate.
But several times, as I passed one of Raul's many family members in the hallway, I felt drawn to the little Crunch bars in the candy bowl in Stephanie's office.
And when I got home today, I realized that chocolate may be my saving grace.
I don't think I will get through this experience without chocolate.
I am completely serious.

I took the N Judah home for the first time today because Dave left several hours before me to get Dahlia from school.
It took 25 minutes to arrive at the bus stop, where I sat in a scarf and hat and sweater because in July in that part of San Francisco it's cold.
When it arrived, it was packed with people coming home after a long week.
I felt numb, unable to connect with what I was feeling about today.
The bus driver was a gem, making funny announcements over the loudspeaker to relieve stress on the crowded bus.
When we got to the stop on the corner where our house is, I smiled and wished him a good night, and he did the same.

Be nice to each other out there.
Really nice.
Kiss your children, kiss your loved ones, smile at strangers.
Life is so fragile, and so precious.
Way too short to waste complaining.
Way too special to expend energy being hard on ourselves or each other.

Love and hope and faith.
On days like today - and I pray I never have another day like it - these are what hold me together.

Mighty Mighty

Several nurses so far have commented on how strong Tikva is.
Yup, that's our mighty girl.
She's quickly moving up to 9 pounds, and I love the look and feel of the little rolls of chub on her body.


Tikva definitely knows what she likes and dislikes, and she knows how to show it with great strength, and now a mighty cry to boot.
Today at our "big picture" meeting with the social worker and two doctors, even the more cynical of the doctors admitted that Tikva is exceeding their expectations.
No surprise; that's our mighty girl.


We talked about the three key things Tikva is working on, which they are helping her with:
Strengthening her lungs so that she can breathe completely on her own, eventually without needing oxygen.
Reducing pulmonary hypertension until it is no longer an issue.
Teaching her to get all of her nourishment from the nipple - mine and the bottle - while minimizing any reflux that may occur as a result of her CDH.


And here is what was so wonderful about our conversation:
That the doctors were on the same page as we were, and didn't tell us anything unexpected.
That they were using the word "when" Tikva comes home, not "if" Tikva comes home.
That they acknowledged how far she's already come.
That the work still ahead feels surmountable, realistic, concrete.


I asked them a question on behalf of all of you who have asked it of us: How long until Tikva can come home?
This isn't a question Dave or I needed an answer to, but I asked because I haven't known how to respond when you have asked us.
Doctors don't give you absolute answers, and they didn't give us a time frame.
But they did confirm what we anticipated, that Tikva has at least another month in the ICN, possibly longer.
And that really they can't know how it all will unfold, or at what rate.
What we did leave with was an understanding of the steps that need to happen so that she is ready to come home.

She needs to be breathing mostly on her own, perhaps with the help of a little oxygen which she can continue to get once she does come home.
She needs to be able to get all of her nutrients from oral feeding with breast and bottle - and this may mean my milk supplemented with additional calories.
She needs to be more stable - her heart rate, her respiratory rate, and her pulmonary hypertension.
They are going to try some new things for the hypertension, things that she could continue at home if needed, since right now she gets nitric oxide and that is something she can only get in the hospital.
And again... confirmation that she is right where she should be, and that she has come so far already in just 5 weeks.

Five weeks...

And here is the most beautiful part:
When we walked out of the meeting, we ran into Hunter and his parents in the hallway.
They had come down from the very north of California for the monthly CDH follow-up clinic at UCSF.
Katie, Hunter's mom, was holding Hunter's sleeping 2 year old brother in her arms.
Greg, Hunter's dad, was holding their stuff.
And someone I assumed was Katie's sister had sleeping Hunter in a Baby Bjorn.
Hunter was getting oxygen through the same kind of nasal canula that Tikva now uses, and the sister carried the small tank of oxygen in a little backpack.
Hunter looked healthy and chubby and well and peaceful.
And the thought of Tikva needing oxygen when she comes home - if she does - did not feel daunting after I saw Hunter.
Hunter was in the hospital for 2 months, and he'd been home now for 3 weeks.
They looked happy, and he looked well.
They made me smile as I went back to the ICN to spend a little more time with my girl.

It's a long road, and we have at least 5 more weeks ahead before Tikva will be ready to walk out of the hospital with us in her own sling.
Some days are easier than others, and I end each day pretty exhausted even if it is an easier day.
But as I said to my father-in-law, Stan, tonight: this is where I am.
Tikva is my daughter, and I wouldn't trade her for the world.
This is our journey together, and it is a true gift to have been chosen by her to accompany her on her own mighty adventure.

We wore our "I'm with Tikva" t-shirts to the meeting today.
This is where we are, right here with Tikva, and this is where we'll be as long as she needs us to support her in this way.
Whatever she will need next, we will give it to her.
As Dave says when people ask him when she'll be able to leave the ICN, "Not a day sooner or a day later than when she's ready."
The doctors and nurses all agree with us that she's the one in charge.

Got Milk?

Yes! I certainly do.
8 more days and Tikva can start having my milk again instead of formula.
Soon she will also start learning to nipple feed from a bottle.
And yes, she will also start learning to nurse from my breast.
I took this photo this morning after putting away the last bottle that would fit into the sub-zero freezer in the garage.
In addition to this frozen milk, I also have two large boxes in the freezer at UCSF, and now some new bottles in our kitchen freezer.
That's a lot of milk, but the nurses and lactation consultant at the ICN have told me to save it all, because once Tikva is drinking it again, it will go fast.
So... I continue to pump my milk, and look forward to when my Baby Girl is drinking it directly from my breast.

Allyson

Allyson is Tikva's most favorite nurse, and ours.
She is one of our daughter's primary nurses, which means that when she is on a shift, she cares for Tikva.
There are a few other primary nurses on Tikva's team, and they are all gems.

Allyson is truly special, and she and Tikva have a special connection.
I would even say it could be an old soul connection.
I believe that Allyson has helped Tikva come as far as she's come already on her journey.

Allyson is going on a two-week vacation tomorrow, and we are going to miss her a ton.
When I called this evening just before the last hour of Allyson's shift, she told me that she was about to pull up a chair next to Tikva to snuggle with her, because she would miss her.
Anyone who has children and has known how it feels to know someone else loves your child can probably understand how good that was to hear.


When I arrived in the ICN this morning, I found that Allyson had created a canopy of blankets over Tikva's bed, with this sign on it.
Too many doctors and others kept coming by and nudging Tikva, and it wasn't helping her to settle down and bring her numbers up, so Allyson gently kept them away in this way.
She was looking out for our little girl, and after 5 weeks of knowing her ups and down and subtle rhythms, Allyson really knows what Tikva needs.



Tikva was pretty upset when we arrived, eyes wide open and crying so clearly (it still makes me smile to hear her able to cry).
Her temperature was down and her numbers were too, so Allyson suggested one of us hold her.
I took off my shirt so she could be against my skin, and Allyson placed her on my chest and wrapped warm blankets around her.



Tikva kept arching her back in the way some babies do when they are trying to settle down - it's something I remember Dahlia doing a lot too.
She already has amazing strength in her neck, and would look up at me every once in a while mid-arch.
Eventually she found a place against my chest in the crook of my elbow, but she was still a bit agitated.

So Dave came up close to us and put his face against hers, so that she was in between his face and my arm and chest.
In this family cuddle, it took about 2 minutes for Tikva to completely calm down and drift off to sleep, and her numbers on the monitors went back up to perfect really quickly.
It was one of the most beautiful moments I've experienced in the last 5 weeks with Tikva.


Just after putting Tikva back into her bed, I took this amazing photo of Tikva and Allyson having a conversation.
Allyson was soothing Tikva, who had been woken up from her sleep when we moved her (we had to go to a meeting with the doctors and social worker).
She was showing Tikva how to find her hand to gnaw on in order to soothe herself, something she sometimes has figured out how to do.

I can't describe how adorable they were together, and how much it warmed my heart to see how much they are connected, this amazing angel of a nurse and this little baby she has known and nurtured since birth.

Allyson really is an angel - in her spare time when she is not nursing, she cares for infants and babies in the foster care system.
She is a woman with a deep soul, enormous faith, an incredible knowledge that she shares with clarity, patience with all of my questions about Tikva and nursing in general, a toughness that is grounding, gentleness, diligence in her work, a sense of humor, and such a sweet heart.
And she clearly shares our belief that Tikva is much greater than her little body and the numbers on her charts and blood tests... She believes in Tikva.

Allyson is one of my heroes.
I hope one day to be able to touch people as a nurse in the way she touches our family.

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.

Our Little Friend Kalmin

Our little friend Kalmin is starting to feel better.
The doctors figured out that he had a rare kind of pneumonia, so he is being treated with antibiotics.
Today he looked and felt better, his little body definitely responding to the medication.
His wonderful mama was with him all day, helping to make sure he didn't get so agitated that he would start to cry, since crying could make him stop breathing.
For both Kalmin and Tikva, breath... healthy breathing... is the most precious gift.
These are two incredibly mighty and determined little people, and the look in their faces is that of a sage.
Old souls, I think.

Please keep prayers coming for Kalmin, so that he recovers completely from the pneumonia, so that his lungs recover from two months of being on the ventilator, so that he can go off the vent soon, and so that he continues to move toward complete health and the surgery that will allow him to breathe, smell, taste and cry out once he no longer needs his trach tube.

Mighty beings, I tell you...
With a mighty purpose.

Precious

Tonight after reading Dahlia a story and turning off her light, as we shnuggled together, I told her she was my precious girl.
She replied, "Tikva too?"
I said, "You're my two precious girls."
She offered, "And Daddy's your precious man. And you're your precious self."
Here are some photos I took today of my precious girls and my precious man.

Time With Tikva

I took this with my little digital camera today.
Tikva is trying out the nasal canula, which gives her oxygen and a little bit of pressure, but without the Star Wars headgear.
You've come a long way in less than 5 weeks, Little Lady.
And you sure are CUTE.

Tikva has spent so much time awake, alert, looking around and connecting lately.
Yesterday they removed her last IV from her neck, and with it went her morphine - which she had been getting day and night since the day she was born.
They weaned her down over the last few weeks, and stopped it yesterday.
I think today she was feeling some withdrawal, and they can give her small amounts of it as she clears her body from this dependence.
But wow... again, what progress.
She is on full feeds now, getting as much to eat as any baby her age.
Practicing sucking on a pacifier, and in less than 2 weeks she'll be getting my milk again.
Next after that... nursing directly from my breast... I can't wait.

Each day something new, each day another step forward, another step toward coming home.
Come home, Baby Girl, all the way home.

Thirty Percent

Something I've been thinking about:

During one of our very first meetings with the surgeons of the Fetal Treatment Center at UCSF, right around the time we returned to SF from Jerusalem, we were given some numbers in response to the ultrasound results and Tikva's head-to-lung ratio that was measured in the ultrasound. According to the numbers, Tikva was given a 30-40% chance of survival. The degree of her CDH was considered severe. Beyond that, they could not give us any predictions about the quality of her life if she survived.

This is what's been interesting about that conversation, which I remembered recently and have been thinking about the last few days: When I heard 30%, it didn't sound like a small number to me. It didn't make me think about the 70% who wouldn't make it. 30% actually sounded and felt like good odds to me, even though I know it wouldn't make anyone bet on a racehorse with those odds. When I heard 30%, I thought, "Someone has to be in that 30%. If anyone can be, it's Tikva."

As I told the social worker the other day, there are a lot of things you can't measure in an ultrasound. Tikva continues to amaze the crew that has been monitoring her since she was 22 weeks in my belly. I can't wait to see their faces and the tears in their eyes when we leave the ICN to bring her home.

The Love of a Parent

Here is something that has been coming up a lot lately in conversation:
How far Tikva has come, and how I never once doubted that her life was hers and God's to decide on, not mine.

When we were in our final weeks living in Israel, preparing to come home just after Tikva's ultrasound, several of our Israeli cousins asked us if it wasn't better to just terminate the pregnancy and "start over."
Others asked the same question indirectly, through other family members and friends.

I understood that their concern came entirely from a place of love and concern for us.
And at the same time, I just couldn't connect to the possibility of terminating my pregnancy.
Not just because I was already at 23 weeks.
Not just because Tikva had already been kicking noticeably inside me for 5 weeks.
Not just because I had lost my previous pregnancy to a miscarriage at 10 weeks.

But because it just wasn't up to me to decide whether my baby should live.
And because I believed in her already then, and I wanted to do everything possible to give her the chance to show her mighty amazingness.
Because I knew - even if I didn't know I knew - that Tikva had a BIG purpose, and her CDH was part of that purpose.

I knew that she had chosen us as her parents for a reason, and I knew that we could take on our part of the journey.
I knew that we had to give her the best chance possible.
So off we went back to San Francisco, a complete detour from our long planned for plan, and here we are almost 6 months later.

I also recognized that there are no guarantees when you choose to have a child.
We are incredibly blessed that Dahlia is such a healthy child, and that she was born smoothly with no challenges.
This is something I will never again take for granted.
I also know that I can only hope that her whole life will be full of such health and wellness, and that we all will stay healthy and live a long life by her side.
I know how easily something can change in a moment - a child who shows up as healthy and well in an ultrasound can have a difficult birth and an unexpectedly challenging life.
It really is true that every day could be your last... I've never found that depressing, but rather an inspiration to live that day well.
For these reasons too, I just couldn't comprehend or entertain the notion of terminating my pregnancy.
It's just not up to me what journey my children are on in this lifetime.
What I can do is to trust and embrace their journeys and my own, and do my part to support them.

Just this morning I was talking with Dave's mom about all this, and about the incredible power of hope, faith and love that has brought us to this moment.
About how you can't measure that power, and yet that's the power we have trusted since those very first days in January in Jerusalem, when it was so cold it snowed outside and we felt so scared and alone in our apartment so far away from our community.
So far away from what we had expected things to look like when we chose to get pregnant.
In those middle of the night hours when both Dave and I would wake up suddenly, at the same time, and just hold each other and take turns crying, unsure of all that was ahead.
Yet something deep inside reminded us to trust...
Maybe it was Tikva communicating with us, already our wise teacher.

Today at the hospital Tikva was so awake, alert and wiggly.
She was moving and squirming and looking around and giving us little cries here and there.
She didn't look uncomfortable, but she did feel like she was communicating, and she certainly had things to say.
I would too if I had spent the first of my four weeks of life paralyzed, and the other three unable to cry out.
She is on less and less morphine every day, and should be off it completely in a few days, and now she is MOVING!
I didn't worry when her movements set off a beep on one of her monitors.
I didn't worry when she cried.
I just know that she is doing exactly what she needs to do - being a normal baby, expressing herself and using her body more and more now that she can.
And boy does it feel good to watch her and cheer for her and connect with her as she looks straight into my eyes, so totally focused, and we talk and sing together.

When I got home tonight and put Dahlia into her bath, I found the most amazing email in my inbox, with a story and a link to a video that made me cry with a huge smile on my face from beginning to end.
It made me cry because it resonated my theme of today: The love of a parent, and our trust in our children's journeys and our own purpose, no matter how complex their unfolding.
This story explains exactly why I could never have terminated my pregnancy, and why I am with Tikva, all the way, no matter what, for the rest of my life.

I've written before that I am a complete mush-ball and I just totally love anything inspirational that comes my way.
For me, this stuff has the opposite effect of reading the newspaper or watching the news, neither of which I do.
The news makes me depressed; this stuff gives me hope in people and fills me with energy.
With that as my unapologetic disclaimer, I have to share this.
First, read the story below.
Then, watch the video in the first link.
Then, for more about this incredible story, check out the website in the second link.
Get some Kleenex and enjoy.

"A son asked his father, 'Dad, will you take part in a marathon with me?' The father who, despite having a heart condition, says 'Yes'. They went on to complete the marathon together. Father and son went on to join other marathons, the father always saying 'Yes' to his son's request of going through the race together. One day, the son asked his father, 'Dad, let's join the Ironman together.' To which, his father said 'Yes' too. For those who don't know, Ironman is the toughest triathlon ever. The race encompasses three endurance events of a 2.4 mile (3.86 kilometer) ocean swim, followed by a 112 mile (180.2 kilometer) bike ride, and ending with a 26.2 mile (42.195 kilometer) marathon along the coast of the Big Island. Father and son went on to complete the race together."

http://www.godtube.com/view_video.php?viewkey=8cf08faca5dd9ea45513

http://www.teamhoyt.com/

Presence

Tikva is so completely present, so here, so engaged, so with us.
After a long sleep today, she opened her eyes and looked at us - Dave, me, our friend Ahri, Dave's aunt Marty, nurse Allyson.
Her eyes were so big, so wide, so aware of our presence.
As I held her this afternoon, after sleeping for most of the time, she opened her eyes and looked up at me from her place against my chest.
We sat and looked at each other, super close, until she drifted back into sleep.
She has the most beautiful eyes, and the squishiest chubby cheeks, and the cutest pointy chin.

Life is calling roll and Tikva is answering with a resounding "HERE!"
She's going all the way, my amazing little girl.
Holding her today, I can begin to feel the experience of holding her...
At home, in our bed, unencumbered by tubes or wires or machines.
All the way, Baby Girl.
All the way HOME.

Nine Good Fingers

as told by our good friend Cynthia

True story:

His wife will be in labor soon with their second child. Their four year old daughter is chatting and getting into the car. "Make sure she doesn't smash her fingers in the door", he thinks. They go grocery shopping and get food they will need for the busy week ahead. Milk, eggs, chicken...things that are easy to prepare and will keep. The baby is coming and life is uncertain. No planning too far ahead. Only 'hope' is the constant in their lives, as they plan to take care of this baby that may or may not survive being born.

Back to the car, groceries into the trunk and the conversationalist into her car seat. He turns and slams the door shut...directly onto his finger. Oh deep pain running up his arm.

He has many choices. Scream. Yell. Swear. Jump up and down in pain. But he just walks around the car. Takes several very deep breathes and gets behind the steering wheel. He spread his hands out in front of him and looks. "I have nine good fingers.", he repeats to himself over and over. "Nine good fingers." Strangely enough the more he says it the less his injured finger hurts. He starts the car and heads back to his wife. She gives birth that night, and the baby thrives.

Falling In Love

Bliss.
Complete bliss.
The feeling of my tiny daughter's skin against mine.
The warmth and softness of her.
The smell of her.
Her tiny fingernails grazing my skin.
Even her drool on my chest.

Today we held Tikva again.
This time skin to skin.
Heart to heart.
She slept cozily the entire time.
Comforted, completely peaceful.

Today another hint of what is ahead when she comes home.
And yet I am completely here, now, in the incredible beauty that is our present.

If it is possible to fall more deeply in love with Tikva...
If it is possible to believe in her even more...
If it is possible to be even more with her, even more at her side...
If it is possible for anything to feel more natural...
If it is possible for her to feel more at ease...
Today is the day all of those things happened.

People are asking us now if there is a timeline for when Tikva will be able to come home.
What else needs to happen to move toward that reality.
I don't really know how to answer those questions.
The doctors hesitate to make any promises.
And we are so in the moment, so in the day-by-day day-to-day of it all.
We are just WITH OUR GIRL.
Each step Tikva takes is one step closer to coming home, and that is the reality, the vision we are holding.

She has done so much already in just 28 days; so much.
I have no doubt that she will continue to amaze not only her parents and her loving community, but also the most cynical and scientific of doctors.
For now, for today, I know only that she is a wonder, a miracle, a mighty being of light, hope and love.
Tomorrow our nurse Allyson is going to start teaching us some of the things we will need to know when we do bring Tikva home.

Dahlia wanted to visit her little sister today, and she came with me to the ICN after school.
She wore her new "I'm with Tikva" t-shirt... we went to get matching t-shirts over the weekend, in honor of our little girl.
Like her parents, Dahlia is holding the vision of welcoming her baby sister into the fold of our loving home.
Into our warm family bed.
Into big yummy dinners with our extended family.
Into the biggest welcome home celebration you could ever imagine... to which you are ALL invited.

Request for Prayers

This is a request for prayers for our friend Kalmin, who has been Tikva's neighbor in the ICN since she arrived, and for Kalmin's parents.
Kalmin was born 7 weeks ago, and has spent all 7 of those weeks in the ICN.
He has a very, very rare birth anomaly, and was born quite early.
He is completely adorable, and as much a mighty warrior as Tikva.
For the past week, Kalmin has been having a rough go of it.
I think he could use an extra infusion of love, prayer, strength, and positive thoughts.
Please hold Kalmin and his very sweet parents in your hearts.
Thank you.

Go Tikva Go!

Tonight at 2:22 a.m. will be exactly 4 weeks since Tikva's birth.
For the past month, she has had a breathing tube in her mouth and down her trachea into her lungs.
Through this tube, she has been receiving breathing support from two different kinds of ventilators.
Until today, she has not had to breathe entirely on her own.
Until today...

Today Tikva was extubated, which is a fancy medical term for removing the breathing tube.
For the first time since those few seconds right when she came out of me on June 10th, I was able to see her lips and cheeks.
For the first time ever, I was able to kiss her lips and cheeks.
For the very first time, Tikva was able to breathe on her own.
Now she is breathing on her own.

She is still getting oxygen through a little cap that goes over her nose - it's attached to a tube and a hat and is called a c-pap.
She looks a little bit like she belongs in Star Wars.
The c-pap also gives her a little air when she exhales to make sure her lungs stay open.
But she is taking breaths all by herself and doing great.
She was definitely ready for this big move today.

And she is doing one other amazing thing: She is crying.
Her voice is hoarse from a month with a tube in her throat, but even so she is letting out little sounds.
In a few days, she will be wailing so loud they will probably have to move her out of the "super critical" bay of the West Wing of the ICN.
Her little cries are already music to my ears, and I can't wait to hear them grow louder and more powerful.
Can you imagine not being able to cry real cries for a month... as a baby??
I wiped little tears from her eyes with a smile, knowing that stress hormones are released in our tears.
I hope she lets herself cry until ALL the stress from the last month of her life is released.

When I called her nurse Jennifer to check in this evening, she told me that Tikva had figured out how to suck on a pacifier.
Another huge smile on my face, knowing that this is just the practice she needs to be ready for breastfeeding when the time comes.
I never thought I would be excited about my child using a pacifier, which I vehemently resisted with Dahlia, who thankfully never showed any interest in one.
But since Tikva hasn't been at my breast since birth like Dahlia was, sucking on a pacifier or on my or Dave's finger is the way she will learn to drink from my breast and a bottle.

Tikva is now up to 8 ounces of formula per day - two of the 5-6 bottles I have been filling with my milk each day.
She has another 2-3 weeks on formula before she can go back to my milk, as the leak in her lymphatic system finishes healing.
I can't wait until she can have my milk again... but not as much as I look forward to nursing her.
In order to drink from breast or bottle, she has to be taking less than 60 breaths per minutes.
Right now, with the work she is doing to breathe and develop her strengthening and growing lungs, she is taking about 80-90 per minute.
I have no doubt whatsoever that she will get there at the right time - when she is ready - in the same way that she's taken every step along her journey so far.

I kissed her a million times today - on her lips, on her cheeks, all over her soft body, again on her lips and cheeks.
I spoke to her a lot as she looked into my eyes.
I told her how proud I am of her, how proud I have been all along, how proud I will always be.
I rallied on the sidelines of her little layette as she cried, holding her hand and telling her she can cry as much as she wants to.
I played nurse and used the little suction thing to suck up the little spit bubbles she was making with her newly free lips.
I cheered for her when she coughed up her own goopies now that the vent is out of the way and there isn't a tube to suction it out for her - and no vent to cause more goopies from forming.

Crying, coughing, sucking, spitting, yawning - the most basic baby activities, and Tikva can now do them all she wants.
I appreciate these more than I ever thought I would.
They are the most precious reminders of the
REGULAR NORMAL UNCOMPLICATED LIFE
that is ahead for Tikva.
Today my girl is one step closer to coming home.

Keep Dreaming

Our amazing community is having dreams about Tikva.
Tikva working her magic, spreading healing to the other babies in the ICN.
Tikva laughing and playing with my father, her Nonno.
Tikva in Dave's arms, thriving and well and home, beyond this unusual beginning.

Keep dreaming.
Keep holding these incredible visions.
Keep sharing them with us.
Keep letting Tikva know all that is ahead.

In our dreams, in our visions, we create reality.

I know that Tikva is having her own incredible dreams.
I can see it in her face and feel it in her body when she is sleeping and squirming in her little bed.
I have a feeling her dreams and visions are quite beautiful and BIG.

Please Pray

Please pray for Tikva to have renewed strength to fight off any infection in her lungs.
And that she continues to be able to harness the incredible energy inside her and from God in order to heal completely anything that comes her way.
She is a mighty one, and even the most strong among us need support.
I know that the energy of your prayers and love will continue to fortify her.
Thank you.

Food, Glorious Food!

To all the amazing folks who continue to prepare and bring us meals...
I can't express enough how amazing it is to come home at the end of a long day at the hospital and find a delicious healthy meal just waiting for us.
We feel so nourished - you give us the sustenance we need to do all we do each day.
We bring leftovers with us to UCSF so that we're eating well during the day, too.
There is always something to eat, even if we can't get to the store.
And most of all, each bite is filled with goodness and LOVE.
THANK YOU!!
And deep gratitude to my sister Sharon for reaching out and arranging the meal deliveries.
We continue to be so held by everyone.