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.