I have been struggling with how to say all that I feel I need to say. This may be a long post. I think I will start with something I wrote in my private journal on the 22nd.
This is the first time I felt like I could
sit down and spend some time recording the thoughts and feelings that
I have recently been experiencing. I have been keeping a notebook of
details and information about Lenah's status and care and have been
posting much of that online. Every other moment has been spent doing
priority things or sleeping.
I am still so scared that I am going to
lose Lenah. I am scared that everything is just going to unravel at
any given moment. I am tired and I feel like I can't be everywhere I
need to be at all times. My ankles are still terribly swollen and I
tire very easily. Thankfully, my c-section pain has mostly subsided
and I seem to be healing well. I am walking around smiling at
everyone when I really just want to throw myself on the floor and
sob. I feel like I am walking around in a fog.
There is a part of me that is terrified to
let myself really love Lenah. It is so hard to find some way to love
her with abandon and yet still hold her with an open hand. It just
doesn't seem possible to do both.
I look around at all of these other parents
and I read the feelings of my own heart in their faces and in their
eyes. The lines of worry. The understanding nods. The drawn faces.
The wells of grief waiting to be poured. The nervous laughter at
someone's forced joke when they can't say anything else or risk
faltering their resolve to hold it all together. The flood of relief
when a tense moment subsides. The fear when they just don't know how
things are going to go. I haven't yet been forced to look into the
faces of those whose child has lost their battle. I would like to
hope that day will never come, but the odds are that at some point
during our 3-6 month stay, that day will come. Is it selfish to hope
that it is not in the mirror that I see that face and those eyes
first? Probably. But that's where I'm at. I want Lenah to live. I
want her to thrive. I want to hold her and love her and watch her
smile and grow and love.
How do people do this? How do they face
the daily unknown. How am I going to do it? I NEED the Lord's grace
– EVERY MOMENT. I need His peace to survive. I seek His comfort
-and dare I seek it- His joy. I wish I could say that I have been in
constant prayer- but I can't. Somehow, though, I think every step
and breath I've taken is some form of prayer. It has to be- because
much of the time it's all I can manage. One step. One breath. One
moment at a time.
Last night I had a really good visit with Lenah. I held her for
the whole time I was here and she had some nice awake time where she
just gazed into my eyes.. I also captured a little bit of video with
my old school phone camera. I also had a discussion with Lenah's
cardiologist that left me feeling upset and afraid.
I had a post-partum visit scheduled for this morning with my OB
at 10AM. His office is here at the Texas Children's hospital campus
so I had planned to be here for the rest of the day with Lenah after
my appointment. Ten minutes before my alarm was set to go off this
morning my phone rang. I thought it was a reminder call from my OB,
but it was too early for that. Unfortunately, it was Lenah's
cardiologist. She began spitting up and then vomitting in the early
hours of this morning. Her abdomen also became distended and firm.
They discontinued her feeding and put her on the ventilator to help
her body not have to work so hard. She has pockets of air in her
abdomen and in her liver. She has necrotizing entercolitis. All that
can be done for Lenah is to give her antibiotics and pain medication
to keep her comfortable. It also seems as if her kidneys are having
difficulty as well. She had to have a urinary catheter put in.
I posted in my last post the situation of Lenah being an
unlikely candidate for liver transplant if the Kasai procedure failed
to help her liver. What I didn't know is that the Kasai procedure
only has a 10-20% chance of success. I did know that Lenah is not a
likely candidate for liver transplant in the event that the Kasai
failed. I prayed that the Lord would make it abundantly clear to all
parties involved how to proceed with Lenah's care.
So here we are. Surgery of any kind is not an option for Lenah.
Her heart would most likely not tolerate any procedure at this time.
The phrase “Go Big or Go Home” has taken on a whole new meaning
to me. That's where we're at folks. Jesus can either go big and heal
her completely or take her home. As I wrote in my journal on the
22nd, the Lord has been showing me that I have not held my
children with an open hand unto the Lord. They are really His and He
loves them far more that I ever could with my human limitations. I
have to tell you, all of this has been really hard. But it has also
been really good. God has shown Himself so faithful to us. Both
through other people and through circumstances that only He could
have arranged. I will continue to post updates as we have any changes
or daily at the least. Thank you all for praying and for loving us.
We really, truly can not thank you enough.