Making decisions...

My therapist blew me off today. Totally double booked the appointment. I'm not sure what trumps mother with dying baby, exactly, but I hope it was good.

Not much to report in terms of a change in Harper's general condition. She's had to be put up to her highest level of oxygen yet, and doesn't seem to be feeling well, but her fever seems to have disappeared.

We began the day with a very grumpy baby, fussing and irritable, having thrown up her breakfast, developed a terrible diaper rash, and with her face broken out from the tape holding in her NG tube. We had to leave her fussing to talk with our neonatologist and social worker about our plan to move Harper to hospice care. We meet with hospice tomorrow to talk about whether that care will take place at home or in a residential hospice program. I'm really hoping we can bring our Harper bean home.

Grumpy baby, furrowed brow

One of the hardest issues now is how to handle decisions about Harper's treatment. Some decisions are easy: no intubation; no respirator; no resuscitation or code medications.

But what if she blows her IV, which is being used for antibiotics? Do we want her stuck again, knowing how fragile her little veins are and how difficult it is to get a line into her? And what about antibiotics at all? First, we don't know that we're really treating anything, since we don't really know if she actually has pneumonia or NEC, or if we're just seeing symptoms of SLOS. And why treat for infection at all, since our goal is to make her comfortable, not prolong her life?

How do we really know if she's suffering?

What's not hard is spending time with little Miss Harper herself. Our sweet little girl got to meet her Grandpa Ed today. She cuddled up, happy and blissful, for a snooze on grandpa's lap for most of the day. He read her Dylan Thomas and rubbed her soft head, and she squeaked her little squeaky toy squeak at him.

Harper meets Grandpa Ed

Meanwhile, at home, it's starting to feel like things are falling apart. As I type this, Shea is screaming hysterically that he doesn't want to go to bed, something he's never done before, and it's been going on for more than 45 minutes. None of my patented mommy tricks are working and every cry is bringing me closer to a hysterical breakdown of my own. I feel like this is a reaction to everything going on: Harper at the hospital; mommy and daddy spending all their time there and being sad and exhausted at home; visitors coming and going; the stream of presents; etc. Lou and I are both worn out and lost in our own stress - me from spending my days in the NICU, him from returning to work amidst all going on at home. Glad we're speaking to the child life experts tomorrow to help us work through all of this with our little boy, who is finally succumbing to the sound of daddy's lullabies. We're trying to keep him to a normal routine, but how can we when nothing is at all normal?

Snoozy little girl

I am dreading meeting with the hospice folks tomorrow. Somehow, it's all becoming very real. But I hate the idea so much of her dying alone, late at night, in the hospital. Without her mommy to hold her. The only thing worse than imagining my baby dying in my arms is imagining her dying without me there. 

Blissed out on grandpa's lap

Lou asked Dr. Porter if there was anything we or Harper could contribute to his research. Dr. Porter made it very clear that was the last priority for us and something we should only do if we both felt really comfortable with it. He mentioned donating fibroblasts for culture - by taking a skin sample, which would be done post-mortem (I can't believe I just typed the words post-mortem in reference to my daughter...) I think we will definitely do that, in hopes Harper might give something that will help future generations of little ones.

But as Dr. Porter and Lou continued this conversation, the idea of an autopsy arose, and now I am utterly haunted by the horror of my child going through that.  I know what happens in an autopsy, and reconciling those images with my pictures and love for Harper is filling me with nausea. Easy enough to just say no, harder to rid myself of those awful, awful images. 

Sometimes it's all I can do not to jump in the car and drive to the hospital in the middle of the night, just to hold her. 

If anyone has earned the right to give the world the finger, it's Harper...