Lots to think about

Lou and I had a lovely Sunday morning with little Miss Harper. She really seemed blissed out snuggling skin to skin with Mommy and Daddy in a lounger chair. And we had fun decorating her with a little pink head bow given to her by our friend Sara (well, I enjoyed it - Daddy rolled his eyes a lot!) It was about 10 times too big for her head, but a girl needs her accessories, right?

A few days ago, Lou pointed out that in some ways, knowing that Harper's condition was so severe that she was unlikely to make it would allow us to better enjoy the time we had left with her. At the time I thought it seemed kind of counter intuitive - could you comfortably bond with a baby that you knew was going to die? Wouldn't you start to naturally distance yourself from her, so as not to go through all the stages of grief, all over again? After all, there's probably no worse feeling in the world than losing a child - why would hurtling towards that bring peace?

But this idea came up again today, after a final conversation with our attending neonatologist. Sadly, today is her last day at Georgetown; she's rotating to another hospital for the summer. We're incredibly sorry to see her go; she has been the most compassionate, caring, and commonsense physician we've ever had the pleasure of meeting, and she has truly been a partner with us in providing for Harper.

Showing the Wolinetz lips??

We began with just a medical update. They've started Harper on another diuretic, one that is a little less draining on her electrolytes, and while there may be some very incremental improvement, she is still de-satting constantly. Still on 1 L of oxygen. More troubling, perhaps, is the continued weight loss - she's down to 4 lbs, 5 oz - a 9 oz loss since her birth and steadily dropping. Now some of that is probably due to the diuretic. However, it's not a positive sign that she is eating and tolerating milk perfectly fine through her NG tube, peeing and pooping normally, and still losing weight. Makes one wonder whether there's something wrong with her ability to metabolize the nutrients. Her breastmilk is being fortified now with high calorie formula - we'll see if that reverses the trend.

Then came the more serious conversation. Our neonatologist had heard back from Dr. Porter, the expert from NIH (as have we - appointment to be set up, hopefully this week). He confirmed what we'd already discussed: Harper's anatomical abnormalities and extremely low cholesterol make her prognosis very poor. Our doctor's interpretation of his note was that he didn't even think it made sense to begin cholesterol treatment. Mostly, he seemed to want to know where we, the parents, were. I'm sure on any number of diseases and conditions with which he works, he sees ranges of parents reactions, from "do anything to save my child!" to "I just want our baby to be comfortable/happy" - and he was gauging his response and our expectations based on where we fell on that spectrum. Something we'll no doubt talk to him about when we actually meet in person.

So what happens next? Harper's condition might be described as sub-stable. She's not entirely stable, since she's still relying on some oxygen and an NG tube. But she's not in imminent danger, either. And our doctor is in agreement with our desire to get her the heck out of the NICU, since she doesn't really need an acute care environment.

Our beeping nemesis - the monitor

The options are to move her to a longer term, less acute hospital setting - she mentioned the Hospital for Sick Children, which neither Lou nor I had heard of. Or try to set up an in home nursing situation, which would involve us, probably with some sort of nursing assistance, dealing with a feeding tube, oxygen, and monitor at home. This led to a discussion of whether it made sense to try to move forward with the implantation of a g-tube - far easier for parents to deal with than an NG tube. Our doctor is not entirely sure whether Harper would survive the surgery. From our perspective, on one hand, since we're essentially transitioning her to a hospice-type situation, if she remains in this sub-stable state, perhaps her ability to withstand the surgery is not the first consideration. On the other hand, I'm not sure I want to subject my little bean to the pain and discomfort of a surgery if it's more for our convenience than her quality of life. Clearly, lots more information will need to be gathered here. We also need a better understanding, which we're hoping Dr. Porter and other physicians we'll be talking to can help provide, of how long-term a situation we're talking about here. There seems to be growing consensus that Harper will not improve, regardless of treatment, but will she be with us for weeks? Months? A year or more? What's needed to keep her comfortable in that time?

In other words, a really, really long phone call with our insurance company is in our near future. Plus, Lou and I are pretty eager to talk to a child life expert in what's best for Shea - is having a possibly terminally ill baby sibling at home the right thing for him?

And then there's us and how we're feeling.

I shed a lot of tears on my little Harper's head after this conversation. But they were a different kind of tears. Sad, but moving past tragic. Maybe I've reached the acceptance stage of grief. Maybe I'm a monstrous sort of person for being able to calmly discuss bringing my daughter home to die in comfort. Maybe Lou is absolutely right that having a better grasp on Harper's mortality allows us to really enjoy the moments we have with her now.

Because it really was a lovely Sunday snuggling with our Harper bean. Kissing her soft head. Telling her about our day. Feeling her little heart beat against ours. Laughing as the beeping monitor kept reminding Lou of the beginning of ABBA's Mamma Mia, which he would sing to our baby girl. Watching her sprawl, zen-like and happy, in her bassinet after hours of being held by Mommy and Daddy.

Oh, Harper love, you are one complicated little bean!