Fading

Satellite radio giveth, satellite radio taketh away. Found I couldn’t turn off Eric Clapton’s “Tears in Heaven” when it popped up – if you know the origins of that song you’ll know why it’s especially sad right now. I started to think about it playing at Harper’s memorial service and then recoiled at even thinking about a service for my baby girl (although, to be fair, that was one of the questions hospice had asked of us and noted they could help us plan when the time came.)

Weekends are tough going to the NICU, because we have Shea to think about. He only has the patience for about 20 minutes sitting still, reading or talking to Harper, and then he wants to head to the NICU family lounge, which is filled with fun toys. Luckily, we have friends who are willing to set up an afternoon playdate, so Lou and I can spend an afternoon with Harper bean. Still, yet another reason why it will be a relief to bring our girl home.

Sleepy bean

Unfortunately, our Harper bean is not looking so good. Fading is probably the best word for it. Both Lou and I were struck with how sickly she is starting to look. I suspect she’s jaundiced, because her complexion is distinctly yellow. Her breathing sounds labored – although she’s not de-satting any more than before – and she’s just lethargic and inactive, laying sleeping in our arms with occasional brief fussing. It’s hard not to look at her without believing she may not be with us much longer. It’s really, truly awful to watch your baby get sicker and know that’s going to keep happening – so hard not to grab her and run to the doctor to shout, “Fix it!!” Knowing she’s unfixable.  It does to help see that she’s so peaceful, she just sleeps quietly, looking terrible but seemingly feeling fine. Or at least not in any obvious discomfort. 

:(

The lovely speech therapist who has been working on Harper’s sucking reflex stopped by to tell us excitedly she’d be back later in the afternoon because she’d gotten permission to try Harper on a bottle. We tried to break it to her that Harper was no longer really alert enough to show much interest in sucking, but hope springs eternal, so we did try. Sure enough, our little bean showed no interest at all in sucking even on Mommy’s finger dipped in milk, something she really showed interest in only a week ago. In a humorous moment, she pursed her lips in a decidedly stubborn expression, resisting any attempts to put something in her mouth. Ever the optimist, or just oblivious to Harper’s condition, the therapist cheerfully suggested we try it again at home or even try breastfeeding, before wishing us the best in our homecoming.

All dressed up, no place to go

I’ve decided the reactions of most people who hear about what we’re going through can be neatly classified into one of a few categories:

1.      1.  The Hug: fortunately, this has been the reaction of nearly all of our friends and family. Just the right balance of sympathy, support, and helping hands.

2.      2.  The Smothering Shroud of Sympathy: This involves a lot of “I’m so sorry,” looks of extreme pity, and multiple restating of how absolutely horrible the situation is. I usually find myself in the role of reassuring the person I’m talking to, which seems very wrong somehow. This is what happened when I saw my OB yesterday, and it makes me want to run from the room, which feels like it’s losing all of its oxygen.

3.      3.  The Eternal Optimist: Either through a misunderstanding of Harper’s prognosis or just sheer willful ignorance, these folks keep telling us she’ll be just fine. Miracles happen. Often accompanied by lots of “congratulations!!” This describes a receptionist at the hospital I spoke with yesterday. Not much to do but nod, smile, and try to ignore the pain caused by this.

4.      4.  The Downright Insensitive/Crazy: Let’s just say this is a mix of people saying the darndest things or having an amazing talent for saying exactly the wrong thing.

In every case, I tell myself everyone means well. And the pain is my problem, not theirs.

I had a little breakdown crying in the NICU today, talking to Lou, when I began to imagine a house, surrounded by baby things, but with no baby. Or the months to come, when I will run into seldom seen colleagues or neighbors who knew I was pregnant and who would innocently inquire about the baby. The thought of having to repeat Harper’s story over and over, reliving the experience, makes me want to hide in my house and never come back out. Already I’m finding the presence of happy parents and babies like a stabbing, and I don’t want that. Every parent deserves joy in their little one, and I don’t want friends and loved ones feeling like they can’t brag about every milestone reached to spare me pain. Hoping it won’t be forever that I see a mom walking a stroller down the street only to be hit with a wave of envy and hurt so high it’s like my lungs are filled with seawater.

I have become obsessed with combing the internet looking for stories of SLO babies who have gone home for hospice care. What did they experience? How long did they live? The answers range from a few days to a couple of months. I can’t decide which is the better scenario: longer with my Harper or a quicker end? Both feel like sandpaper on a wound, to be honest. So I guess I need to continue to live day by day, and just be present in the moment with my baby.

I’ve begun to feel there is a certain freedom in hospice care, in that you have to worry less about normal newborn concerns. Creating a germ free environment, keeping her away from crowds, worrying about whether she’s getting the right stimulation for development, making sure she’s sleeping in the exact right position – none of these are a concern when your little one has a terminal illness. Not that Lou and I were ever very uptight parents for Shea – we are of the school that exposure to germs and dirt is good for the immune system. To that end, I'm beginning to wonder if it's worth continuing to pump breastmilk, as opposed to just going to formula. Time spent strapped to the pump could be time spent holding my beanie baby. 

Daddy's girl

I am also dreading in some ways having Harper home. Lou will be back at work, and it’ll be just me and Harper at home. It was always going to be that way for my maternity leave, but it feels very different when you’re home joyfully watching the minute changes newborns experience every day, versus staying at home waiting for your baby to pass away. I know that’s not how I should look at it; I’m really home to spend what time I have left with her. But it’s very hard not to get caught up in a wave of depressive thinking. I am a little scared of what it’ll do to my state of mind. It is already so difficult to watch her getting sicker, day by day. Not bringing her home is not an option - my baby dying alone in a hospital without her mommy is my worst nightmare. Or, perhaps an offshoot of my worst nightmare, since I already seem to be doing a pretty good job of living out a nightmarish scenario. 

Hopefully, traveling with Harper’s oxygen tank won’t be a big deal, and we can get out of the house into the sunshine. 

While cuddling with our girl today, Lou and I began to talk about Life After Harper. Which felt guilty and disloyal. But also happy, in that we began to dream of things to look forward to. Maybe taking a vacation, using the time we’d accumulated for the baby. Going on a big trip: Austratlia, the UK, eastern Europe (not all on one trip, to be clear...) Taking our Shea boo to Disney world. Planning for another baby.  

A bittersweet blend of hopeful and sad. 

Family