Archive | July, 2013

Maybe

26 Jul

Maybe I’m scared of diving into my own complicated web of feelings. Maybe I’m not as open to sharing as I once was. Maybe I’m just too busy, too worried, too stressed, to bother with blogging. But whatever the reason, I’m not feeling up to posting right now.

I did want to let you all know that baby J is doing well (“Turtle” no longer seems apt). Her second surgery to repair her atresias went well and her recovery is going well and we continue to watch and wait and hope as life here in the hospital, well, goes on. There is no expectation or timeline of going home in the near future. Thank you all so much for your well wishes over the past few weeks. They’ve easily been the most challenging of my life.

I’m continuing to mull over what I want to happen to this space at this point. For now, I know that blogging feels like a chore and another chore is the last thing I need right now. This isn’t your typical “I’m a mom now, what do I do with my infertility blog?” question. It’s more like a “my baby has been in the hospital since birth with a threatening birth defect and complication, how do I cope and function?” kind of question.

Until I know the answer, there may be a bit of radio silence around here.

It’s happening

3 Jul

Well I was planning to blog today about something else but things have changed. Our surgeon came in this morning at 7:30 and woke me up to tell me that he’s decided to move Turtle’s surgery up to NEXT THURSDAY. It was supposed to be July 26th but he feels she’s growing and doing so well that those two extra weeks of waiting won’t be necessary.

As I said on Facebook, I am simultaneously excited and freaking out. I have been looking forward to this surgery with a strong mixture of hopeful anticipation and utter dread. My husband, the pragmatist, doesn’t get it. Is it a mama thing or what? My heart is just wailing, they’re gonna cut my baby open.

He says, but it’s necessary, they have to, she’s broken. I know this, logically, of course. She literally cannot live like this forever. Her bowels are broken. She cannot process food and absorb nutrition. You can only be on parenteral nutrition for so long before your liver is damaged.

I know this. But I just think of them wheeling her alone into surgery, without me. Of them messing with her consciousness and putting her to sleep. Of her tiny, precious body lying vulnerable on the table. Of the scalpel cutting across her entire belly.

Will she feel alone? Before they put her under, will they comfort her, talk sweetly to her? And how will I cope during those four to eight hours? I can’t even imagine what I will do with myself. Sit catatonic in the massive surgical waiting room here? Pace manically? What will she look like when she comes out of surgery? Will she be sedated? Will they take all her pain away? Will she be scared when she finally wakes up? Will she be swollen?

These are the real mama questions I want to ask but with the surgeons we have to ask the logical questions, not the emotional ones.

I know they’re experts, the best in the world. I know she’s a champ. These platitudes only help a little. What helps is thinking of this as a necessary step, a big leap forward, toward going home. Toward our real life. THIS is all not real. We don’t live in a hospital. I don’t have a nurse call button or an endless supply of supplies or people coming in to take vitals or an IV pump or a fold out chair for a bed in real life.

Very soon I won’t have a baby with an NG tube and a central line and all these things coming out of her that we need to be extra careful about. Soon she’ll only wear mittens so she doesn’t scratch herself, not so she doesn’t yank her tube out of her nose, or worse the central line or G-Tube that are stitched to her. Soon I’ll be able to pick her up and WALK AROUND. Without a nurse disconnecting her from things. I’ll just scoop her up and hold her any way I want.

We have a beautiful, real life waiting for us out there and the wait just got a little bit shorter. That’s the only thing that helps me cope with the fear. I wonder if it’s somehow connected to our infertility and loss as well. The feeling that I could still lose her. That this is so good it could possibly just be a dream. I know I won’t lose her. I know she’s here forever now. But that extra layer of irrational fear haunts me. IF’s parting gift perhaps.

So she’ll be in surgery next Thursday. Please mark your calendars and think good thoughts for our girl that day, all day long. After surgery she’ll likely go back to the NICU for a few days for the early part of the recovery. This is better because she’ll be under the close watch of the most experienced of nurses, but it means we’ll give up our private room on this floor. This room has really become home and I will miss it. When we get back to this floor, who knows where we’ll go. Hopefully we’ll still be able to arrange to both sleep here. When she’s in the NICU, we can’t sleep there. We can be there, anytime we want, but there’s no way to sleep there. They have rooms somewhere in the hospital for NICU parents but they go quick and they often run out of availability.

Eventually though we’ll come back to this floor and the real work of beginning feeds will start. She may have to have an ostomy and a third surgery, depending on what they see when they get in there. Our hope is that they will be able to repair the blockages and reconnect her bowels next Thursday. If they can’t, this ostomy plan will go into place and will likely delay our homecoming by about two months. If that happens, I very well may have to quit my job, as I can’t in any way fathom going back to work while she’s still in here. And frankly, even after she gets out, I want some time with her at home. I feel I deserve it. I feel cheated out of my maternity leave. Maybe that’s wrong to feel, but I do. Which of these scenarios we’re looking at will be a lot clearer after she gets out of surgery.

After she gets out of surgery next Thursday. Next Thursday. Holy shit. My baby.

If I don’t blog before next week, please keep us in your thoughts and I’ll try to come back as soon as possible with an update on her condition, even if it’s just a few lines.