Archive | November, 2013

Because I owe you

14 Nov

Hi. I am alive. We are alive. This blog, however, has been very dead for awhile.

I’m sorry I disappeared. We brought baby J home from the hospital for the very first time on August 28th after 101 days inpatient.

At first my excuse was how busy and stressed I was, because we were so busy setting up what is essentially a mini hospital set up in our home. J came home on IV nutrition which is a very big and stressful and involved thing for reasons I can’t begin to go into. And we were so stressed trying to figure out her bowels. She threw up a lot that first month and progress was excruciatingly slow.

But then things turned a little corner and we settled into our routine and she started eating and pooping more and throwing up way less. The second month home was much better. But still I didn’t blog because I didn’t know how to anymore. I honestly couldn’t figure out what tone or content or approach to take. I didn’t want to be too light and undermine what we’re going through, nor did I want to be too serious. I didn’t feel like glossing over things nor did I have the energy to explain all the details.

In a way, I feel like I failed the readers of this blog and the members of this community that gave and gave when I needed it so much. I thought about running away forever but that didn’t feel right either. I owed you an update, even just an acknowledgment. So here I am/it is.

We’re good, she’s growing like a champ, she’s so happy and engaging and beautiful that everyone falls in love with her instantly. We still have a few months yet on PN but one day we’ll hook her up to the pumps for the last time. One day in the next few months (I hope), we’ll go in to Children’s to have her central line surgically removed. This will, hands down, be the happiest day of our lives. When the threat of bacterial infection and the line getting pulled out is removed from our constant list of worries.

Until then we wait and take care of her to the best of our abilities. In the meantime I have left my job because her care is way too involved for anyone other than a trained nurse or, ironically, me or DH, to do. And it needs to be me. I know her and her history more than anyone ever can or will (other than DH who is the best partner in this anyone could imagine). Money will get tighter each month but it’s okay. It’s worth it. And it’s not forever.

I also started an Etsy shop. I needed something else, some other purpose and outlet and so mini mintery was born:

As for the future of telling our story here on this blog, I don’t know. All those feelings about how to be here remain. I’d like to be able to come back now and again but will I? I don’t know. What I’m saying is, this isn’t a break up, I don’t want to be exes, but maybe just friends with benefits?

To those who would like to keep in touch, email me. Or you can try my other blog though I’ve done a pretty crappy job blogging there too:

That’s all for now. I love you all.