Sunday, June 30, 2013

Yes I'm fine, sort of. Not really.

I think I have been doing pretty well thus far: healing quickly, getting the kids out and about, cooking dinner, trying to be normal. A few days ago some former Bostonian friends of ours stopped by to say hello; they told me they had another friend whose baby was in the NICU and that friend wasn't doing so well. Some other old friends were in town too; they also gave us props for keeping our heads on straight for so long.

I was proud of myself for holding it together. And then I made the mistake of thinking too much.

Oliver has been having spells nearly every day; as I write, I am forcing my brain to not figure out what day is five days from today because I have been disappointed too many times. Scott starts working at MGH on Monday, so our insurance provider will change. With the new insurance, our current hospital will be out-of-network. Because of this, we either have to transfer him to an in-network hospital or pay a nasty deductible. Transferring is not so simple either: insurance companies will only cover a transfer to an equivalent or step-down NICU. Because all the in-network downtown hospitals have top-level NICUs (and the one we are currently at is one step below), the closest in-network equivalent is a 45-60-minute drive. We are opting for the deductible. So this stress has been the backdrop to my week.

I had two doctors appointments this week too, neither of which was remotely enjoyable. I had never been to my primary care doctor; last year I'd randomly selected his name from an insurance directory because he was nearby and I've been otherwise healthy. As it turns out, his office is a sketchy suite next to a dollar store with a welcome sign that reads, "NO NARCOTICS." I had a few questions that he answered with, "I don't know about baby stuff." My other appointment I had rushed to straight from the NICU, only to wait for 1.5 hours before seeing a doctor who performed unnecessary tests.

After that last appointment, I had a total meltdown. It may have had something to do with the fact that I hadn't eaten or pumped for seven hours, but it had a lot more to do with Oliver's frequent spells, my recent bad experiences with crappy doctors, the lousy insurance deductible, the guilt I feel when leaving Bruce and Phoebe, the guilt I feel when leaving Oliver, the feeling that Oliver is growing up without me being there for every moment, and the fact that this situation isn't going to change soon enough. If being in the hospital was my marathon, then being in the NICU is like discovering that I wasn't just registered for a marathon - now I'm in an Ironman triathlon. I'm somewhere in the 2.4-mile swim, and since I'm hitting the wall I'm drowning.

Thankfully, the lifeguard is on her way. She has a flight to come save me next week. I'm still hopeful that Oliver will make it home then too.

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Blogger ellen said...

Emily, I'm sorry that there is so much going on (or not going on) right now. You're in my prayers and I hope to see you soon. And your mom is the best. :)

3:29 PM  
Blogger Chandra said...

I'm so sorry. I can't even imagine the stress and worries you feel. You're a tough lady. Hang in there and thank Heaven for "lifegaurds" in your life.

5:08 PM  
Blogger JoLee said...

Ugh. Emily. I am so sorry. Hang in there. Love to you and your family.

7:57 AM  
Blogger Anna Novick said...

I'm so sorry you are going through this. You're so resilient, but I hate thinking about the guilt you feel, since this is nothing YOU have caused :( I'm sure the words, "don't feel guilty," aren't going to help much. I wish I was there to help. It's a privilege to be your friend, and I know everyone else feels the same way. I hope you can let yourself lean on the lifeguards in your life without feeling obliged or guilty, because there is no reason to! That's what we are here for, and we wouldn't have it any other way!

8:38 AM  
Blogger heather said...

Oh Emily. My heart and prayers are with you.

9:58 AM  
Blogger Eli Enman/Molly Peters said...

I've been following your blog and just wanted to say that you are a good mom and an amazing woman. You'll all get through this. Your kids are so lucky to have you in their life.

10:10 AM  
Anonymous Anonymous said...

I've been following your blog and just wanted to say that you are a good mom and an amazing woman. You'll all get through this. Your kids are so lucky to have you in their life.

Kasie Enman

10:11 AM  

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