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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Tuesday, June 25, 2013

A few more days...

When, when, when will he come home? Everyone wants to know.

Not for another five days (at least). He had another spell last night, which puts him home on Sunday the 30th at the earliest. If he has another spell today, tomorrow, whenever though, it's another five days. Booooo.

Our health insurance provider switches on July 1, so I was really hoping to have this whole hospital experience wrapped up by then. We shall see.

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Wednesday, June 19, 2013

Bruce's Piano Recital

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Bruce started playing the piano about a year ago and has made a lot of progress. He had his first recital last week and nailed it. He played "Dance of the Irish."

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Tuesday, June 18, 2013

The Oliver Update

Oliver is four weeks "old" today, but still not due for another four weeks. He is still working on waking up enough to eat a legit amount by mouth; he is starting his feeds, but rarely finishing them, so we still have some work to do. He just needs to eat by mouth enough to gain weight and be "spell-free" for five straight days to go home. Being spell-free means not having any episodes where the heart rate and blood oxygen saturation drop abruptly. We are on Day Two, but we aren't getting our hopes up just yet.
We are eager to get him home. I get super-grouchy if I don't get my Oliver Time and I can't seem to make plans beyond a day or two, so Scott wants him home so I can get my brain back (sortof). Scott has been nesting - repainting the living room, installing shelving - and whenever he asks my opinion on interior decor, I don't have much response. I just can't get myself to care about the living room walls right now, so Scott has free reign on design around here.
 Oliver is up to 4 pounds, 14 ounces.
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And because Oliver cries so infrequently, I had to record it. It's still quiet and (to me) sounds beautiful. 

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Friday, June 14, 2013

We are family.


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Saturday, June 08, 2013

NICU Mama

I feel like a NICU veteran. This is not a role I ever aspired to, but one I have been given - and it comes with some benefits. I get to interact with other "NICU moms," most of whom are new at the NICU thing. I feel like we are part of a sisterhood and I have something to contribute. Today another mom and I joked about the vast amount of time feeding our preemies (it's terribly inefficient: pump breastmilk for 15-20 minutes, bottle and label it 5 minutes, wash equipment 10 minutes, mix extra calories into it 5 minutes, feed it back to baby 20-30 minutes. Repeat every 2-3 hours). Another mom told me about her daughter's apnea episodes and how scared she was when her daughter stopped breathing and how frustrated she was that it seemed they would never go home. Phoebe had the same issues, so I shared a little of our history and we talked about apnea monitors for awhile. I just feel sorry for the NICU moms; most of them were completely blind-sided, whereas I had the advantage of anticipating this trial.
The nurses call Oliver a "rockstar." He is really doing well considering his, um, youth. He is 34.5 weeks now, just over 4 pounds, and finally has the coordination to suck and swallow. He is eating 3 of his 8 feeds by mouth every day, and once he can do all 8 we can head home.
Oliver hit another milestone this week: he graduated from a closed box-like isolette to an open air crib. He can now regulate his body temperature. And see that little green folder on the counter behind him? It's full of discharge paperwork. It will probably still be another week or two, but he is headed in that direction. Tonight Grandma, Scott, Bruce, Phoebe and I sat down to watch a movie. Phoebe said, "Our whole family is on the couch!" Then 30 seconds later she said, "Actually, something's missing: my baby Oliver." We all want him home.
I had to get a picture of this awesome sign. Bruce and Phoebe made this (with the help of Grandma Raymond, I'm sure) to welcome me home from the hospital a few weeks ago. Coming home after being in the hospital for so long was wonderful and strange. When I went into the hospital in April, there were buds on the trees. When I came out, there were green leaves everywhere. Somehow the whole world looked different - better. The day after I was discharged from the hospital, I went to church. During sacrament meeting, the congregation sang "The Lord Is My Shepherd" and Scott had to locate some tissues for me. The third verse sums up nicely how I feel:

"In the midst of affliction my table is spread.
With blessings unmeasured my cup runneth o'er.
With perfume and oil thou anointest my head.
Oh, what shall I ask of thy providence more?
Oh, what shall I ask of thy providence more?"

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Tuesday, June 04, 2013

Another awkward family photo

Not only do we need to Photoshop Oliver into this family photo, but we need some work done on ourselves. Yikes!

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Sunday, June 02, 2013

Growth

Oliver is up to a whopping 3 pounds, 12 ounces today. Growth is slow-going (or so it seems), but it is heading in the correct direction. This week we have been teaching Oliver to open his mouth correctly - with his tongue out and down rather than stuck to the roof of his mouth. We also tried breastfeeding with some success. He is still getting the hang of sucking and swallowing, but progressing well. Now he needs to beef up a bit so he has the energy to wake up and eat by mouth.
Bulking up is easier said than done. He is "eating" via the tube in his nose; every three hours he gets about 1.5 ounces of breastmilk mixed with formula powder to add calories, plus a little extra protein powder (he really is trying to bulk up!). Oliver sleeps almost the entire day, and the nurses like it that way: he is using all those calories to grow rather than to wiggle around or cry. I've only heard him cry 4-5 times since he's been born, and by the time I grab the camera he's done crying. He has a very quiet cry though - like a little lamb.
Yesterday we took advantage of the nice weather and headed to the beach. We met up with Miss J, who I'm told still talks about me but appeared much more interested in Phoebe. Granted, Phoebe was way more playful than I was; I sat in a beach chair under an umbrella almost the entire time. Phoebe ran around collecting shells, climbing rocks, and splashing in shallow tidal pools.
 Bruce helped build a sand castle city with a group of kids, found shells and even a live crab, did a little swimming, and got in a water fight with grandma.
Speaking of grandma, she is doing a fantastic job keeping up with Phoebe's playdates, Bruce's school schedule, and my recovery. Just in the past few days she has made butterhorn rolls, a pineapple upside down cake, blueberry pie, picnic brownies, and pasta salad.

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