Jan. 18, 2008

Ok, so yesterday was a less than stellar day. It took some adjusting to get Zoë’s setting right, then we were a little later than normal getting to see her last night. When we arrived, her room was closed to visitors for a bit. They do this for a few different situations; admitting a new infant, preparing an infant to go to surgery, and, the saddest reason, the death of an infant. The night Lennox died, they closed the room to visitors and, since it was shift change, essentially held up switching shifts for us. I’m very grateful for that and will never complain about being delayed in seeing Zoë because the room is closed for any reason. However, after worrying about her all day, then sitting in the waiting room for an hour trying not to yell at the young father who gave his four year old son Pop Tarts and cherry cola at 9:30 at night AND didn’t bring any toys for the child and can’t seem to understand why his son can’t sit quietly on the couch, and then finally getting back to see Zoë only to still have the room in a bit of chaos while they settled in a new patient, which makes Zoë cranky, the experience just broke me. We visited, we fretted over the nurse turning up Zoë’s oxygen up into the 50′s “to calm her while we’re there” (Yeah, no thanks…higher oxygen is what we’re trying to avoid. I can handle the alarms beeping and I’ll talk to my daughter to calm her down. Don’t give her more drugs just because you think it makes my visit more pleasant), then I sobbed the entire way home. I know this is a fairly normal phase and I know the jet is best for her, but the feeling of helplessness is sometimes crushing. OH, and we forgot to bring the six bottles of milk. The one big thing I can do to take care of her…pump milk…and we forgot it.

Needless to say, we were both anxious to get there this morning (and we definitely remembered the milk!). Her oxygen level was down to 30%. Her color was perfect. She would de-sat when she wiggled, then come right back up. We have imperical evidence now that that particular wiggle is her poop wiggle. One of our favorite nurses, Nurse T, had opened up her incubator to suction her and Daddy took the opportunity to take some photos (we haven’t taken any in about three days. Can you say withdrawal?) and Nurse T offered to undo her diaper for a naked butt shot. Who can resist that?! But, Miss Zoë had other ideas and that’s how we learned that the full-torso wiggle means poop. Guess who got to change her diaper? ME! I’ve never had that much fun changing a dirty diaper before. Zoë doesn’t care for the experience much, but she’s definitely fond of clean pants. She’s doing well maintaining her body temperature, so Nurse T left the lid up for a nice long visit and Zoë opened her eyes and waved and was generally happy and charming. We needed that. It made hearing that this morning’s xrays didn’t show any improvement a little easier. We can wait calmly for tomorrow’s. As long as we have one really good visit, I think I can make it through a few not as good visits.

Update: We just got in a quick visit tonight. Once again, we arrived just as they were about to admit a newborn and had closed Zoë’s room. We were going to try to wait it out, a race against how long it would take them to get the new arrival settled and how long I could go without pumping. But after we’d waited just a couple of minutes, we got waved back to the scrub room. I figured we would just get a quick update on Zoë, but instead we were given a quick “wash” with hand gel and a short visit. Since we’d had to wait last night for so long, the nurse felt bad for us and let us slip in for the few minutes before the new baby made it down from L&D. After our lovely long visit this morning, it was enough to just take a peek at her sleeping face, read over her chart, whisper that we loved her and then come home. However, I keep coming back to one thing. Twice while I was in the hospital, doctors commented on the excellent reports the nurses gave me…not about my health, but about what an easy patient I was and how much they liked taking care of me. I have one major rule in life. Always be nice to the IT people who keep my computer going, to anyone who handles my food, and to anyone with the ability to stick needles in my butt. Obviously, that’s a generalization, but you get the idea. I’m stuck in a bed, totally dependent on the nurses and the techs for everything, from the water I drink to a shower to my pain medications. Say Please and Thank you. Ask, don’t demand. Remember you aren’t the only one, and that while that five minute shower may be the highlight of your day, you CAN wait until the tech is caught up on all of her other patients and has five minutes to spare. Ask how the NICU nurse’s day is going. Make sure to ask her permission before raising or lowering the incubator. Ask questions and really listen to her answers. Say Please and Thank you. Learn names. Get out of the way when things beep. Remember those things, and when you absolutely hate the lunch you’ve been brought, they’ll find you a turkey sandwich. Remember those things and they’ll bend the rules to make sure you get a quick five minutes with your baby, rather than a 90 minute wait on a Friday night. I’ve never understood those who think pitching a fit accomplishes anything.

Stepping off my soap box now. We had a good day and that feels wonderful. Sleep tight, sweet Zoë.

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7 Responses so far »

  1. 1

    lisa4011 said,

    January 18, 2008 @ 11:42 am

    Oh hun, the first part of your post made me want to cry for the stress you’re being put through, but then the second part DID make me cry with joy! I’m so happy you had such a perfect visit, and congrats on changing that diaper!!! I’m sure it’s a moment you’ll never forget.

  2. 2

    0000xxxx said,

    January 18, 2008 @ 12:17 pm

    love seeing Mom in there….

  3. 3

    Stacie said,

    January 18, 2008 @ 2:31 pm

    I’m so glad you had a good visit. And a dirty diaper change! Yay!

    X-rays will show improvement tomorrow.

  4. 4

    staciet said,

    January 18, 2008 @ 3:24 pm

    My doctor’s analogy was that life in the NICU was like a stock’s plot chart with peaks and valleys. Overall, the outlook is positive, but there are days with downward trends. Those days are the hardest and always come when you least expect them.

    I am glad that today is looking brighter for little Zoe. She is one tough little girl, just like her mommy. And yeah for changing her diaper! It is those little things that make all of the difference!

  5. 5

    Chris said,

    January 18, 2008 @ 3:25 pm

    Just wanted to let you know that we’re thinking good thoughts for your Zoe and the rest of you. I hope tomorrow is an even better day for you!

  6. 6

    Ann said,

    January 18, 2008 @ 3:36 pm

    It seems strange to say it, but congratulations on getting to change the poopy diaper! May it be the first of many. You can really see that she’s grown in the new pictures you posted.

  7. 7

    laura said,

    January 20, 2008 @ 11:53 am

    as an ER nurse in a pediatric hospital, an ART patient and just in general i always put in practice those prinicples you mentioned. i am polite and smile at the people serving me food. i say please and thank you when i leave one of the ten thousand messages the ART nurse gets a day. and while i recognize that all of the parents i deal with are under considerable stress, i find that i do respond better to the parents who are polite and respectful of me vs those who are angry at me. maybe it isn’t fair, but it is human, to find 5 mins to get coffee for the parent who is nice to me vs the one who yells at me for having waited so long…because, really, in an ER all waits are long, and there is always something else that one could be doing.

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