The next big step is upon us

Emma's shunt surgery is Tuesday morning at 8:00. What a big deal this is...and for so many reasons. Russell and I will walk her down to the OR from the room she's in now, and we'll have on the sterile gowns, cap, etc. We will physically hand her over to the OR staff (choking back tears all the while, I'm sure) and verify who she is, what type of surgery she's having, etc...you know, just to make sure they don't end up doing a hip replacement or something. The surgery should only take about 30 minutes, maybe a tad longer. Then they'll bring her right back up to her private room (Hallelujah, we can keep the room!), as long as she's not still on the ventilator. If she is still on the vent, she'll just go to NICU 1 for a few hours probably. Emma will be on antibiotics for 4 or 5 days after the surgery. After they take her off the antibiotics, it will kind of be our call as to when she can go home. Scary, huh?

Let me back up - Big Deal #1: the shunt will take the fluid and associated pressure off her head. She will have to lie flat for 2 weeks basically - ears/shoulders/hips all on one level. She may be upright a little more than usual at first because we've allowed her head to become pretty full...so we may need some extra fluid drainage right off the bat. But we have to be careful because there's more fluid than there's space in her tummy. Then we will learn how to feel her soft spots to determine if she's been upright for too long or lying down for too long. Let me go ahead and warn some of you who will be seeing her soon: her head will look a little large compared to what you're expecting...and you will be able to see the shunt for a while. It will eventually be almost invisible under the skin, though.

Big Deal #2: after the shunt goes in and she's done with antibiotics, the PICC will likely come out. Then some people at the hospital will probably start pushing Dr. Troup as to why she's still here. At that point, it's kind of up to us as to when she leaves because it will depend on how comfortable we are with doing wound care at home! SCARY!!! Now, my dad will go out and get a degree in wound care if that means that he can finally get to hold his granddaughter. The funny thing, though, is that I'm more comfortable with in-home wound care than I am with in-home shunt care. Those first two weeks after the shunt goes in scare the bejeebies out of me - having to monitor all that flat time and questioning whether the fluid level is ok, etc. I've had to teach nurses how to care for the wound...wound care, shmound care. The shunt, I'm not so comfortable with. Oh! I almost forgot - Judie, night nurse extraordinaire, told me tonight that she would be happy to stop by our house once a week or so to check out the wound. I'm speechless. Ok, not speechless, but overcome with love and appreciation.

Which leads me to my next point - shunt care coupled with visitors. Infection coupled with visitors. I've had conversations with several people here at the hospital about allowing visitors for Emma. First of all, because of both the shunt and the wound, we will all have to hold her flat on our laps on a pillow, just like we do now. Second of all, we have to filter (nicely) who can see her. This is the hard part. We've definitely been told no children. All we've been doing for weeks now is fighting infection, and the wound will still be really prone to infection for a very long time. Now we're about to have a device put in that, if infected, could be REALLY, REALLY dangerous and would make this infected wound look like child's play. Emma may be 7 or 8 weeks old when she comes home, but she won't have the immunity to airborne disease like other 7- or 8-week-olds.

Poor little Emma has some tummy problems again. For 2 weeks, she was eating a VERY expensive formula that has to be ordered, and it was causing a few issues. They began to gradually convert it over to a different formula. That move is only going ok...we've had a few little problems with it, too. Who REALLY knows what the core issue is...the formula? Not burping enough or digesting well because she's on her stomach? A side effect of the antiobiotics? And now she'll be going on some anesthesia and pain medication with this next surgery, which will throw another wrench into the plan. We may not get a good handle on her formula for another month or two, after we can rule out other factors. Diaper rash is back in full force, but it's still not as bad as last time.

Emma wasn't great on Sunday night. Russell and I crashed one of the supper clubs that our Sunday School class does. We ate with 3 other couples and had a blast laughing and talking with friends again. Ahhh, how nice to see people who aren't wearing scrubs. In the meantime, Emma was pretty fussy for my mom. We came up to the hospital to relieve my mom, and we stayed until about 11:00. Poor little Emma was uncomfortable, her hiney was hurting, she was gassy (and PEEEWWWW, SHE STINKS)...just overall unhappy. Sorry if this is graphic, but every time she pooted, I chuckled thinking about that commercial for I-don't-know-what where the baby starts talking in front of some houseguests and says something like, "Dad...blaming me for that smell...not cool." That is SO Russell. Anyway, she's been pretty good today, a little fussy tonight...but not bad.

From Saturday to Sunday, we didn't see a huge improvement in the wound like we had seen Thursday and Friday. But from Sunday to today - HUGE improvement! Dr. Troup saw it this evening and said something funny like, "Jumping jeepers!" at how improved it was since the last time he saw it.

As you can see, there are big things (SURGERY! OPEN WOUND!) and small things (diaper rash, gas, formula) that we're worried about right now. But it's so comforting to know that our God cares about these things, big or small, because they are all worthy things that concern US. I am grateful each and every day for that...I don't know why that thought sticks with me, but it does. So we pray for all of them and appreciate all your prayers for the same. Thank you, God, that you love Emma enough to care about all her issues, big and small.