Becca Meets Baby James

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First Visit to L&D

I had an appointment on Monday, and after looking at my blood pressure numbers from the weekend, Dr. Sizemore decided that it was time to send me over to labor and delivery for some more extensive monitoring.  I was officially admitted to Williamson Medical Center for the first time since I broke my pinky finger in 1990.  :)

They hooked me up to the monitors (tracking contractions - none - and Baby James' heartrate - perfect) and took my blood pressure every 10-30 minutes for a few hours.  At first, when I was lying flat in the bed, my numbers were ridiculously low.  Like making me look like a hypochondriac low.  One of the readings was 116/66.  WTF?  Then I sat up in bed - not even all the way, something like 45 degrees - and the numbers bumped back up where they had been, somewhere around 140/mid-80's.  I at least felt validated then, like I wasn't totally crazy.  :)

They checked my pee for protein, still negative.  They ran bloodwork again, still fine.  At the moment, we are dealing with a diagnosis of gestational hypertension (similar to pre-e, but without the protein indicating that my kidneys are failing).  It may yet end up being pre-e again, but who knows.  There's not that much longer in the pregnancy for pre-e to develop!

After seeing my blood pressure level out, even though it was still up, they decided that I could go home, but I have to be stricter about my bedrest.  I'm still only on "modified" bed rest, meaning that I can get up to go to the bathroom, to shower, to move from the bed to the couch to the kitchen table (sitting in a chair, not lying on the table, silly), but I really don't need to be taking care of Becca on my own, and it was time to officially go on maternity leave and stop trying to work from home.

So that's where we are now.  Sitting around.  But that's okay.  Church has been great with my leave time, so with the vacation time I've saved up, I should still be able to spend James' first 3 months in the world at home with him, which is good.  We have decided to go ahead and bump up his delivery to 39 weeks, assuming he doesn't decide to come before then and that I stay stable enough that we don't have to take him before them, just so that I don't use up another week of my leave waiting for the possibility of going into labor and attempting a VBAC, especially since there is no indication that I would even go into labor before my due date.  (Cervix of steel, I've got.  One complication we don't worry about.  :) )  So I'm a little sad to probably have to let go of the possibility of a VBAC, but it wasn't like my life depended on it or anything.  In fact, my life may depend on not holding out for one.  It did last time around!  :)  It would have been nice to possibly have that experience and labor not be something else that prematurity took away from us, but, wow, we've gotten to experience SO much more normalcy in this pregnancy that I can certainly deal with not having to deal with contractions, etc.  I hear they aren't much fun, anyway.  :)

Pouches for Parents

Two posts in one day...craziness, I know!  But this one's not about me and my little family.  Well, not directly.  But y'all have heard me complaining about the discomforts of hospital life more than once...and while we are staying far away from hospitals this summer (so far, so good), thousands of kids and their families are taking up residence at Vanderbilt Children's Hospital, otherwise known to Becca as "MY hospital!" (BTW, the current Vandy Children's marketing campaign - totally ripped from Becca's brain.)  And Vandy is great, but no hospital is actually comfortable, especially when you end up there on short notice and without the personal niceties of home.  So my friend Allison Glasgow, whose niece is often a patient at Vandy, is doing something about it.  She's a 31 consultant who's running a very special deal, outlined below. Basically, she's turning a staple 31 item into a care package for parents of kids in the hospital.  It's a brilliant idea (and one that I hope NOT to be on the receiving end of this summer).  I'll let her explain the rest in the flyer below, but let me also say that the Large Utility Tote she mentions (which you can buy deeply discounted as a bonus) is my FAVORITE 31 product out there, and I'll be completing our family's set when I make my pouch donation and buy one for baby boy, just as soon as his name is solid enough to be monogram-able.  Also note: the flyer says that she has to have your order by June 22, but she's willing to leave it open until June 29 - but that's a firm deadline so that she can get the orders in by month close.  To order, use her contact info in the bottom right of the flyer.  (You may need to click on the picture to view it larger.)  Thanks!

p.s. I'm not getting anything from this sale - except a great deal on baby boy's bag when I donate 3 pouches.  I just think this is a great idea, and one that hits home with our family and many of your families.  And if you ever find yourself heading to the hospital with your kiddo for an extended stay, I highly recommend taking your own toilet paper.  Theirs sucks.  :)

Seizure Update

Becca has continued to be...totally fine.  I just talked to her pediatrician, and he wants to do the EEG before we call neurology.  If the EEG comes back normal, he's ready to chalk it up to febrile seizures and manage from there.  (If that's what it is, there's not much managing to be done - just watch her fevers, treat with Tylenol, and be prepared to handle a few seizures here and there.)  If the EEG shows some areas of abnormal electrical activity and connectivity, we'll see neuro to see what they think.  So that's that.  Don't know when it will be scheduled; I'll let you know.

Back at the Hospital

I know I've been a crappy blogger lately, and I'll try to fill you in on all kinds of goings on, but I wanted to go ahead and tell you what happened this week with the little Boo.  The Big Sister Boo, that is.  The formatting is weird because I'm copying and pasting from another webpage, but I'm sure you'll manage.  :)  I'll let you know what the docs decide to do next week.  (And briefly: me and baby boy (definitely a boy) are doing fine and go back to the doc this week.  So far, so good there!)

[Background: Becca has had 2 other seizures in her life. One was clearly hypoglycemic-related (blood sugar was 45 at the time), and the other was related to an illness, though not necessarily febrile, as by the time the ambulance arrived (I was driving down the interstate at the time - awesome), she didn't have a fever. That time, they kept her overnight, gave her antibiotics for the underlying illness (which we had been at the doc for that afternoon), and sent us home with a med in case she seized again. That was over a year ago and probably related to a tick-borne illness.]

Becca came home from school at noon on Thursday (normal time) and told the babysitter that her tummy hurt and she wanted to lie down. She felt feverish, so the babysitter gave her Tylenol (I told her not to bother with a temp b/c I trusted her judgement that she was feverish but not crazy hot), and they had a lazy afternoon sleeping and watching tv. 

I came home at 6:30, and she ran to the door, jumped up and down, etc to greet me. So she definitely had some energy. She still felt warm, but I planned on giving her Tylenol at bedtime (just an hour later). She still wasn't crazy hot or anything.

So by 7:30, I'm getting her bedtime stuff together while she's watching baby videos of herself (so cute). I'm assembling her feeding tube stuff in the kitchen and hear her making some whimpering-type noises from the couch. I check it out; she's seizing. I get her rectal Diastat kit prepped; we're supposed to give it to her if a seizure lasts longer than 5 minutes. It lasts for at least 4 minutes (assuming it wasn't going on TOO much longer before I noticed), and then she stopped shaking but was still out of it and not really responding for another few minutes. After about 15 minutes, she's responsive, but kind of drunk and -- this was the scary part -- unable to talk. She would answer questions by nodding or shaking her head, but couldn't get words out. If you've even seen someone who has had a stroke trying to talk, that is what it looked like - sticking her tongue out a lot, trying to form words with her mouth, but not being able to do so -- or even get any sounds out. Then she vomited - yellow, bilous-looking stuff. I took her temp after the seizure, and it was 104.3. Blood sugar was 173. Breathing was fine, didn't appear to desat at all.

The on-call ped said that she "absolutely needed to come in and be seen," so I got our stuff together (sad how quickly I can pack a hospital bag for me and her these days  ) and waited for DH to get home (5 minutes away). If John hadn't been close, the ped was going to have us call an ambulance so that I could watch her during the ride. 

So we drive 40 minutes to the kids' hospital, are immediately triaged (never given Tylenol because at that point she wasn't even feverish - at all). She started talking (slowly) on the ride in, which made me feel better. In fact, her first verbal response was her Simba "ROAR" when I prompted her with the line from "I Just Can't Wait to Be King." Pretty adorable. So - we go through triage, and they send us to the waiting room. For 3 hours. By the point, she's pretty much herself, though still her sick self, and she pretty much laid in a chair and slept. She's 3 hours behind on her tube feeds (not having had anything since lunchtime), so I start bugging the nurses to get us back to a room so we can start feeding her, or we are going to be looking at a hypoglycemic seizure on top of the first one. We even considered leaving because I felt like what she needed most was to sleep and get her feeds, but I was afraid insurance wouldn't pay if we left without being discharged.

Finally, we get back to an ER room. The nurse checks her out; vitals are fine. After about an hour, we see a resident. All is well. I'm lying on the cot with her, and John is miserable in a crappy chair. After we had been in the room for 3 hours - now it's 3 am - we still don't have her hooked up to feeds b/c the nurse needs the docs to order it, and we haven't even laid eyes on an attending yet. I mean, I'm glad we weren't in the trauma room keeping them all busy, but, really, 6 hours later, I would have thought an attending would have at least heard about us. So I go out to the nurses' station to remind them that we are here, and one of the nurses is quite surprised to hear that we've been waiting in a room for 3 hours. Yes, and 6 total, thank you. And at this point, John is "sleeping" on a sheet on the emergency room floor. Ew.

After that, things start moving; we see the attending, he orders a strep test. I remind them about tube feeds, and that *eventually* gets started as well. Becca was a super champ, of course, even "roaring" again so that the nurse could perform the strep test. The attending also wants us to get a urine sample. Right. Get the not-potty-trained 3-year-old away from home to pee in a cup. We give it a couple of tries, but give up, not wanting to traumatize her to the whole peeing on the potty thing, which is *finally* kind of getting the hang of. We ask if they have to have it (the only other option is to cath her - ugh), and the docs says that basically, he wasn't looking for anything in particular, so never mind. Phew. Feeding pump alarms every 2 minutes (literally), so John and I take turns sitting by it and restarting it every time. The nurse doesn't know how to use it - we had to teach her. (But really, she was wonderful...we have just dealt with a lot more pumps than she has.) Strep test comes back negative. Docs don't know what else to do; nurse suggests they send us home. Great idea. So we are out the door about 5 am (after arriving at 9 pm), with a *suggestion* to call neurology to set up an EEG and consult. 

We drive through Krispy Kreme (which just happened to open early on Friday mornings - thank you, Jesus  ) and get home about 6. We all sleep until 11 and proceed through a normal day and weekend, albeit on the lazy side. By the time we got home, she was COMPLETELY FINE. That's the oddest part to me, and kind of nerve-wracking. I mean, if the seizure were really related to the (brief) illness/fever, why/how could she bounce back so quickly? I mean, the fever was COMPLETELY gone by the time we got to the hospital, and she was herself the next day, even without sleeping much. So that concerns me that there might be some underlying seizure disorder that we are just now seeing. The good news is, though, that if there is an ongoing condition, it appears to be mild, since we've only seen 1 seizure a year (though who knows if others have happened during the night, etc - but still, if so, she bounced back quickly). I doubt that she'd have to go on full-throttle seizure meds, but it's another thing to watch for, I guess. 

Test Results & Bug Spray

Okay, the results from the blood tests came in, and they DIDN'T show ehrlichia.  The good doc did say that the titers can come back negative early in the illness, so if we wanted to be academic about it, we'd test again in 2 weeks.  Since she's pretty fully recovered now (still tiring quickly, but that's all), that would be cruel to put her through drawing all that blood again just to satisfy our curiosity.  So we'll never know for sure.  I asked him what he thought it was, and he didn't really have a guess.  Darn those doctors who are willing to say, "I don't know!"  (Just kidding, of course - that's actually a sign of a really good doctor.)


But since the whole incident instilled in me a phobia of ticks on my child, I asked him for recommendations on insect repellent, and he magically produced a wonderful handout on just such matters, and another one on sunscreen just for the heck of it.  This, of course, makes me want to break into the office to seize handouts on every possible pediatric topic, like my possessing a sheet of recommendations and warnings will somehow scare away anything that could possibly harm my baby girl.  While the handouts may not be that effective, I did learn a thing or two about the appropriate use of insect repellents, so consider this your Itty Bitty Hill  public service announcement: my paraphrase (or better yet, my "precis," or an homage to Sarah Bayrd) of the American Academy of Pediatrics handout on bug spray:

• Usually bug bites are just annoying, but sometimes they can make your kid stupid-sick.
• Don't bother with the non-chemical means of repelling bugs from your kids.  Most of them ain't gonna work.  If you don't want to put chemicals on your kids, that's okay...but they're gonna get bit.  I will admit that they say that repellents made from some essential oils do offer some protection but they are "much less effective repellents" and last less than 2 hours.
• DEET is no longer considered bad.  In fact, it's your best defense.  Just don't use a spray that is more than 30% DEET on your kids.  
• DEET levels work kind of like SPF - the more DEET in the spray, the longer the protection lasts.  To quote: "For example, products with amounts around 10% may repel pests for about 2 hours, while products with amounts of about 24% last an average of 5 hours."  But once you go over 30%, there's no additional benefit, so no need to go overboard on the chemicals.
• Even though I just put DEET and SPF in the same bullet point (did it again now!), don't use products that contain both - the DEET makes the SPF less effective and you may end up overdosing on DEET because you're likely to reapply it more often.
• If you are particularly concerned about ticks, you can treat your kids' clothes with permethrin, which kills ticks on contact.  Do not apply it to your kids' (or your) skin, just on their clothes, where it will last for several washings.  I'm considering doing this to a few pairs of B's pants and her jackets.  We don't like ticks 'round here, that's for damn sure.
• Something they recommend that I won't do: "Avoid dressing your child in clothing with bright colors or flowery prints because they seem to attract insects."  Um, too bad.
• Don't use anything on babes younger than 2 months. And don't spray kids in the face.  Spray your hands and then rub it in their face.  But not in their eyes.  'Cause that's just mean.
• And I love this one: "Remember, children need and love to be outdoors."  So now that we've made you paranoid, go play outside.  

Speaking of being paranoid...some of you have asked how we're doing after the whole hospital adventure.  I'll say that we are doing fine, for the most part, but I definitely think that Becca and I are a little jumpy still.  (John Hill continues to be impervious to worry, though I think he's really just delegated it to me.)  When we were listening to the president's speech on Libya on Monday and heard him say "hospital," Becca picked up on it and told me that we were going to the hospital.  (Interestingly, she wasn't upset about it at all.  Hospitals are just places you go every now and then.  And sometimes you get free blankets there.)  But she freaks out when I say that we need to do something quickly and says, "No tick!  No tick!" because quick=tick to her ears.  And I nearly had a panic attack after scheduling Becca's first date with a teenage babysitter as I immediately pictured everything that could go wrong.  (Logically, I can tell you that the far likeliest scenario is that everything will be absolutely fine and that the next likeliest scenario is that something will happen but the babysitter, a very responsible high school senior, will handle it beautifully.)  But I think the jumpiness is natural, so I'm trying to give myself grace about it.  And I'm saying "fast" instead of "quick" around Becca.  :)

Our First Ambulance Ride

Wohoo!  I first I was hoping would never come...

I have a migraine and it's been an awfully long week/end, so I'm going just the fact on you here.  Perhaps I'll add some reflection later. 

Last Friday, Becca had 2 ticks we pulled off of her.  Saturday, she had another.

Becca threw up on the way to therapy on Wednesday morning.  She'd started getting a little cough and threw up.  Not altogether odd, but a little unusual for it to happen in the car.  And really gross.  Big props to Miss Ashley for helping clean her up.  Probably not in her job description.

Thursday morning, we got Becca up for school and found that she had thrown up in the middle of the night and slept in it.  Ew.  Again, a little unusual, as she usually wakes up.  Just as we were walking out the door on Thursday morning, she threw up again.  A pain, but not unusual because she was coughing.  She went to school (this is so common for Becca that it doesn't keep her out of school), we went to work. 

I pick her up at school at 3.  Her teachers mention that she threw up her bolus feed (again, not unusual - but I'm noticing a pattern here) and that her eyes had just started to look a little red.  Almost everyone in her class (including both teachers) have had pinkeye in the past week, so they thought Becca was finally catching it, too.  As I held her, I noticed that she felt hot, so we took her temperature - 101.5.  I got the heck out of dodge and called the pediatrician so they would know we were on our way.

We get to the ped and thankfully our regular doctor was in.  (God bless Mark Rawls.)  Of course, they take her temp, and she doesn't have a fever, but she has lost 3 ounces since the day before.  I give him the story, he examines her, she throws up all over me, she acts SUPER puny, he gets concerned in that I'm-not-going-to-worry-the-anxious-mother pediatrician kind of way.  I didn't realize how concerned he was until I asked him about a general developmental thing and he saids, "Let's not worry about that right now and focus on the illness at hand,"even though he's always willing to discuss developmental stuff ad naseaum with me. 

He was particularly worried about the tick bites and went back and forth about whether we should do labs, start antibiotics or both.  We opted to start the meds and do the labs, which would not be definitive for tick-borne illness (hence the question in whether to both with them if we were going to treat anyway), but could show us some common indicators for ehrlichiosis.  (Google it and pick a reputable website.  I'm out of energy to do it for you.)  We had the blood drawn, which was miserable, and Becca cried for the next 45 minutes while we made our way over to the children's hospital to pick up the prescription b/c regular pharmacies wouldn't have it.  There's a problem with the insurance, etc., we can't get it until the next day unless we pay out of pocket, blah blah blah.  So I shell out the cash and get the heck out of dodge. 

Becca actually asked to eat (!!), so we stop for dinner and our friend Emily joins us.  Becca's actually happy for the first bit of dinner (she LOVES Emily), but then she gets super-fussy.  While we're eating, Dr. Rawls calls (that rhymes!) and says that he's glad we're doing the medicine because her labs are suspicious - platelets are low, one kind of white blood cell is high and another is low, liver enzymes are elevated (which she has a history of).  Of course, she hasn't actually started the antibiotics yet because I don't have the right syringe to fit into her Mic-Key button, and she's sure as heck not going to take it by mouth.  Oh, and even though she asks, Becca doesn't actually eat much of anything. 

We head to the car, and Becca perks up.  She's happy to be outside, says goodbye to Emily approximately 25 times, starts singing.  We're halfway home (from Green Hills for you Nashville folk), and she's still singing "Happy Birthday" to Emily (which we sang to Emily 3 weeks ago).  It's dark by now, after 7 pm, and at some point she stops singing.  At exit 65 (Hwy. 96), I notice that her right arm is sticking up at an odd angle, and I reach back to hold her hand, and it's rigid and shaking.  She won't answer me, and I can't really see what's going on.  I can't pull over because I'm in the middle of a major construction zone.  It's raining a little bit.  I know there's some places I could cross the median and head back towards the hospital but I can't see them.  I end up talking to her, trying to get her to respond, holding her hand and calling 911 while driving a.l.l. t.h.e. w.a.y. to the next exit, #61 (Peytonsville Rd./Goose Creek). 

I pull into the Shell parking lot.  I want the 911 dispatcher that my phone is about to die and have them have someone call John and tell him to meet us at the hospital.  My phone dies.  Becca has stopped seizing by now, but she's still non-responsive.  She's breathing fine and her color looks okay, as far as I can tell in the dark parking lot, but she won't answer me or look at me.  I panic slightly, trying to find somewhere to park the car that doesn't have a tow away sign (funny where my anxiety goes, isn't it?), park, and pull her out of her seat.  I start throwing things in bags (I carry a bunch of crap in my car), keep working with Becca, and wait for the ambulance, which arrives after just a couple of minutes. 

My new best friend, Amy, and her partner check Becca out, see that she's stable, send the firefighters away when they get there with their siren blaring.  Check her blood sugar - 95 - beautiful.  Check her O2 sats - fine.  Pulse - fine.  Responding some but definitely NOT acting like Becca.  They ask if I want to use our carseat or theirs, so I grab ours.  (How weird is that to think about?  They put her in her carseat and hooked the carseat to the gurney.  Makes sense, but odd.)  Nice EMT guy whose name I don't know tells the gas station guys not to tow my car.

We make our way to the hospital (25 miles or so?) without the sirens, which I learn you only get if you are dying.  No thanks.  I borrow dude's phone to call the pediatrician and almost yell at the answering service when they keep asking their usual inane questions ("what's her approximate weight?  R as in rabbit, e as in elephant, b as in boy..." etc.) and tell them just to page the damn doctor and tell him that we're on our way to the emergency room.  Becca is distraught at this point, but Amy and I finally get her to calm down a little bit to sing her favorite line - "aaaall true da town" in "Wheels on the Bus" in between tears.  Super pitiful.  As we pull in to the ambulance bay, Dr. Rawls calls the guy's cell, and I tell him the whole story in what turns out to be the first of about 1,400,032 renditions of it.  No, that's already the third because I've already told the dispatcher and the EMT's. 

John's out in the waiting room at this point and I ask the nurses to go get him but they keep asking me questions while he just waits out there.  Annoying.  He always makes Becca happy and I'd kind of like to see him at this point, too.  You've got about 15 people just standing around who could get him. 

Oh yeah, Becca threw up in the ambulance, too.  And another time while being checked in.  And another time.  And one more time, I think.  I'm still wearing my vomity clothes from earlier anyway.  She's had a slight fever when the EMT's got her, so they tried to give her Tylenol and she throws it up.  (Fever's only 99.9, so it doesn't seem like a febrile seizure, which are not caused by high temps but by quick spikes in temps, but with one that low it couldn't have "spiked" all that quickly.  And I think the kind of seizure looks different or something like that.)

But back to the hospital - we see a million doctors, but there's no mad rushing around or anything.  She's definitely stable at this point, though definitely not well.  The nurse tries to tell me that I can't hold her while they put an IV in, which I tell her (in more polite terms) is total bullshit and I will be holding her, thank you very much.  (Do I hear a cheer from my child life friends?) 

We get a Mic-Key button extension and give her the first dose of the antibiotic.  ER doc is also thinking that it could be ehrlichiosis.  It's rare to have such a serious reaction but it's certainly not unheard of; in fact, every year a few kids in Tennessee die from it.  (One of my dear reader's child had a very severe case of it last summer, in fact - Valerie, I've been thinking about you guys for days now!)  Even though she's stabilized now, they want to keep her for a while to observe her in case this is the beginning of things going very badly very quickly, as it's known to do with kids her age exposed to ehrlichiosis. 

Flashing back to the night that I spent in the ER in the CRIB with Becca last summer, I immediately start lobbying for a cot for me.  (The cots are awful but definitely better than the crib.)  Of course, the hospital is full, like it always is (build the darn expansion already, please!  Donors, do you hear me?) but they think they maaay be able to get us a room.  Such a tease.  I do try to make the case, though that after you've spent 150 nights in the hospital, you ought to get bumped to the top of the bed board.  We don't get a real room, but we do get bumped over to the observation area, which is much nicer than the ED - it's bigger, we share a bathroom with the folks next door instead of using the emergency bathroom in the hall that gets REALLY gross as the night wears on, and Dr. Rawls will be our attending instead of the ER doc (who is lovely but doesn't know my kid).  I get a cot, but I do end up spending a couple of hours in the crib b/c Becca keeps waking up thoroughly confused (of course). 

I've pushed for them to start her feeds or to give her the very strong sugar water IV fluids so as to avoid a repeat of the Emergency Department Blood Sugar Debacle of 2010, so they get her milk and get it going.  She doesn't have to be hooked up to any monitors or anything and the residents on duty assure me that I'll wake up if she has another seizure.  They just want her to be at the hospital in case anything does happen, which sounds like a good plan to me.  We deal with logistics: John swings by Mapco to get me some essentials and heads home to take care of the poor pups who have now been in their crate for 14 hours.  (Mental note: give housekey back to our key-keeping friend, KCC.)  Mark and Marne (from church) have brought John's car to the hospital (Carol dropped him off b/c they were all at a dinner together), and we send them to get my car from the gas station and take it to their house.

Becca and I have a blessedly uneventful (though definitely not restful) night.  I ask the residents if they can find a stuffed animal or soft blanket for her since we don't have any of her loveys with us - silly me thinking the docs would have any clue about this.  Eventually, I ask our Care Partner (m.a.), Princess, for one, and she finds a hot pink/zebra stripe supersoft fleece that will forever be known as Princess Blankey.  Rock star! 

In the morning, I keep expecting doctors to wake us up at 5, but we don't see any until close to 7:30, and Becca even slept until about 7.  They do their assessments; all clear.  Dr. Rawls comes by a little after 8, and the scene is much like the first time we met him after Becca's g-tube surgery- Becca and I are cuddled in the bed while she dozes and he sits in the rocking chair, which I remember because I liked that he didn't stand over us and talk at us.  Good doctor.  He wants us to stick around into the early afternoon to give the antibiotics more time to work (got the 2nd dose that morning) and make sure she's still improving.  By noon, Becca is almost totally herself again, and I'm begging the nurse to call the residents to discharge us.  (We'd already gone on a few hospital adventures and when John got back and took her on a walk, they even saw Miss Melissa!) 

The orders come through and we have the easiest discharge ever.  The nurse (Hope - who is awesome) encourages me to hold Becca while they remove the IV.  Becca's now covered in Dora Band-aids not because she is covered in boo boo's but because she loves Band-aids, and I had happened to buy a box at the pharmacy, so with every unpleasantness she got a new Band-aid.  She still won't let us take them off.  ("Leeb it oooooon ban-ai!") 

Becca falls asleep on the way home and climbs into bed as soon as she can.  She sleeps for 4 hours.  I get home little bit later (stopped to get my car and pick up some food) and also sleep for 4 hours.  She and I repeated the pattern this morning - the nap that is, not the hospital run.  She's been pretty pitiful and puny today; she obviously still doesn't feel very good.  She threw up last night (like normal) and after her bath this morning, she REALLY didn't want me to brush her hair - hiding it under a hat from me and everything - so I'm thinking her head was hurting. 

So - what did/does she have?  It could be a random virus.  It could be ehrlichiosis.  It could be both.  They drew blood to run tests for ehrlichiosis but they won't be back for a few days (that's why we didn't run those tests to begin with - you've GOT to start the antibiotics before the results come back anyway).  Will she be okay?  Should be, even if it is erhlichiosis.  The antibiotics are pretty awesome (doxycycline).  Will she have another seizure?  Maybe.  It could be the seizure activity is isolated to this particular illness.  It could be that she'll be prone to having seizures when she's sick.  If that's it, most kids grow out of us by the time they are about 5.  There's a very, very, very small chance (maybe 5%) that she has a form of epilepsy, but unless she has another seizure, we're not even going to see a neurologist.  We do have a prescription for an emergency medicine to give her if she has another seizure, but Dr. Rawls thinks that we won't need it - he wasn't even going to write it for us, but the residents did, and he agreed that it's a good thing to keep at home, though we don't have to mess with taking it to school, training all her caregivers, etc.  (Thank goodness - we're about to get so complicated that only nurses can take care of her!) 

Here's the bit that I find oddly encouraging: Dr. Rawls said that nothing they did for her was based on her history.  We may have acted more quickly because of her history, but they would have essentially done the same thing for any other 2.5 year old with the same issues and a recent tick bite.  So this was actually a regular old kid illness, not a preemie thing.  How 'bout that?!

Post-Op Babble

Wondering how Becca feels tonight?

I think she's doing okay. :) She woke up from her afternoon nap babbling away like this and didn't stop until we put her to bed. Same thing happened after her first set of tubes. I think that now she can hear better, she just wants to talk to hear herself! It's pretty hilarious to watch. By the time I filmed the video, she was getting sleepy, but, wow, she's been active this afternoon.

As far as the actual surgery...it went well. I started to get a little nervous because it took a little longer than we expected, but it turns out that her right eardrum was retracting into her middle ear so much that it was hard to get the tube in. (Basically, the pressure built up in the middle/inner ear kind of sucks the eardrum back...which sounds pretty painful to me!) It also turns out that her adenoids were "big and gross," so even though we had just planned on taking them out as a precaution, they really did need to come out. It's a really good thing we were able to get in for the surgery so quickly! Becca should be a lot more comfortable now...not that she was showing us that she was in pain, tough kid!

Like I said before, she had a rough wake-up, as usual, but it was actually a little better than normal, since she "just" cried for hours instead of screaming, wailing, and crying. Still pitiful, though. AND they gave her the D-10 IV fluids instead of the normal stuff after surgery...and I didn't even have to insist too much. I realized on the way home that though we've never had a really scary surgery, we've never gotten to take her straight home after surgery before...so it was nice to be quite boring (albeit the loudest party in the PACU).

My guess is that over the next few days we'll start to see some improvement in her speech and balance, though the balance bit might just be some wishful thinking, according to the doc. Speaking of the doctor, I was again reassured that we made a good move by switching ENT's. Dr. Goudy is a much better match for Becca's issues and my, um, anxiety.

Oh, and our favorite pirate pastor came to pray with us before surgery and even prayed in kid language. I love that he knew that Becca's spiritual needs were as important as our own, if not more so!

All in all, I couldn't ask for more out of today!

Home

Hey! Surgery went well. We're home and nearly all sleeping. (I'll be drifting off in a moment, hopefully. Last night was kind of rough and this morning was...early.) No issues with her blood sugar and no trouble with the surgery, but, as always, Becca woke up quite distraught (to put it mildly) and cried for 2 straight hours. Again, we got the "maybe if you go ahead and take her home she'll feel better" treatment. I'm not complaining about that; it's just kind of amusing to be pseudo-kicked out of the PACU. Cousin Emma knows the feeling. :) I'll give a few more details later, but now, I sleep. Thanks for the advice, kind words, and prayers!

Upcoming: Surgery #4

Yup, we're going in for another surgery this week.

At last week's audiology and ENT appointments, we determined that Becca is again having trouble hearing because she has fluid behind her eardrum. (This is the same issue that made her functionally deaf by the end of her NICU stay.) Her first set of tubes was placed at the beginning of February 2009, and her hearing dramatically improved instantaneously. Since then, we've gone through, "Hmmmm...I can't see the tubes...but they are so small, I'm not sure I would..." and, "Well, I don't know if she's hearing and just doesn't want to participate in the tests...or if she's just not hearing..." and (from our now ex-ENT), "She's got irreversible nerve damage; let's get her fitted for hearing aids ASAP," and, "No, let's sedate her and test her hearing first [this past February]...Ha! He's wrong!" and, "Hmmm....maybe she does have fluid again...let's give it a few months and see if it drains..." and then, last week, "Yep, the tubes are definitely gone, and she's definitely got fluid keeping her eardrums from moving, so it's time for surgery."

Well, at least we know we covered all our bases. :)

So, on Thursday morning at the crack of dawn (who am I kidding - before dawn!), the three of us will head up to Vandy, where Dr. Goudy will place a new set of tubes and remove Becca's adenoids. Right now we don't know if her adenoids are enlarged or anything, but when a kid gets a second set of tubes (most don't need a second), removing the adenoids reduces the chance of needing a third set by 50%. The hope, then, is that by doing both now we'll give her itty bitty ears a better chance of draining the fluid so that a) she stops getting ear infections (though she hasn't had that many...maybe 3 this year); and b) her eardrum can move, thus enabling her to hear clearly. She obviously still hears, but we have noticed that her new words are not very clear, and I'm putting the pieces together to realize that the muddled hearing might be the explanation for the mildly-delayed expressive language score we saw in her Bayley exam.

We're feeling good about the surgery. The difficult bit is figuring out how to maintain her blood sugar when she won't be getting all of her overnight tube feeding on Wednesday night. (Before surgery you have to stop all food, milk, formula, etc at midnight.) Remember, when she misses a night feeding, she gets hypoglycemic - and that's when she had her seizure in the hospital. We are working with the anesthesiologist, our endocrinologist, and our pediatrician to come up with a plan (other than mama putting the beatdown on any nurse who says that she doesn't need IV fluids, and the extra-sugary ones, to boot), and our current thought is to stop her formula at midnight and switch over to apple juice (through the tube, via the pump) until we have to stop all fluids at 4 am. While she's in surgery at 8, they will place an IV and begin fluids (D-10), which we will keep giving her the whole time she's in recovery (about 5 hours, probably). I don't know if this will be enough, since apple juice is not nearly as rich as her formula, but we'll also be checking her blood sugar periodically to make sure she's doing okay.

If none of the ear stuff made sense to you, here's a diagram that may help. (The tubes go where the eustachian tubes are labelled - they help kids with small or underdeveloped eustachian tubes drain fluid. See how enlarged adenoids could also block the tubes?) If you have specific questions, feel free to ask in a comment. Also, if you have experience with adenoid surgery, I'd love to hear any tips or stories! I hear the post-op breath is AWFUL! And, as always, we'd appreciate everyone's prayers, for the prep time/feeding issues, the surgery, and the post-anesthesia hysteria we tend to see with Becca.

And Home

We finally got home from the ER at noon on Saturday. Yes, we had to stay for 14 hours to have a 5 minute procedure done. I'm not even exaggerating. I spent most of the night in the crib with Becca until I was finally able to track down a nursing student who was willing to find a cot for me around 2:30 or 3. Insanity, I tell you. And it's not because the ER was crazy-busy. The surgeons just didn't want to put the button back in at night "because of the risks of needing emergency surgery." I have a hunch that the translation of that statement is "because either the attending surgeon or the radiologist refused to come in on a Friday night." Punks. I mean, really, I didn't want to be there, either, but -- hello! -- this is why you are paid hundreds of thousands of dollars a year. I don't know for a fact that this was the issue, but given the experiences some of our friends have had with weekend feeding tube issues, I'm pretty sure that's the case. Especially since, even after the button was finally placed at 7:30 am, we had to wait 1.5 hours to get the x-ray done -- the x-ray that was to check for placement, in case we had perforated her stomach and required emergency surgery -- until the radiologist got around to coming in. Seriously, if it were such an emergency risk, why did we have to wait 90 minutes to make sure she didn't need surgery?

Adding to my frustration is the fact that having to wait until morning meant that Becca didn't get her Friday night feeding, so she went nearly 30 hours with her primary source of nutrition (her formula). (She had some food during the day, but not much. We count on her formula for her nutritional base.) Remember last time she was NPO? And how she had a possible seizure because her blood sugar dropped so low? To 40? I mentioned that to the ER doctors and suggested that she be put on the IV fluids with a higher glucose concentration (the one she ended up on after the seizure) in order to prevent hypoglycemia. They decided not to bump her up and said that they would check her blood sugar throughout the night, but they never put the order in, so her sugars were never checked. When we got home and Becca literally just laid down on the floor, I decided that I needed to check her levels myself. Her blood sugar had dropped to 44, which is dangerously low. I called the pediatrician (and my wonderful pediatrician cousin), bolused her a few ounces of juice, and stuck some cake icing under her tongue, and after 25 minutes, it was back up to 82, which is within normal limits. Needless to say, I'll be more insistent about her tendency towards hypoglycemia when she is made NPO in the future. Oh, and they didn't give her either of the medicines she should have taken Friday night and Saturday morning. Seriously?

There's probably an e-mail to patient affairs in the future. I mean, I'm sure there were much sicker kids in the ER that night, but we had a pretty miserable time, exposed Becca to all kinds of ER germs, missed several doses of medicine, ruined our fun Saturday plans (a birthday party AND a trip to the zoo!), and neglected Becca's nutritional needs to a degree that put her at a very high risk of seizure or other issues...and I still haven't heard a decent reason why we had to wait all night. I'm trying not to make assumptions, but I will be asking some pointed questions.

But, we are home, and after Saturday afternoon naps, Becca and I are our usual chipper selves (meaning, of course, that Becca is chipper and I am at least not mad at the world anymore). And now SuperDad is home from camp, too. (Well, he's still at church right now, but he's in town.) So all is well enough.

p.s. By the end of the stay, I was helping myself at the sticker station in the ER. Thank God for Sesame Street stickers!

Back to the Hospital!

Yes, I am trying to use that title as much as possible. Seems it's a theme these days.

While I was checking the volume of water in Becca's mic-key button balloon (which holds it in), she squirmed at just the wrong time, and the button popped out. Eventually, I'll be able to pop it back in myself, but while it's so new, the surgeons have to do it. Which, since it's Friday night, means a trip back to the ED for me and Itty. (SuperDad is still at camp. He misses all the fun.)

Hopefully we'll be out of here in a little while. If you don't hear otherwise, assume all is well. Whenever we get home, I'll probably choose sleep over posting. Or maybe a shower, since I'm still covered in camp gunk. Ew.

Hospital Fun

Our time at Vanderbilt Children's Hospital recently wasn't all gloom and doom. Becca manages to have fun everywhere she goes, whether it's...

exploring underneath the hospital crib....

having a bath in the sink...

making the rounds, waving like a princess from my wagon chariot...

getting tucked into bed with all of my friends...

being adorable with Mommy in my 4th of July dress...

playing with my borrowed naked baby...

(thus started our obsession with "ba-bie")

hanging out with my buddy Daxton...

(Seriously, could he be any more handsome?)

meeting a baby with a mic-key button just like mine...

(Sorry, not the best picture, but here's what the button looks like up close.)

snuggling on the bed with Daddy after surgery...

or, our favorite, playing on the dragon playground on the 6th floor!

Riding the dragon!

(Playing our favorite new game, "I see," as in, "I see Becca!")

(Itsy Bitsy Spider with Daddy..."out came the sun...")

It's a lovely day when you're with Be-ecca!

Aaaaaaaaand, We're Back!

After a very uneventful trip to the ED and a very frustrating 90 minutes at the pharmacy, we are home in one piece (well, two pieces since Becca and I both went). It looks like she's developing an infection around her g-tube site, which we are now treating with oral antibiotics. And I use the term "oral" loosely. Apparently this drug is pretty darn gross, so we'll just skip the oral part and shoot it down her tube. There's the upside of the tube!

And swimming is still allowed! :)

Back to the Hospital...Again...

We're heading in to Vandy for Becca's first-ever ER visit. Nothing too scary, but the doc on call thinks we need to have a pediatric surgeon look at her g-tube site, which is not looking too pretty...possible infection. I'll try to keep you posted, but we're not too worried.

Home Again!

We got home yesterday around 3 and had a good night last night - no problems with the pump, tube, or anything! The doctors still don't have a great explanation for the low blood sugar, but they sent us home with a glucose meter so that we can check her levels 3-4 times a day. Lots of needle pokes, but she's a tough kid, I guess. We go back to endocrine on the 20th, so they will evaluate the log of her sugars and see what we need to do. Chances are, it was just that she had so little reserves that after going 2 days without any food, her body just wasn't getting what it needed from the IV fluids. Hopefully next time we have to go that long, the doctors will be willing to give her TPN (total parenteral nutrition, which goes through an IV, like what she had in the NICU when she wasn't on full feeds) so that she'll be able to regulate things better.

Thanks for all the kind thoughts, prayers, visits, gifts, and encouragement these past 2 weeks! It wasn't the best 2 weeks of our lives, but I'm feeling good about everything that came of it - and about being home in "new house!"

Almost Home?

Surgery has removed the sutures and signed off on our going home! No baths or swimming for a week (from Thursday), but she's already back to eating her Cheerios! We're waiting for the GI team to round and to hear from endocrine. I want to know what's going on with her blood sugar before we go, but I think that's it, apart from packing up the ridiculous amount of stuff (or "plunder," as my mom would say) we've accumulated over the past two weeks. I see several trips to the car in our future.

Remember when I mentioned Becca's big playdate with Ms. Melissa a few days ago?

They had so much fun - I think they visited the trains, the fish, the dragon playground and 2 playrooms AND they went to medical play with the folks from child life (where the kids get to play doctor to teddy bears and dolls - so cute). What a big morning! It was such a nice break for me, even though I spent the morning sitting in the room waiting for the doctors who never came. I was so frustrated that morning, so it was a really good thing Becca had a much more cheerful friend to play with. They played so hard, in fact, that this is what Becca looked like by the end of her lunch (and beginning of her naptime!):

Make photo slide shows at www.OneTrueMedia.com

Thanks again, Melissa! You are awesome!

Gimme Some Sugar!

We've had some complications. Not major, but as yet unexplained.

Last night, as I was putting Becca to bed (and while the nurse was flushing her IV's, etc.), she starting making weird hiccuping noises and breathing funny. Then she went limp and was unresponsive for about 5 minutes. Once she began responding, she kept breathing and acting funny for another 5-10 minutes. In the middle of the "episode," which was either a fainting spell or a seizure (and the doctors have been tending to use the word "seizure"), the charge nurse thought to take her blood sugar, and it was 40, which is pretty darn low. (60-120 is considered normal.) Not like lethal low or anything, but low. Once she had recovered, it had bounced up a bit to 44. The doctors (finally - they got there probably 20 minutes after the whole thing was over because of pager issues) ordered a bolus of sugar water (my kind of medicine!), and an hour after that was given, her sugar was up to 119 or so. They also doubled the concentration of sugar in her IV fluids for the duration of her time on them.

She was fine the rest of the night, but then this afternoon, when John noticed we had some extra blood from a draw the nurse was doing for endocrine tests, he suggested we use it to test her levels again, even though she wasn't showing symptoms, and they were back down to 50. Smart daddy. Repeat the bolus of sugar water, test again, fine.

The obvious reason for the blood sugar issues is that she hasn't had anything to eat since 7:00 on Wednesday night. However, the IV fluids they were giving her should have been enough to keep her levels healthy - even more so after they had bumped her up to the D-10 fluids (double sugar). There's definitely some kind of endocrine issue going on.

Our thought is that it's the return of an issue she's had in the past. Up until a few months ago, the doctors suspected that Becca had an adrenal insufficiency (which would not be surprising, given her septo-optic dysplasia, which can manifest in endocrine issues). hey thought that her body didn't produce enough cortisol. Any time she was experiencing "bodily stress," like when she was sick or having surgery, we treated her with "stress doses" of hydrocortisone. In her most recent tests, though, she wasn't showing signs of the insufficiency, so we discontinued the prescription (which we only used a couple of times, but definitely around her last surgery). Perhaps, though, this surgery was enough to bump her little system into disarray, which could make her blood sugar wonky.

That's the leading theory at the moment. They repeated the same cortisol stress test today that they have used all along to consider the insufficiency. We haven't heard results yet, but that would be the easiest explanation; we'd just have to go back to keeping the hydrocortisone pills on hand. But who knows - it could be something completely different. We're not comfortable going home until we know what the issue is, so hopefully the endocrinologists will have some answers for us tomorrow, so we can get the heck out of this place.

And that is the plan - for us to go home tomorrow. Becca's been getting Pedialyte through her tube since this afternoon, and in 45 minutes, they are actually going to start giving her some formula. Wohoo! If she tolerates that well, she can start eating regular food tomorrow morning. For a kid who doesn't like to eat, she sure has missed food these past couple of days! If we leave the cabinet with the fridge open (yes, the mini fridge in is a cabinet here, like some swank hotel mini bar), she makes a beeline for it. I think she's after the Kool Aid inside it. (I think we have a new favorite summer drink!) My guess is that once she is back real food, her sugars will level out, but we still need to know what happened so that we can prevent it from happening again. In the meantime, they are keeping her little feet bleeding with all the toe and heel pricks for the glucose meter! She's also had bad luck with her IV's the past couple of days, so she's been poked an awful lot - 3 new IV's in the past 48 hours, plus a few more earlier in the week. :( Nana Dana invested well in the box of Elmo band-aids she bought her for her birthday!

I also made my way down to Patient Affairs this afternoon. I spent about an hour talking with a patient advocate, and I feel confident that my suggestions regarding communication with be passed on to the team. I'll spare you any more gory details, but we had a few more issues today and yesterday, one of which made me really quite mad. I know everyone is new, but they really have some lessons to learn about communicating with parents, with each other, and among the various teams (GI, surgery, etc) taking care of my girl. The patient advocate was really helpful and I really think she will help them understand the issues within a framework of constructive criticism. Yeah, I am still kind of mad at some members of the team, but, really, my motivation behind talking to Patient Affairs was to help them learn -- that is what they are here for, after all -- and to spare other families some of the unnecessary stress we've experienced these past two weeks. And it didn't hurt that they had Becca's magazine sitting out in their office. They are kind of big fans. ;)

Post-Op!

About 30 minutes after I went back to bed, John called and said that they moved the surgery back up. I scurried to the hospital just in time to wait another hour. Ah, hospitals and choir tours: hurry up and wait. But it wasn't unpleasant AND and GI attending and fellow came by. Squeaky wheel and all, I guess. We also talked to all the relevant docs, nurses, etc. I kissed her intact belly one last time, and we watched as the took her back around 10:00.

In the waiting area, we found a couple from the new church (the minister of discipleship or something or other related to education and his wife), and we had a nice conversation with them...and it turns out that, as Baptists (now Methodists) in Winston-Salem, they knew my Granddaddy Ludlum and Grandma Charlotte really well. How cool is that?! They have promised to tell us some stories about them, especially my granddad since he died when I was 8. Very exciting! AND they have promised to bring us Moravian Sugar Cake when they visit family. Oh my my my. If I didn't like them already, that would have sealed the deal.

After they left, we got back to the business of waiting, and after about an hour (total), we were called to a consult room to talk to the surgeon, Dr. Chung. He said that everything went well, and he was able to go straight to the Mic-Key button, which keeps us from having to deal with a more cumbersome tube in the initial period and having to come back in a few weeks to have the button put in. We were really happy about that.

After waiting a bit more, they called us back to see her, and she wasn't screaming bloody murder like she normally does post-anesthesia. Apparently she was beginning to before we got back there, so they gave her some more pain meds to put her back to sleep. Ah, Becca. She was snuggly and groggy and didn't like to be moved. In addition to the IV the put in her arm last night, they had given her an IV in her leg (so she won't be able to walk until that is out), and she's got a tube attached to her button that is draining into a little cup, which is disgusting...blood and gastric juices...yum. But that's just on for about a day. The button is actually stitched to her tummy for now. She can't eat or drink anything (through the tube or orally) for 24 hours, and then they will start feeds through the tube very slowly to make sure nothing's leaking or causing her pain. After 48 hours, they'll take out the sutures, and, if the feeds are going well, we'll be free to go home. That puts us here until at least Saturday.

Once we got back up our room, she and I settled into my bed to snuggle and take a gooood nap. It was lovely. Now that we are awake, she's much more herself. She's not down and crawling around or anything, but she's cuddling with Daddy on the bed and waving and talking a little bit. I knew she was coming out of it when she waved hello to her favorite bear. So social.

Since we are going to be here longer than expected, John has decided NOT to go to MAP tomorrow. That's sad. We love MAP (it's the mission project at our church in Atlanta that John helped to run for several years), and I was sad that Becca and I were going to miss it, but since John was to be in charge of a worksite (master roofer that he is), he was going to go on...but this afternoon, he decided that he couldn't leave his little girl right after surgery. (He was supposed to leave tomorrow morning.) So, sorry Northside folks, you're down one leader...but Becca will sure be glad to have her "Dada" around this week (and so will I!). It sounded like they will be okay, though. John's also scheduled to lead a week at Aldersgate Camp at the end of the month, so staying home this week will also give him a chance to get settled in at work. I'm hoping that Becca will be recovered enough for us to go to camp with him. Being a pastor may not come with fancy trips to tropical resorts (except when your friends get married in incredible places - thanks, Lauren! :) ), but darn if a week at camp isn't nearly as much fun! (Okay, it's a completely different kind of fun...and I bet it will only get more and more fun as Becca gets older!)

That's all I've got, other than some cute pictures of Becca and John, which I'll try to add in a little bit after I empty the camera. Looks like she's going to be just fine!

And here's a picture! You can see the IV in her arm and the one in her leg, her blood pressure cuff, and the dressing she's got around her middle, which is to keep her from playing with the button, not because she is oozing that much or anything. Oh, and you can see the gross drain - the connection is wrapped in a diaper to prevent spillage.

Waiting

I was walking out the door when I got a text from John saying that surgery has been rescheduled for 12:30. Poor John will get to hang out with an NPO ("nothing by mouth") Becca for the morning...but I'm eating breakfast and going back to bed. It's his turn. :)