Hearing Aids!

We've got them!  We picked them up and learned all about them on Thursday.  Becca was super excited about them.  They are pink behind the ear with translucent pink earmolds with sparkles.  Very pretty.  We are getting the hang of getting them in so they will stay.  She's done pretty well adjusting to all the noise in the world.  On our way from the office to the car, she said, "Mommy, why is da elwabator [elevator] making noise?"  Because they always have, baby.  Welcome to the world.

There have been a few times that she has been overwhelmed.  At a birthday party on Saturday, she pulled me out of the den and said, "Mommy, I just want to sit wif you in da different room all by ourselves."  So we did for a few minutes, then went back to the action.  No biggie.  The volume adjustment and on/off switches have been deactivated so that she doesn't play with them.  When she gets older, she will have access to them to adjust as needed.

John and I are thrilled not to have to yell and repeat ourselves allthetime.  So much less stressful.  There's something about an uncooperative 4-year-old being much more bearable when you don't have to start out yelling.  This doesn't mean, of course, that she listens all the time.  Several times we've caught her in the regular, "What did you say?" loop - she asks, we repeat; she asks, we repeat; she asks, we repeat.  Finally I say to her, "Becca, I think you can hear me now.  Are you listening?"  With the obnoxious honesty of a 4-year-old, she'll say, "No, I'm not wistening."  So now we have a new rule: no asking questions unless you are going to listen to the answer.

John filmed her reaction the first time they put the hearing aids on and turned them on.  The audiologist put them both in her ears before turning them on.  Once they are turned on, it takes about a minute for them to be ready to go - they make a little chime sound (the pixie dust sound, I'm told ;) ) and then go live.  I think you'll be able to tell in the video when they start working for her.  We are so lucky to have the technology and access to care to help her hear!  Enjoy the video.  Life is good.

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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.  :)

Update - in John's Words

It's actually still me typing, but John sent such a lovely and concise update to the church staff after our appointment yesterday that I thought I'd let him do the talking for once.  Here's what he said:

Hi everyone,

Just wanted to give you a quick update on Nancy. Her blood pressure is elevated (150s/80s), but her labs came back normal and there is no protein in her urine (sorry for the detail). This means that, as of now, she does NOT have pre-eclampsia (yay!), but the elevated blood pressure is still worrisome. It could be the result of the steroids she is taking for her lungs, it could be a pre-cursor to pre-eclampsia, or it could be that she will just have elevated blood pressure near the end of her pregnancy.

 

The doctor has placed her on modified bed rest (shouldn’t work or do anything strenuous, but doesn’t actually have to stay in bed all day) at least until her pressure comes down. We will continue to monitor it closely at home and go to the doctor twice a week now for testing. If she develops pre-eclampsia or her blood pressure gets higher (into the danger zone of 160s/100s), then she’ll be admitted to the hospital and likely have a c-section soon thereafter.

 

So, right now, we are more or less in a holding pattern to watch and make sure she doesn’t get any worse (and hopefully even gets better!).

 

Thanks for all the prayers and support!

36 Weeks + A Little Excitement

As of yesterday, I am 36 weeks pregnant!  We haven't measured him lately, but Baby James should be about 6 pounds now.  Becca was around 6 pounds at her first Christmas, at 6 months old.  You could say he's got a head start on his big sister.  I'm not going to know what to do with this giant kid.  Bizarre. 

I am feeling appropriately uncomfortable and perfectly happy to be sore, tired, worn out and achey.  James has dropped, so he's in position, head-down, to make an arrival in the next few weeks.  I'm dilated a centimeter, which apparently means nothing, but hey, at least something is happening.  One more week, and we're full-term!  Even at this point, though, we are likely to avoid the NICU.  Woohoo!

But this week is not without a little bit of excitement.  Last week, Becca passed her cough on to me, dear child, and with my asthmatic lungs and pregnant immune system, it has hit me harder than it did her.  By Friday, I was ready for a trip to the pulmonologist, and picked up a round of antibiotics and steroids (prednisone) on the way home.  By Saturday night, my blood pressure, which has been really good lately, had bumped up to the "you're not going to die but you should call the doctor" range.  I gave it until Sunday morning, and called the doc during Sunday school.  He said to keep taking it and let him know if it went up further.  He thought the steroids *might* be to blame but didn't want to initially blow it off. 

Sunday afternoon, I rested, took it again, numbers were about the same.  I probably should have called the doctor then, but that night we were going out for our anniversary, and Super Dad had a Super Date planned for us, complete with a night at the Union Station hotel, where we spent our wedding night.  Knowing that my numbers weren't dangerously high, just possibly heading that way, we went on our date and had a great time.  By Monday morning, after a night off from work and parenting, they were down again.

Monday afternoon, at work, they bounced back up, so I went in to have the nurse run them.  Now they were up to 151/82 - highest I've seen since my pregnancy with Becca.  They considered keeping me overnight in L&D, but I convinced them to let me go home and rest.  They ran some lab work (which came back okay, thank goodness) and set me up for the super-fun 24-hour urine collection.  I'm nearly done with that now, and have spent the day at home on my butt (mostly).  Blood pressure has come back down to the 130's (sometimes upper) over 80's (sometimes upper), so we are still watching it.  I'll turn in my pee jug tomorrow morning, keep checking numbers and sit on my butt until I see the doctor tomorrow afternoon, when they will have results from the 24-hour collection.  (They are looking to see if my kidneys are spilling protein in my urine - the other classic indicator of pre-eclampsia.) 

If they don't like the results from that, or if my blood pressure bumps up too high again, I'm guessing they will put me on bedrest for the duration of the pregnancy.  I don't know how long that will be - I'm guessing they would wait until at least 37 weeks (next Monday) to take him (unless I get really sick, of course), so that he would be full-term, but I don't know if they will want to give him until 38 or 39 weeks or what.  At any rate, none of those weeks is very far away, thank goodness!

There's still a good chance that the urine test will come back negative and the blood pressure will normalize as I finish my run of steroids.  (It's a 9 day run - 3 days on 60 mg, 3 days on 40 mg, 3 days on 20 mg - and I'm on day 2 of the 40 mg.)  In that case, I'm back to the plan I outlined in my last post (I think). 

So, like I said, a little excitement, but we are so so so so so so so so happy to be looking at these issues at 36 weeks and not 26!  Such a world of difference! 

Stuff and Things and Nancy Rambles

I'm officially more pregnant than ever!  On Monday, for the first time ever, I got to say that I was/am 29 weeks pregnant!  Wohoo!  So that's awesome.  But the blood pressure is still bouncing around, so I'm trying to take it easy, etc.  But it's a total mind warp.  Take today, for example.

I got up and immediately feel gross.  Nausea is back, generally felt icky.  I take my blood pressure, and the systolic (top number - at least I think that's the systolic) was 138.  (Remember, 140 on the top or 90 on the bottom sustained warrants a call to the doc, a visit for monitoring and possible admission/bed rest.)  I lie back down for a while, take it again, and it's 142.  So I call John and tell him that I'm taking a sick day rather than wrangle our precious and oh-so-cooperative nearly 4-year-old into clothes, into the car, into the office to work alongside me (as our super babysitter is out of town this week).  Becca and I spend the day playing some and watching a lot of movies.  Sorry for rotting her brain today.  My pressure comes down below 140 (hence no call to the doctor, whom we are seeing tomorrow anyway), but hangs out in the high 130's.  At last check, it was down all the way to 131/81 - much better apparently, though really not all that different...but I guess 9 points below the magic number is better than 2 points above.  And Becca's taking a nap at this point, so that probably helps.

So then my mind starts going...if you haven't already picked up on it, I've got issues with being "enough" - good enough, a hard enough worker, etc., so I tend to carry lots of guilt around because apparently being "enough" is the same as being "perfect" - which I'm obviously not.  So I start thinking, "Maybe I shouldn't have taken the day off.  Maybe I'm just being lazy.  I keep wanting the doctor to tell me to take it easy...maybe that's because I'm so slothful I just want to lie in bed and watch t.v. all day long.  Maybe this is all in my head.  See, my blood pressure is better.  So I should have gone to work, right?"

I wear myself out taking it easy.  I mean, first off, my logic is flawed.  You can't use the afternoon's good reading to say that I should have gone to work.  Sure, I might have just been running high because I wasn't feeling good (Zofran helped that), but what if - this is crazy! - taking it easy today actually did what we intended for it to do and helped lower my stress and blood pressure?  Perhaps I made the right choice and was seeing the positive consequences from it.  But, no, I must have made a mistake and everyone at work thinks I'm a slacker.  (The last bit of which, I can tell you when I'm in my right mind, is not the case.  They like this kid, too and want him to stay put.)

But I do want the doctor to keep telling me to take it easy.  Is that because I'm lazy?  Is it because of residual issues from my first pregnancy, when NOBODY told me that I should stop working my crazy, stressful and physically demanding schedule (which, we all now agree, I should have, hindsight being what it is and all)?  Is it because I want to check out of all responsibilities?  Well, probably a little bit of yes to all of that and definitely some yes to the second reason.  Yes, because of the guilt I carry about (unknowingly) screwing up Becca's pregnancy (or at least not doing all I could have to unscrew it up), I want to make sure I am doing EVERYTHING possible this time to keep the kiddo cooking.  So maybe I am overreacting, at least some.  But maybe I'm okay with that.  Whatever happens, I don't want to look back and regret anything.

And that's probably why I keep wanting the reassurance from the doctor that I *should* be taking it easy...because I don't want the choices we make in this pregnancy to come from a place of (somewhat false) guilt surrounding Becca's pregnancy.  Now, Dr. Sizemore seems to be happy to provide that reassurance - he agrees that taking it easy does seem to be helping, and there's certainly evidence that it can help...but I guess I still worry about whether I'm being selfish because we can't *prove* that I need to do it.  I mean, there's no control group on me.  We're seeing what happens when I do take it easy, but we can't see what would happen if I kept running at full tilt...'cause I'm not.  Know what I mean?  But I feel like our families and friends and the world is judging me for being lazy...as if the world doesn't have other things to worry about.

I think where all this emotional neediness comes from is a need to justify inaction or inactivity in our society.  I mean, in my circles, it's easy to justify some amount of "self-care," downtime, contemplation, etc...but not a command or an inclination or a neurotic hunch to really, do less.  I guess in particular because when I do less, other people have to do more.  Super Dad has been (predictably) awesome (though sometimes I think he thinks I'm crazy), we've got someone coming tomorrow to clean the house, I've got an awesome assistant at work, and my biggest work task at the moment is being handled by some stellar Vacation Bible School chairwomen.  Some of what I'm *not* doing didn't really need to be mine to do, anyway.

For example, the weekend that my doctor first told me to "take it easy and only do what you have to do at work," I was scheduled to attend the church softball games on Friday night (as a function of my being married to one of the players and enjoying such activities, not as part of my job description or anything), participate in CPR and First Aid training all day Saturday (a good thing for a children's minister to have but not ESSENTIAL to my function at work), go to a Sounds game (Nashville's minor league baseball team) with a group from church that night, and participate in/lead all my normal Sunday morning activities.  In talking to my doctor, I realized that all I really *needed* to do for work was my Sunday morning stuff.  Sure, I was *expected* at the other bits, but they could proceed just fine without me.  (And to that point, if I needed to *not* be at church Sunday morning, folks would have stepped in and made do just fine without me.)  So all I did was my Sunday morning routine.  Oh, and I attended the softball games after making sure some other (very special) spectators were willing to chase the #1 Cheerleader around while I sat.  

Anyhow, I don't know where I'm going with all of this.  I guess I'm just trying to process.  Out loud.  Get surprised.  So I guess I'll just leave it there.  That's the update.  Baby boy (who I think has a name!) is doing well, still, growing and moving and all.  I'm doing okay-ish, growing and trying not to move more than necessary for day to day functioning.  We go back to the doctor tomorrow and will do bloodwork again.  Hopefully we won't be back in the business of collecting 24 hours of pee.  Ew.

Pretty Boy!

Guess who is already THREE TIMES HIS BIG SISTER'S BIRTHWEIGHT?  This sweet boy:

(Okay, yes I know he is sideways, but I have to go to a church event now; I'll try to rotate him later.)

Appointment today was great.  Blood pressure was down; I've been instructed to keep doing what I'm doing.  Wohoo!

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. 

Bits and Pieces

I feel like there is a lot to update you on, but my mind is not at all organized at the moment...so you'll get bits and pieces.

First off, I am now 17 weeks and 4 days.  17 was a bad, bad week for us in Becca's pregnancy.   In fact, it's the week that they told us she was going to die.  So even though we weren't scheduled for a visit this week, I called the doctor to see if we could come in and get a glimpse to make sure everything looks good.  Fabulous doctor that he is, he worked me in, and we saw him on Wednesday. 

I am beyond thrilled to say that this week 17 is going much, much better than our last one.  The baby is measuring right on target, though the head is a little bigger than the legs (which just makes the baby a Hill - have you met my short genius of a husband?).  At this point, Becca was already 2 and a 1/2 weeks behind.  There was a 4 cm fluid pocket already; when we went for our amnio with Becca in week 18, they couldn't even find a 1 cm pocket and almost weren't able to do the amnio.  Dr. Sizemore said that they could amnio this fluid all day long; I told him that I'd prefer that he not.  The baby was moving - dancing, really, which was adorable.  And we think we saw some bits and pieces...

...as in, little boy bits and pieces!  It's still pretty difficult to tell on the office's super basic ultrasound machine, but we're pretty sure we saw his little penis, and when he started grabbing at it, we decided it was definitely acting male...already sticking his hand down his figurative pants.  But - we're not painting the nursery blue yet or anything (actually, we're not painting the nursery at all because when we moved in and painted we went with a gender-neutral green, smart kids that we are), but the doc is 85% sure it's a boy.  We ought to know for sure at our full anatomy scan (at the high risk doc with the better machine) the Tuesday after Easter. 

So that's that.  I feel so so so much better after this appointment.  Oddly, it's nice to be where things started to go wrong.  I had thought that my anxiety would only increase as we got further along, and I'm sure it will some, but it feels great to be at this point and be reassured that what happened last time is not happening this time.  I'm still at high-risk for complications, and there is still a very good chance that I will develop pre-eclampsia, but whatever happens now, I know we're not experiencing a total repeat of last time with the double whammy of super-severe IUGR AND severe, early-onset pre-eclampsia.  Again, the kiddo could stop growing at any time, and my blood pressure could shoot up, particularly as pre-e is an unpredictable disease, but we are ahead of where we were last time.  Phew.  In CPE terms, I think it's helping me differentiate this pregnancy from my first one.  I really am starting to believe that things might be different this time.  Like I said, it feels good. 

[Sidenote: as I talk about my first pregnancy, I want to be clear that I don't regret a minute of it.  Of course I would have chosen for it to go differently, but in the end, we got the best kid in the world, and I love her just the way she is.  I would do it all over again in a second to have her.  Or to have this itty bitty boy.  But we're open to an easier ride for everyone this time.]

Okay, I got so busy writing about the little boy booger that I forget what the other updates need to be...so...um...don't forget to donate to our March for Babies team and/or order your t-shirts (I'm sending in our order on Monday!)...and if you want to buy some Usborne books AND save some babies at the same time, shop at www.myubam.com/HOS216155.  I'm giving my entire commission on purchases made through this link to our March for Babies team.  And I haven't forgotten about the second Disney post.  It will come.  Eventually.  :)

Oh, and some adorable Becca sayings as of late:

• I'm da wine weader!  (while running to get in front of everybody)
• Her name for the baby: Kolkai Booger
• I'm Madewine!  I'm Madewine!  I'm tall!
• Actuawawy... (translation: actually)
• I want to go on adbentures!  Yet's go on [pauses while she counts her fingers and raises them] five adbentures!  (Adventures = errands or anything else we can come up with to do away from home or church)
• Awl da something or other (As in, who was your favorite character at Disney?  "Awl da charawcters!"  Who do you want to invite to your birthday party?  "Awl my fwiends!"
• I will give you a kiss to feel you better, Mommy.  (and)  I'm sorry you're sick, Mommy.  (and) I'm gwad you're better, Mommy. 

Okay, that's all the randomness I can reign in at the moment.

It's a...

Girl
Boy
Girl
Boy
Girl
boy????


If I could make that font even smaller, I would.  Here's how the gender search went:
Dr. S.: Look at that!  See those lines?  That looks like girl to me!
N and J: giggle giggle giggle
Dr. S.:  Let's look around...placenta looks great...size looks great...very active, good movem-
[PAUSE]
N: Yes?
Dr. S.:  I think I saw a penis.  Let me look again.

He looks again and again and again - we seriously spent 10 minutes just looking for fetal genitalia, and we have decided that the baby is one of two things:
1.  A boy
2.  A girl with a strategically placed umbilical cord

We really don't know.  (Thanks to you 3 people who said we wouldn't find out; you cursed us!)  Dr. Sizemore is putting it at a 60% chance that it's a boy.  Given that it started with a 50% chance, we haven't clarified much.  I threatened to come up with some problem that would send us to the specialist upstairs (with the high-powered ultrasound machine), but figured I'd end up with enough time with specialists as it is.

So there you go.  The Booger is a beautifully-developing, perfectly healthy little...booger.

MFM Appointment

Yo.  It's Sunday night, which means that this children's minister is super duper tired (and in the habit of saying things like "super duper"), so I'm gonna be brief.  At least for me. 

We saw the MFM doc for the first time last Monday.  Well, the first time for THIS pregnancy, of course.  We were able to get in to see Dr. Carpenter, who is one of our favorites in the Vandy MFM group.  She's oddly hilarious in the way she throws around technical jargon but super friendly, and once again, we decided that we are very, very lucky to be fairly bright people, given the amount of medical information we have learned to digest over the past four years.  (Seriously, I don't know how anyone without an above-average-ish IQ can keep up with these doctors, let alone wade through the massive amount of paperwork dealing with insurance, SSI, special ed., etc.)  So we learned some new technical things, but the gist of it is that she really likes Dr. Sizemore (my regular OB, whom she helped train), agrees with everything he is doing, trusts him to monitor me closely, and doesn't need to see me back until/unless there is a problem.  Fabulous!  We like doctors and all, but we see plenty of them, really. 

We did get some pretty shots of the gummy bear on their fancy schmancy ultrasound machine...that I apparently cannot scan on our fancy schmancy printer.  I'll send SuperDad in here to see if he can do it.  There's a really cute one wherein the little Booger is waving at all the Itty Bitty Hill readers!

Yeah, Yeah...

...I know I have been slacking on my blog, even with my promises to my mother, but I can't bring myself to feel bad about it.  Because I'm already feeling quite bad on my own.  Of course, feeling bad in this case is a good thing, but, wow, I've been feeling b.a.d.  Apart from not feeling like sitting in front of the computer and typing, I haven't posted because I don't want to whine (too much), and, well, that's about all I have to say.  I feel like shit most of the time, death occasionally and okay every once in a while.  Yesterday was horrible - couldn't keep anything down and finally christened the toilets at church with a little (or a lot) of baby-induced vomit - but today has been an okay day.  Not good, but okay. 

I feel guilty that I'm allowing my physical dis-ease to color my life so much; I mean I'm supposed to be overwhelmingly joyful.  I'm finally pregnant, after all!  Wohoo!  That's awesome! And great!  And wonderful!  But it's hard to think about all that when you're working really, really hard to figure out a way to get out of bed without losing the midnight snack you had to eat in order to choke down your nine pills.  I know that I am excited and grateful; I just don't feel excited and grateful.  I'm trying to get over the guilt associated with that lack of enthusiasm, but, darn, feeling physically bad makes everything seem worse.  There have been several days in the past few weeks that I've either had to stay home from work (and in bed), cancel plans and/or *gasp!* cancel Becca's therapy appointment because I couldn't handle leaving the house.  It's been pretty bad.

And it hasn't exactly helped my anxiety, as the feeling I most associate with Becca's pregnancy is nausea (and lots of vomiting - remember, I was puking for the entire 7 months).  So that has flashed me back into a discouraging place at times.  And then the anxiety doesn't exactly help the nausea, either.  And so it goes. 

But the good news is that the nausea is a little different than in Becca's pregnancy (more overwhelming and incapacitating disgustingness and less vomiting than with Becca), so the good Dr. Sizemore's theory is that we're experiencing normal "placentation" (that would be the formation of the placenta, which controls the hormones that affect the nausea and was "total crap" in Becca's pregnancy, causing her to be Itty Bitty), so maybe everything's going to be normal-ish this time and maybe, possibly, I'll have a more traditional course of morning sickness that ends as we enter the second trimester.  Who knows.  I know plenty of people with functioning placentas who are sick the entire pregnancy, but maybe at least it'll lighten up.  I noticed today that I can get an extraordinary amount of work done on days that I feel halfway human now, which is great, because I got next to nothing done yesterday. 

So that's the answer to the, "How are you feeling?" question, which, frankly, I'm sick of answering because then if I happened to possibly be thinking about something other than the fact that I feel like crappola (as my dear dad would say), I am reminded of it and have to explain myself (to varying degrees, depending on who is doing the asking).  But then again, I do love a good pity party every now and then, so sometimes I like the chance to whine. 

Okay, end of sob story.  Which is actually a happy story.  But you know what I mean.  (If you don't reread the above paragraphs until you get it.  If you don't get, shove off.  I'm hormonal.)

On to the technical stuff - the official due date is set for September 3, 2012.  I'll be thrilled if we make it until August.  I'll be super thrilled if we make it until August without having to go on bedrest, especially because 3 of my oldest friends in the world are getting married (not to each other) in June and July, and I really, really want to be there.  And Becca's first ballet recital is June 23, and I've gotta be there, right?  So, yeah, pre-eclampsia, back off.  I've got a fun summer planned.  And you're not invited. 

Anyway, that makes me 10 weeks pregnant tomorrow (which, incidentally, is when the pregnancy hormone levels peak, so theoretically if I AM having a typical course of morning sickness (which we know is all day sickness), it should start to abate in the coming days and weeks).  The babe is somewhere between the size of a kidney bean and...small plum, according to my pregnancy book.  I don't think I've ever seen a plum that is anywhere close to the size of a kidney bean, but whatever.  Maybe it's a teeny, shiveled organic plum that cost 3 times as much as the genetically-engineered stock I would buy if I ever bought plums.  I think the "official" length as of tomorrow is just over an inch.  What the hell kind of plum would that be?  Save your money and get a decent-sized plum in a few weeks. 

We have our first appointment with the maternal-fetal specialists on Monday.  We've going with the Vandy MFM (maternal-fetal medicine - learn the acronymn now because I'm about to be too lazy to type it out) because, even though there are other doctors that are closer and much easier to deal with, logistics-wise, if this baby is born early, we want him/her to be born at Vanderbilt, whose NICU is ranked in or near the top ten in the country (depending on the year).  There are other Level III NICU's in town, and we have friend who have had positive experiences at each of them, but the sickest kids always get transferred to Vandy anyway, so why not start there?  Besides, we still have some of "our people" there.  I want to be among my people.  So we'll deal with their obnoxious schedules and long waits.  On Monday, we'll have another ultrasound and see Dr. Carpenter, who is one of our favorites in the group.  Way back when I started trying to get pregnant, she was enrolling patients in a pre-e study.  I'm guessing the study might have already been concluded, but still, it's nice to know she really is on the cutting edge of research in the area.  I feel good about seeing her. 

We go back to Dr. Sizemore on Wednesday for another ultrasound and brief appointment.  All my labs have come back normal, including the protein levels from the oh-so-fun 24-hour urine collection.  Delish.  So we've got normal baselines for everything.  Even my blood pressure is behaving; at the pulmonologist today (routine appointment; all is well), it was something crazy-normal like 116/72.  Suh-weet! 

I think that's all I've got on the baby front.  I'm going to try to continue to stare at the screen and pound out a few Becca posts so that you know she is still alive and well and as sassified as ever.  No promises, though.  But it helps that the office is right across from the bathroom. 

And I'll leave you with that image. 

Community Helpers

Becca's class has been doing a unit on community helpers, learning about public servants like firefighters, police officers, teachers, construction workers, mail carriers, nurses, and doctors.  At the end of the unit, they had "Dress Like a Community Helper" day.  Not surprisingly, Becca chose to dress like one of the helpers she is way too familiar with - a doctor.  Apparently, the day before, when they talked about doctors, Becca told the class everything a doctor does at an appointment.  It seems she's been through a few of those.  :)  Here's our Dr. Becca!

On Therapy

One of Becca's old therapists is giving a lecture on working with pediatric patients and their families, and she asked me if there was anything I'd like to pass on to a group of aspiring therapists.  Apparently, I had a lot to say, so I thought I'd share it with you.  Preemie/special needs parents, what else do you have to add?

So here's my advice to therapists, which is also fairly applicable to nurses, now that I think about it.

Balance the professional and the personal.  We've had some sessions in which I've felt like the therapist and I interacted more than Becca and the therapist.  But worse was the therapist we had that was SO "professional" that it was completely isolating.  I didn't feel like I was involved in her therapy at all.  I sometimes wondered if I should just wait in the lobby - Lord knows I could have used some downtime for myself and a book!  I know absolutely nothing personal about that therapist to this day.  (And if I'm completely honest, I'll admit that I'm petty enough that it at times affected my implementation of our home therapy program.)  Being the parent of a preemie is SO SO SO isolating.  Remember from September through March (or whatever RSV season is in your area), family, doctors, nurses and therapists -- and maybe a few close friends -- are essentially the only people we see and interact with on a regular basis. Seriously.  So be friendly with us, even if you can't/don't want to really be friends with us. You are our support system.  I mean, I don't need to know about the fight you had with your boyfriend last night, but I love knowing that you've got, say, a daughter the same age as Becca or a kid in college or a pair of pugs that are the light of your life.  Give me something to humanize you and make me feel like we are partners in our efforts.  (Note: if you do have a child about my child's age, DO NOT compare their abilities.  We do that enough already and don't need your help in that area.)

Know that therapy fatigue is real.  Most of these kids will be in multiple therapies each week, each with a home therapy program, likely alongside lots of medical needs.  Let us know what we need to be doing, but prioritize.  We can probably only manage about 2 assignments a weeks.  If it's appropriate, give us permission to sit in the lobby occasionally.  Most likely we'll want to be in the sessions, but every now and then a break is an amazing treat.

Work together with us on goals.  Don't just make them up on your own.  At least run them by us and see what our priorities are.  With all due respect, I know you are a professional, but in the grand scheme of things, what matters are MY goals for my child (and if they are old enough, their own goals), not your goals.  Therapists come and go, often frequently, but we're the ones raising this child.  Provide a written copy of the goals (whether it's hard copy or e-mail) so that we can remind ourselves of them and share them with other parents, caregivers, etc.  

Help us work with the doctors.  Sometimes you are able to get access to them that we are not able to get on our own.  Sometimes you can express our concerns to them and they will be received differently (and taken more seriously) if they come from you.  However, remember that we are the experts on our children, not the doctors. 

I can't believe I have to mention this, but it has happened on more than one occasion: if my child makes some kind of artwork/picture/design/anything on paper during the session, DO NOT THROW IT AWAY IN FRONT OF HER.  Even if it's a mess of shaving cream on construction paper to you, to them it's a work of art that they are proud of.  Set it aside, and when I don't take it with me, toss it - but not in front of the kiddo.  They notice these things, even at age 2.  Becca even requests that her pictures goes on the wall (we have a special frame) or on the fridge.  Sometimes she puts them up herself.  She knows that what you do with a picture is a commentary on it.  So respect her efforts and her feelings, please.

And in general, if we are a little high maintenance, a little (or a lot) scattered, not always punctual, and/or just generally nutso, give us some grace.  Unless you have been in our shoes, you can't understand the scars that our journey has left and the stress that we continue to be under. We have spent too much time fighting for our children's lives for us to be normal, and with therapy, we're still fighting for our children's quality of life, even if they aren't in physical danger anymore.  A pattern of missed sessions and non-compliance is one thing, but otherwise, a little kindness and understanding can go a long way with us. And we will love you forever for it.

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?!

"Wednesday" Weigh-In

Wednesday, Saturday, what's the difference?  :) 

Last week: 10.00 kg (22 pounds, 1 ounce), 32 inches
This week: 10.05 kg (22 pounds, 3 ounces), 32.75 inches
Week's change: +50 grams (2 ounces), + 0.75 inches
Net change: +2350 grams (74 ounces = 4 pounds, 12 ounces), +3.75 inches

These measurments were taken at the endocrinologist's office, so we may seem some fluctuation on the weight next week as we move back to our regular scale.  And I'm quite sure that we'll see some fluctuation in the height, too, because that's how we roll, apparently.  I do think that this is probably the most accurate height measurement we've had in a while.  Since endocrinology follows many kids specifically for growth concerns, the nurses in that office are very well trained in taking height measurements.  They've also got slightly different equipment that I think is more accurate.  So, all of that is to say that Becca is indeed NOT on the growth charts yet, but she's making some great progress. 

When we started growth hormone shots last summer, Becca was 3.79 standard deviations below average (a.k.a. the 50th percentile line).  (If you don't know what standard deviations are, sorry, but I don't really know how to explain them.  Just look at the numbers and be impressed.)  After nearly 9 months of therapy, she has bumped up to 2.45 standard deviations below average.  The 3rd (Or is it 5th?  Crap.  I think it's 3rd.) percentile line is 2.0 standard deviations below average.  So she's getting much, much closer!  Maybe in another few months, she'll actually be on there!  She is at least no longer falling off the bottom of the paper, so that's better. 

Becca is having a harder time with her daily shots, though.  As hard as it is to see her upset, this is probably a good sign, because it (probably) indicates that her sensory integration therapy (OT) is kicking in and she's feeling pain more.  Yes, that sounds crazy, but it's a good thing that she can sense pain.  After consulting with my friend Bekah, who is a preemie mama and a Child Life Specialist at Vandy, we've started giving Becca a Band-Aid after every shot.  The needle is so tiny that 90% of the time she doesn't need one, but she LOVES "bannai," so getting to pick which one she gets (right now it's Elmo or Pooh Bear) and getting to help put it on is a big deal.  It not only distracts her, but it also empowers her a little.  She doesn't have a choice in getting the shot, but she can choose her Band-Aid!

Wednesday Weigh-In & GI Update

Last week: 9.9 kg (21 pounds, 13 ounces), 33 inches

This week: 9.85 kg (21 pounds, 12 ounces), 34 inches

Week's change: -50 grams (1 ounce), + 1 inch

Net change:  +2150 grams (69 ounces = 4 pounds, 5 ounces), +5 inches

Becca was sick over the weekend with another NSVI, so the weight loss is not unexpected. (NSVI = a non-specific viral illness, which means that the docs don't know and don't need to know what it is because it's not very serious and they knowing would change the course of treatment.  We've had several of these this winter.  I think it's amusing that there's a technical name for it.)  She's still a little puny but doing fine and no longer contagious, just a little more, um, opinionated and tired than normal.  

The second half of last week and this this week have been a little crazy as I've had to work with several of Becca's care providers and suppliers in order to get things straight.  (Yes, Becca has suppliers.  And we had to switch some of them around due to insurance changes (not doctors, just her dealers).  It reminded me of why I'm not working full-time these days!  We also ended up in a feeding supplies crisis, as we still don't have the feeding bags that we needed on Monday, 'cause, hey, we don't REALLY need them every night, do we.  (We do.)  Super friend Mollie helped me out and saved us from having to wake up every couple of hours to bolus feed the tube-fed princess.  

We did finally connect with the GI folks.  I spoke with a nurse who was either consulting directly with Dr. Moulton or is at least smart enough to say that she was.  :)   After a good bit of trouble finding a pharmacy that would work with use (see above), we have now started Becca on the compounded generic formulation of Prilosec.  (Compounding just means that they take the solid medicine and make it into a liquid.  Only certain pharmacies do it and only certain compounding pharmacies file insurance claims for those meds and only certain methods of compounding are covered by TennCare.  These are things I learned this weekend.)  We were able to dissolve the Prevacid solutabs in water and give them to Becca because the little balls of medicine (like the ones that are in the adult capsules) are designed not to dissolve.  We couldn't crush it up and put it in applesauce or any other food that consistency because she doesn't eat those foods.  She has taken a few bites of applesauce in her life, so we did try that and she gagged on it and puked...which made for a negative association with applesauce in general.  Awesome.  Besides, the Prevacid didn't seem to be working anyway, since even when we could it get in her, she still usually threw up another time during the day.  The liquid Prilosec apparently tastes really gross (to Becca), so we shoot it directly into her button.  It's kind of a funny process - we measure her 5 ml's in a small syringe, squirt it into a big syringe, add an adapter that fits into her button (which the small one doesn't have), and squirt it in.  But hey, she's not gagging on it and throwing up!  Actually, she is still throwing up, but not from the medicine, and it's only been a couple of days on it.  I'll keep you posted!

Weigh In and GI Update

January 26: 9.6 kg (21 pounds, 2 ounces), 33 inches

February 16: 9.8 kg (21 pounds, 10 ounces), 33 inches

Three weeks' change: +200 grams (8 ounces), + 0 inches

Net change:  +2100 grams (67 ounces = 4 pounds, 3 ounces), +4 inches

So we're still moving along...a slower pace, but still gaining, which is better than we did last fall.  For the next couple of weeks, she will be likely to have gained about her coming home weight (from the NICU at 5 1/2 weeks past her due date) since we got the feeding tube in July.  I don't remember exactly how much she weighed when we brought her home, but it was somewhere around 4 1/2 pounds.  

Two weeks ago, we had an appointment with the GI doc.  I'm not sure if I mentioned it on here or not, but we changed her reflux med from Zantac to Prevacid about a month ago.  We didn't go to the doctor then; it was all done over the phone and Vandy's messaging system.  I spoke only to a nurse but ASSUMED that she was actually talking to the doctor, or at least that the doctor was at least aware enough of the situation since he was the one (again, I assumed) was writing the prescription.  

Silly me.  When he asked how everything was and I launched into how the new med wasn't really helping (b/c she was still vomiting), he stopped me as he looked back over her chart again...because he didn't even know that we had switched meds.  When I mentioned it, he thought our regular pediatrician had done it because HE DIDN'T WRITE THE PRESCRIPTION.  He had no idea that I had even had a minor battle with the nurses to get anything changed.  What.  The.  F.  Since then, I've pulled up the electronic copy of the prescription (via the aforementioned messaging system, which is really handy), and it was NOT written by a doctor. I can't tell if the prescriber was a nurse practitioner or a just another nurse b/c it's written in some secret code (something like "written by XXXX in accordance with policy #78431598713.1").  

Let me be clear.  I love nurses.  I love nurse practitioners.  I have nothing against them, and would have no problem seeing one myself (with the exception of OB care since I'm in the major leagues there).  I would be happy to send my sweet husband to an NP.  The NICU NP's saved Becca's life on a regular basis.  I'm a fan.

BUT - I'm going to go out on a limb here and say that if a child has specialists from NINE (9) different departments, maybe, just maybe, that patient needs to be treated by the full medical doctor who knows her and her history.  Call me crazy.  I'm quite sure whoever I was speaking with did not take the time to read Becca's entire medical history or her chart.  I know how long it takes STAR panel (the medical charting software they use) to load her chart because I often have to make awkward small talk with the providers while they wait.  So maybe, just maybe, when I send a message to the doctor about a significant part of my daughter's medical care and well-being, that doctor should at least lay eyes on the message, consult with the nurse, etc, even if he is too busy to actually take the time to call me himself (which, mind you, several of our doctors do).  But our doc did not even KNOW that we were having issues.  

You can guess how blunt I'm going to be in the message I'm sending them tonight.  "PLEASE MAKE SURE THAT DR. MOULTEN SEES THIS MESSAGES PERSONALLY AND RESPONDS TO ME DIRECTLY."  At least I'll say "please," right?

Wow, I'm more upset about this encounter than I had realized.  Thanks for you patience with my blog therapy.  :)

Still, even with the less-than-stellar communication and complete lack of teamwork, the medicine switch hasn't been a horrible thing.  But it's still not working.  This week, Becca has thrown up 4 times.  That's maybe an improvement, but it's still way too much.  Yes, she's still gaining weight, which is the first difficulty with the vomiting (the sheer loss of calories), but she is still vomiting a lot.  And I think it's starting to have a psychological effect on her.  I think I've told you that she makes Baby Rosie throw up occasionally, and the other day she told me that Elmo was crying because he was sad because he had thrown up, and then she had to carry him around and comfort him for several minutes or "he" would start crying again.  As if there is already enough going on in her life to give her an eating disorder.  That's just pitiful. 

So here's what we did: the nurse had started us on 7.5 mg of Prevacid twice a day, and Dr. Moulten upped it to 15 mg twice a day.  Prevacid is a stronger medicine than Zantac, and the doctor (unlike the nurse - I specifically asked her) was able to explain how it might actually help reduce the vomiting.  Zantac basically just reduces the pH in your stomach so you don't have as much acid floating around.  Prevacid (and Prilosec as well, I believe) actually shut off the acid-producing pump in your stomach by blocking the receptors that tell it when there is food in the stomach, starting it up.  It still produces some acid, but not nearly as much.  And less acid in the stomach makes for a healthier esophageal sphincter.  (That's the muscle band at the top of the stomach that opens and closes to let food in - and vomit out).  If the sphincter is inflamed (which Becca's is), it is looser, so it's easier for things to pop back up.  That's why she is way more likely to vomit when she gets choked up on something - once the reflex is triggered, there's really not much to stop the contents of her stomach from making their reappearance (much like my innards when I was pregnant).  I'm also guessing that the fact that she had a tube running through the sphincter and into her stomach for 18 weeks of her life, including 5 of them when she was a past-term infant, hasn't exactly helped to strengthen its muscles.  We don't actually see much textbook reflux (or at least we didn't in her tests), but when she gags (which happens frequently, given her sensory and feeding issues), you better get out of the way (unless you are SuperMom or SuperDad, who run TO the puke, which is what makes us Super).  

So - the Prevacid should help get the sphincter healthier and keep food down.  But like I said, she's still puking.  And here's the ironic part - 3 of the past 4 vomits have been triggered by her choking on her Prevacid quick-dissolve tablet.  I know that either Prevacid or Prilosec is availing in a liquid form because I have friends whose infants have taken it, but apparently TennCare won't pay to have medicines compounded into liquids anymore, so we may be stuck with the puke pill that is supposed to stop the puking.  Awesome.

I think the next step is for me to send a polite-yet-firm message to the office requesting to speak with Dr. Moulten himself.  I think (because he told me this would possibly happen) that he's going to add the Zantac back in and see if together they can settle her little tummy down.  

And then we've got to get back into feeding therapy.  Yes, we took a little (3 week) hiatus.  Long story short, we are switching therapists, not because of any particular issues but because of insurance changes, etc.  Once we get all the paperwork in, Becca will start getting feeding therapy AT school, which is awesome because it means that they can actually do part of the session in the classroom during snack or lunch, so she'll have her peers around to help encourage her.  (And it's also awesome because it's done during school hours so we don't have to take an entire morning to trek 80 miles round-trip to Vandy every Friday - woot!)  Both of her former feeding therapists have been happy with her actual chewing, but I think there are some issues there.  There's the gagging, but we're also noticing (because we get to see her meals multiple times) that she's swallowing a lot of things whole.  She threw up in the bath tonight (got choked on some water) and started playing with the mini pepperonis.  Niiiice.

I'll keep you posted.  If I had known GI issues were going to be so much trouble, maybe we wouldn't have added them to the cadre of doctors this summer.  Ha - if only it worked that way, right?  :)

p.s. John took down the crib tonight.  We had left it up in her room in case the switch to the big girl bed didn't go so well.  She never needed it - and now there's no going back!