Sunday, February 27, 2011

Thoughts on Tri's

My pregnancy with Becca ended right at 28 weeks, which, depending on how you measure, is the end of the second trimester.  That means, of course, that she and I only got TWO TRImesters.  Which I guess means that we got 2 semesters, really.  If there is no third, a pregnancy can't really be divided into trimesters, right?  


I still grieve the loss of that third trimester - for me, for her, for us.  I REALLY wanted to get big and fat and waddly and complain about my hips hurting, not being able to get comfortable, not having any room to eat because the baby was taking up so much room in there.  I REALLY wanted to have baby showers (which I did end up having, thankfully, but in a different way).  I wanted to nest.  I wanted to worry about where my water was going to break - what if I was in a patient's room at the hospital?  Or in the middle of an IPR group with my awkward male supervisor?  


Instead -- and I'm not saying this to be dramatic, it's just God's honest truth -- I planned Becca's funeral.  I can still tell you where it was going to be, who was going to do what, where I wanted her remains placed.  When I encounter an emotional trigger (like a child's funeral), I still find myself thinking about it and re-planning it.  (Now she loves to sing "Jesus Loves Me," so we'll include that, for example.)  Hello, post-traumatic stress disorder.  It's good to see you're still sticking around.  There's no reason to think at this point that I'll outlive Becca, but part of me is still all too acutely aware of that possibility.  Because of that damn missing trimester.


If she understood it, I'm sure Becca would be grieving that trimester, too.  It's the reason she's covered in IV scars.  It's the reason she has to be fed through a hole in her stomach (what, all kids don't get "tummy milk"?).  It's the reason I have to give her a shot every single night for the next 10 years.  I's the reason she ran screaming from me when she saw me coming towards her with medicine.  It's the reason she can't keep up with her peers in the classroom or on the playground.  It's the reason why she can't jump, walk up or down stairs, get her hands messy or (we think at the moment) hear well.  It's the reason that she'll be in multiple therapy disciplines for several more years.  It's the reason that she's thrown up 11 times in the past 2 weeks.  All because of 3 months we missed out on in 2008.  


Mind you, I've very aware of how far she has come, and I'm grateful for every small step she makes, but I'm also becoming aware that she's likely not going to be one of the luckiest preemies who have fully recovered from their prematurity before they even realized they were different from other kids.  I'm confident that with her personality she will deal with these differences with the stubbornness and humor that already fill my days with bemused exasperation.  She'll be okay, even if she's not "normal".  


But, darn it, I want that trimester back!  I'd give my left arm to have that time with her developing properly inside me.  (Of course, I am very aware that not everything goes perfectly with full-term babies, either, but, wow, getting our full 40 weeks would have given her a much better start!)  But I can't.  There is no rewind button in life, and even if there were, there's nothing I could do to change things.  S^&t happens, and Becca and I got a crappy placenta and umbilical cord and a severe reaction in my body.  What's done is done.


But what I can do -- what we can do together -- is to help other women (and maybe even myself someday) have full-term pregnancies.  And you just might poop in your pants when you hear what I'm going to do about it.


In honor of the TRImester that Becca and I never had, I have signed up to participate in a TRIathlon.  


Whoa.  


Those of you who have known me a loooong time may remember that I was a vaguely athletic person at one point.  Those of you who have gotten to know me in recent years are probably thinking, "Um.  Okay.  I'll believe it when I see it."  And for those of you who don't know me personally, let me just tell you that it's going to take a heckuva lot of work over the next 10 weeks to haul all 196 pounds of me across that finish line.  


It's the Ramblin' Rose women's-only triathlon, which will be held on May 15th in Nashville.  It's a great length for a beginner - a 250 yard swim (10 pool lengths in a regular lap pool), a 9 mile bike ride and a 2 mile run.  And I've already paid my $86.50 to register, so my cheap butt is going. to. do. this.


But, I need your help!  Let me introduce you to a new (borrowed from a friend) logo:




In order to a) get me motivated to get into shape; and b) use this experience to actually help other families get all 3 of their trimesters, I'm asking you guys to sponsor my training...in dimes, of course!  


I'm basing sponsorship opportunities on training units.  One training unit = 1 mile run, 2 miles biked, or 150 yards swum.  You can choose your sponsorship level: for example, if you sponsor 2 dimes per training unit and I run 2 miles one day, you'd donate $0.40 for that day's workout.  I'm capping my training units (for sponsorship purposes) at 150, so the maximum donation a 1 dime sponsorship would necessitate is $15.  All the money raised will go towards our March for Babies team.  With only 7 weeks left until the March for Babies, I'll be pushing it to get to the 150 level, given how out of shape I am now.  So your sponsorship will definitely be motivating to me!


If you are interested in sponsoring me, just leave a comment on this post, noting how many dimes per training unit you'd like to contribute.  As always, your gift to the March of Dimes is tax deductible, and I'll provide you with a receipt after the March for Babies (which is on April 17th).  Let's see how those dimes -- and my efforts -- can add up!


And don't forget - you can still sign up to be part of Itty Bitty Becca's Team and/or donate directly on our team page.  


Thanks for being such a wonderful support system - for me and for Itty Bitty!

Wednesday, February 23, 2011

Wednesday Weigh-In

Back to the original title!  Hooray for me!  Here's the scoop:


Last week: 9.8 kg (21 pounds, 10 ounces), 33 inches
This week: 9.9 kg (21 pounds, 13 ounces), 33 inches
Week's change: +100 grams (3 ounces), + 0 inches
Net change:  +2200 grams (70 ounces = 4 pounds, 6 ounces), +4 inches

Still haven't heard back from GI.

Tuesday, February 22, 2011

Feeding Update

I could just tell you that Becca's eating is improving...but it's more fun to show you with this video.  She still needs lots of feeding therapy and will not be leaving the feeding pump behind any time soon (or for a few years), but she is at least experimenting with some new textures these days...like that of...JELLO!

Sunday, February 20, 2011

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!  

Tuesday, February 15, 2011

Tinkle, Tinkle

Usually when I'm around Becca and hear a "tinkle" sound, it's her asking me to sing "Twinkle, Twinkle Little Star," which was the first song she ever sang along to and probably still her favorite song.  But on Monday, right before she went down for her nap in her big girl bed, I heard a different "tinkle" from Becca.  Yeah, that's right...wait for it...

Becca went pee-pee in the potty!

I was changing her diaper and asked her if she wanted to sit on the potty.  She said no, but after a few seconds, she said, "Pee-pee potty!"  After confirming that she did, indeed want to sit on the potty, I whisked her naked butt into the bathroom and sat her down on her squishy Elmo potty seat.  We then started to read our special potty-only Elmo books (a bribe to get her to actually spend a couple of minutes on the toilet), and halfway through Elmo's First Book of Airplanes and Rockets, I heard a little "tinkle tinkle tinkle"!  It wasn't very much; it might have even been only one "tinkle," but I was all over it!  I think it/I actually scared her a little bit.  She looked really surprised but then when I told her she actually got to USE TOILET PAPER (her favorite toy ever) to wipe, she got excited.  The rest of the routine is old hat to her because she does it every time she sits on the toilet: hop down (with Mommy's help - the toilet is very large when you are very wee), flush, watch the water go around and around (and talk about it), climb on the Elmo stool and let mom pick you up to "wass hans."  Except this time we had a massive potty dance in the middle of it, waving our arms, twirling in circles, all with her little naked booty poking out from under her Elmo shirt.  (You could say we're still a little obsessed with the furry red guy.)

I was so proud of her!  I don't expect her to be straight into panties or anything, but, y'all this is huge!  It's huge for any kid, but it's especially huge for one with gross motor delays and hyposensitivity issues.  Because she's under-responsive to sensory stimulation, it's hard for her to recognize the feeling that she's got to "go."  I mean, it's hard for her to actually feel that feeling.  But I think she did this time!  I know part of her wanting to sit on the potty was simply to put off her nap (she always wants to sit on the potty before bedtime!), but the diaper I had just taken off of her was really dry, and when she got to the potty, she started "tooting" (and told me every time she did) and, of course, peed, so I think she might actually be connecting the toilet with the sensation and the appropriate response to it.  She's associated the toilet with pee and pooh for quite sometime now - at least as the place where Mommy and Daddy pee and pooh.  But for her to realize that she can make things happen there, too, is awesome!

I'm not tossing out the diapers tonight, but I might just wait a little while before I decide just how jumbo a pack I should buy this week!

Monday, February 14, 2011

What Just Happened?

I remember now why I started blogging so much more when I stopped working - because I didn't have time to do it before.  And now that I'm back in the workforce, it's been difficult to sit down at the computer long enough to focus on a post.  But, wow, I've got a lot to write about.  Because here's what just happened: my Itty Bitty Baby Becca turned into a very BIG GIRL.  I'll try to knock out a few posts right now so that over the course of the week you can see what I mean.


So, first of all, let me update you on the big girl bed situation.


She's in it right now, napping.  Hopefully for a couple more hours.  She slept in it Friday, Saturday and Sunday nights with no problems.  Absolutely no problems.  She loves her big girl bed.  And she can't quite manage to climb in or out of it without help, which is (for my purposes) kind of awesome.  She also napped in it on Saturday and Sunday, and both naps were shorter than normal (but still about 1.5 hours), so I'm hoping that it's not being in the bed that is affecting the length of her naps.  She tends to nap longer when John isn't home (guess missing out on time with Daddy is just not worth the sleep to her), and he was home all weekend, so I'm hoping that's the issue.  I think we'll get an answer on that after today's nap.  I took Sasha, Buster AND Becca to the dog park and to Target this morning, so she's certainly tired, and SuperDad's at work, so if she's going to nap for her more typical 2.5-3 hours, today's the day.  Except that there is so much sunshine spilling into her room that that could be a disturbance...but I'm not about to complain about SUNSHINE after all of this snow!


Here's the last picture I took of Becca in her crib.  (One night this weekend I found her in her new bed sleeping in this exact same position.  Love it.)



And here's how excited she was when I brought her big girl bed home, followed by a clip of her testing it out once we finally got it together.  (This video is also awesome because you can tell just how well she listens to me.):

And here's her first night in the big girl bed, taken right at bedtime so she's awake but squeezing her eyes shut...while saying, "Cheese!"  This kid's a hoot!




I'd say this is one growing up transition that's been easier than I expected!

Friday, February 11, 2011

Big Girl Bed!

(As opposed to the "Big Girl Bed?" post from last week.)

We did it!  I bought Becca's big girl bed today (after making 4 trips to 3 stores - ugh)!  She's sleeping in it now.  I just went and check on her - she's all snuggled up, just like she normally is in her crib.  It's a toddler bed (we figured she'd fit in that for quite a while!), but John managed to finagle a bed rail for a twin bed so that the whole side is fenced in.  With all of her blankets and pillows, it looks like a little Becca nest.  She was quiet by the time I walked out of the room and hasn't made a peep since.  I expect that she may get confused when she wakes up in the middle of the night, but we'll see.  It seems the hardest part of it all just may be the assembly process.  (That was...difficult.  I guess $58 beds aren't known for their ease of use, especially when a VERY excited 2-year-old is trying to help.)

But then again, the hardest part was probably the bittersweet/ambivalent mama staring at the crib and realizing that she likely won't ever be putting her baby girl to sleep in there again.  For some reason, I didn't see that coming.  BUT.  She is a big girl, and that has been the goal all along.  I'm supposed to work myself out of a job, after all.

But if I ask her, Becca still tells me that she's Mama's Baby Girl.  And she is.

I'll update tomorrow and add some pictures!

Tuesday, February 8, 2011

Dance Lessons

We had a lovely visit with John's family this weekend (despite some illness).  Aunt Jen Jen (as opposed to Aunt Jenny Speas - let's hear it for the Jennifer generation!) is a dancer, and it looks like we may have another one on our hands.  Here's Becca's first ballet lesson!  (Don't mind the poor cinematography...it was an odd space.)

Sunday, February 6, 2011

March for Babies!

It's March for Babies Season!

Mark your calendars, folks - the 2011 Nashville March for Babies is only 10 weeks away!  And Becca wants YOU

to be on her team!  

You know that we are big fans of the March of Dimes in Itty Bitty Hill country.  Not only have they given SuperMom an awesome job, they have also made it possible for me to have THE BEST JOB EVER - being mommy to the little missy herself!  Without their research and specifically their work in bringing about a regional NICU system and the development of the surfactant therapy that helped her lungs in her very first days of life, I would likely be more well-rested and wealthier, but very, very sad...and Becca-less.  

You know, we had actually picked out a different name for a girl when we found out that Becca was having trouble.  But we decided to save that name for a daughter who would live and settled on Rebecca Marie.  Rebecca is significant on both sides of our families (my mom and John's aunt), and Marie sounds good with Rebecca (the reason John picked it out) and is my oldest friend in the world (the reason I agreed to it).  If Becca didn't make it, she would always be our Baby Becca; if she did, she'd have options as an adult (Becca, Rebecca, Becky, Beck, whatever).  But our *other name* (which I'm not going to tell you), we saved for a sure bet.  (Ah, ignorance is bliss...like any pregnancy or child is a "sure bet".)

I've never, ever in my life been so glad to be wrong.  

And frankly, the March of Dimes played a major role in proving me wrong.  And I still love them.  :)  Over the next few weeks, I'll be sharing more ways the March of Dimes has been making a difference in the lives of families and babies throughout the world for over 70 years. 

Itty Bitty Becca's team has set an overall goal of $2500 for this year's march.  That's a significant increase over last year's total, but I really believe that we can do it!  We have several team members raising funds on their own, and we've actually already got $300!  If you are interested in talking with your friends and families about contributing, you can either share the link below, or sign up on that page so that you can set up your own fundraising goal and personal page.  (It's really easy - just takes a minute.  I recommend a personal goal of $200.) 

We'll have a couple of ways to contribute over the coming weeks (including t-shirts again!), but to start us off, let me highlight two:
  1. Cold, hard cash...er...credit cards or PayPal, that is.  The most cost-effective way to contribute is a straight-up contribution.  To do so, visit www.marchforbabies.org/BeccaHill.  If you prefer to contribute via check, please let your e-mail address in a comment so that I can contact you with our home address.  
  2. Shop Itty Bitty Books!  For the month of February, I will contribute ALL of the profits from orders placed through this link.  (If that link doesn't work for you, go to www.ittybittybooks.info, click to enter the store, click on "March of Dimes Benefit" on the right and shop away!)  So if you've been meaning to replenish your kids' (or grandkids' or classroom') library or to stock up on awesome birthday gifts, this is a great time to do so!

And if you still need a reminder of what the March of Dimes means to our family, let the Itty Bitty Parrot Becca herself explain why you should join our team.  And then visit www.marchforbabies.org/BeccaHill to contribute or to sign up to walk with us.  



Thank you for your help - and we look forward to walking with you (in person or in spirit) on Sunday, April 17 in Centennial Park!

Thursday, February 3, 2011

Weekly Weigh-In...

...the just kidding version.


We skipped therapy and the weekly weigh-in on Wednesday because SuperMom was feeling super sinusy and miserable.  If she's out and about tomorrow, we may swing by the ped to get her weighed.  Maybe not.  It is 20 miles from our house, after all.  


However, I did just watch Becca eat an entire hot dog.  Thank you, Nathan's, for your 170 calories and 15 grams of fat.  Couldn't have gone straight to the bum of a better girl.

Background