She pulled out her pH probe. I'm not sure how exactly it happened, but it must have been on our walk. Maybe it was when she was leaning waaaay over in the wagon to steal sips of Mommy's Sprite. It could have caught on something and gotten yanked out when she sat up. Poop. The weird part is that she didn't pull out the n-g tube, which was taped with the probe. The probe wire is skinnier, but the n-g tube wasn't even really loose. Odd. And annoying.
Since this is the probe that was to stay in place for 24 hours, we may be set back another day. They can't replace it tonight, as it's only done during the day (non-emergent and all), but we are still waiting to hear back from the resident on call about whether or not she will have to be put back under general anesthesia for it to be replaced. If so, they will have to stop her feeds, and we'll lose time on our tube feeding/growing experiment, which the attending said (when I finally saw him this morning for the first time!) will need to be at least 3 days. If they are able to replace the probe without having to stop her feeds, it's no big deal but kind of a pain.
All that means that we'll be here until at least Saturday but most likely Sunday or later. Thank God we're in a plush twin room! (Did I mention that already? We are in a room that was originally designed for a set of twins (remember, it used to be a NICU room and there are lots of twins in the NICU), so we have a little extra space which is mostly taken up by a REAL bed - so much better than the crappy pull-out "beds" we had in our old room!)
BUT - on the plus side today, we had two super fun visitors! First Melissa came to play and we walked all over the 4th floor! Becca walked really well with her, probably because she is a baby whisperer. Then when SuperMom was about to lose her patience, our new children's minister, Kristen, showed up, bearing cupcakes (hence my undying love for her). She was a rock star and kept Becca smiling and giggling while we waited and waited and waited for Becca's procedures and the much anticipated arrival of SuperDad. (Have I mentioned that Becca loves her daddy?) It was good to see her, good to have some help, and really, really good to be cared for by a fellow staff member. Becca's one of her kids now, so she visited her in the hospital. I think it was also really special because it affirmed Becca's place as an important, though itty bitty, member of our new congregation and not just a PK. That means a lot to me!
But if I only had one Itty Bitty Hill Medal of Honor to give out tonight, it would have to go to Mollie Mc, who drove through Mickey D's to feed my latest addiction and restore my humanity by presenting me with a mocha frappe, which is undeniably the most delicious way to ingest caffeine. I'm sure it's awful for me, but, well, I'm also sure that it pretty much made the rest of the day possible. :)
UPDATE: Becca can keep eating! Wohoo! They will drop the probe with her awake (much like the n-g tube). Don't know when, but we won't lose time!
Wednesday, June 30, 2010
Becca came through the procedures fine. Initial results are that everything looks normal. We are tracking all kinds of things (position, coughing, vomiting, burping, etc) so that they can compare the activities to the results they find in the pH probe readout. As usual, Becca woke up almost instantaneously and unhappily, especially because she ended up having to be intubated. She really looked drunk, which would have been amusing if it weren't so pitiful. She's getting back to her normal self, though in slow motion. She's watching Elmo Adventures in Grouchland while sitting on Daddy's lap in the rocking chair. Sweet. And now I will lie down and
watch Elmo close my eyes, too.
Tuesday, June 29, 2010
I'm so used to Becca's modelling gigs (haha!) that I forgot to mention here that she's on the cover of the summer issue of Vanderbilt's "...On Their Way" magazine. The whole issue is about prematurity, and Becca shares the feature article with Dr. Mildred Stahlman -- yes, as in the Stahlman NICU -- the Vanderbilt doctor who adapted an iron lung used for polio patients to treat the first preemie ever saved through mechanical ventilation. (And, in an amazing story that some of you friends of this now grown up miracle preemie know, she is a friend and actually took care of Becca in the NICU - wow!) It would not be an exaggeration to say that Dr. Stahlman pretty much invented the field of modern neonatology.
See why I love Vandy?
Don't know if today counts as the first day or the second day since we are just now zooming in on 24 hours. I don't have much energy to wax eloquent, so I'll just give you a run-down of the day.
We got to our room last night a bit before 9 pm, and after Becca was poked and prodded and had an n-g tube shoved down her throat, she fell asleep around 10. Thank goodness the nurses decided to ignore the orders to check vitals every 4 hours so that she could sleep! (Seriously, she's not here because she's sick - why wake a sleeping toddler who is here to grow every 4 hours by taking her blood pressure?) She woke up at 6, so she got 8 of her normal 12 hours of sleep. Not too bad by hospital standards. They gave her 12 ounces of her formula (Boost Kid Essentials 1.5, packing a whopping 45 calories per ounce, same thing she gets in her sippy cup) through her n-g tube over 10 hours. When she woke up and I realized that she had already gotten 80% of the calories she needed today, I felt like a new woman. Giving her breakfast was actually enjoyable (even though she ate 4 cheerios and 1 grape).
This morning, we saw the resident on GI duty and the GI fellow. Actually we saw each of them twice. We never did see the attending (!) or the endocrinologist that we were hoping to consult.
We stayed busy throughout the morning. We (and by "we," I mean Becca and I, as John was at home waiting for the interwebs guy) saw a child life specialist (perhaps the coolest job in the hospital), who brought us a playmat (not like we can keep this kid off the dirty floor, but at least we can cover part of it and make it more comfy for mom and dad to sit on) and some fresh toys, including a plastic Fisher Price armchair, which is adorable and the perfect size for Becca. We may have to use some birthday money to get one for home. I particularly love that it has a book attached to the side table. But I digress. We also talked to the social worker, who gave me some numbers to call to investigate ways for me to go back to work without causing us to lose our TennCare (again). Then Becca received a short occupational therapy evaluation. The OT suggested that we still keep the (rescheduled - was set for tomorrow) outpatient evaluation so that they could do more thorough assessments of her, but she is recommending that she get OT 3 times a week while we are here. (That's way more than we normally get, but, remember, we're in feeding boot camp, so I guess they want to hit the sensory issues hard while we're here. I'm all for it!) We also managed to see the speech/language pathologist (aka feeding therapist) at lunchtime, which was great! She is actually making calls/sending e-mails to get us fast-tracked into group therapy instead of sitting on the waiting list with 41 other kids. I guess having the GI admit you and threaten you with a feeding tube moves you up the list a bit. Of course, Becca totally made a liar out of me by...drumroll....Karla, Caroline, and Roxanna, this is for you....eating 5 bites of applesauce off a spoon! Wow!
After lunch, Daddy arrived, which was very exciting for both Becca and me. Once we got Becca to sleep, we got to spend some time with two of my most favorite people in the world, Carol and Pam. Becca woke up while Pam was here, so she even got to play with her some. Pam being the rock star that she is, she even helped entertain/comfort/distract Becca while they shoved the tube back down her nose into her stomach.
Oh yeah, I forgot about that one. Mid-morning, Becca was sitting on my lap, eating some pretzels, when she, as usual, gagged, coughed, settled down again, and then puked. Good times. I even had to go back and revise her food journal because I could identify pieces of breakfast that I didn't notice her actually eating. Yum. The amazing part? The nurse cleaned it up! Whoa! I didn't have to clean up the vomit! We may never leave this place.
But back to the afternoon, which I am apparently not recounting in chronological order, because before Pam arrived, I took a nice nap (though nowhere near Becca's 3 hour slumber) while John watched World Cup games on the computer (okay, he probably worked on his sermon some, too, but I only saw the soccer games) and talked to the visitors I missed, including the nutritionist and our buddy Melissa. Oh, and I also ran into a friend in the Taco Bell/Pizza Hut line (love healthy hospital food!) who happens to work in the sedation/surgery/etc office and offered to act as our mole. She later gave us the down-low on tomorrow's plan (since, you know, we never saw the attending, though he apparently stopped by, didn't see us, and didn't bother to ask the nurse where he might find us even though we were just a few yards away eating lunch - ugh).
So here it is:
She's getting tube feeds from 10 pm - 4 am, though now that I think about it, I don't know how much they are giving her. At 4 am, they will switch to IV fluids, which she will get up until her procedures begin at 1 (per my mole) or 2 (per the resident, via the nurse). She will be NPO (nothing by mouth) from 4 am on. At some point they will give her an enema and/or a suppository. Yay! Sounds like a fun morning for both of us! They will put her under general anesthesia and perform an upper and lower endoscopy. They are looking for...umm...irritation, tears, and inflammation, I think, and will take teeny tiny biopsies. Both with their pictures and the biopsies, they will look for things like food allergies, including celiac disease. After the scopes are done, they will run another tube down her other nostril and place a pH probe in her esophagus. Over the next 24 hours, the probe will measure the pH levels, checking for stomach acid shooting back up.
My hope is that the tests will show clear results (as in, obvious ones - I'll be kind of pissed if we've come this far in dealing with obvious reflux and they don't show ANYTHING wrong) and that she doesn't wake up from the anesthesia completely hysteric. Last time she had to be put under, the recovery nurse very emphatically suggested that we take her out of the unit when she got so loud and inconsolable that other parents were coming and checking her out. Seems that itty bitty has an awful lot of her cousin Emma in her, reflux and anesthesia hysteria included...but she's also just as smart, strong, and sassy, so I'm all for the resemblance. :)
I think that's all. Oh! We also had another visitor, via child life: Ozzie, the mascot for the Nashville Sounds (our minor league team). Becca LOVED him. She couldn't care less about the pitcher, but she followed Ozzie down the hall, knee-walking and squealing all the way. Pretty cute.
And now, I'm going to attempt to very quietly watch some Mr. Monk before I sleep. Thanks for all your kind thoughts, words, visits, etc. It's really weird to be back here -- on the same floor as the NICU and in the same unit, kinda-sorta, even -- but it's also really...comforting? Or at least it feels like we might get to the bottom of some of this stuff. Or work out some of the other stuff. I mean, we've been here 1 day and look at all the departments that have looked at her. We're getting somewhere!
Finally got admitted and settled in last night. We're in room 4312 - just 3 doors down from our old room in the step-down unit! (They have rearranged units.) We'd love visitors, but please call or text me first, as I'm trying to keep her on some kind of sleep schedule (ha!). We'll probably be here until at LEAST Thursday, so don't all come at once! :) I'll update more later when my partner-in-parenting arrives, but for now it's back to dancing for the munchkin. ("Munchkin," by the way is not recognized by the spellchecker. Weird.)
Sunday, June 27, 2010
There is lots and lots to fill you in on regarding our past week: Becca turning 2, moving to our new house (the best present I've ever given a 2-year-old!), Becca physical therapy evaluation at Vandy, John's and my speaking - keynoting! - at a conference on prematurity, and Saturday's Elmopalooza, but, as I've just stopped in at Moe's in the midst of errands to use their free wifi (still not internet at the house!), all I've only got time to tell you about the upcoming week.
On Tuesday I managed to wrestle my way on to the nutritionist's (at the GI) schedule, and she snuck the doc in to have a looksey. I told him flat-out that we needed to do something because she's throwing up more and not gaining weight, and, frankly, I just can't take it anymore.
So we made a plan. I was caught completely off-guard, however, when he told me that the plan involves 3-7 days in the hospital and that he'd like them to be next week. Whoa! We'll go in tomorrow whenever a bed opens up (you wait at home until they call - nice system), and they will run some tests, procedures, etc. I know that Dr. Moulton is planning on doing a scope so that he can look down her esophagus (and up her other parts - oh my) and see if there are any signs of food allergies. (Apparently they don't all manifest themselves in commonly observable ways.) While she sedate for all that fun, he will place a pH probe in her stomach. It will stay in for 24 hours so that we can see if something is off that might be contributing to the reflux. Then they will feed her through an n-g tube (nasal-gastric tube: nose to stomach; the same tube she had in the NICU for so long) and control her calories precisely and then weigh her periodically to see if she does indeed gain weight when she is getting enough calories. If not, there's something else going on that we need to uncover. If so, they will put in a g-tube, which is a semi-permanent feeding tube straight into her stomach. I say it's semi-permanent because, while some kids and adults have them their entire lives and depend on them for their full nutritional needs, Becca would likely grow out of her need for it in a few years. For now, we would use it to supplement the food that she does take orally so that she can eat what she wants and I won't lie awake at night counting every calorie she took in today (minus the ones she vomited) and brainstorming ways to get that total up to 800. They may also perform a nissen fundoplication, which would keep her from throwing up as much (more on that later if it comes about). I imagine to get this all done we'll be there more on the 7 days side than the 3.
In some ways, it feels like a step back. I thought hospital stays - at least ones that lasted several days - were behind us, especially now that we have made it through 2 RSV seasons without incident. And it feels like we are sending to her an inpatient feeding rehab (which we are), but one like you send severely anorexic patients when they are severely malnourished and have to be force fed and physically rehabilitated before they can begin psychological treatment. Truth be told, I feel like I've let my 2-year-old become anorexic. If I can mess her up this badly this early, what does adolescence have in store for us?
Of course I know she's not actually anorexic. But I think I'm learning the same painful lesson that mother of kids who do struggle with eating disorders learn...and that all parents eventually need to learn, though I'm not sure they all do. I can't make my daughter eat. I just can't do it. In fact (and you would have thought with Becca's personality I would have learned this earlier), I can't make her do anything. Sure, I can forcefully do things to her - like wrestle her on the changing table when she doesn't want to lie down for a diaper change - but I can't make her do it on her own. The truth is that she is a separate person. She is an individual. Becca is Becca and I am me. As close as we are, as much as I love her, and as much as she depends on me (seriously, if I had a dollar for every time she stretched her arms out and said, "MAMA," this week, I'd be dictating this post to my servant), she is her own person, and she is in control of her own body and what goes in it. The odd thing is that this is a lesson that I really want her to learn, but it's not one I want to learn about her. I want her to be independent, confident, clear that she doesn't owe anybody anything with her body, and comfortable with that responsible self-control. But, wow, I want her to do things my way. I want her to gobble up her food and ask for more. I want her to make a mess with her food and smear spaghetti sauce all over her face as she shoves it in. I want her to eat a damn cookie. I want her to eat enough so that the doctors don't cut a hole in her stomach and pour it in. But she won't, or, in other words, because of her health and sensory issues, she can't bring herself to do it. And, in the end, I can take her to therapy 1,000 times a week, I can sing and dance, I can sneak, I can cajole, I can bribe, but I. Can't. Make. Her. Do. It.
Hello, parenthood. Nice to meet you (again).
p.s. The hospital has wifi, so I should be able to keep you updated. Since John or I have to be there all the time, we'd love visitors, but make sure to call my cell phone first in case we are off the floor for tests, etc. Even better if you come bearing some energy to entertain a toddler for a few minutes so we can take a break. I mean, I love her and all, but a mom can only dance for so long before she collapses. :)
Thursday, June 17, 2010
Have you noticed the LilyPie ticker in the sidebar?
Yeah, Becca is turning 2. TWO. TWO!
In addition to our move (on her birthday!) and the upcoming Elmo-palooza, we have a string of 2-year appointments coming.
This week we've got final :( appointments with Jane (PT), Karla (OT), and Roxanna (SLP) at Sumner Station and will see Dr. Collins for the last time (at least in an official capacity) for Becca's 2-year-well CHILD appointment. (I think at 2, you're not a baby by anyone's definition. That's a little sad.)
Next week we move on Monday (EEK!).
Then see Dr. Dailey, the developmental physician in the NICU clinic, for a 2-hour appointment including a full physical workup and an in-depth developmental assessment. I'm really excited about this appointment. I'm a sucker for "objective" test scores - always loved getting those ACT and SAT and TCAP results in the mail as a kid! - so I'm really anxious to see how she scores. A few notes about such assessments, though: a) They tend not to be truly objective. If you work with kids a lot, you probably already know that child development is pretty fluid. Do you check something off the list if they do it once? Or twice? When they fully master it? b) Not all assessments are created equal. Even really goods ones can come up with different scores. For example, Becca's speech has been been evaluated recently through 3 different assessments. (I don't remember what they were called, but two were through Early Intervention and one was through her speech therapist, so it's not like I just downloaded random ones.) Her scores fell between 11 months and 26 months. Hmmm. So you can't put too much stock in them. c) Still, developmental assessments can be helpful tools, and as a mom, it's helpful to get outside professional opinions regarding the areas on which we need to focus and, frankly, to be able to give yourself an occasional pat on the back when we can see on paper that our efforts have paid off.
Okay, moving on. We'll also have a 2-hour physical therapy evaluation at the Vandy pediatric rehab clinic. After she's evaluated, we'll find out how long we have to wait until we can get in a slot (that is, if they decides she needs its...you know, if the 2-year-old who isn't walking needs PT). Hopefully it won't take too long, but we are exploring other options just in case.
On Thursday the 24th, John and I will be speaking at a conference on prematurity and infant mortality at Vanderbilt. Needless to say, I was quite surprised last week when I got a call from an acquaintance at the hospital who said, "Well, the governor was going to speak, but he had to bail, so I thought of you guys." What? Add that to the list of things I never thought I'd hear! :) I think she knew that since we are pastors, we wouldn't be too scared about speaking publicly on short notice. John and I will basically be telling our story and talking about how Becca's prematurity continues to affect our lives. The conference is open to the public, so if you are interested, check out their website. I'd love to see a couple familiar faces!
Also sometime next week we are supposed do a weight check at the GI's office and schedule our follow-up with them for two weeks from now, but I still can't get an appointment scheduled. Ugh.
Phew. Do you see why I'm so glad that Nana Dana and then G-Diddy will be here to help out?
At at the end of it, my baby will be two years old. Wow.
Tuesday, June 15, 2010
Monday, June 14, 2010
Friday, June 11, 2010
Our friend Narcie is a United Methodist campus minister at Winthrop University in South Carolina. About 2 weeks ago, she was at a campus ministry conference, and she had a seizure. Turns out that she has a tumor. In her brain.
You may remember Narcie, Mike, Enoch, and Evy from our visit with them last summer. They are fabulous and amazing and some of my favorite people in the world. Oddly enough, Narcie was present for part of mine and John's first date. (It's a long story that tells you a lot about my husband - but our first date involved a free campus dinner that Narcie hosted. Good times.) Becca is between Enoch and Evy age-wise. And they are adorable.
Narcie had surgery today to have the tumor removed. I haven't yet heard how the surgery (a left frontal craniotomy) went. The surgeon was hopeful that he would be able to fully remove the tumor and was glad to see that though it was touching the motor cortex, the tumor had not penetrated it. Even so, he was messing around in some really delicate areas (hello, it's her brain), and we've been praying all day for steady hands and precision.
Assuming that everything goes perfectly, Narcie will be in ICU tonight and on a regular floor for a few days before beginning her recovery at home. They won't know anything about what the tumor actually is for 2-3 weeks.
I'll update when I hear something, but please do remember the Jeter family tonight and in the coming weeks and months. The next few weeks and on are going to be tough, no matter what this "interloper," as Narcie called it, may be. So do what you guys do: pray, think good thoughts, meditate, hold crystals, whatever. Just send these guys some love. They are such lovely people!
p.s. If you would like more information, you can follow her blog at http://narciejeter.wordpress.com. I'm not sure if someone will post in her stead over the next few days or not, but if you have a few minutes to check it out, I'm sure you'll understand why we love Narcie so much!
*Update! Narcie came through the surgery well, and they think they got all of the tumor! Wohoo! Of course, that's not the end of the issue, but it's a great big huge wonderful step in the right direction! For more info visit http://narciejeter.wordpress.com/ .
Wednesday, June 9, 2010
I really am still here. Promise. But I'm buried under boxes and to-do lists and great expectations and itty bitty clothes and big toys and books and books and books.
BUT - Becca has officially taken some first steps. Wohoo!! She's definitely not "walking," per se, but now we know she's got it in her, and it's just a matter of time.
And no, I don't have video of it, silly. I'm too busy begging and pleading and cajoling and encouraging and stretching and clapping and reveling to take pictures. Besides, it hasn't happened very often.
But it's happened! She's going to be a walker! (I was seriously starting to wonder.) Perhaps by her birthday...??
Tuesday, June 1, 2010
Well, I ovulated. About 2 weeks ago. I know this because I am, without a shadow of a doubt, not pregnant. (Although this is when my mind gets really creative and tells me things like, "There is that one woman you know who still got her period when she was pregnant, so maybe?" Oh mind, how I would love to quiet you!)
Downside: I am not pregnant. Obvious disappointment.
Upside: I ovulated. And that means that the new medicine (Metformin) did its job. (Or my body did it on its own; also good.)
So I guess that's progress. It gives me something to work with at least. Now back to the charts, calendars, etc. An observant United Methodist might be chuckling about now because you know what's going on in about 2 weeks. Don't worry; we'll make it work. We don't really need to go to all of those meetings. ;)
We are now beginning month ten of "trying," which is such an unfortunate term. I guess that means that we have now "failed" nine times in a row. John and I don't like to fail. And we want a baby. The earliest possible due date is now early March. That seems like a really, really long way off. There's still a good chance this kiddo would make an early appearance as well, though.
I like to plan. I like to schedule. I like to organize (our lives, not our stuff). Infertility is inconvenient. And it's sad. And it's frustrating. And it's maddening.
But this time around (even though it is taking significantly longer than it did with Becca), it doesn't feel tragic to me. Yes, it hurts every time I hear about one of the millions and billions of pregnant women that I know. Seriously, I have close to 1,000 facebook friends, and I think a full 900 of them are pregnant right now. Of course I am terribly happy for my friends, I really am, but there is a sting and often some tears.
Here's the thing, though: I am a mom. I have been blessed with the most amazing, beautiful, fantastic, strong and hilarious girl that I have ever met, and she's my daughter! My little girl! True, I know our family is not complete. True, I want another child desperately. But in the meantime, I get to snuggle, wrestle and parent Becca Hill. How lucky am I? Seriously, could I ask for more?
Well, yeah, I can ask, and I do. My heart aches for another little one (preferably not an itty bitty one, though!). But my heart is also bursting with joy and pride because
I am a mother.
We are experiencing secondary infertility; that is, we are having trouble conceiving another child, not our first child. I have several friends dealing with infertility currently, and many of you readers have dealt with it in the past. It's an odd sorority, but we women stand with each other in this sort of ordeal. But I think that my pain is different than the pain of mothers-in-waiting who don't have a child already. I remember the sheer terror I experienced. What if I'm never a mother? Sure that's not the only goal I had in my life, but it's the one I cared the most about, hands down. And now I am. So I am happy. And I realize just how lucky and blessed I am.
For now, John and I are planning on pursuing the same plan of care, as the docs say. We'll give it some more time, get this move behind us, and get settled in before we change anything. Adoption is in the back of my mind, but I am well aware of the enormous emotion and financial investment required by any kind of adoption. We'll see.
I want to say something to any women reading this post who are currently dealing with primary infertility. But I don't know what it is. I guess I want you to know that I haven't forgotten your struggle. I want you to know that when I talk about our struggles with infertility, in the same breath, I am counting my blessings. I want to say, "Hang in there. It's so worth it." I don't really know what I want to say...maybe that, tonight, I'm thinking about you and tossing a prayer up to the matriarchs of my faith who longed for children of their own thousands of years ago. You are not alone. And if you feel like you are, check out Genesis 30. My favorite verse is is verse 22:
"Then God remembered Rachel; he listened to her and opened her womb."
May God remember each of us...and SOON!