Up a size

When your child has been diagnosed with Failure to Thrive, noticing that she is outgrowing her clothes brings a sigh of relief, a sense of triumph, and maybe even a smug "I told you so" -- directed at her pushy doctors, of course.

After wearing teeny tiny size 18 Month pants for over a year, she blew through size 24 Months and now her 2T pairs are even too short. Thank goodness for elastic waistbands. She has slowly begun to fill out her tops, outgrowing many of her 2T sized ones as well. I can't believe I'm buying size 3T for my little girl. Sure, they might be a little long, but she'll grow into them.

24 Months sweatshirt? Way too short!

Here we go 3T!

She's hit 35 inches and is approaching 26 lbs. To think that this time last year she weight about the same as Aurelia does now is mind boggling. We have come such a long way.

Her Failure to Thrive diagnosis and the subsequent testing and constant shoving food at her was one of the hardest things I've had to manage, and I know she was so frustrated, too :( 

I hope and pray that her growth continues.

Carina is 2!

Carina -

On December 28th (sorry, Mommy is late again) we celebrated your 2nd birthday. You've gone from a tiny blob of a newborn to a happy, energetic, and quirky little girl.

I can't believe how much you have grown. Even from early on everyone commented on your big, beautiful eyes. I hope they stay this big and beautiful forever.

What's up with you:
You're speaking in sentences and can pretty much repeat any word we say, and then use it again in the correct context. It's amazing being able to ask you questions and have you answer. You can tell me what you'd like to eat for lunch. You can ask me what I'm doing. You talk talk talk nonstop and I love hearing your little voice. And you seem to think you're a Disney prince. A few times a day you'll say, "I'm Prince Eric!" or "I'm a Prince!" Hilarious. You have also started trying to sing. You know a few lines from "A Whole New World" from Aladdin and "Once Upon a Dream" from Sleeping Beauty and hearing you "sing" makes me smile every time.

You can say the numbers in order 1 through 10. I don't say count because we're still not sure if you completely understand the concept yet. Although you have on a few occasions looked at a group of three things and said, "3!" You're getting there. You can identify all of the letters of the alphabet, most shapes, and colors as well.

You like to jump and climb whenever possible. You climb on me and exclaim, "climbing Mommy mountain!" You can open doors now (eek!) and are getting better at using utensils. You'd still prefer to use your hands, though.

Your expressions kill me. You might just have the best side-eye ever.

Loves:  

• First and foremost, your binky and monkey. After you saw Aladdin for the first time your monkey gained a new name: Abu. We tried to wean you off of the binky but it didn't go so well. We need to give it a go again, soon.
• Food: mozzarella cheese (or cinderella cheese), clementines, yogurt-covered raisins, black beans, Nutella (just like Mommy!), toast covered in butter and cinnamon sugar, and cheesy eggs.
• Playing with your play kitchen and princess figurines.
• Snuggling. You'll say, "snuggle Mommy couch!" and grab my hand and lead me over to the couch to sit together. Please never stop this. I can't tell you how much I love it, too.
• Watching Mommy or Daddy draw (after you demand it) Disney princes, princesses, and sharks in every color of the rainbow for you.
• Watching Super Why, Sofia the First, The Little Mermaid, and Aladdin.
• Reading books. Your recent favorites are the Llama Llama series, Disney princess books, and a few Sandra Boynton books.

Hates:

• You still hate brushing your teeth and fight us every single time.
• When I turn off the TV. I swear you'd watch it all day every day if we let you. Good thing we don't ;)
• Taking a shower. Sometimes you love showering with Mommy or Daddy, but other times you scream bloody murder.

Height & Weight: A few weeks ago you weighed in at 23.5 lbs. and were 34 inches tall. We are FINALLY done with the Failure to Thrive diagnosis. At your Pediatric Nephrologist appointment in mid-December he was very happy with your growth and told us we have nothing to worry about. You're just a small kid! You are still in size 4 disposable diapers overnight and we had to completely unsnap most of your One-Size cloth diapers. You are in size 5 shoes and will be headed into 6s soon. Most of your clothes are size 24 Months and 2T. Your 18 Month pants are outgrowing you lengthwise, but still are too big in the waist! We need to find some pants with adjustable waistbands.

21 Months

22 Months

23 Months

I'm 2!

Birthday sundae

Happy Birthday, Carina.

Closing the door on this, hopefully for good

It has been a while since I last updated on Carina's Failure to Thrive diagnosis. We had what was supposed to be our final appointment with the Pediatric Nephrologist a couple weeks before Aurelia was born. We had hoped she'd be released from his care at that time, but her meager weight gain wasn't good enough in his opinion. So? He ordered repeat blood work.

I fought him this time. I didn't want to put Carina through it again. She has been stuck with needles so many times now I have actually lost count. He insisted, and said this would be the last time. If her blood work came back normal, he would drop it. And it did. Phew.

In addition to normal blood work, Carina has actually gained a bit of weight since her appointment! She was 22 lbs. 2 oz. at Aurelia's 2 week appointment a month ago. I am eager to see if that number increases at the next Pediatrician visit at the end of the month.We do have {what should be} one final follow up on December 10th. I am so eager to close the door on this, and I'm sure Carina is, too.

Carina is not impressed with your unfounded diagnosis

Yes, she is at the bottom of the growth charts, but she has hit all of developmental milestones. She's talking up a storm and loves letters and numbers and colors. She IS NOT the face of failure to thrive and I hate that effing diagnosis and the pain it has caused her and the stress and frustration it has brought to all of our lives.

I hate that I feel the need to check her weight constantly. Every few weeks that go by with no increase make me feel like a failure all over again. Despite everything I tell myself, I still have a hard time not equating the numbers on the scale with my value as a Mother.

So can we be done with this? Yes? Okay, good.

Not out of the woods yet

I mentioned a few weeks ago that we were taking Carina to see a Nutritionist and for a follow-up with the Pediatric Nephrologist.

The good news: the Nutritionist took a look at our daily food journals and told us that we are feeding her all the right things. She is eating a balanced diet, we just need to keep at it in terms of getting her to eat more of it. And? The blood work that we had done for the 3rd time (1st two values were abnormal) was normal! Her CO2 level was just fine this time around.

The blah news: the Nephrologist also ordered a blood gas test, which came back with a low blood pH. So, he doesn't feel comfortable ruling out Renal Tubular Acidosis (RTA) quite yet. He wants to see us again in September and if she doesn't have significant weight gain by then, he wants to try putting her on sodium bicarbonate (the treatment for RTA) to see if her growth improves.

I was hoping that her eating would improve upon weaning her a few weeks ago. So far, it's hard to tell. She is drinking more milk for sure, but we don't yet know if she is making any progress. Maybe I'll bring her down the hall to the Pediatrician for a weight check when I'm at the clinic for my OB appointment next Wednesday.

So I guess we'll see. Of course I don't want anything to be wrong with her, but if there is, we'd like to get her on the right path as soon as possible.

Failure to thrive update

While I have posted on Twitter and Facebook here and there about Carina's progress, I realized that it's been about since 6 weeks since I last updated you all on the blog. If you don't know what I'm talking about and would like to catch up, here is a good place to start, this is about her testing, and then the latest. So here goes.

Carina's kidney ultrasound was clear; nothing was abnormal. Despite repeat blood work showing a low CO2 level, the doctor still wants us to test her once more (which we'll do next week). On July 12th we have an appointment with a nutritionist to go over our food diaries, and then on July 16th we see the pediatric nephrologist once again. I'm assuming he'll give us the blood work and urinalysis results (from the last appointment) then.

We had her 18 Month appointment last week and she is now 19 lbs. 12 oz. (14%) and 31 inches (25%). Her doctor is actually no longer concerned. She is pretty convinced that she doesn't have any medical issues, as evidenced by her growing, albeit slowly. In her opinion, she's just a petite, picky eater.

Height - you see that 16% to 25% uptick? Eff yeah!

Weight - not quite as exciting, but steady at 14%

It seems that whenever I get really frustrated with Carina's eating she does something else that amazes me. Like these past couple weeks have been a vocabulary explosion. I've been tracking her words with my voKIDulary app and she is now up to 85! My favorites are broccoli, raisins, avocado, and chocolate milk. She also has gone from recognizing and pointing out a few letters, to all of them. I say take that, failure to thrive!

Hopefully after her appointments next week I'll be able to give a final, conclusive update on all this. Thanks for bearing with me here, friends.

Feel like I've been punched in the gut

I thought it was rather cold for a pediatric physician's exam room. And I don't mean the ambient temperature. No toys, no books, no color...not even any covers on the electrical outlets (WTF?)

Then the nephrologist entered, glanced quickly at Carina's chart and asked, "so you're here for failure to thrive?"

BAM. Frozen. I felt like the wind was knocked out of me. Like I had been punched.

I thought we were there to diagnose or rule out Renal Tubular Acidosis, and told him so. "Well, yes, technically," he started, "but the underlying issue is failure to thrive, no?"

Ugh. Hey doc, can you please stop saying that? Because every time it rolls off of your tongue I cringe and then die a little inside. Sure, I'm being dramatic, but I just can't help but feel like a failure myself when you refer to my daughter as failing to thrive.

Failure to thrive my ass!

Then, for maybe the 3rd time in the last few weeks, I went through what a typical day's meals and snacks look like for Carina...feeling like I was on trial as I described each and every food that touches her mouth. Then he asked about her pacifier use and how often she breastfeeds. I honestly don't know why I was feeling so defensive the entire time.

The outcome? We can't diagnose or rule out RTA yet; the doctor ordered another urinalysis and more blood work. In the meantime we're to go see a nutritionist after I create a "food diary" detailing 3 days of exactly what Carina eats and when. This sounds like tons of fun. As if I don't spend enough time trying to get her to eat, now I need to write down everything so we can count calories. I'm just so frustrated.

He did say, though, that he doesn't think she has RTA. We talked a lot about my height & weight both now and growing up, and Mike's as well. He is leaning towards a diagnosis of being the product of two small parents who were slow to grow early on as well.

The good news? She actually gained a pound and grew an inch in the last 6 weeks. This is huge, given that she only gained a pound and inch in the previous 6 months. I'm hoping this is a trend that's here to stay.

Please let this be the end of tests for Carina, and punches to Mommy's gut.

Update on Carina's testing

After Carina's blood work results last week her pediatrician ordered further testing. Her repeat STAT blood work showed the same low CO2 level, so we know the original value wasn't a fluke. We are still waiting on the urinalysis results; we should hear by Monday.

By the time you read this, we're probably already at the hospital getting her kidney ultrasound done; her appointment is at 8:30 AM. The doctor told me that they will be looking for signs of calcification. If this ultrasound is anything like the one she had back when she was 4 months old (to rule out pyloric stenosis), please please please pray that we don't forget the binky. We did then, and she was so hysterical they could barely get a clear shot of anything. Nursing didn't even calm her down. Not looking forward to this!

Her appointment with the Pediatric Nephrologist is on May 15th. Can't come soon enough.

Tee hee...I went pee pee in a plastic bag

Oh and the pee collection bag for the urinalysis? That was loads of fun. She screamed bloody murder while the nurse put it on, and when we checked it down in the lab after her blood work an hour later, no pee. An hour later right before her nap? Still no pee. Finally, after her nap, I was so excited to see that Santa had come. I peeled off the bag and tried to pour it into the cup but it wouldn't pour! There was some weird double-layer that was keeping the pee in. I had to end up cutting the bag in half in order to pour successfully. I probably did it all wrong, but time was of the essence! Had to get it off to the lab. ::facepalm::

I think I spilled pee everywhere, too. Please don't tell Mike.

Results

After almost two weeks and multiple nagging calls to the Pediatrician's office, we finally got Carina's blood work results. The doctor had ordered a battery of tests at her 15 month appointment due to her not gaining weight and generally not wanting to eat.

Everything was normal except her CO2 level was low. Coupled with her lack of growth, the doctor suspects something called Renal Tubular Acidosis. It is a condition in which the kidneys fail to properly acidify urine, resulting in an accumulation of acid in the body. It's rare, but very easily treatable, thank goodness.

What's next? More blood work, a urine sample (which apparently involves taping a bag to her lady parts?), and a kidney ultrasound. The thought of putting her through more tests is making me cry, even though I know it's what's best for her, and necessary. If left untreated, it can lead to growth retardation, rickets, bone disease, kidney stones, and/or eventually renal failure.

What? More tests? :(

At this point I'm not sure for what I am hoping. I obviously don't want anything to be wrong with her, but if this is what she has, it explains the feeding problems and stunted growth we have been experiencing for months now. And according to some of the literature I am reading (I know, I know...I shouldn't have Googled), it is very easily treated with Sodium Bicarbonate and half of the cases even go away on their own before children reach Kindergarten. If the tests come back negative, though, then we're back to square one.

::sigh::

Any prayers or positive thoughts would be much appreciated. I just can't stop crying at the thought of my poor little peanut being sick.

My Brave Girl

Yesterday we brought Carina to the lab for her blood work to check to see if she has any metabolic issues due to her {almost} non-existent growth over the last few months. M went into the tiny room of death with her and two phlebotomists and they shut the door behind them. I waited outside because I knew if I was in there I would freak the eff out.

Being right outside was no better. She screamed and cried for what seemed like hours (in actuality it was about two minutes) and I sobbed along with her the whole time. When she was finished I nursed her and we headed home. As soon as we got in the car it was like nothing had happened; she was back to her old happy self. I, on the other hand, was traumatized all day long. Every time I think about those little screams I start to tear up...I blame pregnancy.

It's okay Mommy, don't cry!

My brave, strong girl

Needles can't get me down - back to playing!

I am such a wimp. This was worse for me than it was for her. So now we wait for the results, and hope for the best.

I want to freaking punch the scale

It's hard not to feel like a failure when your baby doesn't gain a single ounce or grow even a fraction of an inch in more than 7 weeks. Now, had she been experiencing an upward trend and this was just a fluke, I wouldn't be so upset. But, our little babe hasn't even put on 2 pounds since she was about 7 months old. I can't help but feel like I'm a terrible Mom.

About a month ago I wrote about my frustrations in trying to get her to eat and I appreciate all of your advice. I have tried so many different things with her and I really thought we were making progress. She has outgrown some of her clothes in the last couple weeks so I was sure that she had at least put on a little poundage, but no dice.

On average, I would say that I spend at least half of the time she is awake feeding her or trying to get her to eat. It literally consumes our days and has been consuming me. Seeing that number on the scale yesterday - the same number I saw weeks ago - knocked the wind out of me.

So our next steps are blood work to {hopefully} rule out any metabolic issues and a follow up in 6 weeks. I am supposed to continue to feed her high calorie foods as often as possible and hope for the best in the meantime, I guess. I wish she liked chocolate because it's Cadbury Mini Egg season and I know for a fact that they have been to blame for my seasonal freak weight gain in the past...