Friday, January 28, 2011

Fear of a Child

Accompanying Caleb's newfound sense of identity is a small bundle of things he fears. Here is a picture of the four things that he's scared of:
Yes, it's supposed to look like that. Here is a picture that is a little more revealing:
He is scared of: 1) the dryer (when it's running with clothes in it), 2) that little bobble-head turtle made out of a coconut, 3) the dark, 4) the absence of me.

I don't really care about the turtle or the dryer, but my goodness, Child! I have to leave his room light on when I put him to bed (and I turn it off once he's asleep--thankfully he has still never woken up in the night). I hope I can find a night light that does the trick. I don't want him to get too used to sleeping in a bright room.

And the absence of me? Well, it's just a phase (I hope and pray). I like that he loves me that much, but sometimes a mom has to walk to the door to let the dog out. You'd think a child would be ok with that, but no. No, my child is not ok with that.

What ever happened to "the faith of a child"? I guess I had better teach my child better. He's just too filled with fear.

Oh, and I think the morning nap phase is coming to an end. He hardly ever sleeps in the AM, but he's still cranky in the afternoon if he doesn't get his AM nap...hmmm...I guess this transition might be a little rough.

And did I mention that he's been able to crawl up the stairs for over a month now?

Ah, to Eat.

This is what it looks like when Caleb eats the way the feeding specialist suggested: (you know, using the food as a distraction...doesn't he look happy?)

This is Caleb eating the one thing I can count on to save his life if he ever decides to starve himself to death--a Little Debbie Swiss Cake Roll:

video
(yes, he is licking his fingers, and yes, he is picking up the crumbs)

Wednesday, January 19, 2011

Weight for it...!

(bear with me, it's a long one)

1) The physical therapist came by to evaluate Caleb again. It turns out that his gross motor skills aren't technically delayed. They're delayed to his adjusted age (11 months, instead of 14 months), which isn't a concern and doesn't warrant therapy. Yay! (In case you didn't now, preemies aren't expected to be caught up to their actual age until they're two, so Caleb is doing EXTREMELY well.)

2) Caleb will now be getting therapy from the feeding specialist, Gaylene, twice a month. I'm SO EXCITED! She helped me teach Caleb how to nurse (and bottle-feed, for that matter) forever ago, so we already know and love her. And I feel like I'm at the end of my rope when it comes to his feeding problems. I don't know what else to do! Gaylene will be saving my life. Here are the things that I learned from her during this most recent visit:
  • Caleb is what is called a "distracted eater." I could have coined that term myself! It's nice to know that what we're experiencing, though, is something that others deal with as well. Basically, eating for him is so miserable that he can't eat if he thinks about eating. Yikes. The need for distractions started small and gradually grew (at first he needed me to sing to him, then to play with my hair and face, then to hold a soft blanket, then to hold a hard toy, then to hold many hard toys--and I don't know what will come next!). If we don't take care of this soon, I may go crazy. So far Gaylene hasn't told me what to do to help with his distractions while eating a bottle, but she said that if he doesn't eat well from the bottle to offer him solids. Yesterday, while she was here, he ate three ounces from the bottle and refused more, so I offered him applesauce. He ate a WHOLE JAR! Who knew that I'd been putting him down for his afternoon nap hungry?! Poor kid.
  • Caleb is also a distracted eater while eating solids. Usually a sock or the top of a baby food jar does the trick. It's not as bad as bottle feedings. But, since he can't eat if he's thinking about eating, what do we now need to use as a distraction? Eating-related stuff! From now on we'll put a big scoop of whatever it is that I'm spoon feeding him on his tray, give him a spoon, and let him play in it. Let me tell you, doing this doesn't make him eat any more, but it makes him fight against me WAY less! I actually fed him without getting a headache and/or an anxiety attack and/or wanting to cry!
  • Gaylene also said that we can't EVER try to sneak a spoonful of food in his mouth. Doing so will make him lose trust in us, and will make him insecure every time we put him in his high chair.
  • If he decides that getting his face and hands wiped off is no longer fun, we need to take him out of the high chair to wipe him off. Everything done in the high chair should be positive.
  • She also said that there is no way he will need a g-tube. With her help, we can fix him. That's wonderful news.
  • Remember how once upon a time he could eat a whole 8-ounce bottle without a problem? And how this huge problem eating started about three months ago? Well, when he was littler he didn't know that he had a choice about eating. He didn't have a sense of individuality or identity. Three months ago (and it becomes more apparent every day) was where he reached that milestone. He realized that some things he wants, and some things he doesn't want, and that he can do things to get what he wants and to avoid what he doesn't want. Yes, the "I wanted that toy and I will cry in hopes that you will give it back" tantrum stage. Yes, the "mommy is out of my sight and I've been abandoned and I'm all alone in the world" stage. Yes, the more difficult stage.
  • Gaylene and I can do everything in the world to help Caleb, but nothing will matter if we don't find answers with the GI specialist.
  • Getting Caleb to the point where he can enjoy eating, hold his own bottle, stop fighting against eating, and eat a little more will take close to a year. I can do this, I can do this, I can do this....
It's SO nice to have a plan! I think I will sleep a little better, cry a little less, and have a little more faith in my ability to parent. Give us a year, and this bad thing will end! (And in the meantime, I'll just become very well-educated on baby eating problems and enjoy life a little more.)

Tuesday, January 11, 2011

Failure (to Thrive)

Two weeks ago we brought Caleb to the doctor's office because he was dehydrated. We were hoping that the doctor could pull some strings and get us in to see the GI specialist sooner, but it turns out that the GI specialist is in such high demand that there's nothing anyone can do. So, the doctor wanted us to come in for a weight check two weeks later. He said that if Caleb didn't gain four ounces in two weeks (not too much to ask), he'd pull some strings with another GI specialist who isn't in so much demand.

I brought Caleb in today expecting that he would weigh 16 lbs 6 ounces (two weeks ago he weighed 16 lbs exactly). I mean, he had some really good eating days in the past two weeks! He even ate more than 20 ounces of milk for a few of those days. One day he scarfed down a ton of solids. But he also broke his record for least amount of milk ever consumed in a day. He had eight ounces. He should eat that in one sitting. Another day he only had nine ounces.

Well, today he weighed 16 lbs 2 ounces. That's a gain of one ounce per week. And I thought he did well!

So, he was diagnosed with Failure to Thrive.

The doctor doesn't think that waiting one more month to see the really, really good GI specialist (I'm talkin' miracle worker, here) will hurt. In the meantime, I'm supposed to keep a detailed food diary: everything he eats, how much he eats, what he refuses, etc. We're also resuming therapy with the feeding specialist. And we are supposed to try giving him pediasure, white bread with melted cheese, malt-o-meal, and lots of butter on everything.

And I'm supposed to "keep doing what I'm doing, because I'm doing a good job."

Let me tell you, this is the most stressful part of having a preemie for me. It was terrible to hear his brain bleed diagnosis--bilateral grade II, almost grade III. That's scary! And having to anticipate heart surgery for your less than three-pound baby? Yeah, that stunk! But there was nothing I could do about it, so there was no point in worrying. With feeding, there is a lot that I can do. I do everything I can and sometimes I get really creative! For instance, if I brush a wet washcloth across his feet while he's in the high chair, I can sneak a bite of food in his mouth. And every bite helps, especially if it's got melted butter in it! This morning he held three different medicine bottles in his hands to look at, shake, and study to keep his mind off of the bottle that I had shoved in his mouth. And he ate six ounces! But tomorrow I will have to find something else, because after a while he got bored with the medicine bottles.

But when I do everything I can, and it still isn't enough? I feel like a failure. If Caleb doesn't get the nutrients he needs for proper brain growth and development, this could be serious. And right now, it's all on my shoulders. That's a lot of weight! Having this new diagnosis makes me feel like I've failed in my duty to keep my child healthy. "Failure to Mother." I know it's not true, but that's how it feels.

And I really don't see an end in sight. At the specialist, they'll do blood work. They might do another swallow study. They'll probably do a scope to make sure he doesn't have ulcers or deformations in his bowels. I wonder if they'll do allergy tests? They could test the pH in his throat to see how bad his reflux is. Hopefully they won't hospitalize him for any of these procedures, or for dehydration. They might try giving him fluids through an NG tube (like he had when he first came home from the hospital). They might try appetite stimulants. Hopefully they'll find something. And if they don't, I hope they give him a g-tube. He needs more nutrients to thrive, and thriving is most important right now.

In the meantime, I'll be ok. Caleb will be ok. He'll just be skinny, and I'll just be stressed. But we'll still be happy, because that kid has got the best laugh and the best smile. He's still doing so many amazing things, and that will never end. But his feeding problems? They'll end some day. Because All Bad Things Must End.
video

Tuesday, January 4, 2011

Updates

Caleb has come a long way in the last few weeks and months. Remember the birthday post? Well, now he's a completely different baby.

As of today, Caleb:
  • crawls like a pro
  • wears size 3 diapers while he sleeps, and size 2 while he's awake (he only takes a bottle before naps and bedtime, so the size 2's stay pretty dry)
  • still wears size 3-6 month clothing
  • has 8 teeth (four on the top and four on the bottom)
  • weighs in at exactly 16 pounds (as of about a week ago)
  • can FINALLY go from a crawl to a sit
  • can pull himself up to his feet on anything (and everything)
  • likes to kneel as he plays with his toys
  • still won't bend his knees and hold his own weight at the same time (remember--he never bounced on my lap as a little one. He locks his knees). This means that he has to do the splits and fall back onto his little bum to get down from when he's standing:
  • is starting to take a few steps while holding onto furniture
  • says "dog," "dada," "mama," and "bye-bye"
  • giggles best for Auntie Jenna (who is now living with us while she goes to BYU)
  • is COMPLETELY CAUGHT UP to his actual age (13.5 months) in every way (social, developmental, fine motor, etc.) except for gross motor skills. Not bending his knees while bearing weight is one big part of it. He's also not walking, but I completely expect that he'll take his first step around his due date (at one year adjusted age). Even though he's not caught up with gross motor skills, he still isn't technically delayed since he's at the level of a 10.5-month-old, which is what they expect of a preemie, but the baby psychologist suggested that I look into physical therapy again. He'll be evaluated soon, hopefully, but I still kind of expect that he won't qualify
  • is not eating cow's milk or formula at all. Remember his eating problems? He was eating so little that the nutritionist gave me the number of a woman with loads of extra frozen breast milk in hopes that a sensitive digestive system would be the problem, and that the milk would help. He did well with that for the first few days, but then he tapered off again. And then he started eating half the amount of solids that he used to eat. On a normal day, he would consume about 12-15 ounces of milk, 1 jar of baby food, and about 1/4 cup of baby cereal. And a few finger foods. It was stressful. So I took him to the pediatrician in hopes that he could get us in to see the GI specialist sooner since he was so dehydrated (and since he was eating less than he ate when he came home from the hospital and needed 16 ounces a day in order to gain a few ounces per week). The Doc wanted to do a weight check in two weeks. If he doesn't gain at least 4 ounces in two weeks, he'll pull some strings and get us in to see a different GI specialist whose schedule is more flexible. But, of course, now he's eating better. Not great, but better. For three days in a row now he's eaten two full jars of baby food per day. Yesterday he ate 18 ounces of milk. This morning he actually drooled while chewing on a toy. Is it weird that that's a big deal to me?