Another First Day

Collin started his second year as a preschooler today. He was so excited to go that he was in my bedroom at 6:30 this morning telling me just how excited he was.
We were in a rush this morning and I forgot to take a picture of him before school. So I promised that we would take one when he got home. We ended up taking quite a few.
I'm sharing the many faces and personalities of Collin with you.
He came home proclaiming that he had met his best friend ever, but couldn't remember his name.

It's nice to have him busy doing his own thing in the mornings, but I'll miss the time we had before he started. Like just last week he went outside and showed me what it was like to chase the wind. What?? So I went out on the porch, and there he was running through the grass as fast as he could yelling, "see mom, I'm chasing the wind!", and then afterwards coming up to me and panting, "I won against the wind." Okay...

And for the first time in a long time I had a morning alone. Well almost alone. I did have to do a little entertaining...but he wears out much quicker than his older brother. So I did end up with some much needed quiet time.

I needed to contemplate a few things, mainly my new callings I received in church yesterday. More on those later.

After Collin's morning away and first day picture frenzy, he nabbed the camera from me and did a little photography of his own. Here's his work.

I'm not sure what he did here, but it's pretty cool, I might ask him to show me how to work my camera like that.

This wasn't distracting at all to a child that already hates eating!

He even managed to take some video, which I don't even know how to do on my camera.
So enjoy!


Caleb Update: This week is a busy doctor week, I'll start at the beginning.
Monday-Audiology appointment. We put him in the sound booth this afternoon to test him. The testing was a little dissapointing. I held him in my lap and as each sound and noise got louder he showed no response, even with the bone conductor hearing aide on. I'm trying not to get too disappointed, we don't have all the answers and children at this age often times don't respond consistently to sound.
Tuesday-Home nurse Tanda comes. She's awesome, she comes every week, sometimes three times a week to our home to check up on Caleb. Then we have Early Intervention working with Caleb and Staci comes over to the house once a month to work with Caleb and teach him things and mainly to teach me things, like how to interact and play with him.
Wednesday-I leave at noon to Iowa City. I meet with the geneticist that afternoon and we go through the genetic testing and get that process started.
Thursday-We have the Baehr first thing in the morning, which is a neurological hearing test. They will put Caleb to sleep and test his brain responses to sound. Diana (Caleb's audiologist) tells me that we will have some more answers after this test and hopefully a clearer picture as to what Caleb's future will be. We're also hoping to meet with Dr. Davis that day who is the pediatric heart surgeon that will be repairing Caleb's heart. If he's not in the OR that afternoon we'll sit down with him and discuss the surgery and all those details.
Friday-A trip to our in-town cardiologist Dr. Mooradian.

I know you're all jealous at the fun Caleb and I will be having this week, we'll keep you updated as to how it all goes!

After family prayer this evening I looked up to Caleb's sweet face and felt immense gratitude for the joy he brings into my life. Since he's been born I've heard many apologies, condolences and offered prayers for my little boy, and my heart bursts with gratitude for all those who are concerned and care. But when I think of every future and existing problem for Caleb, the pesty nose tube, the impending surgery and recovery, the hearing loss, the learning difficulties and the language barriers, and probably many other things I have not yet thought of, I am still filled with complete gratitude and humility that he's mine, and I would not change one hair on his head.

I almost cut off my head in this picture because I'm such a wreck, but Caleb is so cute it had to be posted.

This evening I was restless, I needed to be outside, the walls of my home felt as though they were closing in. So we went for a walk (that is why I'm so darn red in the face). This is how Caleb traveled. It's the good life for him.

And I meant to post this picture over a month ago when Cyndee was making her departure, but I forgot. That woman is so darn sneaky, she really thought she could somehow manage to go back to Arizona with Caleb. He tried to make his escape, but it just never worked out for the two of them. So this is for you Cyn. Your baby misses you!

Labor Day

We took the day literally this morning.

When I went out to work on the yard I found our wandering two year old neighbor boy in the back yard. He was wearing one jeweled sandal on one foot and a bright pink croc on the other.

I took a picture for proof.

This was my big raking accomplishment. I was dripping in sweat by the time the yard was in neat little leaf piles. I thought I had helped Tom out so much by raking the leaves for him.

Then he came with the lawn mower to the backyard and I realized that he was mowing them up instead of picking them up.

He assured me over and over that the raking really did help and make it easier for him, despite the fact he had never planned to rake, but to just mow them all. Nice.

And I worked really hard.

Want proof?

My new nasty blister.

After my yard work I decided it was time to cut the boys hair. It's been growing out all summer and was becoming completely unmanageable. I made the decision on Friday when I picked Talin up from school. It was humid outside and he was walking towards me and his hair was sticking straight up. It was as if he took his hands through it and because he was all sweaty it just stayed in an upright position. I knew it had to be cut. And he was very obliging to the suggestion.
Here are the before pictures.

And here are the after.

And I couldn't help but put this in. Caleb and his dinner.

Big Boys Don't Cry...

...they go to school.

First grade is not the same as kindergarten.

My pep talk?

Remember who you are.

Remember that you have a Heavenly Father that loves you and a mom and dad that are here for you.

You'll make new friends.

The first day always sucks.

I'm not sure if my children are just miniature, I mean I'm certainly not a "petite" girl, but Talin looks the same size as the kindergartners and the 1st graders all look like giants. I hope the boy can hold his own.
His nerves were getting the best of him. His new teacher looks like she's eighteen. None of his friends are in his new class. We're hoping for a miracle.
First day went okay, but he claims he was bored and has no friends. First day always sucks.
Today is the second day. It WILL get better.

Caleb in his cute church outfit that Aunt Amy gave him. The outfit fits in length, he's just still a little slim. I've never seen a baby with so little chub as this one.
My solution to cute little pants that won't hold up?
Wrap a belt around him twice.
It totally worked.
And it was totally ridiculous.
I'm not sure what I'll do when Caleb's constant entertainment goes to preschool in two weeks.
Met his teacher today. He will be the big man on campus. The oldest, and most likely the biggest in his class. Total opposite of what Talin is dealing with. Everything is opposite with those two.

What he lacks in brawn, he'll make up for in brains.
I think 1st grade is going to be wonderful for his little mind. He's constantly reading, creating and coming up with great ideas. He's going to do fabulous.

Now if only this little bit would drink a bottle on his own...

Good news:
Weight - 11 pounds 12 ounces

New surgery date - Nov. 25th

Yeah I know, he looks like the kid that gets beat up on the play ground everyday. It's a sad new device, and I'm starting to wonder where my baby is, with all the tape, tubing and now lovely khaki headband.

Here's the deal:

The ENT specialist out in Iowa City thinks that he has a working cochlea, and that his hearing loss is due to the structure of his ears, or I should say lack of structure. That because his ear is closed, not formed all the way and there is no ear canal, that he might have a working cochlea in there.

Solution:

A bone conductor hearing aide. It sits on the bone behind his ear and vibrates the sound through the bone, into his cochlea. Now if his cochlea is not damaged (fingers crossed), this would give him normal hearing, the way you and I hear, not the way a deaf person hears. If he were dealing with a damaged cochlea (deaf), then the hearing aide would only be able to magnify distorted sound for him. Kind of like Charlie Brown's teacher. Wa...wa...wa...wa...

So we go back to Iowa City on Sept. 10 & 11th.

The 10th:

Genetic testing

The 11th:

Neurological hearing test to see where the damage lies inside his ear.

Now if the bone conductor hearing aide is what he ends up with, don't worry, he'll only need to wear the head band for the first five years of his life. Then when his skull is thick enough, we'll drill it into his head behind his ear.

So there's the update!

Reality Check

Collin & Caleb
She's Gone! My sanity was dropped of at the airport yesterday at 6:30 in the morning.
Oh my goodness how I miss her!
It was so nice to have Cyndee around for a month. I'm just now realizing how much help she really was. For some reason the dishes keep piling up, the dishwasher has not been unloaded and no one has made the kids pancakes in two days.
We all REALLY miss her!

This is what we did her second to last day here. Stayed up till midnight on Saturday making this glorious five layered chocolate cake.
Caleb helped and shared in the bounty of chocolate.

And I shaved every blasted chocolate curl.

Update

So Caleb is doing better...a little. We went to the doctor and he was put on amoxicillan. It's so difficult, because we have no idea if it might be an ear infection or not because we can't see his eardrums, and we have no idea how his ears are formed on the inside and whether or not he has proper drainage. So...we're playing the guessing game and putting him on some drugs.


He also cut his first tooth this month, which could also be causing all the symptoms of congestion, vomiting, fever and cough. I'm sure we'll get to the bottom of it eventually.

And better late than never, here are a few Fourth of July pics, a month late.

We did sparklers on the back porch, went to a ward barbecue and watched a really cool fireworks show late that night. The boys loved it.

On another note, Caleb is quite fascinated with being fed through his tube. He loves to sit and watch the milk go down, a little disturbing.

So this is my new discovery, or should I say, my copycat discovery.

I saw my cousin Diana's little boy in one on her blog and had to get it.

It's a bumbo and makes it really easy to sit Caleb up in it. He loves it and has a great view of the world.

This is not an unusual sight. Caleb on the table with his bumbo watching his brothers refuse to eat. It was peannuty noodles, my favorite, the recipe is found on Amy's food blog, so good!

This is what happens when we're in a rush. We sit the babies in front of the TV and let Collin and Talin take turns holding the tube to feed Caleb.

Comical.

And I decided to chop off my hair, kind of. It's not as short as what I originally planned on, but I still like it, I can just barely put it back into a freaky tiny ponytail, so that works.

The Latest

Caleb has become my tricky little gnome. I know, I shouldn't call my infant son a gnome, but he's such a compact little package that it's amusing. Or we could start calling him a hobbit, you see when I discovered that one of his many medications was causing him hair growth on his legs Tom shockingly proclaimed, "you gave birth to a hobbit!". The crazy mess of hair on this kid doesn't do much to dissuade you from the argument either.
Anyway, my tricky little gnome/hobbit managed Sunday evening to pull out his NG tube. There we were feeding him his bottle through the tubing when he sneakily slipped one tiny little finger under the tube and yanked. He didn't even squeal. I turned to see milk dripping all over Tom (who was holding him) and it seriously took my brain about three seconds to register what had happened.
There is nothing like sitting in the ER on a Sunday evening to have a NG tube reinserted for your baby. As usual Caleb has quite the charm in winning over the nurses with his cooing and giggling. It seriously makes you feel like crap when he hates you after the tube has been reinserted.
So Monday morning, we're home from the ER. Phone rings. Cyndee answers, I overhear her conversation with the ER rep following up for our last night visit. "Oh yes, everything is fine, he hasn't pulled his tube out again and everything is great..."
I head upstairs to check on Caleb in the crib sleeping. There he is, sound asleep with his tubing pulled out once again. Why??!?!
We are quite lucky though, we have a home nurse who comes Monday, Wednesday and Friday to check on Caleb. This way we don't have to head into the doctor's so often. She checks his weight, his breathing, his tube placement, and so forth. Well, Tanda (home nurse) was due to come at noon, so we decided to let her put the tubing in instead of making any inconvenient ER trips.
So there is Tanda, and she wants to teach me how to put in this NG tube to my beautiful smiling baby boy who is cooing at me. What???!! Yeah, so I decide to stop being a wimp and learn the trade, right? I mean I might as well suck it up and do it. So there I am, staring at the cutest little nose in the world and attempting to jab a long tub up into and down into his stomach.
Well...I failed. Not too shocking. As soon as I ran into any resistance I freaked out. Tanda took over and finished the job. I'm hoping that next time I might be a little less queasy about the whole thing and manage better.
On a good note, NG tubes really do work. He has reached the eleven pound marker. Woohoo!
On a bad note, he has been really sick. He has terrible congestion, which doesn't help with a nose tube, a bad cough and this morning he started running a fever and puking. So stressful. I'm waiting for the doctor to call me back for a plan of action.

He had a Bad Day

So much to catch up on.

Monday we saw Dr. Mooradian (Caleb's cardiologist). He determined Caleb to be way too small to undergo heart surgery on Wednesday, so he proposed postponing the surgery for 2-4 months.

Okay...I mean if your doctor is telling you he doesn't feel good about your child having heart surgery and saying things like, "let's give him a better chance with more weight on him" and stuff like that, you're going to agree.

So we did.
Surgery postponed.

Our new job is to fatten him up like a Thanksgiving turkey, the doctor's words once again. So on Friday we visited Dr. Boonstra (Caleb's pediatrician) and he set us up with the NG Tube.

My poor baby was quite upset.

After screaming and kicking and sobbing, he slept. And slept. And slept.

Grandma Cyndee has been our life safer. She spends a lot of time with Caleb getting him to eat. We try to feed him with the bottle first and get him to drink as much as possible. After a while he refuses.

So this is how we feed him.

Cutest boy in the world!

He's adjusting great to the tubing and hasn't pulled it out yet (finger's crossed!). We get a lot of interesting looks and double takes when we go out with him. And of course it's so sad to see him like this, but hopefully it won't be in for long. Hopefully our little man will decide to eat on his own!

Magical Talin

I asked Talin to hold a fussy Caleb while I vacuumed last night. By the time I was done he had managed to get Caleb to fall asleep by rubbing his face. So cute and sweet.
(And yes, this is what the summer attire looks like in our home, I don't pick out the outfits!)
And doesn't Caleb look chubby? He's putting on the rolls!

Caleb

Took Caleb to the pediatrician today for his weight check and he did great. He has gained four more ounces since Sunday. The doctor was pleased and said that she would go and call his cardiologist, who is Dr. Mooradian, and let him know, and also call his usual pediatrician, Dr. Boonstra, who is taking a week off this week to let him know.
After two hours in the doctor's office, it was with a sigh of relief that we went home, me smiling to myself that we've made it another week.

And I'm such a silly woman, I woke him up with my picture taking and now need to go remedy the situation!

These are pictures I took the other week. He's so cute and so quick to smile anymore.

Update

Caleb is doing well. We were released from the hospital Sunday afternoon, and sent home with instructions to bottle feed him with fortified breast milk every three hours, and then try to nurse afterwards, and then for me to pump after that to keep my breast milk up. It's quite a ridiculous routine I find myself repeating over and over several times a day.
People keep saying, "I don't know how you do it".
Well, me neither, it's frustrating but also worth it to sustain my little person. We go back to the doctor tomorrow to see how well I've been doing in getting him to grow. I'm not sure what happens if he's not doing well, another hospital stay? A feeding tube? Not sure, but at this point I don't care, whatever is best for Caleb. That seems to be my motto as of late. On a sour note, or a more sour note at least, my child being hospitalized has only managed to postpone my lovely talk giving in church. Yes, I'll be speaking this Sunday now. Not much of a reprieve. And I also had someone call me on Monday to teach relief society this Sunday. I politely declined.

And I think I'm going crazy. I didn't make my children lunch today and let them gorge themselves on movie theatre popcorn instead, and then bathing them this evening I found myself squirting out the entire bottle of bath foam over their heads. They were thoroughly amused, and I was just trying to rid myself of the bottles that have been in there since December rusting, yet never running out. It took a lot of spraying to empty just one bottle of foam, my fingers were sore afterwards.

And I finally did it. After being questioned by every nurse and doctor we saw over the weekend on whether or not I've had Caleb tested for genetic syndromes, I finally made the appointment to do so. I guess his heart and ear problems are very common in genetic disorders. So I busted up the courage to make the phone call and set the appointment. I guess I shouldn't have been so worried about doing it, I don't have to take him to the appointment until December 10th. Yeah, that's how long the wait is, how crazy is that?

Miniature Trouble

Yesterday Caleb was admitted to the hospital for observation. He doesn't seem to be gaining weight fast enough for them or for his impending surgery. So here we are hanging out. I've learned a few things while I've been here:
1. My child is capable of sleeping in a crib all by himself throughout the night.
2. Hot Rod is truly an awesome movie if it can keep me up giggling while I'm sitting in the hospital.
3. Having your child hospitalized is a great way to get out of speaking in church on Sunday.
4. You can take blood out of a vein in the side of a child's head.
5. Caleb does not like #4.