David Christopher: June 2006

June 2006

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6/2/06

6/1 Update

David is still improving! He did end up having an infection, like I thought he would, but it's just a pseudomonas, which is easy to treat. Thankfully, that stupid bacteria didn't come back. WHEW! The wean on the ventilator is going well - the next prayer is that when he's able to come off his airway isn't so damaged that he would need a trach. His tummy is working, just very slowly. It's still soft, but it's very distended - you can see that in some of the pictures I took today. If you look closely, you can see how visable his veins are, since his tummy is so tight.

He's wanting to cuddle so bad! I can't wait to hold him!!! This has been the longest two months of my LIFE!

This is our new friend, Ginger Bread, that Amber got him. David loves him! Well, he loves to put him in his mouth, anyways :)

Here is our Respiratory Therapist - one of our favorites! Her name is Shanna! David must love her, too, because he keeps smiling at her! He's smiled at her more that he's smiled at me, lately!!

And finally, here's me. Shanna offered to take a picture, so I did - and of course I don't have any makeup on....

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6/3/06

I hate to jinx it but...
We're all set to take David off the vent tomorrow!!! I'm so excited! Because that means I get to hold him again!!

The only thing I'm worried about - please pray for us - is if his airway is too damaged it'll close up his airway and they'll have to give him a trach :(

But! He hasn't extubated once since we've been in, so that has to be good, right? Keep us in your prayers! Gotta go to bed early tonight, so I can be up there at 9am! That's when they are planning on doing it!

There will be lots of pictures asap!

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6/3/06

Off the Vent!

This was made by bluestbutterfly, who has been kind enough to keep a virtual prayer vigil for David at the top of her blog since we've been in the hospital!

The PICU called me at about 8:15 this morning and told me they were all set to extubate him when I got there - so I rushed up there real quick! I was so nervous! The nurse we had last night had me prepared for the worst!

Just some last pictures of him on the vent!

So they took the tape off and pulled the tube out, sat him up and immediately began giving him nebulized medicine to keep his airway from swelling. About two minutes later they put him in my lap and let me hold him!!! He did great! We had a little incident when the respiratory therapist didn't put a canula on him when she began his breathing treatment at 9:30 and he desatted, but came back up immediately when given the canula. He is also wearing a mask that gives humidity to keep his airway from swelling.

Here are the videos of him coming off the vent - some of them might be a little graphic - so there's your warning!

VIDEO ONE
VIDEO TWO
VIDEO THREE
VIDEO FOUR

Everyone in the unit was in there, hoping for the best. And we had lots of visitors from the NICU come in there to see him, too. I held him all morning long. Finally I put him back in his bed because he was fighting the mask, so they had to put him under a humidified tent....they put him under the biggest one and he's gotten so big that one swing of his arms and the whole tent would be upside down! He's even remembered how to pull out his nasal canula - my little stinker!

Mommy and David

Mommy, Daddy, and David

So it went very smoothly, thank God. I asked the doctor what else has to happen before I get to take him home (and he laughed) and told me that we still have quite a bit to accomplish before that happens. We still have to make sure his tummy is working properly (hopefully get him on bolus feeds) and wean his breathing treatments down. Dr. Levy said he doesn't like to send patients home on Q3 breathing treatments because it's too much work - but I guess he didn't realize that's what we were already doing! And of course, the final step is to wean the rest of his sedation off. And then I get to take him home!

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Sorry dial up users - I had to post more pictures from today!! He's still doing great!!!

Sleeping when I arrived - I can't get over how big he is!!

His first "real" bath since we've been there! He was a stinky kid! And he actually fell asleep while in the bathtub!!

Having a little temper tantrum after the bath:

VIDEO (can you hear his hoarse cry?)

Wearing a new outfit! (all but one sleeve - I had to wait for the nurse to come in there and help me with the other sleeve since he has an IV in that arm)

Getting a breathing treatment:

VIDEO

Sucking his thumb:

Just more random pics:

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6/7/06

David's First Laugh!!!

It was the most amazing thing in the whole wide world. I was holding him on Monday afternoon, and talking to Meme on the phone at the same time - all of a sudden David started to giggle! At first I thought he was choking! But then I looked down at him, and he had the biggest smile on his face! It was great! And, then I tried for thirty minutes to get it on video - and guess what? I did!!

CLICK HERE for a video of David laughing!!!

CLICK HERE for a video of David flashing a huge smile!!

Sorry they're upside down, btw - it's difficult to get a video of a squirmy baby sitting in your lap!!

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David is doing really well!! They're still weaning his sedatives - they have to go really slow since they're narcotics and he'll go through withdrawals if they wean too quickly. His tummy is COMPLETELY normal again - AND he's up to full feeds! He's getting breathing treatments every two hours - Dr. Levy wants to get it to AT LEAST every three hours before we get to bring him home. But soon!!!

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More pictures of David - since he's so darn cute!

This is Margaret, she's our occupational therapist, and she was working with David a little bit today:

This is Manuel, one of out respiratory therapists:

This is Shanna, another respiratory therapist:

And this is Sarah, one of our favorite nurses:

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6/9/06

So they don't think David can see

So lately I've been hearing comments from people - but didn't think anything about them until tonight. Like last week one of the nurses was saying to me "See? WE think he can see!" I'm like "DUH of course he can see, weirdo."

And then tonight I had four DIFFERENT nurses tell me that they were worried about his vision. It never occured to me, but the nurse showed me that you can put your hand all the way to his face and he won't even blink or anything until you touch his skin. And another nurse pointed out that you can walk all around him and he doesn't notice you until you make noise.

The thing is, he used to be able to see! Remember? He used to sit and stare at his hands all day long! So, if something DID happen, it's happened since we've been in there. The nurse said sometimes when they code like he did that night there's damage that you don't notice for a while.

Anyways, I've arranged to have his eye specialist come out ASAP to check it out. I know that I ask for ALOT of prayers from you guys, but if I could ask for another - please pray that if he DOES have eye damage that it's something ROP related that can be fixed with surgery? I've been taking all these pictures all along with the hopes that one day he'd be able to see them. :'(

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Tetris, anyone?

Have you ever played Tetris? You know how right before you lose, and your area is almost completely full of blocks, and you pray for the right one to come into play so you can place it in the right spot, just to buy yourself more time? And every once in a while you'll get a few correct blocks right in a row, and you can rid yourself of a few lines - and how relieved you feel when that happens? But really, it's just a matter of time before something happens and your box is full again - because the fact of the matter is, the game just gets harder and harder until you lose. You can't WIN tetris.

That's how I feel. My plate is full. And I'm hanging on by the skin of my teeth. And sometimes great things happen and I get false hope that for once, just once, everything is going to be okay. And then I get the wrong piece, and my whole situation falls apart, so I'm back to buying time, praying for the right piece to fall into place just so I can feel that blessed relief one more time. And even when I get a few pieces in order, and I am able to buy a little more time, things aren't ideal, because my plate is still pretty full, it's just a little less full than before. Because the fact of the matter is, the game just gets harder and harder....

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Some pictures of David:
This one cracks me up - he HATES being on his right side - so he sticks his leg out like this:

Here's Holly, one of our RT's

Pat (one of our favorite nurses from the NICU) came to visit us tonight!

Trying to make him laugh:

David and all his friends:

David after his bath today:

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6/12/06

Update for June 12th

Well, Dr. H thinks he can see. Dr. Chavez says if he CAN'T see, then it IS ROP related, which means it would be able to be fixed. *I* think he can see. Dr. Levy says he doesn't know, and any diagnosis that he gets right now will not be accurate since he's still on some sedation. He said that sometimes the meds make their eyes go crazy so we'll have to wait until he's off of the sedation for a week or two before we can get an accurate measure of what he sees. They were going to do a test last night but didn't because, well, David's a toot and wouldn't stay still. Same reason they didn't do his hearing test last time. We have a previously scheduled eye doctor appointment on July 19th, and Dr. Levy said we should just wait until then because nothing's going to change before now and then anyways. So, we'll just have to wait and see.

I honestly think he can see because when you turn on a light or flash the camera in his face he squeezes his eyes shut.

In other news, I'm scheduled to room in next Tuesday (yes, I have to room in again - ugh) so, unless something drastic happens, we'll come home on Wednesday the 21st. :crosses fingers:

David is HUGE now! He's just under 20 lbs (he hit the 20 lb mark but has since lost a little weight due to his tummy finally working again) and is wearing 12mo clothes. He laughs and coos all the time now. He's SO much fun!! I have some great pictures, including him wearing his first baseball hat, I'll post them when I get home tonight.

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Here is one of our (many) favorite PICU nurses, Debbie...I was trying to get a good picture, but David's a stinker sometimes haha

David's new baseball cap!! He was less than amused with me playing dress up with him :) BTW that shirt? It's size TWELVE months omg....

They've been putting David in this swing - he seems to like it - but he's so heavy that it can barely swing him!!!

Compare that to this - which was the same swing, back when he was still in the NICU:

Loving on his Meme!

He's so dramatic sometimes!!!

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6/14/06

I don't know about you....

But I think this kid can see! What do you think?

VIDEO

And here's some more - because I think he's so handsome!

Here's Reed - one of our night nurses:

David in his little Gap outfit that we got from Carla and Donovan

All sprawled out like a man! Daddy would be proud!

And the outfit he was wearing BEFORE the Gap outfit...but he got too hot in this so I had to take it off:

I can't for the life of me remember this girls name, but she's an RT:

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6/15/06

The doctor that saved David's life

This is Dr. Chavez - the doctor who was on duty the night that David coded.

btw WHAT is David looking at? I think he has a thing for Latinas ;)

Here's Dawn, a daytime nurse:

And this is an RT - I don't know her name, but she was one of the ones who helped extubate David

David chillin in a bouncy seat - I can't WAIT to get rid of all these wires!!!

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My friend Cammi put together a DVD slideshow to give the NICU and PICU as thank you gifts! Here's a preview!

Create your own video at One True Media

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6/19/06

Look what David figured out!
David figured out how to bounce himself in his bouncy seat...big deal for us!

VIDEO

These pictures crack me up! David is waaaaaaay too heavy for this bouncer, and it makes the fabric come off the bottom of the chair...and so he sticks his little foot down in the hole:

David in his baseball hat (he still hates them - you can tell by his signature angry straight left leg)

Everythings still a go for us to come home this week - and we've been busy little bees, scrambling around, trying to get everything in order. One of the last steps was to get our carpet cleaned, and being the dork that I am, I took before and after pictures :P

Before:

After:

There's a little difference...I tell myself that it WASN'T a waste of time....maybe they got up some allergens? Anyways, now David can roll around on the floor, guilt free (well, lay on the floor and scream his head off anyways, he still hasn't figured out how to roll ;) )

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6/20/06

Lesson learned

This is kind of a vent - but not towards anyone but myself.

It's so easy to be thankful for everything that you have, and to look around you and only see good things....but sometimes I need to be reminded that not everyone has it as good.
Going in and out of the PICU lately, there's lots of traumas. Near drownings, car wrecks, struck by cars, etc. I find myself walking down the hallway, only concerned about MY child, when there are still other children who are clinging to life, every minute, every hour, every day. And the fact is, even when I leave the hospital, after we come home, and are doing well, there will still be people in that hospital, fighting for just one more day. As much as I'd like to leave this hospital this week and forget about everything, it's important for me to remember it because there are still so many people out there that need prayers.
The reason I've been thinking about all of this is because there was a terrible accident where the mother lost control of her vehicle, and her two children were in the backseat. They were wearing seatbelts, but were still of the age where they should have been in carseats, or at least booster seats. The little girl was four years old. Four. She was in the room next to David, and apart from noticing her because she had lots of family going in and out, I'm ashamed to admit I didn't give her much thought. Well, that little girl passed away today. I never even prayed for her.
Her brother continues to fight for his life just two rooms down, and her mother is fighting upstairs.
I'll never understand why such terrible things happen to people, good or bad, it doesn't matter. Noone should ever have to bury their child. But I learned a very important lesson tonight. Just because everything in your life is going good, that doesn't mean that other people don't need your prayers also. Even someone who you've never met.

Sorry this was so long....I'm really sad about that little girl. If you have time, can you say a prayer for her family?

Just a few more pictures, I couldn't resist sharing:

This one is a picture of a picture...the nurses and RT took this one! They told me that they were planning on giving it to me but they liked it too much, so they were keeping it. HAHA! So, I took a picture of it! It's a great pic:

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6/21/06

We're home!!!

Welcome home, David!!

This afternoon has been extremely busy. When we finally got released from the hospital, we came home and immediately got scared because David was soooooooo hot (it's was VERY hot here today) and he was breathing funny and his lips were dry. Leave it to me, I panicked and thought we were going to have to go back to the hospital. LOL....a cool wash cloth and some formula and he was fine.

But then, BritKare brought us the sat monitor, and now I can (kinda!) see why they don't like us to have them. We noticed that David would sat in 80's if he was hooked up the the oxygen concentrator, but if you hooked him up to the oxygen tank he would sat in the high 90's. So I panicked again, thinking he wasn't keeping his sats up and we were going to end up back at the hospital. I called the ped, and she told me to give it time, something about the tube being longer or blah blah blah - anyways, he was fine.

And then he was due for meds at six pm, but after all the work we (well, I) put into cleaning this weekend, it was still a ROYAL mess as soon as we got all this crap in here, so I couldn't find all his medicines...ugh it was stressful to say the least.

Well, David is finally sleeping...it's great to have him home finally. Thank you all for your thoughts and prayers. I'm gonna go take a nap. YAWN.

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6/22/06

What a night!!!!

Well, in the last twelve hours of my life I've had to call the ped twice and the PICU once....I've had fleeting doubts of whether or not I'm cut out for all of this! But, we made it through the first night home. I'm working on very little sleep...so bear with me :)

Last night was long and stressful. I decided it was too hot in the bedroom for him to sleep in there, so I set up his bouncy seat next to the couch and he slept there and I slept on the couch. It was kind of sweet, though, that I got to fall asleep holding his hand :) But all night long I fought with him about keeping his nasal canula in - which is one reason I'm very thankful for this pulse ox - his o2 sats drop quickly if he pulls it out, and if I'm sleeping there's no way for me to know that it's out unless an alarm goes off.

This morning I had to call the ped because he had another diarreah (which of course I'm terrified of dehydration now, so I would have called anyways) but then the pulse ox was saying that his heartrate was only 65! Which freaked me out...so I called her and she told me that since his oxygen saturation was 93-94 then his heartrate couldn't have possibly been that low, and if it had been that low, he'd of been satting 70s or lower. I know, I know, that machine is gonna get me in trouble.

We have a follow up visit on Monday at 11:30am. It was supposed to be tomorrow, but Javier has to work tomorrow which means I'd have to take him in my car, and I don't have air conditioning in my car. I told you all about how hot he got yesterday on the trip home - and that was in Javier's air conditioned car! I can't even imagine how bad it would have gotten if we took my car. So she said it would be fine if we went Monday instead.

OK so here are the million pictures you knew were coming :)

Here's a video of him getting his button changed - it's pretty gross, btw.

VIDEO

Here's a picture of the board at the hospital where they kept track of his weight. We switched to this room on April 17th (we actually went in on the 7th but they moved us to the "presidential suite" as Javier called it after we found out we were gonna be there forever). Anyways, you can see how much weight he's gained. We started out at 6.8kg, which is 14.96 pounds and ended up 9.3 kg, which is 20.46 pounds :O

David found his thumb!!!

Daddy and David - I thought they looked cute together with their baseball hats on!

Riding in our new carseat!

Playing in our bouncer! You remember the video a couple of days ago when I showed you all how he learned to bounce himself? Well, he gets pissed off in this bouncy because it doesn't bounce like that - so he arches his back and throws himself, thinking it's gonna bounce, and when it doesn't he gets all mad. It's funny. I'll have to get a video of that.

He was sitting there just laughing to himself - he must think he's pretty funny ;)

OH! I almost forgot to tell you all - we had an eye exam yesterday before we left the hospital, and they determined that his ROP has NOT come back, and he can see FINE....he might be a little near sighted, she said, but we can live with that! (which, he'd probably be near sighted anyways, like his mama!) But here you can see that he's found his hand again!

Worn out from playing so hard!

Naked baby!!! Right before bath time!!

David needed a good scrubbing in the worst possible way!! Here's his bath pics:

WOW! Look how big he is! Compared to when we very first came home:

All clean!!

And finally, bed time!

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6/24/06

Boost of confidence!

Since we got home on Wednesday, David has had terrible diarrhea. Every other time he's had diarrhea we've ended up in the hospital for dehydration, so needless to say I was a nervous wreck, watching for every sign known to man of dehydration. I was determined that if he DID get dehydrated I would take him in BEFORE it got so bad he had to be put on a ventilator. So between the home health nurse and I, we've called the ped about fifty gazillion times in the last few days. They instructed us to give him blended bananas and pedialyte, put him on half strength feeds, and hold the mag citrate and flaxeed oil. So we did all that. We even ended up taking a rushed visit to the office on Thursday evening just to ease my mind.

And lo and behold, this morning we had a REAL poop. With texture and everything. :D

I CAN do this!

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6/25/06

Another crazy night!

So a thunderstorm knocked out our electricity last night. We were okay for a while because David has portable oxygen tanks. But then the feeding pump ran out of battery. And the portable tanks are not humidified so it was drying out his nose. Not to mention, he was due for a breathing treatment (hadn't had one since midnight) and his nebulizer is electric. So, I ended up taking David into the hospital. Ugh. I got all his stuff together, and drove to the hospital, took him up to the pediatrics floor, got him hooked up to the machines and everything there, then had to go back downstairs to get his meds and everything....when I had already gotten back upstairs, Javier called me to tell me that they had turned the electricity back on. So I had to all that in reverse to get him home. And now it's ten till eight, and I've gotten about an hour and a half of sleep.

And then on top of all of THAT - David got diarrhea again.

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6/27/06

06-26-06 Update

We had a doctor's appointment today and David is officially on the charts for his actual age on everything except for his head size. Here are the charts - the circled one is his corrected age, and the other dots are his actual age.

Here's his head circumference - still small, even for his corrected age

His height

His weight

And a growth chart from way back in January

This is what childhood should be all about - playing till you drop...

David has figured out how to scoot, scoot, scoot!! I'll put him in the MIDDLE of the blanket, and come back and find this:

Good thing I had my carpets cleaned, eh?

We got permission from the ped to start David on rice cereal! This weekend he had diarrhea, so I was told to mix green bananas with pedialyte and give him 20 ccs of the mixture every three hours. Well, I had some drawn up in a syringe, and I squirted it in his mouth - and he LOVED it!! He ended up taking the whole 20 ccs by mouth! He never once gagged or anything...which tells us that he knows how to swallow, just not how to suck! So when I told the ped that today she told me to start giving him rice cereal throughout the day, a few spoonfuls here and there...so we did for the first time today - and he did really good!! Here are the pictures!

He was still trying to get his hand in his mouth and couldn't figure out why he couldn't haha

Funny face

Whew! That was hard work!!!

I love these feet!!!

Isn't this the saddest face you've ever seen?

And here's a cool picture from the power outage the other night when I was trying to stay awake with NOTHING to do haha

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6/30/06

So close!!!

David is SO close to rolling over! He'll pull his little legs up to his chest and rock to one side, and then if you just gently push his legs, he'll roll! He hasn't figured out how to get his arm out from underneath him yet, and he has NO idea how to get back, but we're working on it!! ECI (early childhood intervention) had told me that if I'd put him on the floor more, he'd start to figure some of this stuff out, but I didn't realize the results would be this fast! Here are some pictures from yesterday:

Playing on the couch, with his favorite toys, the phone and the link a dos...he likes them the best because he can hold onto them with his little hands.