Monday, August 31, 2009

Monday Aug 31

This boy of ours is doing GREAT! He was a little grumpy today but it didn't last long. Honestly I think he was just hungry! After lunch I put him in his bouncer to explore his surroundings, he was as content as could be! It's fun to watch as he discovers new things, like the lamb above his head...or his own nose! I also had the blinds open so he was checking out the outside world. His incision is small, looks good and doesn't seem to be causing him too much discomfort. He can still have Tylenol if he needs it.

He's doing well on the home oxygen too. He's down to .4 on the flow which is about 1/4th of a liter. Pretty good for a guy with one lung! If he keeps this up he'll be on his way out the door! Seriously, Dr. Schwartz mentioned the 'd' word again! Basically he's got all his ducks in a row except eating every meal by mouth. He takes 55 ml (30 is an ounce) every 3 hours and he's been taking 2 by bottle then 1 gavage (by tube). I've noticed that if me, dad, or one of his primaries feed him he takes more in a row. I think we're just more patient if he wants to take a break, for someone who doesn't know him they think he's pooped and put him to bed. For example he's on number 5 now and Danielle (a primary) said he took the whole thing and wanted more! So we'll see how the next few days go.

He's scheduled for another xray in the morning. I'm anxious to see if his lungs are clearing up.

And daddy gets to come up tomorrow! He's all better and super excited! Man, has he missed his boy and I think Kye missed him too! Tonight HE'S in the basement!! ha ha ha The doc recommended one more night of separation and we had already put clean, de-cootie-fied sheets on the bed so, Zeke took one for the team! He'll probably cuddle with the crickets though considering that Chunk won't go in the basement to cuddle with him!!

My faux hawk's filling in people!!!

Saturday, August 29, 2009

Sat Aug29th

This is our 100th post!!!

Exciting, huh?!

It's been an eventful couple of days!

First, I have some splaining to do! A while back, on one of Kye's xrays, the radiologist said he saw what appears to be a hernia. Its very common in preemies boys. His doctors couldn't feel anything so they decided to keep an eye on it. A lot of times the hernia will rectify itself. If you’re not clear on what a hernia is, let me school you. A hernia is actually part of the bowel that gets pulled down into the testie area. For a preemie the bowel sort of follows the testical as it drops into place. Eventually the hole they drop through wants to close and if the bowel doesn't slip back into place it gets pinched, twisted or kinked. This can completely or partially block the natural course of things, if you know what I mean.

The doctors waited because, like I said its possible it’ll go back on it’s own but also because it could simply be a fatty deposit. Only time would tell, so they kept watching and on Thursday they decided there was definitely something there and they needed a better look. They ordered an ultrasound and found that it was indeed a hernia. Now they have to decide if it's worth operating on. The surgeon came by, they sat down on Friday morning and discussed options. I got a call (I was at work) Friday at 11:30am, they decided to operate. The reason for the rush was because they were pretty convinced the opening was closing and it didn’t look like the hernia was going anywhere. He had been uncomfortable the past couple days, desating, and generally not himself and they think this is the reason.

So they wanted to take him by 12:30! Well Zeke's sick and can't come to the hospital so he was freaking out. I had only one client so I took off after that and made it there to sign papers and go down with him. I held him up until the moment they scooted him into the OR. The procedure, they told me is a simple one and takes only about 20 min once they have him prepped. They didn't put him under anesthetic they used something similar to an epidural except they go no where near the spine and all of the dangerous nervous there. Anyway, I kept in contact with poor daddy and Grammy and Grandma came up and waited with me. It took a little longer then I was expecting and just as I was getting a little panicky out came the surgeon. He said the reason it took more time is because his appendix was attached to the bottom of his right testicle...seriously! Your appendix is naturally attached to the bottom of your bowel so that’s how kye got a hernia! Poor kid! Well they took out his appendix that’s one less thing to worry about later!!

He was really pitiful after. They were only giving him Tylenol, which I thought was crazy but, what do I know.

We just tried to make him as comfortable as possible. Later they did decide to give him something a little stronger, just a one time thing though. He finally went to sleep around eight, and Grandma and I went home to eat Zekes homemade pasta. Which, by the way was AWESOME!!

Kye's doing great today! Eating good, smiling, and sating perfectly. Daddy’s feeling better and hoping to get up to see his boy soon.

So that’s been our last few days; a little stressful but it’s over now. Well kinda, since Zeks’s been sick we’re sleeping in different rooms. I’m in the creepy basement..I’d think he was just being mean if it weren’t for not being able to go see Kye!!! He’s got it made in our bedroom, video game set up, dog on the bed with him, and the entire first season of the Sopranos…makes you wonder doesn’t it? If he weren’t so miserable about not seeing Kye I’d think this is a cruel joke! I mean, I got attacked by a cricket the first night down here! OK not ACTUALLY attacked but, it was close. He was planning his course of action, I could see it in his beady little cricket eyes.

I gotta go to sleep!!

Oh yea, he's 6 POUNDS 2.4 OZ!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Friday, August 28, 2009

Thursday Aug 27th

Kye LOVES his book!!!

WELL. His xray wasn't much different and he was NOT chipper and rejuvenated. Still desating and not having energy to finish his bottle. I'm so sad for him. Dr. Schwartz and I were discussing doing the surgery before going home. He seems to think thats the best course of action. I just want him to feel better. He spoke to the pulmonologist who decided to try the home oxygen before making the call one way or the other. They switched him today and so far so good. I had to go to work shortly after the switch so I don't know how he's acting but, he's had no desats at all and the nurse said he finished his bottle! I think they're going to let him ride awhile and see what happens. Sooo again we wait... ho hum

In other news, today is my due date!!! So gestationally it's Kye's birthday!!! ;-) I do wonder what it would have been like if everything went as planned. I know the chances of giving birth ON your due date are slim to none BUT what if...

I'd be about 160, at least. Probably tired and uncomfortable but, cute for a fat girl. I'd be ready to get him out but totally cherishing the little punches and kicks...I'd probably poke back! Zeke would be a mess but I'm sure he'd have everything together, my suitcase packed, gas tank full, and every groan I made he'd ask if it's time. He'd rub my big ole fat feet at night and kiss my belly good night. My water wouldn't break in public, that would be would be discrete and lady like. I'd get to the hospital in plenty of time, get my epidural and leisurely give birth to a 5 pound 15.7 oz baby boy.

YEA RIGHT!! I'd be 185 pounds, sweaty, with my hair slicked back into a tight pony tail. No make-up. Bitching every chance I get about how much this sucks, groaning at the boy's every move. Zeke would be telling me to quit whining and 'man up' as he picks out his own outfit for the big day. We'd have to stop by the store on our way to the hospital, where my water would explode onto the expencive shoes of a beautiful, thin brunette behind us in line. We'd finish paying of course, get into my car, and as soon as we get on the highway the gas light would come on, to which Zeke would mention that his car has plenty of gas. We'd get lost cause we didn't do a 'test drive' and get there just as the baby's head is crowning. Zeke would go running in with my suitcase and forget me in the car. I'd begin my trek to the entrance, he'd realize what happened and rush out with a wheelchair slamming it into my shin cause he couldn't stop in time. We get inside, in a room, the doctor would come in and announce that it's to late for an epidural...three days and four arguments later out comes a 5 pound 15.7 ounce baby boy...
I have no doubt this is how it would have happened! ;-)
Yes he weighs 5lbs 15.7 oz today!!!

Wednesday, August 26, 2009

Tue Aug 25

Well looks like we have a little Vampire on our hands.

Kye’s getting another transfusion. The blood test they did today showed his red count is down again. He’s producing red blood cells just not as fast as he’s using them. Eventually he will. The xray indicated some fluid on both of his lungs and an enlarged heart. All of this is a result of the low blood count. The heart is working over time to push the red blood cells he has which, carry oxygen, throughout his body. The fluid on his lungs is his way of retaining water. So he’s getting some blood to help out. This is a quick, effective fix; he should be his old self tomorrow. He really didn’t seem to be acting too down until this morning. I’m sure it’s because we turned his flow down yesterday. Dr. Schwartz assured me this isn’t a set back, our goals are still in place. Thursday they’ll switch him to low flow (or home oxygen A.K.A. Home-O).I was pretty upset at first. I wasn’t expecting anything other then news of his right lung…better, worse, etc… So you can imagine my surprise when we start talking blood transfusion. Apparently they’re no big deal these days, still sounds scary to me. Needless to say that put a crimp in my morning. Anyway, I’ve come to terms with it and in the grand scheme of things, this really is no big deal. He’s not getting it because he’s sick. Dr. Schwartz said that if his lung wasn’t compromised he wouldn’t have ordered it, his levels weren’t awful.

He’ll get one dose broken up into two, just like last time, they’ll be 12 hours apart. He’ll be finished at 1:30ish Wed. I’m sure he’ll be bright eyed and bushy tailed!

They didn’t get a good look at his lung because of the fluid. They’re giving him a diuretic with the transfusion so by the end of this week they should be able to see something. So we wait...


I wanted to take a minute to thank all of you for your prayers and support. It means the world to us that we have so many people in love with, and rooting for our beautiful son. I love updating this blog, it helps me work through everything we're dealing with. I know I speak for Zeke when I say that we love you all and that no words can express our level of gratitude.

Tuesday, August 25, 2009

Monday Aug 24 or early Tue

After bath!

He’s 5lbs 11.6oz. Dr. Schwartz ordered an xray for tomorrow and a switch to the low flow oxygen. He’s talking discharge people! Don’t get too excited there are a lot of things to do before that happens but this is the first time the ‘D’ words been muttered. There’s no date set for him to come home, we’re just going to begin the necessary steps. I’m pretty excited, I feel like for so long we’ve just been in limbo…kinda chill’n with no goal or focus. I’ve got something to look forward to now, something to root for. Right now we’re rooting for our little guy to do well on the low flow. Next may be taking 100% of his feedings by bottle or sleeping without the snuggly thingy. Who knows, today I’m focused on the oxygen and it feels good to actually see the hurtle we’re trying to get past.

As far as the xray goes, I don’t know what to hope for. Surgery will help him breathe easier sooner. If his lung is clearing up, that’s great. That means there’s a chance it could fix itself…over time…maybe. If it’s the same, that’s great...that means its not getting worse and it also means there’s a chance it could fix itself…it could also mean he’ll come back later and get surgery. If it’s worse, well then we’re in limbo again. They’ll try different things to get it cleared which might work and might not. And there’s probably still a chance it could fix itself. The thing is, for them to justify surgery it has to be considerably worse and causing him trouble, which it doesn’t seem to be based on how he’s doing. He’s stuck on oxygen but not as much as one would with a bad diaphragm. Am I confusing you? Good now you know how I feel.

Momma's boys...

Sunday, August 23, 2009

Sunday Aug 23

"Wait, I'm not ready for my photo yet! Where's that mirror at? I need the Can a baby get a little help around here?"
We had a good weekend. The boys feeling better after his shots and eating like a mad man.
He's now 5lbs 10oz! He's growing out of his clothes already!

There aren't any new orders so far we'll see what they say on Monday.

Here's a little video of kye checking out his monkey Mobile.

Grammy and grandpa Ron came by, oh boy, oh boy, oh boy! "Grandpa Ron said he's gonna buy me a pony!! YIPEEEEE"
...Um pull it back, man, just pull. It. Back.
Lets get him out of the hospital first!

Friday, August 21, 2009

Friday Aug 21

Happy 2 months...oh I have a great idea...lets give him shots now! He got his first round of immunizations today and yesterday. Needless to say he's not feeling great. He's got a temperature and everything. NOT a happy camper, poor kid.
He's up to 5lb 7oz though!

Wednesday, August 19, 2009

Wed Aug 19

Not much to report. The doctors didn't order any changes. He's going to get another xray on Monday, thats about it.

He weighs 5lbs 5.2oz

We had 'play time' this afternoon. He was up and alert after he ate, just looking around and making faces! He's usually out cold after he eats so this was fun! Daddy went up later and he was kinda fussy. We think he's still having issues with reflux. He gets Zantac and Mylanta but, Daddy said sometimes they give him the Mylanta through his tube. He should be getting it by mouth so, we'll have to keep an eye on them.
The nurse also told him that during a previous bottle feeding, he had an episode of desaturation. It was right before she came on duty at 7pm. He had about half the bottle down when he started coughing, his oxygen saturation level went to 49 and his heart rate dipped to 79. What probably happened is that 'it went down the wrong tube', and it just really caught him off guard. Poor baby! So they gave his next couple of feedings through his tube.

Ohh big yawn!

Oh tomorrow is his 2 month birthday!!!!

Tuesday, August 18, 2009

Tue Aug 18

Well the pulmonologist called me!! Yeaaaa. I'm at work so I'm going to keep this short. He said the reason to wait is to give the diaphragm a chance to start working on it's own. It could take a few months to see if it will or not. So, if they do surgery now that would hinder, instead of help his lungs. His xray is better so thats good news, he's eating more and more,and thats also good news...he's still on the same amount of of oxygen, which is a lot for him but not a lot for a baby who's lung is compromised. We're just watching him for now.
He was a smiley boy today and he made Momma a nice big poo!!

Monday Aug 17

Got my hair did, my new fit on, I'm feeling snazzy and ready for a big dinner...hhhmmm, all dressed up and no place to go!!! But boy don't I look ah-frickn-dorable!!! I think this is the first and last time he'll be able to wear this outfit, cool huh?!

Here he is checking out his jungle mobile. It's really awesome to watch him hit these mile stones, the nurses are amazed at how alert and focused he is!

I just called to check on him and he's 5lbs 3oz!!! Just look at his little meaty legs! Ohhh, who knew socks could be so darn cute!

We're still waiting to talk to the pulmonologist, apparently he's a very important and busy man...We called his office today and tried to set a time but, we didn't get very far. His Secretary basically said we'll have to 'catch' him doing rounds. I'm getting impatient to be quiet honest. If I don't see him tomorrow or at least nail down a time I may have to let the 'Arcobasso' out for a bit! Nobody wants that ;-)

His xray was better today, both of his lungs look like they've improved, which is a nice surprise. I was expecting the right one to remain the same. He's still holding steady on about 30% oxygen at 3 to 4 liters of flow and he's taking bottles like he's not going to get another!

Saturday, August 15, 2009

Sat Aug15

"Great Grandma Knight got to hold me...My collection of cuddles(phaze 1) is almost know who you are and I'm waiting!" ;-) He's been sitting in his bouncer allot lately!
Nurse Mary suggested it and I'm so glad she did. He seems to really enjoy the vibration helps 'move things along' after he eats! When Daddy came up the other night he said he smelled this horrible smell out in the hall, turns out it was his son! He made a humongous poo, special just for dad! It was so bad the nurses were talking about it...the NEXT day!
He is his fathers son, it's official!

I heart my bouncer

Well, unfortunately Dr. Chao’s opinion was wrong. The pulmonologist said that for Kye’s lung to grow properly he’ll need the surgery. Your lungs grow by expanding and if his can’t expand well… it doesn't grow. So the boy will go under the knife. We just don’t know when. It may be before he comes home or it could be ‘before his first birthday’. It’s a waiting game, just keeping an eye on things and reassess as needed. I think the main reason to wait would be his size, I see no other reason for it really. If size isn’t an issue, I think getting it out of the way soon so his lungs can start healing a.s.a.p. makes good sense BUT, I’m not a doctor. I’m going to make an appointment to talk to the pulmonologist next week to get more specific information.

He’s probably going to come home on oxygen, it’s not set in stone but a strong possibility. So we need to get him off of the high humidity he’s on and on to the no-flow one. Right now he’s on 4 liters of flow at 28% oxygen. Dr. Chao has ordered a drop in liter flow and increase in oxygen until he's off and as long as he can tolerate it of course. If he doesn't do well with it they’ll probably do the surgery before he goes home.

On all other accounts he's doing fabulous! He's 4lbs 15oz and eating more then 3 bottles a day. We can give him a bottle for as many feedings as he can take, as long as it doesn't wear him out too much. Now that he's had one, theres no turning back! He sure knows when it's time to eat! I'm willing to bet he'll be 5lbs on or before Monday!

All of this is pretty crappy and very scary for us. It’s hard to look into his big eyes and believe there's a surgery in his future. He looks so perfect and happy. It breaks my heart to imagine what he’s going to go through. I just want to take it all away for him. In the end he’ll be a normal healthy kid running around getting dirt on everything; in the mean time it’s just one foot in front of the other. I can’t let my head get the best of me.

Friday, August 14, 2009

Thur Aug 14/15th

So the CAT scan was good! Dr. Chao wanted to talk to the pulmonologist before saying anything definitive but, I asked for his ‘opinion’ anyway. He said he doesn't think Kye will need any surgery at all! Yeaaaa. I’ll know more details tomorrow…well today. He just said that the left diaphragm and his chest muscles will be able to compensate for the paralyzed diaphragm. It’s too soon to tell if it’s going to fix itself but, either way he’ll be fine. Wish I had more info on this but that’s it so far.

He’s 4lb 13.7oz! My BIG BOY!!!

Thursday, August 13, 2009

Wed Aug 12..actually 13th

The CAT scan went well; they had to put an IV in for it though. He wasn’t thrilled with that at all! They told me it was because they were doing a contrast CAT scan so I guess it was used to inject a ‘dye’ of some kind. I’m not real clear on it and I had to take off for work so I wasn’t able to get my questions answered. He’s in good hands though so we’ll just have to wait and see what the results are, we should hear something today. I’m told they’re not looking for anything specific, just a better look at the diaphragm.

Anyway, he’s growing! He’s up to 4lb 12.5oz! Can you believe it? He’s almost doubled in size! He’s also taking both of his bottles like a big boy!

Well, if I get a chance I’ll run upstairs and write something before I head off to work but, don’t get worried if you don’t hear from me. Sometimes they do rounds late and if that’s the case I won’t even know anything before I have to leave. They didn’t do his CAT scan till 4:30pm!

Tuesday, August 11, 2009

Monday aug 10

Today was a great day! His xray looked good, his left side’s better. Oh and his left lung was never collapsed, the nurse was mistaken, there was a small amount of fluid from lying on that side to much. So that’s not as bad as I thought. His right lung is a little better but the diaphragm is still in the same place. Dr. Chao has ordered a CAT scan for later this week so they’ll have a 3D image of his chest. I don’t know exactly what they hope to find, maybe an answer to why this happened or even better maybe they’ll see that it’ll fix itself! He said they should know if it’s going to work itself out by the end of this month. This means Kye will not be going home on or around his due date. We’re not happy about it but, what ever he needs to do is ok with us. He’s maintaining his temperature just fine. We’ve got to work on his breathing…obviously…and his eating(on his own), which is going well but, for his age should be better but, it isn't because of his breathing, which is….well you get it, it’s a circle, a damn vicious circle! It’ll work out though, I have no doubts!

Anyway, I got to give him a bath all by myself! Yeaaaa..uh.. what? I mean without back up? To the nurse I acted completely collected, no prob, I got this…. inside I freaked. So with a little fear in my gut I got the water ready. I tested it on my wrist, then with my hand, then my elbow (as recommended by great grandma) then the temp gadget stuck to the side of the ‘tub’ that is really a large Tupperware thingy you’d put a ton of cookies in. I decided the water was good so I stripped the boy down and dipped him in. So far so good, I got my soap, my shampoo, about 35 wash cloths, a blanket, his binky, the nurse call button, and a fresh diaper waiting. With binky in mouth (his), left hand holding baby and a soapy wash cloth in the right I began at the bottom…literally, when what do I see??? My little man decides to pee. So now Im looking at this slippery, wiggly, pee ridden baby sucking on his binky looking at me, “What cha gonna do now, Ma?” And I’m contemplating my options, I could swish the water around and ignore it, I’m pretty sure this will happen again and again and again or…but the sink is so far away…at about this time come the bubbles. I lift a leg (his) expecting to be horrified and all I see are harmless air bubbles rising to the top, whewww….that would have been…oh and there it is, green and yellow swooshes exploding against the end of the tub and swirling up toward my hand. EEEWWWWW so out comes the slippery, wiggly, binkyless, crying baby and where else can I put him but right up against my chest I have no other choice, poop/pee and all. So in the end out came a nice clean baby and a wet mommy who now knows to bring the bath tub closer to the sink.

Oh and he weighs 4lb 9.5oz ;-)

Monday, August 10, 2009

Sunday Aug 9

He’s 4lb 7.5oz! They kicked his food up to 40ml and he took about 25 today by bottle. Tomorrow we get to feed him twice with the bottle!

He’s on 4liters of flow at 28%oxygen.they started his breathing treatment yesterday and WOW does he hate that!. The medicine is inhaled using CPAP, continuous positive airway pressure. It’s hard to describe but, the face mask has to seal tight onto his face in order for it to work properly. The mask is a little to big for his little mug; it almost completely covers his eyes. They have to use a fair amount of pressure to seal it so, as you can imagine it’s not the most pleasant thing he’s experienced. The first time I seen it done, I had to stop myself from asking them to quit. It’s not hurting him but, you couldn’t tell it from the way he cried. I don’t think I’ve ever seen that shade of purple. My poor baby. The next time I was there for it I held him, he handled it better or maybe he’s getting used to it, I don’t know. He gets it ever six hours. They’re suppose to do an xray in the morning, we’ll see what’s going on then.

Besides all of the clinical crap he’s a really happy boy. He’s on the full fortifier plus protein (we must’a fatten you up!) and tolerating them just fine. He didn’t poo as often as he usually does today but when he did it was impressive!:-) Nothing getting clogged here!

Grumpy face!!

Saturday, August 8, 2009

Friday Aug 7th

He’s 4lb 5.2oz and he’s doing great with the bottle feedings! He’ll be 5lbs before we know it!! Today he took almost the entire bottle, which is 35ml. I think he got 30ml’s in before falling asleep! Yesterday he took the whole thing! I think we’re going to try feeding him a bottle two times a day next week!

His oxygen is at 30% with 3 liters of flow. It’s more then he was on before but, still not a lot according to the staff here. They've turned the flow up to see if the extra pressure will help inflate the damaged areas in his lungs. The xray they did yesterday showed a small spot on his LEFT lung. They think it’s a result of lying on that side so much; which they did to relieve pressure on his right side. They changed the order to rotate him to all sides except his right. He’ll get another xray on Monday and we’ll see where we’re at. Besides that he’s awesome! We've been slowly decorating his room, here is a picture of his crib with all his fun stuff. One of his favorite nurses, Andrea, made the sign in back for him. Isn't it sweet!

He loves the monkey mobile!

He just stares…

Thursday, August 6, 2009

Thur Aug 6th

Kye seems to be handling the thumping treatment really well! I was holding him yesterday while they did it; he was all smiles and actually fussed a little when the guy stopped! Crazy little guy! Dr. Dryer added a breathing treatment to the regimen too. It’s just a nebulizer, meant to add a little pressure to his lung in hopes of filling some of the balloons back up and prevent more collapse. He’s in really good spirits; I haven’t seen him smile this much since before he got sick. I think he’s completely back to his old self…as much as he can considering his ‘old self’ is all around pretty new!

I spoke to Dr. Dryer a little more yesterday; I’m not all that alarmed with what’s going on with Kye. I mean I’m concerned and I wish it didn’t happen but, it’s not life changing or life threatening…just a ugly bump but, just a bump non the less. He said that normally when a baby has this he’s been on a ventilator and can’t get off of it. Dr. Dryer even said Kye’s way past that and he doesn’t see him going back to it. He’s just not acting like a kid having trouble. He did tell me this isn’t something they see everyday so, it’s not as common as I originally thought. That’s a little unnerving only because they don’t have a plan to fix it that’s tried and true. All in all, it’s not life threatening, it won’t hinder his growth or the normalcy of his growing up; he’s not going to be the kid wearing oxygen in gym class.

AND so far our goal is to have him home this month. It’s still possible! Right now I’m looking for pediatricians so Dr. Dryer can look them over and recommend one for me, if anyone has any suggestions that would be helpful. Right now I’m looking into Doctors that have a specialty in pulmonology (respiratory). I’m just looking online though so…

Wednesday, August 5, 2009

Tuesday, August 4, 2009

Tuesday Aug 4

Kye’s test revealed that the diaphragm on his right side isn’t working and that his lung is partially collapsed. Pretty crappy huh? The collapse is a direct result of the diaphragm and isn’t as bad as it sounds. It doesn’t mean his lung is deflated or even partially deflated, just that the little balloons inside are….well, about a third of them anyway. See, the diaphragm helps pull air into your lungs and the balloons are inflated because of the air flowing in and out. Air is flowing in his lung just not as well as it would if the diaphragm were doing its job. So over time the little balloons loose their oomph and deflate. They didn’t see it before because he’d have to be exhaling at the exact time the xray was taken and the area that’s collapsed just shows up as a dense spot. There’s also not a real good explanation for the how it happened, usually this kind of issue comes up after a surgery, but they’re looking into it. It could be that he was born with it and in that case, it’s most likely fixable. If it were connected to something else it would be another story but, it isn’t, this is it. The doctors are hoping that it’ll fix itself over time. It’s not unheard of and this is not a unique problem. Other babies have had this happen and it’s worked itself out. It’s a slow process though, in some cases it’s taken six months. If it doesn’t work out there’s a surgery they can do that’s pretty simple, it takes only few minutes to tack the diaphragm into place and that’s it. The lung will come back on its own. So it’s a waiting game. In the mean time we have to keep him off of his right side to prevent everything in there from crowding the lung and causing more damage. We’ll also be ‘thumping’ on his chest to help break up any fluid that may form in his lung; this is a precaution to prevent pneumonia. So that’s where we’re at today, another bump in the road. It’s a fixable bump though; we just have to get to the other side of it.

On a lighter note, he’s a happy boy! Smiling and cooing all over the place! Oh and he took his bottle like a champ! He’ll be a big boy before we know it! We didn’t do a weight today because he had a pretty exhausting day, they did another eye test and he’s right where he should be. The doctor said he won’t need to see him again.

Monday, August 3, 2009

Monday Aug 3

He’s 3lb 15.5oz, almost there!

They put him on a different kind of fortifier. The original, made by Similac, has more calories. The new one, Enfamil, has more fat and MAY be easier on his stomach, lets hope so. So everyone, think fat thoughts for Kye!!!

The test they did today didn’t show as much as they wanted it to, so tomorrow they’ll do another test. It’s an xray that will take a few ‘pictures’ in quick succession to see what kind of movement the diaphragm is making. Again, it’s not causing any issues and unless it does they’ll leave it alone.

They’re going to change his oxygen tomorrow too; it’s a different kind of machine, a step toward getting off of it. It’ll be the same nose piece but, the flow of oxygen will be .5 liters instead of 2 liters.

I got to give him his bottle today!

I had to tell Kye I’m going back to work tomorrow, he took it pretty well. I’m a little stressed but, he’s good. I’ve got a great job and can make my own hours so; it’s not as bad as it could be. I miss him already though. Don’t get me wrong I want to work, I love what I do but, to leave him all alone makes my heart hurt. I’ve been thinking about this day for awhile and on one of my more emotional days I wrote this…

My mom always told me I’d never understand the love a mother has for her child until I have one…I think I get it. Anyway here it is…


Feels like falling in love all over again. I can't wait to see him even if I just stepped away for a minute. When I am away from him I want to be with him so badly my body aches. My heart crumbles when he cries and I'd do anything to sooth him. I can simply stare at him for hours and be completely content. When he smiles my heart melts and I believe no other smile is as perfect. When I touch him and he calms, my heart leaps into my throat. This is second only to what I feel watching my hubby turn to putty at the sight if his son. I can't even explain how happy and full of love I feel. My eyes well up because I know these two boys are mine. They love me, I love them, and were all in this together.

Sunday, August 2, 2009

Sunday Aug 2nd

Look at how he's grown!!!

Sunday Aug 2

He’s doing great, still 3lbs 14 oz. The doctor put him on 2 hour feedings, which will go up in volume each hour, till he hits 25ml. He’s doing wonderful with bottle feeding too! The nurse was pretty impressed with him today…atta boy!!

He’s still on oxygen, which is really no big deal at his age.

He seems to be happier all around, the Zantac must be doing it’s job!

Had another visitor this weekend! Grandma Patty all the way from Colorado!

Tomorrow they’ll do an ultra sound to look at his abdomen/chest area. They were going to do an xray but, Dr. Chao spoke to the radiologist who suggested the ultra sound may be better to see what he’s looking for. I spoke to the doctor a little more about this and he said it’s nothing to worry about. The results will be more or less an explanation then anything. He explained it like this…your diaphragm is like a shelf between your abdomen and lungs, when you inhale it moves down to allow air intake and when you exhale it moves up. On Kye’s right side his diaphragm is curved upward, at least that’s what they think. The ‘spot on his lung’ or ‘fluid’ is actually part of his diaphragm. It’s completely harmless where it’s at. So this test will just explain the ‘spot’. It should correct itself over time.