Sunday, August 31, 2008

Do I Need to Intervene?

Far be it from me to influence the vote going on here, but seven of you truly feel that you can't see any of me in little Jack? Crazy people, come on!

There isn't much to report. More of the same. They both did really well today. Jack was good with his dings and Riley kept up her wild ways. She grabbed on my neck really hard today while I was holding her and it hurt really bad. I'm not kidding either. They both have some ongoing digestion issues, but I'm not going to get too worked up about that yet. Besides, we have enough to worry about. Unfortunately, due to the digestion issues we have stopped bottle feeding Riley for the moment. This sucks because bottle feeding Riley has been our beacon of hope and her eventual ticket out the door. Safe to say we just want them home. Whenever we feel really down about everything we only feel better by going back to the hospital and holding them. There are still a lot of unknowns but we are doing our best to keep positive. Again, we just want them home and then we will deal with any other issues that may persist. One step at a time.

More Jack Photos

You can find more photos here.


Let it Be



Friday, August 29, 2008

Non Baby Post

The other day I heard eruption>you really got me on the radio and it reminded me of this great movie I used to watch all the time growing up, Over the Edge. So I found the trailer on youtube, and I think the whole movie is on there too. I wonder if any of you ever watched this one. IMDB tells me it was the main inspiration behind the smells like teen spirit video. It is such a great film. And the film ends with a song that Rachael sings all the time, Ooh Child by the Five Stairsteps (though I don't think it was their version in the movie if my memory is correct). Remember, Ooh Child is played during the scene when Carl is getting shipped of to kid-jail. So good.

Over the Edge


Ooh Child

How Many More Times...

As promised, here are some photos/videos of my main dudes. They both did good tonight. Riley had a really high residual pulled from her though, which is troubling. We don't really need any more problems kids.

While walking to the car tonight I found this song playing through my head. Yes, how many more times. I wish we knew.

Also, I'm going to stop labeling these photos/videos soon. If you don't know what kid you are looking at by now, then you better check yourself yo.

Jack

Riley

Riley


Riley
video

Jack
video

Zep

Residuals

We are now obsessed with residuals. I guess obsession is a little strong, but it has become a new focus of ours. Today there residuals were okay. Jack had 1 cc and Riley had 8. Both good. If they don't improve over the next few days in this area the doctor is going to put them back in their little cages. Although they have no problem regulating their temperature putting them back in their cage would help them save calories. So we will see if they can add some weight over the next few days. From a purely psychological point of view, it will be difficult to see them go backwards.

Jack was good today. Riley was also good. I think Jack had a one dinger while we were there, self corrected. All this NICU language I know. I have thought about adding a glossary to this blog.

Your votes are in America. Riley is officially a perfect mix and Cornett all the time. I have added the same poll for Jack now. So get out the vote.

I'm not going to get political on this blog, but Palin as the VP sure has made the upcoming race more interesting.

Also, I promise to take some pictures today and put them up tonight.

The Verve, Bittersweet Symphony

All You Need is Love

The censors have gotten to me people (previous post removed)

Riley has 21 votes thus far and it looks like it will be a tie between Perfect Mix and Cornett. I even got a few votes. I guess I can still keep calling her Briana, at least under my breath. Don't worry Kraft voters, Jack will be next. Let's mobilize.

So Jack had a good night. And by good I mean he digested his food and had only self correcting dips. Riley, on the other hand, is still the drama queen of the NICU and now she is having the high residuals (not digesting food correctly). If it isn't one thing it is another with these two. Riley gets super mad when left alone but always settles down when you hold her. Kind of makes me depressed.

So, yeah, I have nothing further to say at the moment.

All you need is love (Riley)

Thursday, August 28, 2008

Distress

Dead Leaves and the Dirty Ground


Jack was back to his dings today. He settled down though after a deep suctioning. It is frustrating that some nurses don't understand that they need to really go down his throat sometimes to get the mucus. And somehow we still get a nurse once in a while that we don't know. Like today, the nurse needed to check our wristbands (this is done to verify you are the parents). Lady, I haven't had my wristband for weeks. I began to tell her, why don't you ask anyone here, we are their parents. Oh yeah, I have nothing better to do but chill out with some random sick babies. That really makes my day. Just like hanging out in your dumb f*&^ing NICU really makes my day. Stupid. The nurse was nice though, and is likely taking great care of our babies as I write this.

Seeing other people get bad news really sucks too, there was more of that today. Lame.

Another issue that Jack has had lately is an inability to digest his food properly. This has been an issue lately that will hopefully not signify anything too troublesome. Riley has had this problem a little bit, but like all things in life for these two, she has it to a smaller degree.

Riley took 25 cc today. That was good. This song is good too.

On a total side note, people that think the White Stripes would be a better band without Meg are really missing the point. Do you think the Beatles would be a better band with John Bonham as their drummer? No, right? Simplicity is why it works. I guess I have never understood the Meg haters out there.

White Stripes

Wednesday, August 27, 2008

Born Under Punches

Jack remained good today. He had no beeps both times we were there. We will take the good days when we can get them. Sometimes they are few and far between. Riley did nothing new, bottle fed two times, but still only about 10-15 cc each time. Long way to go. Riley has developed a lot of head control. She can hold her head upright without much support, if any, and moves her head around a lot. Exciting, I know.

I was listening to Remain in Light tonight while holding Riley and realized Born Under Punches is kind of like a theme song for them. Not really, but you catch my drift? whatever that means...

"Take a look at these hands! Take a look at these hands! All I want, is to breathe. I'm too thin."

"Never seen anything like that before..."

Born Under Punches

Nothing New

Jack and Riley mainly slept away the day. Jack has calmed down a bit with his breathing issues. They both seem to have less secretions, but who knows. Really an uneventful day for the both of them. We have to keep reminding them that the goal is to actually leave the hospital. We really have started to set up shop there. We have all kinds of books, site cards, mobiles, clothes etc...

Jack (yesterday)
video

Dennis Wilson, River Song

Tuesday, August 26, 2008

She's a Super Freak!

Riley is crazy. Every time you put her back to "bed" she flips out. She has been voted the most dramatic member of the NICU. Apparently the nurses joked that they were going to call in a code violet, which apparently has something to do with a patient getting unruly. She is absolutely nuts sometimes.

video

Long Way Home

Talked to the doctor today. She thinks that based on the levels of antibodies in Jack's blood that it will clear out in 8 weeks from now. That is based on some formula that I don't know anything about. Obviously Riley will be all clear sooner than that. She will likely be free from the antibodies in about 2 weeks or so if the doctor's estimates are correct. So Jack has a long way to go, no surprises there, and probably won't be able to leave the NICU for a few more months. If he does get better while the antibodies are still in his blood, then of course he can come home sooner. Although it seems like a long time, we are just very grateful that they have come this far and we know what they are dealing with. We are also very grateful that what they have is transient. We have to keep these things in perspective.

Monday, August 25, 2008

Jack Video

Jack
video

Jack II
video

Remember when this band was good?

Don't Stop Believing

We got the antibodies test back today from the Mayo Clinic. Apparently Jack and Riley aren't making their own MG related antibodies, as we expected. Also, Jack has more of the antibodies in his blood. He has about 3.5 times more than Riley, which makes sense since he has more severe symptoms. So the good news is that we know what is wrong with them, the bad news is that they were given a very healthy dose of the antibodies so they are more impacted than the average neonatal MG case. Also, I expect it will take a little longer for the antibodies to clear out and for them to get better considering the high levels of antibodies. Quite honestly we are just VERY fortunate that they weren't born with even higher levels, because this blog would likely not exist. So hopefully no long term issues associated with their rough start, and someday they will get out of that place.

One other part about the NICU that sucks is overhearing parents get bad news about their kids. We heard a little bit of that today. Sucks.

Riley barfed on me today. Highlight.

So, I love Journey as much as the next guy. So what the hell... I couldn't find the rollerskating scene from Monster in English, so this one will have to do. Mucho Gusto!

Monster


Sopranos


Concert

Sunday, August 24, 2008

Wake Up

Jack remained decent today. As far as I know, this being 11:15 p.m., he is still doing well. I'm a little on pins and needles with him lately. I just want the antibodies out of his system. That is saying it mildly. Very mildly.

The NICU is essentially a babysitter for Riley. I don't pay her much mind at the moment. Sorry little girl, it's true.

Arcade Fire, Wake Up

Outside Now

Jack (maybe someday buddy, but not yet)

Jack is a little better today. They increased the pressure on his nasal cannula which seems to be helping a little. He only had one "spell" while we were there and apparently that was his first in about 6 hours. It wasn't that bad of a spell either. We don't really know what to think about last night's episode, other than we hope he gets better. He has had quite a bumpy first month of his life. I can't say that I'm not getting a little bitter about it all.

There are three videos I would like to post here, count them, three. The first is from one of my favorite movies (everything is a favorite of mine) and this scene completely summarizes how we have felt this past month. I have found myself repeatedly saying to myself "our pet's heads are falling off!"


The other video is from none other but Mr. Frank Zappa (R.I.P) The quality sucks, which is lame, but the song is great, even if it's subject matter may offend the weaker stomachs in the bunch. I like to think this song plays through their little heads.

Frank Zappa, Outside Now


Finally, a few weeks ago I posted about how some songs are used for totally inappropriate circumstances. I mentioned Born in the USA as a perfect example of this phenomenon. Well, as it turns out I just read this song was blasted after the "redeem team" won the gold. What a bunch of idiots. I mean really...I wouldn't expect any different though. We just won the Gold! Born in the USA time! Crank it!

Born in the U.S.A

Breathe

Jack had a really bad night last night. They had to "bag" him for thirty-seconds. This is really shitty news for us, because he has only had one "spell" like that in the past and it was a few days after he was born. As of right now he isn't on the CPAP, don't know why, and they have kept him on the nasal cannula. The other bad thing is that his big nosedive wasn't related to secretions. What a bummer. I hope they put him on CPAP today so he can get a rest. And to think that just a few days ago they had him on nothing at all. He really isn't ready for that. Rachael and I are a little freaked out. Hope today will be better for him.

Saturday, August 23, 2008

I can tell that we are going to be friends...





Rachael and I plus Grandma and Grandpa Cornett visited the little ones today. They did fairly well. Riley took 20 cc in the morning and 25 cc later in the day. That is a good sign. Keep up the good work little girl. Jack still had his issues, but what the hell, we had a good time anyways.

The highlight of the day was getting the two of them in the same bed for a short while. This is the first time they have ever met outside of Rachael. It was pretty cool to finally have them side by side. They make quite a pair.

video

We are going to be friends, White Stripes

It Came From Detroit...

So, I have started my push to convince Rachael to go up to Detroit with me for the night. Not tonight, that would be silly, the Browns are playing. Though, now that I think about it, they are playing IN Detroit. Regardless, sometime soon. She is thinking about it. If I can get these kids to have a really good morning, I might just take a left out of the Hospital parking lot and make the executive decision. A good night of Detroit is all we need to blow off some steam. Oh the bright lights of Detroit casinos!

Dirtbombs, Underdog


And I still want to see this movie.

It Came From Detroit

Friday, August 22, 2008

Sugarcubes

How did I forget this one? I used to play this song a lot during my "nighthawk" days. Maybe I'm giving too much credit to the whole "birthday" gag...but what the hell. I'm a sucker for Bjork.

Sugarcubes, Birthday

Footloose


Even a relatively difficult day like today has a silver lining sometimes. Rachael and I went into the night shift feeling a little gloom and put out. Maybe the one month "birthday" is a tough milestone to swallow. And to think that tomorrow is their due date. That is going to be another bummer. Anyhow, back to the title of the moment, Jack was supposed to get his cast changed today for his "club foot." Well, it turns out that the doc was so surprised and pleased with Jack's progress that he decided not to even re-cast him. Apparently he may not have a club foot after all. Turns out it could have been just like his fingers but in a different form. The doctor couldn't believe how loose jack's foot/ankle was and thinks it will correct itself now. Of course this, like anything, is subject to change, but Jack may go without 4 plus years of bracing for his foot. Good job Jack. Now if you could only fix the minor things in life like breathing and swallowing we would be kicking ass.

Footloose

I'm So Bored with the NICU...

Riley (post burp/pooh, post something...)

Today sucked. Not for any real reason, it just did. I'm just getting really tired of the NICU. Frustrated. That place sucks. Jack continues to have his issues. Riley spit up her milk today, as did Jack. They both got an x-ray of their lungs. They came back good, no aspiration. That's good news. Nothing real positive to say from today, so I will just leave it alone. The photo above of Riley kind of sums it up.

The Clash, I'm So Bored with the U.S.A.

You Say It's Your Birthday...

Jack and Riley are one month old today. I guess you consider these "special days" "birthdays" this early in the game. Little month-days. I think it is kind of lame, but what do I know.

In other "news," check out the new poll (right below the Jack and Riley banner) I added asking you to settle a long running debate between Rachael and I. Who does Riley resemble? We all have different theories on this one, but sharing them would influence your vote.

Here are some good Riley photos from the archive to help you decide.

Riley 8/20/08

Riley 8/20/08

More Riley 8/20/08


Sixteen Candles Scene

I Walked with a Zombie...

I like to post a lot of randomness. Here is a great one from Roky Erickson (of 13th Floor Elevators fame) that I really like. Ohhhh the randomness...there is no real video, but it is a way to post the song. Quick and easy. I guess there is a documentary out there on Roky and all of the electro-shock therapy he went through etc...

On another totally random side note, I spent the better part of my night watching Thrashin (a personal favorite from way back). Damn those Daggers!

I walked with a zombie


Thrashin

Thursday, August 21, 2008

Dress You Up

Jack had a decent day today. Had some spells, but nothing major. Still on the nasal cannula. On the lowest pressure. He is back to the bullous feed which is good. On his first try he puked it all up through his nose. He kept it down on his subsequent attempts. Not much else to say about him. Riley continued bottle feeding today. We feed her each time by the bottle. She averages 15-20 an attempt. This sounds small, but the fact that she is doing it consistently and fairly well, is a major step forward for her. All she needs to do now is build up her stamina. All of this fits in with the whole neonatal mg diagnosis. It seems, that if this is for sure what it is, that it is just about out of her system. The other highlight of the day was dressing up the babies in new clothes. Although the clothes are a little big, it really helps us to see them in different clothes. It breaks up the monotony.

Jack

Jack

Riley (post feed and a little weary)
video

Dress You Up

Wednesday, August 20, 2008

I'm Waiting For My Man...

Jack

Riley (Young Empress)

Riley

Riley

I thought about calling this entry "good times bad times," but it dawned on me that I would rather name it after a song where the "hero" wants to score heroin. And you didn't think I could mesh junkie lifestyle with 'baby trying to break out of NICU prison?' Well, I guess I can. Maybe. The point being here, I'm waiting for my man Jack to kick ass and get the hell out of dodge. Come on little dude, time is wasting. Too many pretty nurses at the NICU?

As my last post confirmed, Jack had a brief stint off the cannula. Well, that idea crashed. When we came to visit him tonight he was back on his nose candy. This little dude is hooked. He was crashing and burning all night. It really sucked. The good news though is that Rachael and I just checked in with Nurse Sheila and he was doing good. No dings.

Riley, on the other hand, is getting ready for her jailbreak. I can finally see the end of the tunnel for Miss Thang. I give her about two more weeks. I think she is making the push to come home. It will suck bringing one home and stranding another, but it is the most likely scenario we are facing at the moment.

Here are some photos from tonight's visit (above). As you can see, they have their formal wear on for Grandpa Kraft's visit. It was nice to see them in different clothes. Nice actually isn't the word. Maybe I won't even assign a word for an emotion I can't describe. That will be best.

Velvet Underground, I'm waiting for my man (get better soon little man)

30 cc

Riley took 30 cc with Rachael Today. Jack is off nasal cannula. That is the update from Rachael.

The Boss

Rachael and I (After-prom 95/96?)


Rachael is on another solo mission today. I'm waiting for my Dad to get here, hopefully we will get some more work done on the house for Jack and Riley's eventual arrival. I love this song. I don't know why or how, it isn't exactly our life story (minus the "met in highschool" part). Rachael and I got into a little disagreement over this one the other day. She thought it was welding coat, and for a second I believed her. But alas, sorry Rachael, it is wedding coat. These things are very important in this household. Knowledge of lyrics.

The River

Tuesday, August 19, 2008

Night Moves...

Rachael and I went in tonight. Shocker. Jack was about the same from yesterday. He gets really mad when he can't have his binky in his mouth. It is the only thing he loves in life. His new thing is clearing his secretions through his nose. I don't know if this is progress or not. The nurse said earlier in the day Riley was demanding food so she bottle fed her real quick and she took down 10 cc like a rocket. The nurse didn't have time to continue feeding her by bottle, especially since the doctor wants her fed only once a day by bottle, but I consider it good news. With that in mind, Riley took a nosedive today while we were there. I think she was choking and it took us a while to get her oxygen back up. I don't think she really changed color, but for Riley it was quite the episode. We left her in perfect working condition, so no worries.

Boston Spaceships

Forget baby news for a while and let me step way out of the realm of Jack and Riley for a sec. They're a big bore lately anyways. Kidding. I have set a new goal. Though I missed Radiohead, I will not miss any chance to see Pollard. I guess the bet I have going in my own head is whether or not I will have two kids at home by the date of this concert. I'm betting on yes. Maybe this will be a good babysitter night, as I know Rachael will want to go.

2008 - 09/26 - Robert Pollard's BOSTON SPACESHIPS / The High Strung / tba - 9pm $15
Boston Spaceships is the most recent project by the arguably most prolific rock songwriter on the planet, Robert Pollard. Often considered the pioneer of lo-fi, Pollard spent the most of his career fronting and being the c.e.o. of Guided By Voices (No wonder his new label is called, GBV INC.). His newly formed band is a trio with Chris Slusarenko ( Who plays with Pollard in The Takeovers) and John Moen who is currently also in Decemberists and has played for and with Stephen Malkmus & The Jicks and Elliot Smith. The band recently has released a new album which showcases even more songs by Pollard that only further his epic indie-rock 'n' roll legacy.

Boston Spaceships, Winston's Atomic Bird

No Show (4 weeks)



Brownies, where were you last night? Pathetic. Absolutely pathetic. You didn't miss much with this one Jack.

I didn't go today. Trying to get some other things accomplished. Just talked to Rachael though, and Riley broke her world record drinking in 20 cc. The doctor wants us to bottle feed her only once a day. I guess this makes sense because it likely reduces the risk of aspiration. Jack had a few minor self correcting dips, but they reduced him down to the lowest pressure possible on his nasal cannula. That's all I know.

I will go in tonight. Maybe I will reduce my visits down to one a day in order to get some other things accomplished.

Pavement, Range Life

Picassa



Just passing time with Picassa editing tools. Now if I could only edit that nasal cannula out of the photo...

Monday, August 18, 2008

Photos

Jack

Jack

Riley

Riley

It's Like I'm Walking on Sunshine...

This video is really messed up. For any of you intervention fans, you can find the whole episode on youtube.

Just Because...

I didn't take any new photos today. Let's be honest, they all look the same anyways. No new orders for Riley. They reduced the pressure on Jack's nasal cannula. Now the nasal cannula has barely any pressure at all and it is room air anyways. Hopefully it is a sign that he will come off it entirely soon. Jack is going back onto the bolus feed, likely tomorrow. Right now he is on a slow feed that constantly puts food into his stomach at a very slow rate. This prevents him from spitting up like he does sometimes with the bolus feed. Also, it looks like we are going to start bottle feeding Jack, at least introducing it to him. He seems to swallow more than he used to, even though it is giving him troubles. At this point all of their troubles center around the swallowing. Once they can get that down they should be good to go. Hopefully the antibodies begin to clear out of their system. Both of them are definitely trying and know what to do, it is a matter of them having the coordination. Riley took 15 cc last night, and 10 this morning. But when Rachael and I fed her she only took about 2. They both have a long way to go, but like the doctor said, it will take time. Oh yeah, Jack's fingers have really improved. They are still far from perfect, but the joints have loosened up a lot. Jack didn't even ding once today while we were at the NICU. Not to say he won't again, but it is nice to have a break from it for a few hours. Tomorrow they will be four weeks old. On Saturday they will actually hit their due date. No end it site, but we are trying to stay cool about it all.

And for no purpose, two of my favorite songs from a band that still has never been topped.

The Rover


Since I've Been Loving You

I Break Horses

One thing to look forward to today, Browns football. Day 27. Blah, blah, blah...

Smog, I Break Horses

Sunday, August 17, 2008

What You Talking About Willis?

Jack "I think I'm a badass because I have blood on my cast" Kraft

NICU

More NICU

Rachael

Willis

I'm Mad as Hell...

Rachael and Riley

More Rachael and Riley

Apparently Riley is gaining a reputation for herself around the NICU. One of the nurses said "good thing her name is Riley, because she really gets riled up." Riled up indeed. Words cannot express how red she can get in such a short period of time. She turns into a little devil baby in a matter of seconds. It is hard not to imagine little horns growing out of her head at times. And then with the guttural groan, she gets even more freaky. Somehow through all of this though she maintains her cuteness.

If only Riley could speak, I'm sure she would go to the window of the NICU and scream at the top of her lungs...I'm mad as hell, and I'm not going to take this anymore!

Jack
video

Riley
video

Saturday, August 16, 2008

11 Pounds of Baby

Left my camera at the NICU. I got some good videos too. I will post them tomorrow. Riley is now 5 pounds and Jack is 6 pounds. Riley is starting to show her dramatic side more and more. It is scary how mad she gets at times. Same old, same old, day 25 at the NICU. That means we are a) 1/2 way there b) 1/4 of the way there c) 1/8 of the way there, or d) none of the above.

And though I post this next video with great reservation, it is just too damn funny not to share. Some of you may have already seen it before. For those of you who read this blog who don't like bad language/subject matter, stay away from this one. Good. Now with that caveat behind me, I feel free to give you Technoviking. Enjoy.

WWJD?


I saw some guy wearing this shirt today at the hospital. Rules. Rachael and I were able to hold the kids next to one another today. It was cool for a while until jack decided to get back to his heart/breathing tricks. fun. It's kind of funny how the nurses assign all of these fluffy terms to describe when a baby is going into a bad place. "oh, he is having his dipty-dos." Oh, by that do you mean is heart isn't working? Yeah, dipty do dah.

Videos

Jack
video

Jack
video


No updates on the babies. I heard a rumor that Riley took down 11 cc, not her personal best, but pretty good. I have posted some new videos for your personal enjoyment. And I wanted to post this song because it is one of my favorites, not because it has any relation to the subject matter of this site. This song needs to be listened to. It may have been too long since the last time you heard it.

Friday, August 15, 2008

Same Old...

More of the same from tonight. Jack was awake, looking around etc...Riley was sleeping the whole time. Jack had some dips but remains off the CPAP. We stayed for a short while. No real news. I'm kind of pissed right now because I can't post videos. For some reason I'm having trouble. Hopefully it will work out soon. In the meantime I will try to post some photos tomorrow.

Insomniac Jack

Jack continued his high energy today. He is awake the whole time we were there today. I know I'm making a big deal out of this, but it is unique for him to have so much energy. Jack seems to be handling his secretions a little better than Riley. However, Jack still has some breathing issues that Riley doesn't have. We will see if he can stay off the CPAP. He had his typical dips today. Sometimes I wonder though how crazy it would be if Jack beats his sister out the door.

Our doctor is going out of town for a few weeks. Apparently the doctor who will be watching our babies knows about everything and their diagnosis.

I can't upload videos right now. This site isn't working properly. I will have to upload some videos later.

Thursday, August 14, 2008

Happy Jack

video

Jack had a great day. He is currently off the CPAP and spent the whole day checking out the world (don't worry Jack, there is more to the world than this). Though the CPAP is always right around the corner, he was happy to have it off his face for now. We have never seen him with so much energy. He was awake all day. Sleep little man, sleep. He is my little buddy. Today was a good day.

Happy Jack

Day 23

Jack

Jack

Riley

Our babies blood is off to the Mayo Clinic. They took blood today from each baby and Rachael. The blood is being sent to the Mayo Clinic to determine whether the antibodies in Rachael's blood is the same as in each baby. They expect that it will be, but they want to make sure. It seems to be more for scientific intrigue than anything else. It is also being tested free of cost due to the curiosity of it all. This will be another test that takes two weeks.

As promised, here are some photos. I also have some videos. Poor Jack has crap all over his face, but you get the idea. Also, the videos are short, but anything larger would quickly eat up the amount of space they give me on this site. I'm not ready to go to a pay service quite yet.



video video video

That Just Blew My Mind...Huh?

video
This isn't a very interesting video, but I wanted to see how uploading video works on this blog. Hopefully it will be something I can add on a regular basis. I will get a better video when I go in today.

Wednesday, August 13, 2008

Dr. Babyface

Not much happened today. Rachael and I saw Tropic Thunder. It was good. I would give it a B. Like Pineapple Express, it could cut the fat a little, but overall it was funny. Honestly, I think that I'm not the best reviewer at the moment, having a tiny attention span and all...

Jack is on the CPAP, again, but whatever makes him feel good is cool with us. It is less troubling to have him on the CPAP with the belief that time is the ultimate issue at hand. As the doctor said, our goal is to keep them safe. Duh. But it really makes sense considering their condition. I don't feel the need to push them as much as I used to with the thought that it is a transient issue. Also, we our able to hold Jack with the CPAP now which makes it a little less traumatic for us. He is in a safe place. They are also attended to by truly amazing people. Our dream, and I confirmed this through discussion today, is that one day we will win the lottery and donate all kinds of money to the NICU. The nurses there save lives every day. Words cannot express the amount of gratitude we have for them.

I'm doing my own internet research, as you can imagine, and have become more secure in the diagnosis. Sometimes I wish I was stupid enough to take every doctor at their word. It might make it easier on me. Unfortunately, I realize medicine has many variables, as do doctors. I have faith in ours though. He has a baby-face. Rules. So, anyhow, the lesson I'm learning is to believe in positive thinking, medicine (Budweiser) and...God. Yeah, I said it (God). You try having two babies in the NICU. And why do I even feel the need to explain it? It isn't like I'm thanking God for the great pass I just caught in the Super Bowl. Assholes.

Whatever...nothing more. No photos. No photogenic moments. They can't be cute all the time.

Tuesday, August 12, 2008

Paging Doctor Rachael...

Today was an important day. We think we have a diagnosis. This is a good thing.

I started my day at Browns training camp with my mom and brother. That's another story. But, because I was at training camp, Rachael went to the hospital by herself. This made me a little nervous because I knew we were expecting the results from a blood test today that she took about two weeks ago. I feared that she would get the results without me present. Turns out that almost happened. When I came into the NICU Rachael was in the "NIC Nook" with the doctor. Odd. So I sat down. Then one by one a series of people filled the room. Okay. I had a good idea what this was all about, but the suspense as you can imagine was killing us. As we waited for the room to fill we small talked about our professional lives etc...come on already people, eventually the doctor informed us that Rachael's blood test came back positive for the antibodies that cause Myasthenia Gravis. The number of antibodies was also quite high. Strangely, this was just the news we were hoping for.

As most of you know from reading this blog or otherwise, our babies have a hard time swallowing, were born with finger contractures, and have breathing issues. When these symptoms were first developing the doctor asked us if anyone in our family had these issues. No. It became clear that the issues Jack and Riley were facing went beyond prematurity. 35 1/2 weeks is hardly premature, believe me. So this has made us absolutely crazy over the past three weeks. Anyways, one night a few weeks ago Rachael made the connection that they could have neonatal myastenias gravis. She was diagnosed with an occular form of myasthenias gravis, now in remission, a long time ago, and after researching it on the internet found that our babies have all the symptoms associated with the disease. The following day, about two weeks ago, she handed the doctor a bunch of print outs on the disease. This isn't a common disorder, and the doctor needed to look into it. Besides all they need is another webmd doctor. But they weren't prepared for skill of this doc. The decision was made to have Rachael do a blood test in order to find out if she is carrying the antibodies that cause the disease. The test took two weeks. In the meantime we had all kinds of fears for Jack and Riley, but hoped that the neonatal myasthenias gravis was the answer. Turns out that the neaonatal mg is a transient disorder and typically works through the system in 4-6 weeks. Could be longer, could be shorter. Also, babies with neonatal mg are expected to have a spontaneous recovery.

So although it is not the best case scenario, this is good news for Jack and Riley. The doctor, with the results of Rachael's blood test coupled with the babies symptoms, is very confident that this is what is wrong with the them at the moment. The doctor told us to expect a long haul, but in time they will get better and should have no long term problems.

It is hard for me to accept the news (being somewhat positive) but it makes sense. I'm cautiously optimistic. I will be convinced when I see them take down a whole bottle of milk, but it seems like we have a diagnosis.

For now we are just waiting for the time when we can finally say that this has all been wonderful, but now we're on our way.

Phish, Down with Disease

With A Little Help From My Friends...



I believe this video was first brought to my attention by Grandpa Cornett. Shout out. Then, the other day this was sent to me from Pete. Again, shout out. So, bottom line, it is really funny. It made me laugh for the first time in a while. So dramatic, I know. I realize most of you don't look at any youtube video I post on here, and believe me I wouldn't either, but this one is really worth watching. Everyone will enjoy this one. Really.

Going along with the theme of this post, I would like to thank everyone for all their support. I know Rachael and I haven't been very good communicators lately, or ever, let's be honest, but please know that we appreciate all the cards, messages, emails, posts etc...it really means a lot to us. So thank you. This applies to you to Connor. Even though I know that you would like your card back, Jack and Riley are very appreciative of their cousin's support.

As the post time suggests, it is really early in the morning. Or late at night, depending on your perspective. One thing you have to do (or can't keep from doing) when your kids at the NICU is make phone calls in the middle of the night to check on their status. It is very stressful. This is especially true when Jack has recently gone off the CPAP. You are aware that every time you call can bring disappointing news. Well, as I was typing this, I could hear Rachael on the phone. And when I hear Rachael on the phone with the NICU I'm forced to listen intently to her voice in order to determine the type of news she is receiving. This invariably leads to a fast heartbeat. Turns out this phone call was pretty good. One of our favorite nurses has our babies tonight. She told Rachael that Riley has been a peach. She also said that although Jack had some problems early on (around 7:00-8:00) he hasn't had any problems since being suctioned early tonight. He has a lot of snot. Now it is nearly 5:00 a.m. So he isn't on the CPAP, for now, but this may change by the time you read this.

One quick story about phone calls. Earlier today Rachael and I were at home when she missed a call from Fairview Hospital. This has never happened before and of course she freaked out (as anyone would have). She called the NICU upon realizing that she missed the call. When she asked for the status of Jack and Riley, the doctor got on the phone instead of the nurse. This also never happens. More panic. Turns out the doctor was only calling to let us know he reduced their medication. Rachael nearly had a heart attack. It is easy to think crazy thoughts when the NICU comes calling.

That's all. Now I must return to Drew Barrymore in Firestarter. What a gem.