Tuesday, September 30, 2008

Day 70 (Long Way Home)

Very early on in this blog I wrote how a couple took home their twins at 109 days. I remember thinking how long that was. Now, 109 days would be a gift. Though I think Riley will be home within the next 39 days, I can hardly say the same about Jack. They have been at the NICU for so long now that the original "shock" of it all has worn off and now Rachael and I are just kind of coasting along in some weird sort of twilight zone. It's hard to explain...

Jack had a better day today than yesterday. I wouldn't consider his day a great one, but it wasn't his worst either. He has no new symptoms, just the same, persisting. Everyone talks about this corner he should turn one day, but when you haven't seen it in 70 days, you start to think it doesn't exist. Of course, we have seen the corner with Riley, after about 60 or so days, and if you look at it as Jack had 3 times the antibodies one hates to do the math and think that Jack won't turn that corner until day 180. That just can't be. Can it?

Riley is doing okay. We are a little skeptical now about any quick exit plan. She seems to have settled into a pattern of taking about 30 cc a feeding. This isn't enough for her to sustain herself without some tube feeding. My guess is they will probably supplement some of her feeding with tube feeding until she is ready to do it all on her own.

Long Way Home (Mom Rock)

Monday, September 29, 2008

Hard Day's Night

Today wasn't so great for Jack. Last night he was dinging like crazy. They took some blood from him to check if has an infection. He doesn't. They checked his lungs to see if he had aspirated. He hadn't. It is likely just more of the same, revisited, secretion troubles. He had a good run for a while, but today he was struggling again. Bummer. We just want Jack to have some happiness in his life. Of course we also want to see him get better. Sometimes we see that improvement, but there are also times, like today, where that improvement seems like it has never happened.

Riley continued her quest for independence. She wasn't as kick ass on the bottle today, but is still doing her best. If she can get it together we may be able to get her home next week. Only time will tell.

Hard Day's Night

Sunday, September 28, 2008

Chuggin' Along

Jack (Who Needs Sleep?) Kraft

Riley Sans Tube

More Riley

Jack
video

Riley continues her quest to come home. She took 65 cc this afternoon followed by 45 cc tonight for Rachael and I. She always seems to take less when we are feeding her. We probably don't know what we are doing. We are hoping to break her out ASAP. As long as she can maintain on the bottle I don't see why that isn't possible.

Jack was wide awake all day. We were doing everything we could to get him to sleep but he wasn't into it.

Deerhunter, Strange Lights

I Can't Help Myself

Though I swore I would not watch the Browns today, I have had a change of heart. I'm preparing myself for certain heartbreak.

Good news in baby world. Riley's tube is not going back. This means she is tube free and completely dependent on herself to eat. Her last three feedings were 60, 60, and 65 cc. That is right where she needs to be. They are going to watch her for the next 3-4 days to make sure she continues to feed well. If all goes well I can't help but think she will be coming home soon. It's almost scary, because though we have had so much time to prepare, we really need to do some things around the house to get ready. She is definitely ready to come home.

Take This Tube And Shove It!

Riley ripped her NJ tube out of her little body last night. Apparently she is trying to tell us she has no need for tubes any longer. As of right now they have not put the tube back. Hopefully they will just leave her alone and have her bottle feed exclusively. Last night, following the pulling of the tube, she took 60 cc on both feedings. So she definitely can do it. She lost a lot of weight yesterday, but we expected that to happen with some of these adjustments. She is making her move. Which, of course, only makes us sad for little man Jack. Speaking of Jack, he gained a little weight. I was told that they just tried to bottle feed him, but he wasn't interested and it made his body wretch. This is concerning since we are really trying to prevent him from having any oral aversion. We will continue to work with him and see how it goes. He hasn't had any issues with the heart dips lately which is cool.

Golden Age, TV on the Radio (buy their new album already, one of the best of the year)

Saturday, September 27, 2008

Another Busy Day for the Cutout Witch

Baby news...Riley broke her world record again today, this time taking down 50 cc not once, but twice. Her drip feed is now down to only 5 cc an hour, so maybe she is hungrier and more motivated to take from the bottle. She is getting closer and making steps in the right direction. Her brother had a good day today. He doesn't dip the way he used to, or at least not as often. You can actually hold him now without constantly checking his monitor. Also, Jack is now getting big, weighing in at 7 lbs and 1 oz. Riley is now 6 lb 12 oz.

Non baby news: Saw the Boston Spaceships last night. It is always great to see Uncle Bob. It was a great show. He even tossed out a few GBV hits toward the end, like cutout witch, tractor rape chain and game of pricks. Next up on the horizon is Deerhunter, Times New Viking, and Boris.

GBV, Cutout Witch

Friday, September 26, 2008

Doctor

I spoke with the specialist doctor last night. He told me that Jack's higher antibody level could be the result of a bad test, a margin of error that is insignificant, or a loosening of the antibodies from the nerves. Said it is not Jack producing his own, and that he wouldn't even have the ability to do that. I guess babies don't generate their own antibodies with this disease? I don't know, but he ruled that possibility out. Not that we really think that is a possibility anyways. Told me that the most important thing is the improvement seen in the babies themselves and not the number of antibodies that remain. Essentially he said be patient and don't be alarmed, long road etc...

Riley gained 2 ounces last night. Must have been the 41 cc the little oinker took down. I don't know if Jack gained weight yesterday or not.

Tonight is the Boston Spaceships, so I will be at the Grog tonight. Getting pumped for that one.

Family Tree, TV on the Radio


Boston Spaceships (even though I already posted this video)

Thursday, September 25, 2008

Positive Negative, Positive Negative

We got the blood test back today. Boy were we surprised to find out that Jack's antibody level just about doubled. Not quite the result we were hoping for as you can imagine. Riley's antibody level dropped slightly, but still not as much as we hoped. We were hoping to have a reduction in the antibody levels to measure their ability to break down the antibodies and to hopefully gauge when the antibodies will leave their systems. Now that Jack has just about doubled his antibody level, we are left with the question, why?

When I spoke with an MG specialist a ways back, and we discussed blood tests, he warned me that sometimes a second blood test will produce abnormal results. He told me that the antibodies bunch together at nerve endings and sometimes take a while to loosen up and enter the blood stream. This is my thinking with Jack. I think that his antibodies have loosened up and are now in his bloodstream more than they were initially. The only other alternative, which contradicts everything we have learned so far, is that Jack is actually producing his own antibodies. We don't think this is the case.

One concern we have is that Jack and/or Riley don't have the ability to break down the antibodies the way they should. If this is the case than a blood transfusion becomes more of a consideration. We aren't there yet, but we have to keep it in mind.

The other strange thing is that even though the most recent test showed that he had more antibodies in his blood, his symptoms have certainly improved. There is no doubt he has gotten better over the last few weeks. And it isn't just Rachael and I searching for positives, because actually, I tend to search more for negatives.

On the positive front, Riley broke her current best tonight and crushed 41 cc. Also, Jack had a really good day today, about his third in a row.

Modest Mouse, Positive Negative (some random video, but highlights the kind of things I wish I was doing these days)

Thursday

Not too much to report from yesterday. I guess Jack had a really good day which is nice. Riley was a little feisty from what I was told. I didn't see them yesterday, so I'm going on Rachael's word.

We are still waiting on the last antibody test. We should get it any day now. Hopefully there has been a good sized reduction in the level of antibodies in their blood.

As far as weight gain is concerned Jack is now 6 lb 13 oz, and Riley is now 6 lb 8 oz. They both went up in their weight yesterday.

Wednesday, September 24, 2008

Morning Update

Jack down 11 grams, Riley up 24 grams. Riley didn't really bottle feed last night. I guess she was too mad. That is the word anyways. Jack stayed up all night, which is strange.

Tuesday, September 23, 2008

Asleep for Days

Jack and Riley had some special visitors today. Jen and Doug saw the babies for the first time tonight. They enjoyed the company.

Jack had a good day today. Riley seemed to sleep the day away (no she has not been asleep for days, actually the opposite). Not much happened with them. Riley no longer needs her "weights," apparently her fingers have made enough progress that no more intervention is necessary.

Here is video of the two of them from last night. There are two titles for this video. One title is "smell test," the other title is "thumbs up."
video

And to satisfy my love of trying to spread good music, here is Blitzen Trapper. Great band, with a great new album.

Blitzen Trapper, Asleep for Days

Day 64

Jack gained an ounce. Riley lost 16 cc. No bottle feeding of Riley over night. Jack had a good night.

Monday, September 22, 2008

2 Months Old...Yay?

Today Jack and Riley turned two months old. Whoopie. Jack had a rough first half of the day, followed by a good showing tonight. Riley continued her good streak, for the most part at least. No weight gain. It sucks that they are struggling so much to gain weight. Hopefully that will change someday. I don't want a 6 lb first grader on my hands.

Jack and Riley will get some new visitors tomorrow. Doug and Jen will fly to the heartland to see the babies. They are looking forward to meeting them both.

Here are some photos from today.

Cute Contest

I Think We Have A Winner...

Oh Riley, Don't Be A Sore Loser.

Family Affair

Happy Mother

Riley

Jack

Sunday, September 21, 2008

Riley

Rachael got back from the NICU. She told me that Riley beat her world record, this time coming in at 34 cc. I know, I know, that is only 1 cc more than her prior record, but it is one cc closer to leaving the NICU. Nothing has been said about her coming home soon, and maybe she won't, but it sure does feel like she will. Rachael and I are starting to allow ourselves to see her coming home soon. Of course soon is a relative term. Soon could be a month. But an end is in sight.

This realization, as mentioned earlier, is bumming us out in terms of leaving Jack behind. We can't really stand the thought of taking Riley out of the hospital without Jack. Maybe we are getting way ahead of ourselves.

My Bloody Valentine, Soon

No Way, No How


For as long as Jack and Riley remain in the NICU, I am not going to waste anymore of my Sundays watching the Browns. The team is absolutely horrible, and they aren't worth my time. There are better things I could be doing other than watching a bunch of overpaid assholes pretend to play football. And for the time being I am suspending all Browns shirts for Jack. It doesn't give him a positive outlook on life.

Searching for a Home

Riley continues to impress with her bottle feeding. Jack took 15 cc of his own today, which is his own personal record. I think he threw it all up, but it is still good that he is getting it down. Rachael and I are both really happy that Riley is getting closer and closer to acting like a healthy baby. We know Jack will be close behind.

No photos today. Maybe Rachael will get some when she goes in tonight. Hope you all like the new look of the site. I know it is kind of feminine, but just because I put the information on this blog doesn't mean that it is entirely mine. Besides, it kind of seems baby friendly. I like it a lot better than the typical blogger format.

Wilco, Via Chicago

New Layout

I have been messing around with new layouts. Don't be surprised if this one changes. I can't add gadgets with this template, so my poll is now gone. I'm looking for a template that is in the same color scheme but with elephants and giraffes. Kind of like a baby jungle vibe. I would like to tweak this template a little, but the designer has it locked down. I'm sure if I knew more HTML I could make the necessary changes, but oh well.

Spoke with the nurse. Jack took 15 cc this morning. That is his world record. Riley continues to feed well. Riley was up half an ounce, Jack was down half an ounce. Everything was good throughout the night.

Saturday, September 20, 2008

33 cc!

Riley took 30 cc this morning, 30 cc this afternoon, and 33 cc for Rachael and I tonight. She was willing and able to take more than 33 cc, but we decided she was getting tired. She was the talk of the NICU amongst the nurses who couldn't believe how well she did today. We have high hopes for her right now with her bottle feeding. The light at the end of the tunnel seems to be getting closer.

Part of realizing that Riley is getting closer to getting set free, is the reality that Jack will likely be left behind. This is a real bummer. Even though he doesn't really know his sister is close by, somehow it makes you feel better that they are there together.

Jack was very sleepy today and had kind of a blah sort of day. I can't think of any other way to explain it.

I noticed that Jack has really long eyelashes. What a player he will be.

The First Cut is the Deepest

Well I guess I was wrong about Perry Farrell. That's a good thing. Not that he has put out anything worth mentioning since maybe about 1996, but still a good thing.

Baby News: Jack was sleeping the whole time we saw him today. He needed a lot of suctioning for a while. This kind of sucks since yesterday he didn't need it at all. I guess he took down about 10 cc from the bottle. Hopefully tonight we will get some face time. Riley tied her world record today and took 30 cc. She followed this up with a decent performance of 20 cc. When we get her to about 40 cc, she is at her full feed on an every 4 hour schedule. Keep it coming sister.

Our babies are currently in the back corner of the NICU. This is right where male babies go sometimes to get clipped. If anyone tells you that it doesn't hurt them, they are lying. You should hear the little babies scream. And there is this creepy looking device they use to strap them in before the operation. It is called a Cicrumstraint. What a name. It got me thinking about the whole circumcision thing, and wondering how important it is to get it done. We were told by one of the nurses that her sons were snipped when they were 12 years old because they were getting laughed at in school. I would like to see their circumstraint... That is crazy. I don't know, I know there has been a recent swing away from circumcision, but ultimately I think it will likely be another trauma that the little man has to endure in his young life. Now step up to the pencil sharpener!

So, not that this is really up for a vote or anything, but I wanted to get your opinion on it. Make sure to vote in the new poll.

The Circumstraint

Rachael's Latest Art Project


Jack (Don't do it!)
video

Jack
video

The First Cut is the Deepest (Cat Stevens)

Hopefully I'm Wrong

In non-baby related news, I hope I'm wrong that Perry Farrell possibly died in a plane crash last night. He gave us one of the better bands of the 80's/90's after all.

Jane's Addiction

Friday, September 19, 2008

Good Day

Today was a pretty good day for Jack and Riley. Riley continued improving on the bottle, which as we all know, takes her steps closer toward the door. Jack did really good as well. His mestinon was reduced yesterday and it seems that it may have cut down on his secretions. We have Jack positioned upright in a boppy which tends to be helping him out as well. We are a little concerned that he may be developing an oral aversion, but we are taking steps to introduce things to him orally that are positive. Today was a day where we started to see them SLOWLY turning the corner. Of course there will be setbacks, but we will take our good days when we have them.

We took some photos and video, but left the camera at the NICU.

Ratatat

Friday

Jack and Riley both gained about an ounce yesterday. They both had a good night. Here is a video of Jack from last night.

Going on two months kids, let's get on with it.

video

Lauren Hill

Thursday, September 18, 2008

Lauren Kendall Kraft

There is now a name for the beautiful new addition, Lauren Kendall Kraft. Click here.

Loretta (Lauren) Lynn (Riley Lynn's non-namesake) and Portland = some sort of relevance?

Love Lockdown





Hey. Jack and Riley both had good days. Riley is bottle feeding increasingly well, though she didn't break any of her records today. Jack took 12 cc today, which is a lot for him. Jack's Mestonin was reduced to 2.5 mg every 4 hours, down from 5 mg every 4 hours. Hopefully this will still give Jack the benefit of the medication without as much of the secretion building side effect. They both continued to enjoy their new temporary homes. Overall a good day.

The Kraft family is currently on name watch for the newest baby. Still no name yet for the little girl, but my brother told me it will be coming soon.

Oh yeah, they are now officially the oldest babies in the NICU. Yay them. And did I mention that one of the nurses told us we deserve a medal? Yay us. Lame...

Love Lockdown, Kanye

Last Night

Both babies gained weight yesterday. Both babies are now taking small amounts from the bottle. This is a new development for Jack. He took 10 cc, which is really a small amount, but the best he has done yet. Helps him work on the swallowing/sucking muscles. No issues through the night. In a lot of ways the gap is closing between Jack and Riley. They aren't that far apart in their progress.

On a side note, I feel lucky that Rachael and I have had power over the last few days. A lot of our friends still don't have it from Sunday's big blow out. From Columbus to Cleveland, its lights out.

Lights Out

Wednesday, September 17, 2008

It's a Girl

The Newest Kraft


Riley and Jack just got their first female cousin today. Kara and Jason had a girl around 8:00 o'clock this morning. Still no name, but I sent over an extensive list of my favorites. I think this one is going to take after her mommy. Congratulations!

Jack and Riley are in cribs now. They each have their own crib towards the back of the NICU. We have our own little corner of the world. Sunlight actually peeped through the window and we held Riley in its glow for a short while. It is nice to see them in cribs. No photos though, we forgot the camera at home.

One interesting moment came today when a nurse was adjusting the crib, with Jack still in it, and the crib came crashing down. The mattress came down about a foot and poor little jack got a bit of a thrill. Luckily no harm was done, and we chalked it up to just another one of life's struggles for our little man. A sense of humor is so important these days...

Kim and Jessie (just because)

81 Grams!

Rachael and I have slowly become obsessed with weight gain. I think it is because we spend so much time around premature babies (like their 1 and a half pound neighbor). Even though our kids are fairly big for the NICU we still like to see them gain weight. Riley didn't get the message yesterday and lost 14 grams. Big brother Jack on the other hand almost went up to 6 lbs 8 oz. He almost gained 3 oz yesterday.

Today isn't about our babies though. In about 3 hours from now Jason and Kara are having another baby. Will Riley remain the only granddaughter? We will see.

Little Big Man

Tuesday, September 16, 2008

8 Week Birthday





Let me start by saying my brother and Kara have a very big morning tomorrow. At 7:30 a.m. Kara goes in for a planned C-Section. They don't know if it is a boy or a girl. Either way, a new Kraft is born tomorrow. Pretty exciting...

Jack and Riley were okay today. Not too much to report. I have some photos that I took today (see above). We put them together in Jack's bed, and they both seemed to enjoy themselves.

From a medical perspective there isn't much to report. I think they are going to increase the amount of times they attempt to bottle feed Riley. They are also working with Jack to get used to a bottle. Riley still has a really broken down butt. Don't know if they gained any weight today.

Send Me an Angel


Alternate (and cooler version)

Nevertheless

Jack maintained his weight and Riley gained 4 grams. They always seem to do things in pairs. They both had a good night according to the nurse. Today they are 8 weeks old. Day 56. Yawn.

Brian Jonestown Massacre, Nevertheless

Monday, September 15, 2008

Monday, Monday...

Jack and Riley gained some weight yesterday. We don't know what their status is for today. We are now bottle feeding Jack once a day. He took down a very small amount, but it is essentially the first time he has been exposed to it. We are now bottle feeding Riley three times a day. Unfortunately she isn't very hungry considering she is always on the drip feed. She may need some more motivation. Jack seems to be coughing a little bit more which is good. Jack also increases his cry strength each day. This is also good. Everything is pretty much the same. I guess this is good in the sense that they are maintaining ground as opposed to losing. Riley is going through round II of bottom breakdown. This sucks, but is relatively a minor problem considering everything else they are going through. Still, I wonder how a baby gets to the point skin breakdown when they are in a NICU. Kind of pisses us off actually.

Jack was sad when he heard the Browns lost. I was sad to tell him. Get used to it buddy, it is the life of a Cleveland sports fan.

I don't even like this song, but it is in my head and it is the title of the post.

Sunday, September 14, 2008

Are You Ready For Some Football!



Oh how quickly I forget the agony of last week's game against Dallas. Tonight my Browns are on the national stage. Don't embarrass yourselves Brownies. Please. Jack is all suited up in his Brown's gear and wants a full report tomorrow. I just don't think I can hand him any bad news while he's down.

Jack and Riley were doing good today. Rachael was able to hold Jack for a really long time without any problems. Jack is now 6 lbs 5 oz, and Riley is 6 lbs 4 oz. Big brother, you are about to get surpassed by my little porker. Speaking of the porker, she too had a good day.

We are bottle feeding Riley again. She still doesn't take down nearly what she needs to, but we are working with her. Also, Jack and Riley both are slowly developing smiles.

And to Jen Stone, this photo is a disgrace. My son will never be a Squealer fan. There has only been one in Kraft history. His name is Jason.



And on a totally unrelated note, I have always wondered why nobody attempts to recapture this sound. I know Amy Winehouse does to a certain extent, but her albums are still overproduced. It really irritates me for some reason.

Saturday, September 13, 2008

The Scraps





video

video

So here are some photos from the other day. I really like Captain Adorable. Makes me feel like he is a baby superhero. He fights crime in the NICU amongst all the dirty thieving babies. What a terrible society they have.

Jack is 6.4 and Butterball is 6.3. No real issues today while we were there. Jack had is usual issues. We walked out today with a woman whose baby is going home tomorrow after a 3 month stay. Good for her.

I bought the new Metallica album today. Mistake? I'm not quite sure yet, but the 10 dollars may have been better spent on a steak and some beer.

I'm getting mentally prepared for great football anguish. I know some of you don't live in Ohio, but this is a pretty big football weekend around these parts. We got OSU tonight (loss) and the Browns tomorrow night (sadly, another loss). Oh well, I will watch anyways.

Just the Two of Us


Hey, here is one photo from tonight's photo blitz. A lot of the photos I have are out of focus (as is the one posted) and aren't that great. I will try and post the scraps tomorrow.

Today was a good day. By good day I mean no steps back. I just spoke with our nurse for the night and Jack almost gained an ounce. Riley hasn't been weighed yet for the night because she is busy sleeping. Ohhh butterball, probably too fat to breathe.

In other news, Rachael and I are now confident that the babies will be home within 8 weeks. Optimism.

Friday, September 12, 2008

Morning Update

Jack and Riley both gained weight yesterday. Some of you may wonder, Brian why do you care? I care because I don't want them to have tubes going into their stomachs. It seems like this most recent tube they have going down their throats is working for them. Jack is 6 lb 4 oz. And Riley is now 6 lb 2 oz. Look out Jack. I was holding Riley yesterday and I could really tell the difference. Her face is all fat now. She is my little butterball. Also, no problems last night. Work time.

Thursday, September 11, 2008

Countdown

For some reason I can't add this to my "gadgets," so I will just post it here. In my haste I deleted the web-poll for Jason and Kara. I guess it was already well settled it will be a boy. We will see soon enough.

Countdown Clocks at WishAFriend.com

NICU Babies!


Myspace Tshirt Generator


So today was like most days. Not much changed. They had a decent day though and took no steps back.

When Rachael and I went in tonight we noticed that all our baby neighbors had been displaced. They had all been moved into an intermediate care section of the NICU. This is good for all of them. It kind of sucks to be left behind, but we will have new neighbors soon. And we are happy for all of those babies moving closer to home. Graduation time is soon for them, and graduation will happen for Jack and Riley someday as well.

Kanye

6 Lbs

Riley hit the 6 lb mark today. Jack is up to 6.3 lbs. He better look out or his little sister will pass him by. Both had a good night.

I also thought that the lion video posted last night was going to end up with the two guys getting mauled by the lion. I think that is what I was waiting for, and when it didn't happen, I was really confused and bummed.

Wednesday, September 10, 2008

No News

Today was a nothing day. Jack and Riley were the same. A lot of suctioning for Jack. We have been given the green light to start bottle feeding Riley again. That is a plus. Now if she could only get the strength to take the bottle better, which is weird because she isn't a baby that acts like she is missing any strength. We will continue to work with them. Nothing really to report. Sorry it is such a bland post. Some days are meant to be free of news I guess.

Rachael showed me this clip when I got home from work. I didn't know why she was showing me the clip. I wasn't sure if she was goofing on it, or really into it. I watched the clip completely void of emotion and looked at her face and realized she really thought it was cool. At this point I realized my heart is black again. Thanks work!

So consider this youtube video straight from Rachael. (side note, this was our first song back in 1992, time sure does fly)

Morning Update

Jack and Riley both lost a little weight yesterday. No real issues through the night for Jack or Riley. More of the same. Rachael is going in this morning before work.

Tuesday, September 9, 2008

My Favorite Things

I thought about naming this post "we are family," but decided I had no interest in posting that youtube video. Instead, and more fitting, I bring you my favorite things. Today was a pretty good day at the NICU. For their 7 week "birthday" we re-introduced Jack and Riley to themselves. It was interesting to see how calm Riley was, while even awake, next to her big brother Jack. And by big-brother, I'm referring to one minute, not the few ounces he has dangling over her head. Having them next to each other is something you can be certain we will do more often. Of course we can't wait until they are always next to one another.

We also got our first family photo today. What a great photo to have. Finally.

Jack and Riley both had good days. They had some more blood drawn in order to check their antibody levels. Jack, as you can see, is still off the nose candy. Though the road may still be long, I feel like we are starting to see the far end of the tunnel. I know they will be home before we know it.

Here are some photos and videos from today.

1st Family Photo (notice Jack holding Riley's hand and we didn't manufacture that)





And here are a few videos
video


video

Coltrane

7 Weeks

Just got the morning update. Riley gained another 2 ounces, and Jack gained about 1 ounce. No problems over the night. Hopefully they can continue to gain weight. Jack had no spells over the night. We will see them tonight after work.

Monday, September 8, 2008

Day 48 and Counting



Wall of Jack

Jack and Riley had a pretty good day today. Jack is still off the nasal cannula and doing well. He reads 99/100 almost all the time on his oxygen. He didn't really have any problems at all today minus a little spitting up following suctioning. You can hardly blame the guy though. They go way down there. They are going to take some blood from them this week and see what their antibody levels are. Riley also had a good day. We are hoping to start bottle feeding both of them next week. That is what the doctor wants to do. Hopefully they can continue to gain weight.

We are going to be a lot busier now that we are both back to work. It is going to be tough to fit everything into each day.

Morning Update

I realize that most of you don't need constant updates on these babies, but I also know there are some of you that like them. And I guess you only come back as much as you like, so what does it matter. So, Jack and Riley did fine last night. Jack remained off the nasal cannula. He had no problems at all last night. They both gained weight. Riley gained about 2 oz (which I think is a lot in baby land) and Jack gained almost an ounce. Rachael will go in this morning. I will go into work. I guess you could say we will go our Separate Ways.

Sunday, September 7, 2008

The Lonliest Browns Fan


Poor Jack, he doesn't even know that his team put on a horrible display tonight. He doesn't realize he is the only remaining Brown's fan in the world. I have better photos than this one, but they were taken by the nurse and printed out for me. They are now all over my walls at home. If you look closely, you will notice that Jack is without his nasal cannula. This makes me a little uneasy, but we are going to see how he does. Besides, if he needs it, they just put it back on. Nothing ventured, nothing gained.

Boy do I feel old watching the video music awards on MTV. Is it age, or is it just absolute garbage. I think it is a little bit of both. I just don't get it.

Football and Work



Just got back from the NICU. Both babies were doing well. Neither one had spit up since yesterday. Riley lost weight. Jack gained weight. They increased Riley's intake. They left Jack the same. No major changes.

I have a Brown's shirt for Jack that I want him to wear today, but he was sleeping while we were there, so I just put it over him like a blanket. I know he wishes he could see tonight's game with his old man. Who knows, maybe Riley wants to do the same.

I have to go back to work tomorrow. Rachael goes back on Tuesday. We will have to find a new routine with the NICU.

There is a Bird in our Bedroom (Literally)


There is a bird in our bedroom right now and Rachael and I are holed up in the "red room." Apparently our cat thinks it cute to catch not only mice and bring them to us, but now birds. I was just getting some needed zzzzzs when Sequoia came into our room and made the battle call. This was followed by a lot of squeaking. So I got kind of pissed thinking that she brought a live mouse up to our room to kill in front of us. Then I started hearing a sound that I wasn't too familiar with. In between the squeaks I heard a lot of flapping. I thought, could it be a bird? So I jumped out of bed (Rachael hid under the covers), and I gave off the scream of a four year old girl, as I watched a bird fly around our room. This was not a small bird either. It was like the size of a Robin. So Rachael and I have a window open in our room now, and got the cats out of there. Now we are hoping that it flys out the window on its own. Hopefully it doesn't crap all over our bed in the meantime. Damn cats.

This kind of reminds of the time Rachael had a pet bird for a while. She found the bird half dead and brought it into our home in a little plastic container. She tried to nurse it back to life. Of course Sequoia kept attacking it so we had to keep it locked up in our bathroom. You can only imagine how much this pleased me to have a disease ridden filthy bird living in my home, but I tried to remain all smiles. Anyways, on about day 2 of our little bird experience Rachael took it to the pet store with her and asked some random store clerk what she should do to feed the bird. The store clerk took a look at her, took a look at the bird, and sadly informed her that her little bird was dead. She was so sad. She started crying in the store and tried to make a quick exit out the "in-door," dead bird in hand. Her chance for a quick exit was foiled though and she had to make a long walk of shame throughout the whole store in order to reach the proper exit. When she got home and told me the story I couldn't stop laughing. Finally she could laugh about it as well.

UPDATE: The bird whisperer was able to free our little friend. Good job Rachael!

The Culprit



Pretty Bird

Saturday, September 6, 2008

The Rabbit and the Eagle





Baby news. Let's see, they both spit up a lot today early on, Jack more so than Riley. Riley gained weight yesterday, Jack lost weight. They are getting more and more closer in weight these days. Digestive issues are becoming more of a concern for us. We also remain concerned about the secretions with Jack, obviously, but we have been more diligent with the nurses etc...in letting them know what is necessary for Jack's care. We are hoping Jack will start gaining weight again and that his digestive problems will resolve. Other than that, it was a fairly typical day for them.

Rachael told me the story about the Rabbit and the Eagle last night. See here. I think it is fitting for our situation. And even though it is hard not to be rabbits, we are doing our best.

White Rabbits

Friday, September 5, 2008

Jack = All Kraft

So thank you for all of you who voted that Jack is all Kraft. At times I really believe that, but lately, I have seen another side. I have seen a darker side. Dare I say, a Cornett side? We will see. I have a new poll now. I would like to turn all the baby excitement of Jack and Riley over to my brother's soon to be second baby. The newest Kraft is due very soon. The question is, will it be a boy or a girl. I'm hoping that it will be a little girl. You can check out their first born here.

Jack and Riley are safe and sound, hopefully sleeping and giving the NICU nurses a good night.

And just because they are one of my favorites, plus I love this song.

The Kinks, Sunny Afternoon

Don't Worry Baby

Rachael and I were able to speak with some specialists yesterday from outside the Clinic in order to get a second and third opinion on course of treatment. Both doctors that we spoke with agreed with the course of treatment they are receiving. I personally spoke with a doctor last night that was very knowledgeable about myasthena gravis. He said that it may be difficult for them to get rid of all the antibodies in their blood and that it will take some time. There really isn't a set time period. He said that once the antibodies are out of their system the improvement should be exponential. He said the fact that the babies have gained weight is important because it suggests that they have the ability to clear the antibodies themselves. If the antibodies are not being broken down sufficiently in time, then we may want to consider a transfusion, but at this point he agreed with all the other doctors that it isn't necessary.

The discussions with other doctors helped us out a lot in the sense that we know that we are doing what is right for them, and that we are doing all we can for them. So nobody can really say for sure how long it will take, but the good news is that once they are gone they will be fine. It could be a while, and by a while I mean months. I expect them to be there for a long time to come.

Jack is keeping us on needles and pins a little. Although he is doing fine, he needs a lot of attention to keep the mucus out of his throat. So obviously the most important thing is to keep him well attended while the antibodies are breaking down.

Riley is now 5 lbs 10 oz and Jack is 6 lbs 2 oz. So Riley has gained on Jack quite a bit, but Jack went down to 5 lbs at one point and has moved himself back up.

They both got new feeding tubes today. Unfortunately for them the are thicker and heavier. They got new tubes because they have the feeding going into the bottom of their stomachs to help bypass the severe reflux (also common with their condition) and it should help them with their weight gain.

Don't Worry Baby

Thursday, September 4, 2008

Day 44 (Who's Counting?)

This morning was without drama. Jack and Riley were both without dings. Of course nothing has changed either. We stopped looking for change a long time ago on a per visit basis. Just wanted to post something on here following yesterday's setback. By the time these two make it home we will have aged a thousand years. We have really placed all time expectations on a back burner for now. Who knows when it will be.

For the sanity portion of this blog, the portion where I can focus on something non-baby related and normal. I downloaded google's new browser the other day, chrome, and think I will stick with Firefox. I'm just not feeling Chrome that much, I really don't like it at all.

A lot of times I will use song names as titles, but I thought that Scar Tissue would maybe sound more like a medical issue rather than a song I have always liked. This song reminds me a lot of moving to Montana with Rachael. Same time period. Played it a lot on the drive out. 1999.

Scar Tissue

Wednesday, September 3, 2008

It's Called Gratitude

Sorry I had to subject everyone to today's post. I try to keep this blog as positive as possible, but today was too much. It would take much better a writer than me to detail the experience. What makes it that much harder is seeing my little man in such cute clothes following such trauma. It is quite the juxtaposition (I hope I'm using that word correctly). I'm going to leave today alone.

Rachael and I were back in tonight. The fight goes on. We will work with these two and give them every ounce of love we can to help them get better. This, as many of you know, takes advocacy, positive thought, and consistency. This is what we plan to do. Of course it is, and of course it will be. What is not lost on us is how grateful we are even in the bad times. Well, it may be a little lost at times, but we realize there is a balance to the negative, and that is an absolute positive.

Jack and Riley are going through a lot right now, and we can only hope they will get better someday soon.

For all of you who read this blog, we are very thankful for your prayers and support. Today's bad news was tempered with some very good news in the NICU. Our NICU friends had their two little girls go home today.

Our babies will have their day too.

New Lows at the NICU

(Jack Post-Episode)


Today was the worst day Rachael and I have had so far at the NICU. Jack had a very bad episode where he was choking on his secretions and had to be resuscitated in front of us. Sometimes he gets a lot of mucus down his throat that builds up and cannot clear. And even though he has been doing really well with his breathing/swallowing, today while he was in Rachael's arms he started going into a huge crisis and was unable to pull himself out. Actually, he wasn't even responding. We had to put him back in his little bed right away and the nurse suctioned him with the standard suction device that can only reach to the top of his throat. He didn't respond, so they then started bagging oxygen into his lungs as he turned an absolutely awful color of blue. This went on for about 1 - 1.5 minutes until they were finally able to get down there far enough to pull out all of this gathered up mucus. Eventually he started crying and slowly regained color. There were about three nurses and the doctor all working on him. Meanwhile Rachael and I were off in the corner absolutely freaking out. I cannot express how horrible this moment was, and we were both unable to compose ourselves for sometime thereafter. We are still trying to compose ourselves. Absolutely horrible.

They are considering placing their feeding past their stomachs and into their intestines to bypass some of the reflux issues. They may also started getting some medication to help clear up some of the secretions. We are trying to have the nurses deep suction Jack on a regular basis (live every 4 hours, regardless if he appears to need it or not). We are also going to talk to the doctor again about the pros and cons of transfusing Jack's blood in order to get the antibodies out quicker. Even though they have a transient form of the mg, they have it real bad, and exhibit symptoms more in line with a congenital form of myasthenias gravis. So it isn't your typical case.

After the whole incident it took a while for Jack to regain his color. The doctor informed us that their wasn't enough trauma to worry about any brain damage or anything like that. Jack was doing fine right after the incident and was acting as if nothing ever happened.

I hate to post bad news on this site, and try to keep it as positive as possible, but words cannot express what we experienced today.

Tuesday, September 2, 2008

Riley

Riley (Yesterday)



Riley (from 8/1/08)


Miss Bean


I wanted to post a photo from last month on here of Riley to see how different she looks today. Her color has certainly changed (not as orange). Her face also has filled out a little. Beyond that she is about the same.

I really have no baby updates. Still in the hospital, still getting bigger, still getting better, still yearning to meet their future friends Hank (currently on vacation), Willis, and Miss Sequoia Bean herself (photo above).

Here are some random clips from movies I have been thinking about lately. You probably only know them if you grew up with HBO.

Saturday the 14th (Randomly thought of this movie the other day)


Midnight Madness Clip (another HBO favorite)