Thursday, October 30, 2008

Mummy's Girl

Did someone say my brother is coming home tomorrow?




The Mummies, You Must Fight to Live on the Planet of the Apes

Home Sweet Home

Jack is coming home tomorrow!

Wednesday, October 29, 2008

Photograph

Here are some random photos of Riley from a few days ago. She is doing well. Just waiting for her brother to come home soon. We are still on track for Jack coming home at the end of the week. He continued to take exactly what was asked of him each time he ate today. Pretty cool. I think Jack has been in the hospital for 99 days as of today...






Photograph, Def Leppard


Also, this is a pretty cool video of Bill Callahan (smog) playing River Guard. Great song, even better when it isn't being played in the back of a moving cab.

Keep on Growing

They didn't weigh Jack last night, but he took 70 cc or more during every feed yesterday. This is exactly what the doctor wants to see from him. Jack got one of his series of shots yesterday. The nurses are all starting to talk about his impending departure. We have been told on numerous occasions that we will have to bring him back for a visit sometime. We are hoping to get him home by the end of the week. It looks like Rachael and I will have our hands full this weekend. Crazy. Nobody would have predicted this a week ago.

Keep on Growing, Derek and the Dominos

Monday, October 27, 2008

It's the Final Countdown...

Big news continues for Jack. Today the doctor indicated he wanted to watch him over the next few days and if he gains weight and continues to feed well he is coming home. Quite a surprise to us, as you can imagine. The one thing that might hold him back is his foot surgery. If the foot doctor wants to operate on him soon, then we will keep him at the NICU so he can do the surgery and recover at a place where he is already known. Otherwise, if he feeds well and gains weight, he should be home by as early as this weekend. Crazy.

video

Europe, The Final Countdown

Sunday, October 26, 2008

Tube


Just heard that Jack, following in his sisters footsteps, pulled out his feeding tube last night. The good news is that, as of now, they aren't putting it back. They also turned off his oximeter (don't know how to spell it and too lazy to look it up). Rachael and I all know these as signs towards going home. Of course, we are quite aware that Jack man may have his tube back by the end of the day, but for now, we will enjoy the good news. Also, that means we can finally get some good photos of him without a tube coming out of his nose/mouth.

Phish, Tube


Phish, 1st tube

Take A Bottle, Drink It Down...

Pass it around...said no L-O-I-T-E-R-I-N-G Allowed...

So yeah, Jack took a full bottle last night. That's 75 cc to you and me Rusty. Good job Jack...there is a whole world outside waiting for you.

Crazy Mary, Pearl Jam

Saturday, October 25, 2008

Pigs



Jack took 65 cc last night. Oink Oink little man, oink oink. Rachael and I are really impressed and surprised by Jack's new found ability to bottle feed. All you have to do is see the post from about a week ago where we were convinced that he would need a G-tube. The doctor was convinced of that as well. I'm guessing the recent turn in events will convince the doc otherwise.

Pigs

Friday, October 24, 2008

A New World Record!

Today was an exciting day for Jack. Jack smashed his feeding record and took 60 cc for me today. My only regret is that I wasn't able to get him to take the whole damn bottle. We were close, only coming up 15 cc short. This is a big step for Jack who is recently proving himself as a contender for non-nicu life one day. Good job buddy. Maybe you won't be little G-Man after all...

In other news, Riley went to the dermatologist today for her ear. The doctor decided to do some laser surgery on her and zapped her ear today. I guess the laser surgery will help reduce the hemotoma (or however it is spelled) that she has on her ear. I'm glad she is getting some treatment for her ear and hope that it will start to get back to normal sometime soon. We will see.

Thursday, October 23, 2008

3 Months Old...

Jack and Riley turned 3 months old yesterday. I would tell you if they are meeting their milestones, but I haven't looked into it. I guess Jack's first milestone will be leaving the hospital...in that regard he took 25 cc today without any problems. But Brian, you think to yourself, isn't 25 cc even less than an ounce? Why yes it is, but when you have a baby that has a borderline oral aversion and has never really fed from a bottle, I would say it is quite the step. So yeah, Jack is making, dare I say it...progress! Though slow, he is making his way to the part of the tunnel where one could possibly see light. Come on Jack, it really has been too long...it is starting to bug me a little.

Riley is living the life. No problems with her, just catching up for lost time.

I am trying to update this blog as frequently as usual, but between putting criminals in prison, taking care of Riley, and nightly visits to the NICU, I am a man with little time. And what makes it more difficult is that the time that I have is generally time spent with only one free arm. So I will continue to do my best to update this blog on a daily basis.

Wednesday, October 22, 2008

G-Man?

We had our "care conference" for Jack today. We met with the doctor, social worker, nurse representative etc...to talk about Jack and his future. Right now the plan is to see how he does over the next week. The doctor wants to do another barium test next week to make sure that Jack's stomach muscles are working properly to move the food through his stomach. If the stomach is working properly, the next concern is the muscle at the top of the stomach and determining whether or not that muscle is working properly to prevent reflux. It is clear that Jack has reflux issues, I guess a lot of babies do, but his reflux may be a little more severe than your average case. If the muscle isn't working properly then we would consider an additional surgery on that muscle so Jack can keep his food down properly. However, this isn't something that we are at all close to considering and don't even know if there is a problem with this muscle...in fact Rachael and I are opposed to any surgery on that muscle at this time. This is especially true considering he still has a muscle disease that is likely the source of some of these reflux issues. I'm rambling a little...anyways, we will also get back on track towards introducing the bottle to Jack more often. Rachael fed him tonight and he took 9 cc, which is nothing, but for Jack it is a start and we are happy that he was able to take that much. Apparently he was pissed when it was taken out of his mouth. Quite the complex little child.

Ultimately, what is likely to happen, is that Jack will get a G-tube placed directly into his stomach. This isn't set in stone, but it is a good possibility. If Jack gets the G tube he will be able to come home sooner and Rachael and I can work with Jack and his feeding at home. When Jack is able to do the feeding completely from the bottle we would remove the tube and he would have a small scar on his stomach. Come to think of it, by the time he gets out of the hospital he will have a series of scars. sucks. Another bummer is that he would have to go under general anesthesia again (though we now know he can handle it).

Rachael and I realize that the G tube is likely the best way to get him home sooner than later. It isn't good for Jack to be in the hospital forever and we need to get him home so he can get accustomed to home life. It will definitely be better for his development and I'm sure once he is home Rachael will likely hold him non-stop for months on end.

Riley, the other child, remains good. We are getting used to having her home. No news is good news.

Monday, October 20, 2008

Ear Candy


Riley went to see the doctor today. This was her first scheduled appointment with our pediatrician. All went well. Riley is 7 lbs 9 oz now. Apparently a lot of people commented to Rachael about her "new born" baby. We are also getting Riley to a dermatologist for her ear. In case I haven't mentioned it on here before, her ear thing is not a birth mark it is some sort of weird growth that grows then goes away. Apparently it has a lifespan of a year or so...I'm not doing a good job of explaining it, but what the hell. Bottom line is it isn't a birthmark and it will someday go back to normal.

Jack was a little better today. Still was coughing a lot but no barfing or spit ups. We have a "care conference" tomorrow, so we will map out a plan for the little guy.

video

Sunday, October 19, 2008

Chubby Jack

Jack did okay today. Pretty much more of the same. He is a little "junky" today, but seems to be better at clearing the secretions. I feel like I have written that a thousand times. He didn't spit up/throw up at all today that I am aware of. Hopefully the surgery worked in that regard.

Here are some videos that Rachael took today.

video

video

Saturday, October 18, 2008

Sunny Afternoon



Is it sunny out? Who would know. Riley is doing well. She barfed last night, a big barf actually, which was a mini highlight of last night. Beyond that her feeding has been going well and we haven't had any problems with her home. We are slowly getting adjusted to having her home. It's hard being a baby entertainer sometimes.

Jack man is doing better today. He had a really rough day yesterday. I just talked to Rachael though, who is at the hospital, and she informed me he is in better spirits.

video

Kinks, Sunny Afternoon

Thursday, October 16, 2008

Another Day, Another Impending Surgery

The news of the day is that Jack now has a cast back on his leg and the doctor is planning to operate on his club-foot in about 4 weeks. So much for the whole "it's not a club foot" piece of bull we were fed about a month ago. And so much for the one break Jack caught in his young life so far, the possible non-surgery/no-casting of his little foot. Whatever...

Jack is off the ventilator now. That is good. He isn't full strength yet, but is doing okay. He was dipping a little today, which sucks, but we are hoping that will go away over the next few days. He has been able to tolerate his feeding thus far which is a change.

Riley is doing good. Gone are the days when she would take 70 cc a feed. Now she regularly takes 100-120 a time. Little porker, little porker...We spend our nights on the couch together watching tv and listening to music. We have her first doctor appointment on Monday. Hopefully we like the doctor, because we have realized how important it is to have a doctor that you can trust and have confidence in.

Wednesday, October 15, 2008

Jack's Surgery (The Kid is Alright)

Jack had his surgery today at about 10:30. Rachael and I got to the hospital around 8:30 and hung out with the little man for a while. The pastor came and did the baptism for Jack. Not exactly how we imagined Jack would be baptized, but we will do it over, or get his baptism affirmed, at another date with his sister. It is kind of a bummer to have your baby baptized in the hospital, but it was still nice for Jack to have a special moment.

At about 10:00 they put Jack on a ventilator for his surgery. This too sucks, because they have to jam a tube down his throat. Once the tube was placed we all wheeled Jack down to the first floor for the surgery. Rachael and I sat in the waiting room and suffered through an episode of the View. Wow. That show really isn't meant for a 31 your old male's viewing pleasure...painful. After about an hour and a half the doc came out and told his that Jack did a good job. The surgery went well and Jack didn't have any problems.

Rachael and I then went to see Jack. He has three little incisions. He has one on his belly button where the camera went into his belly, one about an inch above the belly button (3 mm wide) and another that is an additional inch higher and of the same size.

As of 7:00 p.m. Jack is still on the ventilator. Although he has come out of his sleep for brief moments, he still hasn't been wide awake yet. Once he is wide awake they will remove the vent and see how he does on his own again. Hopefully that moment will come sooner than later, but like all things NICU there is never a definite time table.

We are hoping this is the corner for Jack. Hopefully with his new stomach in working order he will be able to keep his food down and start bottle feeding. We will see.

Riley is doing well. We are finding out so much about her lately. Apparently her hobbies include eating, sleeping, pooping, and crying. Who knew?

The Kids Are Alright

Tuesday, October 14, 2008

Good Luck Jack

Jack is all set for his surgery tomorrow. He will have his surgery at 10:30 a.m. Luckily I was able to get the day off. Rachael received a call this afternoon asking her if we would like Jack baptized before the surgery. Kind of freaks us out, but it looks like he will get baptized tomorrow morning. I figure we can always baptize him again with his sister some time down the road.

Jack is getting any food right now so he is a little fussy. I saw him tonight and he was doing pretty good. He actually smiled a few times for me when i was tickling him. They were real smiles too.

Riley's first night was another sleepless one. We have some adjusting to do, but are really happy she is home. She is sleeping right next to me on the couch, just chilling. Hopefully she can sleep a little more tonight, but we doubt it. You don't realize how much attention they require until you get them home. It seems like you have to feed her all the time. And if you are not feeding her you are trying to get her to sleep or giving her a bath etc...she takes up a lot of time. Pretty cool though...

Monday, October 13, 2008

Jack Man (Impending Surgery)



Jack is scheduled for surgery on Wednesday morning at 10:30. Turns out he has Pyloric Stenosis I really wish little man Jack could catch a break. Doesn't seem like he has caught one yet. The operation should only take about a half and hour but they will have to put him under and he will be on a ventilator during the procedure. He will also likely be on the ventilator for about a day or two following the operation. Rachael and I really do not want to see him on a ventilator for the obvious psychological reasons. His recovery should be fairly quick though, a few days or so...Also, once he has the operation we are hopeful that he can start getting on track towards bottle feeding.

In other news, Jack has become addicted to his pacifier. So much for the thought that he has and oral aversion, he acts more like he has an oral fixation lately. This makes his parents very happy.

Will keep you posted with all the details of what will for sure be a crazy week.

GBV, Surgical Focus

Photos







Welcome Home Riley!

Riley had many firsts today. She saw sunlight for the first time. She breathed the outside air. She came off the third floor for the first time. She took her first car ride. She left Cleveland for the first time. She met her two cats for the first time. And she finally saw her home for the first time, 83 days following her birth. Right now she is sleeping beside me in her car seat and Rachael and I are absolutely puzzled as to how to take care of her. Quite a learning curve ahead for all of us. So far I think she is happy to be here.

Many photos will follow later today (during the Browns game) as well as Jack's portion of news from today. I will keep his post separate...

Until then, here is a song/video that Rachael and I think has the perfect chorus for today's events.

Silversun Pickups, Lazy Eye

Mama I'm Coming Home

Sunday, October 12, 2008

Saturday Night Fever

Rachael and I both stayed overnight at the NICU last night. I swore I wouldn't get sucked into such a thing, but once I was there I manned up and became do-right-daddy. Riley got a fever last night (likely from her vaccination received earlier in the day) and was up all night. If this is what normal parenting is like, we have a long, long, road ahead. Damn. It isn't easy being responsible for a crying baby all night. I can't imagine what it will be like someday to have two of them home. Needless to say Rachael and I are literally running on empty now. Up all night. Riley will not go to bed unless she is in your arms. Once you have her in your arms she falls asleep. As soon as you go to put her down, she wakes right back up, glares at you, and continues to cry again.

The doctor said she is set to go for tomorrow.

Jack had a good night. He gained weight, didn't puke at all and had no suctioning issues.

Jackson Browne, Runnin on Empty

Saturday, October 11, 2008

Third Time's a Charm!

Very good news today for Riley. Riley passed her hearing screen. Who cares, some of you may be thinking to yourselves. Well, considering she didn't pass the first two attempts, and Rachael and I have been super worried about it for months, it is excellent news to see her pass today. We were dreading this test, and knew that she would get it before coming home. We saw the hearing lady come into the NICU today and were very nervous, but alas she actually passed. Our little Riley can hear after all. Thank God. We are so tremendously thrilled with the news. I can't even tell you...

So Riley is still on track for her homecoming. Awesome.

In other news, Jack was hanging tough today. He has been good lately, but now they suspect he may possibly need a stomach surgery to fix his throwing up problem. We will know for sure on Monday/Tuesday, but the good news is that the surgery is apparently very safe, and if he does need the surgery it will fix the problem. We are happy for any problem that is correctable. More news on that front later.

A sampling of music that Riley will be introduced to early in life.

Joanna Newsom


More Joanna Newsom


Oh Comely, Neutral Milk Hotel

Friday, October 10, 2008

The Final Stretch (Riley)



We are still hoping to have Riley home on Monday. If all goes well that will be her discharge date. One thing she has to learn before she comes home is to not poop on her dad any longer. She let out a big one today, so big it escaped her little diaper and got all over my leg and shirt. Nice. I still love her though.

We got back our most recent blood test for Jack. His antibody number is now at about .85. That is great news. Much better than the last blood test. The doctor took him off his Mestonin completely today. He is still puking though, and they are still trying to figure out the source of the problem.

video

video

Ratatat, "Shempi"

Friday Morning

Riley is completely off drugs and doing fine. The withdrawal was a little difficult. You know, the hallucinations, sweats, and shakes, but she is happy to be drug free again. It's like she has spent her entire life on drugs.

Riley continues to eat well. Two days ago she gained about 2 ounces, but yesterday she lost one gram. I don't think the doctor will be too concerned about losing one gram. He better not. Riley is basically all set to come home. We are planning on her departure sometime Sunday, Monday, or Tuesday. That's the goal.

Jack man is still being barf-man. I had a dream last night that he was about 30 lbs, but still a baby. Weird. Anyways, he is doing well in some departments (the dipping department) but again, the pukes are concerning. If for no other reason than it is something I don't want him go through.

Oh yeah, they reduced Jack's Mestonin to 2.5 mg every 8 hours. I don't know what they are trying to accomplish, but I guess they need to try new things.

Wednesday, October 8, 2008

Wednesday

Riley is on a reduced amount of Mestinon now. She is doing good. She is now on the monitor that she will come home with. We are making the steps to get her home, doing all the final things. I think her target day is Sunday, but like everything that is subject to change. Rachael is going to do her sleepover at the NICU on Saturday night. This is optional, but she wants to do it. I told her that I'm not really into sleeping at the NICU so we will see what happens as far as my involvement. I want to be a good husband/father, but the thought of staying over there kind of bugs me. Especially since it is optional and I feel pretty comfortable taking care of Riley, this being close to 80 days deep into her life.

Jack had a decent day. He is still Mr. Barfman, but he isn't going into his secretion dips lately. That is good. They repositioned his feeding tube in order for it to dump into his belly and not his large intestine. I don't know how this is going to change anything, but we will see.

My writing has turned a bit sour lately. I apologize for that. I'm just trying to jam out the facts here.

Tuesday, October 7, 2008

Baby News

Yesterday they put Riley on a different formula. She was put on a formula that was without the rice, a formula that isn't so thick. This experiment failed. Riley likes the rice formula better and can tolerate it more. Bottom line, she is back on her original formula. She will likely lose weight today due to her bad feeding day, but that shouldn't set her back. Rachael is going to her baby-monitor class tomorrow. Rachael requested a monitor for Riley and the doctor granted her wish. We also have been asked to bring in a car seat for little Riley. Car seat time, in NICU circles, is a big deal. It symbolizes home. So the car seat test is coming soon, as is Riley's departure. The doctor will be taking her off the Mestonin as soon as tomorrow. He wants to see how she does off the Mestonin for a few days, and then who knows...maybe we will have her home on Sunday or Monday. Maybe not, but sometime close to then is what we are thinking. Maybe she will sit with me on the couch come Monday night and watch the Browns get their ass whooped.

Big boy Jack had a good day minus a few pukes. He is getting noticeably bigger these days. Fat Man Jack, coming in at 7 lbs 12 ounces (I think). He is big, believe me. He is also longer (taller if he stood up). He was pretty much clear of the dips and dings today and seems like he has stabilized a bit from last week. Keep looking for the corner big guy.

That's about it for now.

Monday, October 6, 2008

Sad Day (Non-Baby Related)


Rachael and I learned today that our friend Andy Shorter passed away last week. Apparently he suffered a brain aneurysm. I had a message on my voicmail from Neal dating back to October 1st, but didn't hear it until today. Definitely the most talented and original person I have ever met. We are totally bummed. You can check out his myspace page here. You can hear some of his music on his webpage.

I don't know how many of you who come to this site have ever met Andy, I'm guessing maybe only one or two, but for those of you who did know him, I'm sure you would agree that he was a really amazing person.

Jack and Riley both had good days. They both gained weight. Riley is still on track to come home soon.

Sunday, October 5, 2008

41 Grams!



Jack continued to do well today. No dipping and just chilling out. He was up all day. Sometimes I think he has insomnia. Not really.

Big news for Riley. She gained 41 grams today. That is a little over an ounce. Of course this is big news because it brings her closer to home. Hopefully the doc can start talking discharge tomorrow. By discharge I mean giving us a target date of departure, not sending her home tomorrow.

Oh You Pretty Things (Is there anyone greater than Bowie?)


No, there is nobody greater than Bowie. That was a rhetorical question.

More Bowie, Ashes to Ashes

Telegram Sam



Telegram Sam is just a great song I'm listening to now and has nothing to do with this blog. T-Rex. Great band. Anyways, Jack is having a great day so far, no dips, and he is just chilling out and enjoying life. Riley gained about half an ounce and is kicking ass. I think we will have her home soon. I have been making arrangements around the house and getting prepared for a change of lifestyle. I can't wait to introduce her to the neighbors. Rules.

Also, as you can probably imagine, I have been thinking of all of these different songs to go with Riley's departure date. Of course there are another set of songs for Jack's eventual departure. I'm thinking "tonight there's going to be a jailbreak" song, whatever the title is, "home sweet home" "mama I'm coming home" etc...there are so many. The one that is really in my brain lately is Lazy Eye, by Silversun Pickups. You know, the chorus, "I've been waiting, I've been waiting for this moment, all my life..." anyways, this is all dribble...rambling rambling rambling...

Oh yeah, Jack's "party hat" will be removed by the end of the day.

video

Telegram Sam

Saturday, October 4, 2008

The Not So Incredible Shrinking Woman Part II

So it turns out that Rachael and the nurse had some sort of mix up on the phone. Riley lost 3 grams, not 3 ounces. That is a very big difference. So no new tube for Riley and she is still on track. Jack isn't having a banner day. He keeps puking and seems to be stuck in a funk. Sucks. Hope he gets better soon.

The Incredible Shrinking Woman

Riley lost 3 ounces yesterday. Lame. That isn't really proving yourself that you can do it on your own little one. They still haven't tubed her though. I guess they are still giving her a chance. Jack had a good night. He just barfed a few hours ago, but other than that he has been good. Oh, and I guess he has an IV in his head now. Great. Come on people, does he really need a F@#$in IV in his head? Stupid, stupid, stupid...

The Incredible Shrinking Woman (Condensed Version)

Friday, October 3, 2008

Friday Night

Jack continued to have a good day today. He needed a little break from all the bad times. Hopefully he can get back on a good streak for a while. Riley is hanging tough as well. She took a bunch down for us tonight but then barfed it all up. I hope that isn't a sign of things to come. Only time will tell. Not much of an update, I know, but all that really needs to be gained from this post is that Jack had a good day...at least as of 8:49 p.m.

Friday Morning

Jack had a decent night. I guess he had one big dip that needed a lot of suctioning but no bagging or anything. other than that he was decent. He keeps gaining weight at a steady rate which is somewhat odd considering how nothing else seems to be going well for him. He was up another ounce today, so he must be close to 7.5 lbs. Riley on the other hand only gained one gram. One gram? Yes, one gram. She is taking what is asked of her though, so maybe they should ask her to take more. I will send in the Mrs. with some talking points this morning.

Thursday, October 2, 2008

T Minus X and Counting

The good news of the day is that Riley still has a chance of coming home next week. The doctor didn't force the tube on her and is still giving her a shot. She gained a few grams last night, and is doing good. They increased her calories to a 30 calorie formula up from 28 calorie(a normal formula is about 20 calorie) and is hopeful she will be able to sustain herself on her own. As long as she continues to feed well, and hopefully better, and gains some weight, the doctor told me that he is trying to get her out the door next week. Of course, like all things NICU, this is subject to change. We are hopeful, but keeping it all in perspective.

Bad news, Jack is still struggling today. I talked to the doctor this morning and raised our concerns about the Mestonin increase. At first he wanted Jack to ride out the 5 mg Mestonin throughout the weekend, but changed his mind and reduced it back to the 2.5 mg dose. We will see if it helps cut down his secretions like Rachael and I hope. We want Jack to stop puking and having difficulties with his damn secretions. That is what we are most concerned with.

Wednesday, October 1, 2008

Riley Photos

Though all of our concern is with Jack tonight and his increased secretions and recent bad times, I only have good photos of Riley to share. I feel kind of bad giving Jack the short end of the stick, but I will post a bunch of him later.

Jack had another bad day/night. He was receiving constant suctioning which Rachael and I believe is a result of the increased Mestonin. I'm going to talk with the doctor tomorrow and let him know our concerns. It really sucks to see Jack start going backwards all of a sudden. I will just leave it at that.

Riley is still working on her feeding. She was doing well today, but still dangerously close to getting the tube put back down her throat. I won't be surprised if Riley gets her tube back tomorrow. Most likely they will tube feed her at night and let her bottle feed during the day until she is strong enough to do it all on her own. We will see. In the meantime, enjoy some photos of Riley without her tube.






Morning News

Jack puked a bunch last night with his care. The doctor had discontinued his Pepcid the day before. Maybe not such a great idea. He continues to gain weight though, now up to 7 lb 4 0z. Riley on the other hand is down another 8 grams, not too bad of a loss, but not gaining like we need her to. She took 35 cc with each feeding through the night. I guess she doesn't realize there is a world out there waiting for her. She is close though.