Thursday, March 31, 2011

Now hear this! Now hear this!

We are getting the heck out of Dodge! That's right. As of tomorrow, JHH will be a mere memory in our lives. Well, ok, not exactly. We'll still be there quite often for appointments, check ups, etc. But it will no longer be our home. Of course, our home still won't be our actual home yet either - Mt. Washington will be.

Yes, Rambo is moving on up! Broken heart, no biggie. Messed up lungs, whatever, he's got this. He's got tiger blood. He's gonna wrap both arms around Mt. Washington and love it violently through violent hatred. And then we'll be home in no time.

There was literally weeping and gnashing of teeth in the NICU today. Nurses were sobbing, babies were wailing, everyone was in an uproar. Chaos was rampant - their hero is leaving. And there Rambo laid, asleep, completely untouched amidst the havoc he was causing. He exposed them to magic and for that they will forever be grateful.

I do have pity already for the nurse that's going to get stuck with us for 8+ hours a day when we get home. I mean, we're pretty cool people but let's be honest, this could be a nightmare. At least they'll be getting paid to put up with Ben - I get nothing.

So we bid farewell to you, NICU. It's been real. It's been fun. It's been real fun. But now, we take our bow and exit to stage left. Or stage right. Whichever gets us out the door quickest. No encore please. We do not want to come back.

This blog was made possible by Charlie Sheen and viewers like you.

Monday, March 28, 2011

It's a hard knock life.






He's just so stinking cute.








Hi. My name is Amanda Taylor and I am a geriatric self-loather. It's true. It's hard to admit, but it's true. Not so much because of the number of my age but because of the lack of accomplishment I feel. Although, I can't lie, for about 5 years after the age of 17 I cried at every single birthday I had. No, I don't know why. I guess 17 was just a really good year for me. But to that I couldn't even say why - I can't think of anything that happened that year that's of too much significance. I'm just a nutcase. But I do have a point, so stick with me if you feel like going on a self therapy session.

As I was saying, I tend to feel like I haven't accomplished much. Not enough to be an adult anyway. The numbers and the accomplishments aren't adding up. So this week when I did actually feel accomplished at something I was really proud. I've been doing the hospital thing by myself for the past several weeks and in that I've become more independent, more outspoken, more confident. All good things. But it wasn't until I was taking care of my son in a room filled with nurses that it hit me. Rambo was throwing a fit and they handed him over to me to settle him. And I did. I knew what he wanted. Now, I know those nurses would have eventually calmed him down. They are good at what they do. BUT, I wasn't intimidated by them. I wasn't standing there thinking that I was in over my head and it should be one of them here with Rambo getting him settled. What if I couldn't calm him down and looked like a silly fool? That is how my mind would usually work. So, as I'm standing there with him I felt very proud of myself in a way that I never had before.

Yes. I am an adult. I am capable. But I'm also aware that my husband is at home getting homemade lasagna from Ashley. And other people are sitting down out to eat with their entire family. Some people even have time to breathe without having to juggle a million things at once. And I find myself thinking like a 5 year old, "When is it MY turn????" in a really whiney voice. For the first time I actually feel like an adult but find myself thinking like a child.

I've said before it seems the grass is always greener. Maybe with success always come sacrifice. Maybe with every accomplishment there's compromise. Or maybe life is just a circle, vicious at times, that keeps bringing us back to our humble beginnings reminding us that we're only as good as the journey itself. Or maybe I'm just screwed. (You thought I was gonna be all deep and philosophical. You should know better.) I'll take the pride and confidence of age with the innocence and energy of youth. And hopefully my fear of adulthood won't loom over me much longer.

 



I will say that this ------>
makes all the homemade lasagna and dinners out worth missing.








I leave you with these words of inspiration: "Ain't about how fast you get there. Ain't about what's waiting on the other side. It's the climb." - Miley Cyrus
She's gonna be famous one day.

Goodnight, America.

Friday, March 25, 2011

It's all about the Benjamins, baby.

One hundred. What's so special about that number, you ask? Well, I just so happen to have an answer. For starters, it's the number of vocal sounds that a cat has. It's also how many zeros you need to make a googol, the number of surnames accountable for 85% of the Chinese population, about how many earthquakes occur in a year that cause damage, and the dollar bill that Benjamin Franklin is on.

It is also how many days old Rambo is today. One hundred. I can assure you this is not how I thought I would be spending one hundred days of my life - ever. I can also tell you that they have been the best of times and the worst of times. We've encountered everything from him literally almost dying right in front of us to watching him blow huge snot monsters out of his nose. The respiratory therapists love it - seriously, they do. They use whats called a 'neosucker' to suck mucous out of the mouth and nose. I'm not gonna lie, once you've used it enough it becomes addictive. And this boy creates some serious secretions. Ben and I will be sitting there watching and waiting for him to blow some bubbles so we can fight over who's going to suck it up this time. And the sound, oh the sound. Pure bliss. You may cringe now, but I think this is an untapped market in the outside world. Imagine how many kleenex you could save. Imagine not having to use toilet paper to blow your nose when you run out of kleenex. Imagine no more dry, raw noses. Imagine a better world!! Say it with me "Neosuckers for everyone!!"

.....I don't think this was my point.

Ah, yes, 100 days old. So I threw a little NICU party. We made mini cupcakes for the nurses and staff (funfetti of course - who doesn't like funfetti? If you don't, please restrain from reading the rest of this and never check my blog again. Because funfetti is AMAZING.) The icing almost got the better of us, but with my mom's and my brain combined we overcame. Then we brought Rambo a pinwheel to look at and a lollipop to enjoy. It was a great celebration. Except Theodore slept through almost all of it. Waking up only enough to show us that he hated the pinwheel and lollipop. Figures.

  It's a good thing he's cute.

They are trying him out on the 'trach collar'. It doesn't give him any breaths or pressure. It purely humidifies the air and makes it readily available for him. He is on this full time as long as he tolerates it. This evening when we left he was doing very well. He is very close, barring any unforseen incidents, to no longer being an intensive care baby. Yay! 100 days in, maybe he's getting sick of this place too. Little slow on the uptake, Theodore?? :)

I'm hoping to not celebrate anymore age milestones away from home. But if we do, there will certainly not be any lollipops for him.

Thursday, March 24, 2011

Maybe the dingo ate your baby

The past 2 days have been really good for Rambo. Yes, I've risked it again by saying this. I just can't seem to learn my lesson. But he's been so darn cute that I had to share. He's moving all around, grabbing things, kicking his legs. I laid him on his back and he rolled onto his side. Crazy man. He can't make any noise but if he could he totally would.

All the nurses come over to say hi and flirt with him. He's pretty popular. And they all say the same thing. Well, the same 2 things: "Look at that hair!" and "If it's gonna happen to anybody it's gonna be him. Poor boy can't get a break." But it appears the past few days he has caught a break - finally. The only trouble he's had is the hiccups.
He's been moved back to a crib and holding his temperature very well. Not too high and not too low. He's being fed and they have actually started compressing his feeds today. Which means instead of continually being fed, he's getting a larger amount of food for 2 hours and then nothing for 2 hours. They are trying him full time on CPap and off the vent completely. If he does well then he gets to try out a trach collar. He has 7 more days on his antibiotic given through his central line. All his other medicines are given through the G tube so he can get that central line taken out as soon as he's done the antibiotic and not risk infection anymore. In other words, we're getting closer to coming home :)


He's made so much progress the past few days it makes me wonder what he's got in store for us next. Hopefully only good things.

He has thoroughly enjoyed his bouncer and I've gotten to hold him as well.
Be jealous of the hair. It reminds me of something from a movie but I can't quite think of what it is. Any ideas? Whatever it is, it's amazing.

Tuesday, March 22, 2011

Highway to the Danger Zone

You know you've been away from home too long when your daughter forgets where the bathroom is. Also when your cats go ferrel again and start peeing on your countertops.

That being said, it was a good weekend home. And Ben being home almost full time helps to keep the cats in order. He will chase them down and spank them if needs be.
We have three cats. Three. We are the crazy cat people, Lord help me. It's true. Maverick was the original and he's pretty awesome. Well, he WAS awesome and then he got the special 'snip' and turned not so awesome. Who can blame him though? But since we've been gone he has decided he does indeed love us and has returned to his original awesomeness, and quite possibly beyond. Goose is number two. Goose is mine. Goose is the master of his outside world. He will hunt you down. He will win. And when he comes inside all he wants to do is sit in your lap and try to purr. In reality, his purr is more like a very large man breathing very fast. It is seriously so endearing. However, since we are hardly ever home he comes around maybe every 2 weeks or so for some food and some love and then leaves again to reclaim his position as King Goose of Cordova. And then there's the last and the least (I don't mean that, Ben......)- Tom Cat. This poor poor kitty. He is so dumb. We seriously thought maybe he was a turkey when we first got him. He's also the one that has now decided my counters are good litter boxes. This is weird to me. What about a countertop calls a cat to pee on it? Then again, maybe I'm looking at this the wrong way. Maybe the real question is What about a countertop calls a turkey to pee on it? I'll think about that and see if I have any insight. I'll let you know.

So I guess our being away does have some upsides. All the cats are super loving when we're home. Is it worth the dirty countertops? No, not really.

What does this have to do with Rambo? Nothing. But thanks for sharing in my little detour. No one tell him and he'll never know. As far as the cats, if you're ever in Cordova and find one that gobbles like a turkey, shoot it and put me out of my misery.

Friday, March 18, 2011

These are a few of my favorite things....

And not so favorite things. For instance, this entire past week or so. It's really weird that now Rambo is 'stable' and is not in as dire conditions as before, I'm more done now than ever.
Last night, Ben and I had a chance to get out together for dinner and a concert. It was great. We went to dinner and stuffed ourselves, enjoyed the nice weather and were pulling into the parking garage of the arena when my phone rings. It's a surgeon from JHH telling me they were taking Theodore into surgery that night because his infection had caused an abscess and it needed to be removed. He called it "semi-elective". In that it wasn't emergent but it needed to be done sooner rather than later. Great, thank you. Now I can really enjoy myself. Check off another surgery. That makes 5. Plus 5 infections. That's almost a surgery or infection for every week of his life.
That's just a glimpse at what's been going on. Dealing with people, being away from home, dividing our time; it's all gotten very very old. 

So, I've decided to not let the little things get to me (we'll see how that goes); to focus on the things that make me happy as opposed to dwelling on all the...... we'll say 'other stuff'. For posterity's sake, of course. Here are a few of the things that make me relax and take a deep breath and smile: flip flops, a good #2 pencil, Ruthie's laugh, windows down in the car, the smell of diesel, having coffee with a few certain people, picking at peeling skin, Emma's 'accent' (in all reality it's most likely a speech impediment - it's not like we're from anywhere, but still, I call it an accent), a nice new pair of jeans, plucking my eyebrows, Israel's desire to learn, the smell of fresh cut grass and the scent right after it rains, brushing my teeth, and a good long run. And last but not least - Rambo's smile. He does have one every once in a while and today was one of those days :) It amazes me that after all he's been through he just keeps smiling, just keeps smiling, just keeps smiling... Sorry, I got lost in the world of Nemo there for a second.
Now I'm going to bombard you with pictures of his wonderful self. Enjoy as much as I do :)

Wednesday, March 16, 2011

Don't get me started.

Today was not a great day. Rambo has yet another infection that they believe is staph of some sort. They are still waiting for the cultures to grow and specify kind then species, then blah blah blah. Anyway, he's on a gammit of antibiotics again with an IV in the OTHER side of his head - bye bye more hair. They believe the infection came from his PICC line (it's a more permanent IV). That's 2 for 2. The last time he had a PICC in he got a blood infection. Here's the real kicker - they need to put ANOTHER one in to give him fluids and medicines because a regular IV can't handle all of it. Vicious cycle?? I think so.
I got to see him struggle and be in pain for the majority of the day today. Lucky me. He got moved back to the warming bed because he was actually cold. His temp went from very very high to very low (See, I told you this would happen. It's not quite anthrax, but it's the same point.) He was in a crib for a whole 3 days. The problem with the warming bed is that it makes him too hot so he sweats and that cools him down too much. It's a fine line to walk with this boy. He was purple and white mottled, his eyes were red and swollen, his eyelashes were stuck to his eyes, both hands and all fingernails were purple, etc. They had to stop feeding him because he's not digesting anything and he's back full time on the vent.
I'm starting to think that he must think the goal is somewhere behind us.
Once his temperature was more stable he did definitely start to pink up and seemed much more comfortable. I keep saying I know he's a boy but pink is a much nicer color on him than blue. He even threw a few smiles out at me before I had to leave this evening. And, in brighter news, I changed his trach for the first time today. It was definitely a daunting task to think about and have placed before me, but now that it's over it's not such a big deal. But not so much not a big deal that I want to do it on my own anytime soon. I'm actually considering bringing an RT home with me just in case something goes wrong they can fix it.  I wonder what the going rate for one is - maybe insurance will cover it....

BUT all this is just a side note to what I really wanted to say. One of my biggest pet peeves, and I could be wrong, but I'm not. I will preface this by saying that no one has actually said this to me throughout this trial (so good job friends and family), but I have seen and heard it far too often lately. Thus begins my diatribe:
"God will never give you more than you can bear." I'm sure we've all heard some form of that at least once in our lives. Okay, people, you might want to sit down now because that's NOT TRUE. There's a whole lot of wrong going on in that statement. Firstly, because the Bible never says that. Secondly, because what that statement implies is that we don't have a need for God so it's kind of a moot point to offer that up. In fact, the Bible says the exact opposite in several places. And really all that statement does is make you feel more depressed and guilty and overwhelmed and shameful that you are already feeling depressed and guilty and overwhelmed and shameful. So the next time you feel the need to say something factually incorrect and completely disheartening then this is for you. But if you actually want to be encouraging then just shut up. Shut up and give a hug.

Monday, March 14, 2011

Wall of onesies

Thanks to Peter and Veronique Guy and Rebecca - head of clinical customer service, (Yes, Rebecca, I said 'head'. You know you are, don't deny it) I've decided to memorialize Rambo's stay here at JHH by a wall of onesies. This way, when he's grown, he can look back and remember all the 'fun times' we had here. And then, I'll join Hannah in punching him in the face for all he's put us through. So, here are my ideas so far:
1) I <3 steampunk. This one is actually from Peter and Veronique. Thanks, guys, I love it!
2) Rambo's Remedy
3) Bionic Baby
4) I'm a medical anomaly
5) trach baby!
6) FIRST BIG
7) PICU > NICU (just kidding, NICU, geesh)
8) Mobile Chernobyl: Shooting Xray!
9) I heart Friar Tuck
10) zing *lisp*
11) bonzai! bonzai! bonzai!
12) Baja *blorgh* Fresh
13) Delta Garret Delta
14) "Sikerudy!" (security)
15) Rambo > Nicholas Cage - I just threw that in there for fun. But it's totally true.

Really, Rambo will probably be 45 by the time I get all these onesies made, but still. It's the principle. So feel free to comment with any good ideas you have for a onesie. But make sure they're actually good. I do hold the power to delete comments if I don't like them. Muahahaha. Okay, I would never actually do that.


Theodore got moved to a crib yesterday. Big day for him. This means that he can hold his heat on his own and no longer needs a warmer. I think he got a little carried away trying to prove he could handle a big boy bed because now he's running a fever. I tell ya, when he does something he goes all the way. I guess we can't say he's not thorough.







 This also means that he can have some toys. Even though he can't fix his eyes on anything, Ben and I still believe that he can see. Just by watching him you can tell that he's interacting and trying to track things. In any case, even if he can't, we're covering our basis and trying to help him developmentally. Because you just never know! :)




I'm so tired of this place (JHH and Baltimore) I could spit. (I actually have never understood that saying but have always wanted to say it. Not as fulfilling as I had hoped.) Anyway, I can't wait to be back on the Eastern Shore. Screw the city, man. Maybe I'll take some of Arnold's advice and "let off some steam" because I'm finding myself more and more agitated each day. I'm off to find some yoga or crumpets or something relaxing.

Thursday, March 10, 2011

no more Pandorum

I made it. I hope no one was worried about me. Nicholas Cage never showed up (I'm not too upset about that). I got my hazlenut latte. And it was good, the nurse didn't lie, but I'm still undecided on whether or not it was worth the trip. I most definitely got lost and wandered up and down two sets of stairwells for a while. Then I roamed the third floor for about 10 minutes before finally breaking down and, yes, asking directions. I generally would not have done that, but by this point I was almost ready to call it quits and skip the coffee altogether but my stomach was yelling at me and I'm too stubborn. So I got a nurse to escort me. She didn't mind. I think she felt bad for me - she definitely would have if I had shown her the pitiful picture that was my so called map. An escort, several guard stations, and a parking garage later I end up at The Grind. The line is l-o-n-g. I'm tired, hungry, and had just worked my butt off to find this place - so I stay. And, unfortunately, I'm too concerned with trying to remember my way back that I totally forget to order a scone. I walk away with a tiny $3 drink and an empty belly.

On the plus side, while I was taking an unwanted daytripper through Johns Hopkins, Rambo was getting all those tubes out of his face. He is down to minimal 'tubage' on his body :) They did an open procedure as opposed to doing it laproscopically. Now his scar from his heart surgeries has been continued all the way down to his belly button.



He's the resident rockstar in the NICU.










He was resting comfortably when I left this afternoon.

I leave you with what is possibly the most adorable baby in the entire world. Sorry all you other babies, but I honestly believe that you just don't compare. ;)



And it has just been decided that the trip was not worth it. Sorry, Sharon, minus 10 points for you.

national treasure

Well, little man just went back for his surgery. His face will be tube free for the first time since his first week of life. So no more of this:





:) Yay :)

And I'm wondering why the only thing on my mind is a Cinnabon cinnamin roll. They are so good. Well, I guess I know why that's on my mind: I'm starving! But still, shouldn't I be thinking about my son and his surgery and all of that? What kind of a mother am I? :)
Since my hunger situation is so dire, his nurse has decided to send me on what she's called a 'treasure hunt' for the best hazlenut coffee and scones around. So she says. And if that is the case then why in these 3 months we've been here have I never heard of this place? I'm thinking this is more of a wild goose chase. It involves going over a bridge, through a garage, etc. She even had to draw me a map. I keep expecting Nicholas Cage to come around the corner with a historical document of some sort, decoding something. I'm reserving judgement but expecting great things. (from the coffee, not Nicholas Cage) I'll let you know.

So that's it for now. I'm signing off. I'll give you an update on this so called amazing coffee. Oh yeah, and Theodore too.....

Wednesday, March 9, 2011

The night is as bright as the day


O Lord, You have searched me and known me. you know when I sit down and when I rise up;  You understand my though from afar. You scrutinize my path and my lying down, and are intimately acquainted with all my ways. Even before there is a word on my tongue, behold, O Lord, You know it all. You have enclosed me behind and before and laid Your hand upon me. Such knowledge is too wonderful for me; It is too high, I cannot attain to it.
Where can I go from Your spirit? Or where can I flee from Your presence? If I ascend to heaven, You are there; If I make my bed in Sheol, behold, you are there. If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Your hand will lead me and Your right hand will hold me fast. If I say, "Surely the darkness will overwhelm me, and the light around me will be night," Even the darkness is not dark to You and the night is as bright as the day. Darkness and light are alike to You. 
For You formed my inward parts; You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works and my soul knows it very well. My frame was not hidden from You, when I was made in secret and skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; and in Your book were all written the days that were ordained for me, when as yet there was not one of them.
How precious also are your thoughts to me, O God! How vast is the sum of them! If I should count them, they would outnumber the sand. When I awake, I am still with You.
Psalm 139

Monday, March 7, 2011

Falcor the luck dragon.

You know that's a scary sight.

I feel about today the same way I feel about The Never Ending Story: confused and unsure. It wasn't a bad day, persay. Theodore was fine. It was just.... off. It started when I woke up. 

I'm wondering how many of you 'got' my last sentence. Of course it started when I woke up. I slept in until 10. I haven't done that in a very very long time. Let's see, Israel is how old?? Yeah, it's been since about then. I think my body has just taken over. I have slept through alarms for the past 3 nights. I mean seriously slept through them. I don't even remember turning them off. I only know I have dreamt that I got up and pumped (the reason for setting the alarm). Imagine how disappointed I was when I realized it had only been a dream. I despise pumping. But anyway.... I wake up. The day gets started later than I had planned which means I get to the hospital later than I had planned. And they changed the parking! Why? I'll never know, but they did. As I said before, Theodore was fine, but he seemed a little..... something. His heart rate was up all afternoon, he was sweaty, he wasn't peeing. But he didn't actively act agitated. He was sleeping, smiling, etc. He had 2 eye exams, a bladder ultrasound, a catheter, and a trach change today. This was the first trach change I had witnessed and I approved the team effort. Good job, team. Next time it will be my turn. Then on the drive home my ears get 'clogged' going up the same hill that I go up every day, but this time they never popped. Enter my three other children. Every noise, squeel, scream, complaint is magnified and I'm instantly annoyed.

I expect that you all are feeling sincere pity for me. I mean, how much should one person have to take??? 

Okay, okay. I have enough pity for myself, I know.


Oh, by the way, he had 2 eye exams today because the doctor is concerned that he can't see. Just what we need, right? The exams went well and physically speaking he has all the 'parts' and everything seems to be formed correctly. However, there is no evidence of him fixing or focusing his eyes on anything. He has always had some issues with his eyes, but at one point he did focus very well. He does not now. When his eyes aren't looking up/back as far as they can they are constantly moving left and right. No one is sure why. Maybe Theodore was feeling a little neglected by everyone so he decided to spice it up. I wish he would stop doing that.


So here's to the hope that tomorrow is better. That sleep is sweet. And that Pluto is once again considered a planet. 

Thursday, March 3, 2011

Would you rather...

...be the top scientist in your field or have mad cow disease? These are they type of questions I feel like we've been faced with throughout this whole ordeal. Except there's never an obviously better choice in our case: mad cow disease all the way - I hate science.

Would you rather your son have his heart surgery now or live in anticipation of it for the next 4 months?

Would you rather have your baby at home and deal with all the sleepless nights or have him in the hospital until that stage is over?

Would you rather actually feel like a mom with him in the NICU or have him in absolute constant great care in the PICU but feel disconnected?

Would you rather keep trying to extubate with the hope that it will work this time or take the step of a tracheostomy?

Would you rather all be living together at home or living away and apart so you're dodging the outrageous electric bill that winter brings?

Of course, most of these scenarios we never really had a choice in. It was what it was. But it forced me to look at the brighter side of things. Or maybe it was just the other side not necessarily the brighter one. In any case, I suppose the grass is always greener.


For now, Theodore is doing well; thriving even. Of course, now that I said that he'll probably almost die tonight from an anthrax attack in the NICU or something. Because that's the way it goes. I should have learned my lesson from OMG Megan. She was one of his nurses in the PICU. We were all just hanging out when she says the infamous words, "I wish I had something to do." Well, Megan, you got your wish. And now everyone reading this knows the story of one of his emergency intubations. We forgive you.