Monday, January 30, 2012

What's that you say?

Oh! The incessant beeping!! I can't take it anymore, I tell you. I can't take it! 

Sometimes I think maybe, just maybe, to have a slight case of hearing loss wouldn't be a bad thing. I'm not talking full out deafness, just a little hearing impaired. My world could truly be a better place. There'd be a lot less to bother me, that's for sure. No more "Mom. Mom. Mom? Mom. Mommy. Mom." quietly in my ear because I just sat down after telling the kids I was going to be on the phone; yet they decide that's the perfect moment for asking about playing a game on the phone... that I'm talking on. And I suppose whispering it over and over and over again makes it less disobedient. Or less annoying. Or possible. 

I could literally miss out on THOUSANDS of "mom's" a day. And I'm not talking about the sweet little "Mom. Mom? I love you." 's. But the thousands of times that it really honestly doesn't matter. Case and point: "Mom. Hey, mom. Oh. I forgot." or "Mom. Mommy? Uh.. nevermind you just answered me." Every mom has wished at least once that they couldn't hear. At least once. And if you haven't then you're lying. Or you're stupid.

Being hearing impaired would also, most importantly stop me from hearing the beeping of Theodore's machine. Sure, beeping is good for some stuff - like when I leave the refrigerator door open, or when *heavenly hosts singing* my coffee is ready. But Rambo has really REALLY tainted my view on beeps. It's just never ending.   


Never.


Ending.


I'm already seeing impaired. If I don't have my glasses on I wouldn't know who you were if you were standing 5 feet away from me. And if I'm more than 15 inches away from a computer screen I am screwed. What's one more thing? Unless the hearing impairment came with a ringing. Ringing is by far worse than beeping. Not sure that it's worse than the "mom" thing, but.....


Okay, I think at this point my sister in law would tell me that I'm talking to myself again. She'd be correct. I'm not sure if anyone is still reading this. And if you are you're probably thinking "What kind of a person wishes they couldn't hear???"  Me. That's your answer. I am the kind of person that wishes I needed a hearing aid just so I could turn it off. 







     

Monday madness

Who told this boy he was allowed to grow up? I certainly didn't approve of that. Of course, I wouldn't say that I have 'approved' of about 50% of the way he's done things as of yet, but he hasn't really asked me. Rambo has suddenly gone from baby to boy.



Yes, people! He is sitting up on his own!!! He is still really unsteady, but I was able to snap a few pictures without him tumbling over. 


Just adorable. It can't be denied.
This one just makes me laugh. I love the gap in between his two front teeth. It only adds to the adorableness factor.



I might be crazy but after only 3 days on his new formula with a lesser calorie intake, I already feel like I can see a difference. Don't lose it too fast, buddy. The chunk is really what keeps you so darn cute. And it also makes me feel like you're still a baby. Stay thirsty, my friend. Drink up.

Saturday, January 28, 2012

Uh, yeah....

Rambo was just pulling on his trach. His actual trach that goes into his neck. Yeah.... decanulation, I see you in our near future and I can tell that we are not going to be friends.

Friday, January 27, 2012

The results are in

and the answer is..... we have a fat one. I was going to draw up a few charts to show you just what I mean, but my life has not been conducive to doing so this week.So you'll just have to do with a basic explanation. On the weight chart Rambo is finally up to about 40%. That was a pretty big jump he made in the past two months. On the height chart he is still not even on it - below the 3%. And on the weight vs. height chart he actually exceeds 100%. His doctor is putting him on a diet. I'm not going to mind watching him shed a few ounces. His feet are like pinpoints on the bottom of a trunk. His fingers and hands are just.... round. He has a checkup in 6 weeks where he hopefully won't have gained any weight, and if he has it better be with some length. 


We also got the results of the sleep study. There wasn't much news. His desating has nothing to do with apnea or collapsing airways or anything like that. Just chronic lung disease. The only way to treat that? Outgrow it. Slow and steady - the way Theodore likes it. They also took a chest xray and saw no pnemonia - yay!- but the doctor said it looked like a slight film over both of the lungs. This could possibly be extra fluid which could be caused by a number of things. We may have to up his dieuretic. He has been on the same dose since we brought him home and he may just be outgrowing it. It could be that he has a virus of some sort (he has been running an ever so slight fever, been irritable and been needing quite a bit of suctioning. He has also been teething and got shots so any of those things could be causing the fever as well.) Or, dare I even say it, it's possible that his heart is not pumping as efficiently as it was and its passing too much blood through his lungs. Now, that is a long shot. Hopefully a very very very very very very unlikely shot, but it is possible. It's also possible that the radiologist thinks it's nothing on the xray and we have no worries (only the doctor read it while we were there). So, hopefully we'll know something by the beginning of next week... you know how these things go. 


As I said before my life hasn't been conducive to doing a lot of extra stuff this past week. My poor husband has been home sick all week - that really bad cold that's going around - it keeps him up coughing at night so he hasn't gotten much sleep. And poor Rambo has been fussy and irritable. Thankfully, my other children are well as am I. I've taken few to no pictures to share and homeschooling has been more of a side project, but we will press on. 


Hopefully I'll have a more interesting post later this weekend. We shall see. And by 'interesting' I mean a post with photos, maybe a funny story; but by NO means do I mean 'eventful' concerning Theodore. 


 

Wednesday, January 25, 2012

Watch out.

We officially have a facebook page for Rambo's Heart. You know we're serious now! 

http://www.facebook.com/pages/Rambos-Heart/229106107170283 
Check us out! And 'like' us!!

Sunday, January 22, 2012

Have you ever thought....

Have you ever thought about how many disorders there are? How many defects? How 1 in however many are born with something? If you put those numbers together it truly becomes a miracle that any children are born healthy. 

I have 3 healthy children. 

3. 

That is amazing. 

Count yourselves blessed if you have healthy children. Children who can run and play and cry and breathe and see. Think about the odds. 


Miracles.

Today I feel truly blessed to have that. What is seen as the norm in reality is not normal at all.

Today I am blessed to also have a son who is not 'normal' or 'perfect'. Who has given us difficulties and heartache we never thought we would face. He is here today when he shouldn't be. He is absolutely a miracle, but no more a miracle than my others.

4 miracles. And they are mine.

Miracles that make us stronger each day. That drive us crazy. That take all of ourselves. That are worth it. That make us who we are. 

Thanks a lot, Sarah, for spurring on this thought :)

 

Saturday, January 21, 2012

Our Saturday morning

In accordance with my resolution to see the bright side, I give you: Our Saturday Morning.







Nevermind the mess the pancakes made, the fuss to find all their winter clothes (you might be able to tell they did that on their own) and a fussy little man this morning. Oh, also, a brother who made a sister step in an old dirty, wet litter box outside. Yup, showers are happening as we speak. All in all, that's a lot said and done by 11am. A good Saturday morning, indeed. 

 

Thursday, January 19, 2012

It just can't be easy.

I should have known. Maybe my standards are high. Too high, apparently. And I recognize (and hope) that our time at Mt. Washington has been a rare one. But again, I come away not in the slightest impressed with that place. As I walked out of the doors this morning at 5:30 and breathed in the air I was so happy to be free. I didn't care that it was freezing. With my back turned to the building I could only hope it was the last time I would be making that walk to my car.

I'm not trying to be harsh and would love to hear some good experiences concerning the Mount. But ours, and a few Hopkins friends, have had no such luck.

I also should have known that we wouldn't have any news this morning. I didn't realize that it would be a tech doing the study and not a nurse. Nothing wrong with that, just my oversight. But they aren't allowed to tell you anything about anything I guess because they aren't 'qualified'. So we come away today knowing only what we already knew which was that if you turn the oxygen off he starts to desat and work really hard. Not surprising. The doctor should have the results when we see her next week. I think it will be interesting to see the correlation of how fast/slow he breaths and the state of sleep he is in compared to when he is desating or not.


Isn't he adorable?

Now let's get down to the nitty gritty. The sleep study started at 8:30pm. We arrive at 8. The security guard tells us that we can't go down to the sleep study waiting room yet so we need to wait upstairs. I don't care as long as I'm not out in the cold. But apparently the reason for this is because just recently a mother, after getting to her appointment early, complained about what was on the tv in the sleep study waiting area. I guess the best solution is to then keep everyone out? Changing the channel must be out of the question; or, I don't know, let that mom wait somewhere else. Anyway, we wait until 8:30 when they direct us downstairs to - get this- keep waiting in the s.s. waiting room. Where the aforementioned tv is on. They didn't spare us anything. The office is running behind - fine. It happens. Annoying, but not unusual. About 9pm they call us back. And we must have gotten the slowest tech in the place because at 11pm they are still getting him set up. Seriously, this should have taken 30-40 minutes max. I was the only parent there who brought the completed paper work and by 11 all the other children are fast asleep and they are still messing with mine. Ugh. At least a half an hour of that time was spent trying to put on a piece of equipment that we later find out they have a back up for that they put on him anyway. Are you serious?? We expected all the wires and Rambo did AMAZING considering. He didn't try to pull at them too much at all but it took him forever to actually fall asleep. At one point he was asleep and they had to mess with him again which woke him up and he hit his second wind. 

He wants to kill.

FINALLY around midnight after rolling and crying and fussing and rolling he fell asleep. DON'T TOUCH HIM.


     
He basically slept through the night at that point. Thank the Lord because I was crawling out of my skin and ready to unplug him and get the heck home.

I don't know why we have issues there.  I can honestly say that I went into the evening with a fresh view and an open mind. I wasn't holding anything against them. Maybe they aren't used to children quite as complicated as Theodore. Maybe we are just lucky enough to meet all the less-than-good employees there. Either way, our experience was once again sub par. 

Now we're home. They let us go a little early so we were able to beat rush hour traffic. After an hours nap and a few cups of coffee I think I can tackle today. They said they were able to get the results they needed so hopefully we can put off another sleep study. At least for a year or so.

And for those wondering: Yes, I did get the bed.  (which was actually a bed and not an extend-o-chair.) I got to sleep. Maybe only for 2 1/2 hours but I DID get to. I told you I would win. Ben might say it's because he's on night shift and was going to stay up anyway. To that I say, that's exactly how I won -I'm a master planner. Yes, hon, whatever makes you feel good about it. Of course you let me sleep.  

I haven't forgotten about the videos I said I would post. Just haven't gotten the chance to work on them. And, BIG NEWS PEOPLE! Israel can now feed Rambo. He knows how to do everything from fill the bottle to plugging Rambo in!! So exciting. He is so proud of himself as he should be. 

Wednesday, January 18, 2012

5 o'clock in the morning. Where ya gonna be?

Ladies and gentlemen, it is finally here. Yes, that's right, the much awaited sleep study happens tonight. It's been put off time after time for various reasons, but I'm hoping with only 9 hours to go until this event we can safely say it's here. 

What will this accomplish? Supposedly: it will determine why he needs oxygen at night : apnea of some sort?, wheezing?, too shallow breaths?, etc. From my understanding they hook him up to a whole bunch of monitors and then watch. 

I do expect some kind of answers although I'm not sure what they'll be. Maybe they will say that his 'desating' isn't that bad and we can try him off the oxygen every other night. Maybe they'll say to start him off oxygen while he's awake. I don't know. In any case, when they kick us out at 5:30am tomorrow morning, hopefully we'll be coming home with some answers. 

Rambo also had his one year check up yesterday. And, despite having the same nurse that screwed up his shots last time basically do the same thing this time, we came out semi unscathed. On a side note here, any advice on how to ask for a different nurse when you are at a small pediatric practice? And hopefully not offend? Or do I just say, who cares if I offend her? He weighs in at 21 pounds which is almost the 50th percentile! The catch? He is still super short and not on the chart yet. Which means what we already knew.. .he's a chunk. Also his head is large. So he definitely looks a little disproportionate, especially when he's being held. Other than that, and a few small issues we're working out, he is doing very well. And that day he got his knees under him - definitely not a fluke :) He's done it many times since then. I keep slipping my hand underneath of him to make sure his belly isn't touching the ground. Oy vey. Chaos is yet again just around the corner. 


Just a couple of cell phone pictures I snapped this week. Little man doing what he does best. 


So tonight as you all are nestled up in your beds with visions of sugar plums and all that, Ben and I will be fighting over a singular stretch-a-chair. I, of course, will overcome and win. Because that's how I roll.

 

Monday, January 16, 2012

Undercheesing is rampant.

Part 2 of bad memories begins thus:

As I was saying last time, coming home was never easy. No matter what, you always feel pulled in the direction that you aren't. It was also hard for the kids. Seeing us only to know that the hours were ticking down until they would have to leave us again. I can remember the tension building as they could just sense what was going to happen even without us saying a word.  Nevertheless, we tried to come every few weeks or so. We tried to grasp the threads of some kind of normal. 

This time we decided to come home for two nights. It was late in January and we had never done that before. Rambo was still in the PICU because he had yet to thrive and they had yet to figure out what was going on. I can't remember the specific details of why we decided to come home. I have to assume that he was stable when we left because I know that we only left him when we felt comfortable that he would be in the same position (hopefully better - certainly not worse) when we returned.

So, home, day two, and we are slowly wrapping things up. We knew in a few hours we would be headed towards the hospital again. Ben's parents had come to pick up the kids and I was upstairs for some reason. We had been in close touch with the hospital as always, calling several times a day to check up on Rambo. It had only been a few hours at best since we had talked to his nurse last. I come down the stairs and Ben looks at me in such a way I don't know how to describe, but I knew instantly that something was going on. And he says to me, "The hospital just called." That's never good. 

This is where things get really fuzzy for me. I don't think that Theodore was intubated when we left, but he may have been. And I don't remember what exactly happened to cause him to need to get intubated this time, but whatever the case, they needed to do it. Or at least they tried to. And, yes, in the most literal sense I mean that they 'tried'. For about 20-30 minutes he was intubated 4-6 times. Each time they did it, he still was not breathing. That means they would intubate, see it wasn't working, then extubate. Try all over again. I can not imagine what his poor little body went through. I do remember that the doctor told Ben it was "touch and go for a bit" and that they weren't sure what damage was done we would just have to wait and see. They were also very sure to point out that his heart never stopped. I guess that was supposed to be comforting. I can see in my head the chaos going on at his bedside. They said they didn't know why the intubations were not working but their best guess was a plug of some sort. 

Are you serious? Our first trip home for two nights and this happens?

That is the kind of uncertainty we lived with. He could be fine, thriving even, one minute and then dying the next. 

Needless to say, that was the first and LAST two night trip home we ever made. 

I would have given anything to have undercheesing breadsticks as our biggest issue. Domino's, you are SO lucky. 

Of course, this story reminds me of another story and another story.... Not sure why I'm suddenly reliving these, but they are in the back of my mind for another day...

Leaving you on a good note: I just looked out the office to check on Rambo and he was up on his knees!!! He may have had a rocky start (to say the least) but he just keeps going :)


Saturday, January 14, 2012

Past week.

In pictures. Only the good stuff. 











Not sure why Theodore always happens to be in that outfit every time I take pictures, but that's apparently the way it is. Snow, time to paint, and happy kids all in a weeks work. I'd say that's  a pretty good week.

Thursday, January 12, 2012

Growing pains in the butt.

As much as we are no longer dealing with some of the same challenges we were last year, I am convinced it has only made room for different ones. 

This, for instance:





is our biggest problem now. How in the world is this going to work when he is crawling? He already almost pulls his equipment over. It'll be interesting, that's for sure. 

Also napping is something that he doesn't really do. About every 4 hours he'll sleep really hard. For 15 minutes. You MIGHT get 20 out of him. What can you get done in 15 minutes? That's barely enough time to get a cup of coffee and put your legs up. Sure, there are plenty of chores that can be knocked out in 15 minutes or less, but what kind of fun is that? 

Again, I'll choose to count my blessings. Which leads me to the second part of this post.... kind of.

I was reminiscing today (I guess 'reminiscing' can be used when you are talking about bad memories... there is probably a more accurate word. Not sure these are the kinds of things someone would say they were 'reminiscing' about. Either way.....) about two of the worst times we had with Theodore. I'm not sure I've ever shared them with you - in fact, until today I had pretty much forgotten them. Who knows what reminded me. But I'll share them now. Maybe it will help you fill in some gaps. Maybe if you're going through a rough time you'll know that you are not alone. Maybe it will help you feel closer to us/Rambo. Maybe it's just a finishing piece to the processing puzzle for me. 

Leaving Rambo at the hospital was always hard. We had him two weeks before Christmas and wanted to be home to spend Christmas with our other kids. I could be mistaken but I think Christmas Eve was our first time home since his birth. Which, almost didn't happen because that day (it may have been the day before - time sort of ran together for most of it) was when he took his first sudden turn downhill. As a matter of fact, up until this point there was talk of sending him to a step down facility and straight home from there. I've shared this part with you about how he was in my arms and I was watching him fall apart right in front of me. Turning a yellowy-dusky color, becoming very limp, etc. All of which led to his first emergency intubation. The next part might leave you with many questions. Some of which I won't have the answers for; some of which are too hard to explain. But I will say that there is a fine line between needing to be intubated and not needing to be. And, for the first several intubations, it always appeared that Rambo didn't quite need as much help as a breathing tube provides. We not so quickly discovered that Theodore walked that line like a pro. I only wish we had learned sooner and maybe saved him from some of the trouble. Needless to say, we came home on Christmas Eve because it appeared he had turned the corner, was extubated, and had an excellent nurse. This didn't make coming home easy but it did make it doable. Fast forward to Christmas morning and about a half a dozen calls to the NICU to check in on him, and we are on our way to Christmas with the family. As we are driving we called to see how our little man was doing - expecting a status quo report. Instead, our nurse says that he has turned the corner again. He's breathing extremely fast and working hard so an intubation seems to be in the very near future.

What?

We are on our way to family Christmas where everyone is going to say "Hey!" and "Glad you're here!" and "How's Theodore?" Where I'm going to feel bombarded by people and questions and pleasantries and all I want to do is sit in a corner and cry. And get back to my baby. 

What do you mean he needs to be intubated? He was fine when we left.


Oh, and by the way, the doctor is going to call you to get your verbal permission to put in a PICC line so we can start antibiotics and steroids and all sorts of things.


My head is still spinning but we manage to make it through the greetings and make a one time report on Theodore's status. We even start to enjoy the present opening process; watching our kids with so much joy. My phone rings. It's the doctor updating me and getting my permission. Things are going in stride and I am proud of myself for being able to handle this. Then she suddenly has to go. She hangs up. 


About thirty minutes later Ben's phone rings. Different doctor. The first doctor had to go because they needed to immediately intubate Rambo. It went from going-to-need-to-be-done to emergent in a matter of seconds. And I'm thinking, when I can think anything at all, "It's Christmas." 

My 6 pound 6 ounce 10 day old baby was emergency intubated for the second time and I wasn't there.

That is enough to drive me crazy for a lifetime. I know I couldn't have done anything, but it doesn't matter. Nobody was there for him. Nobody that loved him anyway. 

The past is the past. Had I been there for Rambo I would have missed my children's hugs, their happy spirit all through the day, the look on their faces each time they unwrapped a new present. The scales are weighted and they are even. Both would be just as sorely missed. 

I think I'll save the other story for another day. Too much happiness in one post isn't good for ya. Am I right??? Besides, I need to untangle Theodore from his tubes for the millionth time. Bed time can't come soon enough!  


 

Wednesday, January 11, 2012

The goings on

*really bad beatboxing* "Hellooo everybody.." *really bad beatboxing ensues* source. Life for me has been pretty low key. Yes, I chanced it and said it. Maybe not the smartest move, but apparently I'll take that risk. This week has consisted of mostly the ins and outs of getting back on track with homeschool. Thankfully there have been no emergency trips anywhere, nothing too exciting, just our normal. Which is fiiiiiiine with me.


Last night we had the chance to get out with Ben's twin brother and his wife. They are visiting from China and are going back tomorrow after having been home for a month. We have never met her before, except over Skype, so it has been really fun getting to know her - and her getting to know us. Even if she was practically appalled by the amount of casserole dishes I have. :) We went bowling, and I must say that I started out the first game with a bang. Like, literally a bang. I'm not the best at 'setting' the ball down. Ben says that I leave divits. But even if it sounds like a thunderclap when I bowl, Sally still wins for launching the ball the furthest down the lane. Still, I did well the first game. Or better than usual at least. We shant talk about the second game... a Chinese girl who has only bowled once before beat me.... shameful. She does have a secret though: Soft on strong. So, there you go.. the secret to life. I have no idea what it means, but it's out there. Maybe once I figure that out I'll be a better bowler.

Then we had sushi. Yum.

That was the first time since having Theodore I've eaten sushi. It's a long story, but it includes hospital sushi, a stomach ache, and a brie and steak quesadilla. That's where I'll leave that.

Last night was such a wonderful reintroduction to sushi. I do love it.

So as you can see, my life has been 'ahhhhh' lately. Really the biggest decision I've been faced with is bangs or no bangs. Don't get me wrong - that's a pretty serious decision, but I'll take that over things that it could be. Even the snow has been fine. (And if you know me you know that I HATE snow.) It snows and then it's gone. I even think it looks pretty. GASP! 

Okay, I've been interrupted about 29 times since starting this so please forgive me if it's a little all over the place. I'm still smiling though! I just wanted to let you all know that we are a-okay over here. Hopefully I'll be able to get those oh so amazing videos up that I was telling you about. 

*really bad beatboxing (and quite a bit of spiddle)* "I say, baby, whatchu gonna do" *really bad beatboxing continues...* 

   

Saturday, January 7, 2012

And if the devil doesn't like it....

Our God manifests Himself in our mangers and muck, our mundane and mess.

Ours is the God manifesting Himself in the unlikely and unbearable, in the surprise and the second-chance. The God Who bears the burdens and brings the hope.- Ann Voscamp

Today I choose joy.

The Lord is the portion of my inheritance and my cup; You support my lot. The lines have fallen to me in pleasant places; Indeed my heritage is beautiful to me. Isaiah 16: 5-6

What I realized today? That my inheritance is the Lord- in entirety. There is no lacking. HE is my portion. Satan will try to steal my joy - constantly, moment by moment. But he can't today. Because today I choose joy.

As things in my life seem uncertain, as my keyboard fritzes out on me, as my computer won't play videos from my camera it plays videos from everyday... In the big things and in the little things Satan tries to come in and make me discontent, angry, get a foothold. He doesn't want me entering the land God has brought me to. He knows God is building me, strengthening me. And you know what? I think he's afraid. Afraid I will let God work in me, afraid that through me God will do big things. Afraid he's losing. 

The Lord- my strength, my refuge- is my inheritance. HE IS MINE. And this land is His plan for me and He supports me there. He doesn't leave. He is more. He is manifest in me. And He is beautiful. 

Satan, you can sit on a tack!

----------------------------------------------------------------------------
On a side note, I do have two absolutely amazing videos to post of little man. But, as you can see, that's not working out so well today. I'll let you know when I get it working.


Also, we had a visit with the eye docs yesterday. We thought his right eye turned in, but it appears to them that he is alternating which eye turns in. This is a good and bad thing. Good in that both eyes have vision and it does not seem one is better than the other. Bad in that he is only using one eye at a time - meaning his brain is not receiving signals from both eyes at the same time. He also 'seems' to have normal vision in each eye for his age group. And one more thing - the reason he looks up and back so much is because that is where his eyes 'steady' and the nystagmus is almost non existent. They called this his 'noll'; where he sees things most clearly. When he is sitting up by himself he will probably keep his chin down and look up with his eyes to see things. I guess the expression, 'Keep your chin up,' will be no use to him. No need for patching or glasses yet that they can see. All in all good news.

Also he is fitting into more age appropriate clothes lengthwise. He has a check up later this month so we'll see what his length is, but I'm hoping he is catching up. Maybe we can eliminate a specialist. That would be amazing.


I need to go wrangle in my kids so that Ben can get his sleep for night shift. Have a lovely day. Choose joy and make the devil mad!

 

 

Thursday, January 5, 2012

The likeness to food.

It's uncanny, really. 

Sometimes, looking at Rambo I feel as though I'm looking at an overstuffed piggy. MUCH cuter, mind you, but still. 

Case and point:


Do you see those jowls?? How could you miss them? It's like two big hamhocks on either side of his face. 


I literally felt like I was casing my own sausage trying to get these pajamas on this boy. I'm surprised his hands weren't purple in the morning for lack of circulation. That sleeve was pulled taut. 


This one doesn't remind me of food - just my view about 50% of the time. A little foot sticking up over the edge of his crib. We'll have to move the mattress lower before long. But until then, this is one of my favorite things to see.

Tuesday, January 3, 2012

2 things.

One.) This is why my church family is awesome:


Two.) There's a new page up - RAMBO'S HEART. Check- check- check it out :)

Okay, three things.. I lied.

Three.) You can now find me at rambosrampages.com. No need to type in the '.blogspot.com' anymore but you still can if you wish. 

That's all folks!