Rambo's Rampages...

Proper noun: 1. the study of an extremely difficult, yet completely adorable baby named Rambo. Rambologic: adj./ 2. (n) confusing subject 3. (n) baffling project.  It's real. Trust me. It's the newest thing out there next to the study of high end brand name products and soylent green. And the past 12 weeks have taught us that no one is by any means an expert in the field. As a matter of fact, no one even has a degree yet. We're all still in training. And the subject has been kicking our butts - until now. Cut a hole in his throat and we finally one up'd him. He didn't see that one coming. Rambo has had his trach since Wednesday the 23rd and he actually looks comfortable. And from my recollection its the first time EVER that we can say that. He is breathing without working too hard. He is smiling! He looks like a real baby. There isn't a need to keep him sedated anymore so he is waking up, looking around. And I really think that if he could make noises he wo

Not. Anyone who says that is a liar. Or they have never been away for an extended period of time. Because after 12 looooong weeks I can say that home is most definitely home. It doesn't matter where your heart is. YOUR house. YOUR bed. YOUR food. YOUR things. Those can't be replaced. Even with my family 'together' here, all I want is home. I'm tired of my son being passed around like a volleyball at the hospital. He's been moved back to the NICU again. And quite abruptly too - I guess the PICU was done with him. I'm tired of the $40 every 10 days just so I can park to see my son. I'm tired of everyone saying that our opinion matters when it clearly doesn't. I'm tired of feeling torn between my kids at 'home' and the one at the hospital. I click my heels together all the time but to no avail. Dorothy was so lucky.    

And Rambo got his trach. So we both accomplished something today. I mean, I don't want to take the limelight away from little man, but I was pretty proud of myself. I'm sure I lost most of you with that reference (and by 'most' I mean all but one) but that's okay. We were all (the kids and I and my mom) supposed to go home for the next couple of days, but that's not exactly how things worked out. Ben got a call this morning saying that Rambo was having his surgery this afternoon. We've been talking about this option for a while now so I know what a tracheostomy is. I know what it does. I know what it looks like. Yet still, somehow I am not sure how to handle a hole cut into my childs throat. It was a very surreal feeling today looking at him when he came back. Maybe it's because the dynamics of today were all different. It caught me off guard a little, Ben wasn't there for this surgery, I wasn't a big fan of the anesthesiologists tripping over

Well, considering the NICU almost killed my baby, I'm pretty happy to be back upstairs.The PICU isn't generally the place you want to be because it usually means you aren't in the best condition. But in our case, I'm happy to be here. Even if there is a clumsy nurse or two. :) Last week Rambo was doing extremely poorly and no one was sure what had happened. It seems to be the general consensus that the NICU created the perfect storm. Weaning him off his narcotics, trying to avoid withdrawl, extubating AGAIN was all just too much for his little body and too much strain on his heart. I'm not trying to take all credit away from the NICU and I definitely want to give credit where it's due. The nurses and nurse practitioners are great. I'm thankful they kept Rambo alive when I couldn't have done that on my own. But see if I don't avoid that place like the plague from now on! I said before that Theodore seems to like it in the PICU and I'm thinking

This morning as we were getting ready to go to the hospital and meet with the surgeon I realized that I was not at all ready for today. I wasn't ready to see Rambo looking sick or abused. I wasn't ready to see him all cut up again. I wasn't ready for anything. Nonetheless, today was here and his surgery was happening whether I was ready or not. We sit down with the same surgeon who has worked on Rambo before and you can tell he'd not pleased he has to do this one. He tells us straightforwardly that Rambo has a 50/50 chance at surviving the surgery. And if he does survive he will almost definitely be on ECMO - a heart lung bypass machine. I have seen this machine on several children in the PICU and hoped never to see my child on one. You have to be completely sedated and paralyzed and each day you are on it is a day closer to not getting well at all. I had a feeling that this was coming so after he told us that I tried to prepare myself for it but to no avail. I just c

Tomorrow is the big day - for the third time. (I told you it was a crap shoot.) Little man will be getting a baboon's heart. I made you wonder, didn't I? No, he won't be receiving a primates organ but he will most likely be getting an artificial valve. The first step in converting him inwardly to all mechanical parts will be complete. After the valve, the rest of the heart. Then kidneys, liver, lungs - hook him up to hot water and we'll have the first steampunk baby. Be jealous. It's been determined that the change in his heart functionality was not caused by infection but rather just the repairs giving up. He apparently did not have the best tissue to begin with, which I think would have been nice to know the first time around, but whatever. I suppose the outcome wouldn't be any different. The exact time of surgery is not known because they just have to fit him in where they can. But they assure us they will fit him in. He's had no more seizure like a

I have lost my mind. I thought this was coming but now I'm certain. It's gone. The past week has made me more than aware of that. Wandering around the parking garage that I use everyday with no idea where my car was or how in the world I was going to find it was the first clue. Waking up out of a dead sleep in the middle of the night telling Ben to put the napkins on the blanket and the sweater was the second clue. I was not only telling him to do that, but I was insistent that I KNEW what I was talking about even though he was laughing at me. Let me assure you that he did not pass up the opportunity to string me on for awhile. And finally, when Ben can make me laugh almost uncontrollably with this a stupid crazy cow puppet I know that my mind is now mush. Thankfully my cousin and aunt came today and helped bring me back to reality if only for a little while. They reminded me of when I was able to hold Rambo and how alert he was so I thought I would share the vide

Apparently Rambo feels the need to live up to his name. Maybe that wasn't the smartest move on my part. But whatever the case, he is going to be having his third heart surgery on Monday. I keep whispering in his ear that this wasn't the plan but I don't think he's listening.  The good news is that his heart rate has slowed down and he is not working too hard to breathe. At least not while he's sleeping, which is what he's doing most of the time since they put him back on the narcotics. I'm sure he's having fun riding on pink elephants again. Somebody better be having fun because I can assure you that I am not.  Today we will be going back up to the PICU. My love/hate relationship with them can commence once again. I'm not sure who is looking less forward to our return: us or them. :) In other news, I ate at Baja Fresh for the first time today in weeks. It was still too soon.  

I would generally have something really witty to say, but my heart is heavy tonight. I promise to continue my rantings of the past few months soon. I know everyone is waiting on the edge of their seat for my next new blog and I don't want to keep you all waiting long or *gasp* loose any followers. So please spare me a rare serious moment and I promise to make the next one really good. Theodore took a very serious turn for the worst last night. At first we thought it was just the typical stuff that occurs right before he needs to be intubated again: working really hard to breathe, turning pale, becoming very limp. But even after his intubation he did not improve. I received several calls from the nurse practitioner throughout the night and in her own words she was "very concerned for him." Everyone was confused as to what was actually going on but their best guess was another infection. So they immediately put him on antibiotics to treat whatever may be there and took cu

"Shooting xray!" You hear those words and you will literally see everyone in the room up and moving towards the door and out into the hallway. Parents forsake their children. Nurses forsake their patients leaving them alone and helpless to absorb all the radiation we're so desperate to avoid. Thanks for taking one for the team, guys. I really think by the time we get home Rambo will be the kids own glow in the dark toy.  Ahhh, life in the PICU.  We never expected to be in the PICU as long as we were. We didn't expect a lot of things. But I definitely think we left our mark wherever we went. Whether that's a good or bad thing is left to one's own opinion. Going with the flow; rolling with the punches; whatever you want to say, we are experts at it now. Why not make it enjoyable?  Our days pretty much consisted of waking up, walking to the hospital, going to the 7th floor and entering First Big. That place will always hold a special spot in my heart. Imagi

Israel 6, Ruth 5, Emma 3 I had to share the rest of my wonderful children who have been completely amazing throughout this whole thing. They love Theodore so much and it's neat to watch how they care about him. Fire and Ice. "I hope the hospital has what Theodore needs." Sweet but sneaky.    "How's Theado going?" "I hope he gets to come home to his brotha and sista and otha sista soon." Only the best big brother in the world. "Mom, will Theodore be home soon so we can be all together as a family?" "There was a family had a babe and Rambo was his name-o. R  - A - M - B - O" I love my kiddos. And I'm so thankful to everyone who helped take care of them for 9 long weeks while Ben was off work so we could be with Theodore. Israel, Ruth and Emma you are awesome!!  (Don't be fooled by their pictures. The captions are much more accurate.)

And by 'neighborhood' I mean PICU. Talk about chaos. Wonderful wonderful chaos. I miss that place. But when I first walked in I was totally intimidated. And that was on an 'empty' day in the unit.  It's a weird sight to see your tiny baby on an adult size bed. And weirder still when that entire bed is covered in equipment just for him. As well as his body being all geared up with tubes and wires and barely an inch to spare. It's amazing what can happen to someone in 6 hours. Our sweet little Rambo had become the bionic baby.  At this point in my head I'm pretty much just hearing static and nothing. I was finding it hard to even form a sentence that was worth anything. (I know what you're thinking about the two prior sentences, and yes, I know what I just said. And yes, I mean more than usual.) I'm used to having a 2 week old at home: watching him sleep in his bouncer, patting his back when he's crying, picking him up, feeding him etc. No

You know you're in for a real ride when you get a call from the doctor (on Christmas Day) saying they had to reintubate your child. SECOND emergency intubation - check. I bet you're starting to wonder how many times this poor child has been intubated and extubated?? Well, today marks try number 9 without the breathing tube. 9. Seriously. I could give you a play by play account for the 7 tries in between but I won't. Let's just say Ben could intubate or extubate anybody any day of the week now. But I'm getting ahead of myself. Back to the NICU on Christmas Day: After many days of being baffled by a baby the doctors finally all agreed that his issues were being caused because of his heart. Duh. Rambo showed really early on that he was not the typical child with this defect. He wasn't eating and when he was, he wasn't keeping anything down. He was constantly breathing fast, like really fast: 110 bpm was average. And he couldn't seem to do the breathing

There are several things I've learned in the past few months. The first of which is even Baja Fresh gets old when it's pretty much your only choice of nourishment at the hospital. I've also learned more information about the heart than I care to bore you with, the names of all the nurses in the PICU and NICU, and that Plan D is always the plan you end up with. My knight in shining armour doctor finally agreed to induce me 2 weeks before my due date. I can not tell you how much this pleased me. And to my pleasure even more, I went into labor on my own the morning I was supposed to be induced. I give my husband credit at this point because at 2am I said "My water broke!" and he hit the ground running. We had to make it to Johns Hopkins since it had been decided it was the best place to deliver so we had over an hours ride and this was my 4th child. Keep in mind, I barely made it to our local hospital with the last one.   Anyway, a pretty uneventful trip and s

It's all Ben's fault.  No, just kidding. I guess he's only partially to blame. :) When we found out we were pregnant with our fourth, we were definitely excited. It had been 3 years since our last and we both wanted one more. On a whole the first half of the pregnancy was pretty standard: tired, cranky, sick. I was counting down the days until THE ultrasound. Boy or girl?? (We were both hoping for another boy - don't tell our girls) And sure enough- boy it is! Just like we ordered. But we also found out that things weren't quite right. There were some issues with his heart. And after a terrible visit with a doctor I hope never to see again we were referred to a specialist to find out exactly what was going on.  Complete AV canal defect. Yeah, that was my reaction as well. What??? To make a long description short, he only had one atrium (you're supposed to have 2. Who would have known?), one valve (again, there should be 2), and a hole in his ventricular wal