well, maybe not...

hi sweet baby=)

so yesterday did not go quite as we were hoping. the bronchoscopy and lasering on tuesday went well-it took about 15 minutes and when it was over dr rodgers told me that there was more granulation (scar) tissue than he was hoping to find, but it had all come off fairly easily. you were pretty grumpy in the pacu-when i got there they handed you to me and you calmed down a little-you needed oxygen for about an hour and by the time we went up to the pediatric floor you were all better. just a small dose of morphine and a couple doses of tylenol and you were just like new. well, kind of. you had (and still have) a LOT more secretions than normal (tracheal-because of the lasering, and oral-because of that blasted molar that's still working its way all the way out) so you need to be suctioned about every 5 minutes when you're awake and every 20 minutes when you're asleep. so needless to say-neither one of us has slept too well the last few nights. there was also, as to be expected, a lot of swelling and inflammation around where they lasered. we could tell that even by the way it sounded when you coughed. but by tuesday night you were playing and waving hi to everybody and pointing to the tv and laughing when mommy says "meow" and bonking heads with me (you like this for some reason-it's another trick daddy taught you) and basically being your sweet happy self.

and then wednesday rolled around. we waited for dr rodgers to get out of surgery and tried to take the trach out around 3:00. it became clear pretty quickly that it wasn't gonna work. we could tell you were trying to take breaths but with and without a stethoscope we could hear that no air was going in. i picked you up to see if you'd calm down (you were pretty upset even before we started just by the amount of people and commotion in the room-neither of which fit the picture painted for us of what it would be like when we took it out) and breathe a little easier. within 30 seconds of taking it out you started turning blue, your sats and heart rate dropped pretty low and you actually lost consciousness. as soon as that started happening i laid you back on the bed. the numbers kept going down (the lowest point was in the 40-50's...yikes!) and eventually your little limbs contracted up towards your trunk. they tried to bag you (which means they put a little mask over your face attached to a bag filled with oxygen and they squeeze the bag to give you breaths). your tummy puffed up and we could tell the air wasn't getting into your airway at all, but instead going through your esophagus to your stomach. when i saw all this happening i went ahead and opened up the new trach and as soon as they said "we need to put the trach back in" i handed it to them. they put it back in and bagged the trach and within 10 seconds you opened your eyes and came back around and started breathing by yourself again. you weren't pleased with the whole situation, but you were breathing and pink. that's pretty much all i was asking at that point. it was by far the most terrifying thing i've ever seen. when most of the people had cleared out of the room, your nurse said "you did a good job, mom. you stayed calm." and i think i shook my head a little and told her i'd probably start crying here in a little bit. turns out i held it in until we were on our way home last night. so they gave you back to me and you fell asleep in about 5 seconds on my chest. i stood there with you staring at nothing while the room got put back together and finally dr rodgers, who was standing across the bed from us, apparently noticed the look on my face and said i looked like i might have a question. we talked about how his guess was that there was more swelling than normal in your airway because of the excessive amount of scar tissue he had to take off, and that we would try again in 2 weeks once it all had time to go down. i asked him if we could make some changes to the whole process and environment in the picu room when we tried again, and he said we could. i'm not saying that if the environment had been different yesterday the decannulation would've been successful, because the inflammation had simply blocked your airway and no amount of nitpicking the process could've changed that. but it would have potentially kept you more calm if there were less people in the room (only what is absolutely necessary) and that maybe if we have the option we can have some of those people be ones that knew you in the nicu and perhaps you wouldn't freak out seeing another brand new face. we're also hoping that we can have you in that particular room with those people coming in and out for a few hours ahead of time and get you familiar with everything. it's perfectly normal for you to have some stranger anxiety, but we're going to try to keep it as low as possible that day. so hopefully the swelling in your trachea will be gone in two weeks, and that paired with some environmental changes will help that day go more smoothly.

i had been much more anxious than normal for the day or two leading up to wednesday. i was wanting so badly for you to be able to get the trach out, and i was really worried that you wouldn't be ready. and in the picu when i had that blank stare on my face with you sleeping on my chest all i could think was how my mindset had drastically changed within those 45 seconds (or whatever it was) when you failed the decannulation. i went from focusing so hard on getting my baby rid of her trach to focusing on whatever it took to make her pink and breathing again. makes sense, right? ;) i felt so guilty when i realized that had been my focus. as much as i hated seeing you like that, and as much as i would give anything for you to have not had to go through it, i am thankful that i got a little smack in the face reminding me what was important. daddy got there about 10 minutes after all of this and you got back to normal-playing and laughing-within about 30 minutes after the whole ordeal. i kept catching myself just watching you for the rest of the day thinking how thankful i was to have you back to normal. normal=trach and all.

for this next paragraph, i feel the need to put forth a disclaimer: we are completely thankful that you are alive. we know that you supposedly shouldn't be. we are aware of the statistics and that you decided to defy the odds. we are not, even for a second, complaining about the course you've had to take so far (although we sure wish you hadn't had to go through some of these things...). so here i go with the paragraph. driving home last night daddy and i were talking about how things never seem to go smoothly for you. examples: in the nicu you get all the way to nasal cannula and we think you're going home with that, then a week later we're signing the consent to get you a trach. then you get a g-tube and we think the whole arena of eating is about to get easier for you, but you end up getting 8 inches cut out of your bowel and become scary dehydrated and have an ostomy for 6 weeks. and then our first attempt at trach decannulation doesn't go so hot. HOWEVER...we also talked about how with ecmo, which is by far the most dangerous help you've ever gotten (there's no doubt it saved your life), you only ended up being on it for 5 days. which is nothing. we are so thankful. do you remember all the possible side effects of ecmo? it could've caused so many problems for you. but you were on it for no time and came off successfully with no problems. sheesh. what are we complaining about??

i had taken some pictures of you before we went over to the picu thinking i could have some "before and after" photos. they are still super cute, even if the "after" ones aren't quite what we thought they'd be...

before...

happily chewing on your saline bullet...

and after...

you were pretty tuckered out...

so there's yesterday. not the news i had hoped to be delivering, but all is well=) i'll leave you with this video that's pretty exciting to me. you have discovered our dvd's, and now you crawl right on over and pull them off their shelf, one by one. i think this is one of the most monumental of milestones and should be made official in the pediatric books=)

(don't worry baby-we have since scraped that gunk off your tongue...)

love you babe-

mommy

ps-you're with me in daddy's office playing while i type this letter. i heard you sounding a little junky and turned around so i could suction you. what i turned around to was you looking up at me holding up your suction catheter so i could take care of it for you. in my mind, you've done this on purpose. brilliant little thing...

pps-your daddy just got home. he said "are you begin nice to mommy? you're not scaring her, are you? turning blue and doing your possum trick?" apparently he calls you contracting your little limbs all up your "possum trick". not very funny. but kinda funny.