Tuesday, June 26, 2012

a note on strength

Truth is I wouldn't call myself strong as much as scared...very scared.  I keep hearing how strong I am and trust me, there are moments I believe that I am and then there are the times that I'm just acting on another level past my greatest fears.

.....this video is from this morning where I needed to observe his breathing before seeing his speech therapist. (he's sleepy here not doped up....and yes, his breathing tends to sound sort of wet and gunky)
this is us trying to include Sawyer in the morning routine (and happy his fever from last night was going down).

this is Connor all set up after refilling his bag for nutrition and setting up his machine, giving meds, taking care of his ears (wound care for distractors behind his ears) and mouth (swabbing it and adding some special chapstick that won't break down his tube) and then making sure we set alarms to turn his machine off and on.
this is me trying to observe and take notes of how Connor behaves after his last boulous feed .....and me trying to somehow include Sawyer.  ...I have to open Connor's jammies up to observe his ribs for something called contracted breathing (I wasn't totally sure what I was seeing so took video to bring to the pediatrician).

this is Connor's current status in his bed (currently with one side of the crib propped up with 4x4 blocks to help with his reflux).  .......tonight, I had my very first total freak out with his newly placed (today) NG tube. The home health lady came today and had me place the NG tube in which somehow went perfectly.  She asked if we had questions and of course, we had no idea what questions to ask.  He's had the NJ tube for nearly a month and the NG tube for a week and done fine.  ....well, she left with instructions of using a syringe every 4hours to check what's in his stomach and that if I had to replace the tube myself to push in some air and use my new stethoscope to listen for bubbles in his stomach.  ....well, sure enough as I'm putting Sawyer to bed, I hear Connor screaming, go check and that damn tube is completely out.  ...I FREAKED.  If Sawyer's first majorly understood words are not curse words it'll be a miracle.  :(  ...anywho, the new tube is very small and flimsy.  The tube he had in before we changed this one out earlier today was stiffer, it was the same tube he had in as an NJ (they simply pulled it out of his intestines and made sure it was in his stomach.  ....well, as I said, this tube is piece of caca!!!  It was taped to his face (as all tubes going from a nose to tummy are) and I tried to just push it back in without removing the tape.  Oh the thing would just curl up and come right back out of his nose.  ...did I mention I was freaking out????....anywho, I called Mikey to freak on the phone.  I let him know I was scared to death of putting this thing in his lungs.   ........well, calmed down a second after he realized he'd be in the same mode I was in if he were the one having to be in my shoes.  Somehow, someone freaking out with me made things a little better...made me need to step up a bit., I put Sawyer to bed.  Poor baby didn't even get a story read...just a "here ya go...Goodnight...I love you...go to sleep please....". back to Connor.  He was still in his own little upset probably due to a crazy mom repeatedly putting crap in his nose!  ...well, after calling the hubby again and a small consultation I decided to use the coveted cell phone number of our pediatrician.  Bless her.  I love her.  If I ever decide to go to the other side, she's my girl now that my precious Tree (BFF from years gone by) is now an angel.  ....anywho, I called, she picked up so sweetly with sounds of her own little one in the background and I just feel horrible for invading her personal space so apologize profusely.   ...she lovingly says I'm good and that she wants me to call.  BLESS HER HEART!!!  anyway, she ends up walking me through what to do with the stethoscope.  She has me pull back on the syringe that I've got connected to his tube...I get a very small amount of liquid and air before it feels tough to pull on (5ml maybe) and then she says to put the stethoscope to the left of his bellybutton, push the fluid and air back into his belly and listen for little bubbly sounds.  I heard bubbles people.  I heard bubbles.   , am I strong or did I just do what I had to do in the face of total fear because let me tell you I am still up because I am listening to him and making sure he's not coughing or doing anything unusual.  I have him hooked to the apnea monitor and have checked it twice to make sure all my lights are going right and that he's plugged in.  I've checked his feeding machine twice to ensure I do not have too much flow.  I've bundled him tightly so he does not pull this tube out.  I've cursed the new tube for being so flimsy I do not trust it.  ......I now have to make sure every 4 hours or atleast everytime I start feeding him that the dang tube is in his tummy.  I am not a nurse.  And yet, right now, I am his mama and his nurse.  It is scary.   (also, I fear neglecting my teenager and other baby...they are precious too.)     Yes, I wouldn't change having had my Connor for anything but I would definitely change his health.  My pediatrician calls me at home because she freaked out about his breathing treatment yesterday not working.  She called me again to decide who his latest doctor should be.  I now am trying to keep a notebook with dividers for each doctor and a section for notes for daily observations during feeds and off feeds and any extras (like me now having to stroke the middle of his tounge to the tip to try to teach him one of the steps to learning how to swallow).    ........once again, I'm not a nurse and yet, I love him and will be one for him.  I'm not really certain this is strength because there isn't a mom that I personally know that wouldn't do the same for her baby.

Venting on very first post

I started this blog to possibly escape facebook, or pinterest, or to vent and inform others what's going on with Connor (Pierre Robin with cleft palate and as of today, issues that yet have a name). ....since losing Ireland, I've tried blogging before without any real commitment or success, but this is about my family and really anything and everything....maybe a journal of sorts.   ............Anyway, I've been up since a little before 3am.  Connor woke up and I placed him in our bed so maybe he can get a bit of sleep.  Yesterday, Connor had some sort of medication through a nebulizer to open his lungs and all this did was exacberate his problems.  His lungs honestly sound sort of normal (for him).  When I hold him, there is a sort of constant vibration and anyone who's held a baby with a bad cold has felt this.  The thing is, it comes and goes.  Also because he's had an issue with reflux combined with aspiration, the constant fear is him aspirating his formula into his lungs. truly vent, I have to say yesterday afternoon was one of the craziest 4 to 5 hours I've ever experienced in dealing with my own babies.  Sawyer (16 months) has been teething and hopefully this explains his fever and of course, Connor (almost 3 months) was agittated from the medication he had yesterday.  It seemed as soon as I'd have one calmed down, the other would start.  ....I am about to sound messed up so leave if you can't handle this.   ........I went through every emotion in the book!  I was angry one minute, sad the next, feeling for each of my boys, feeling crazy about not hearing from Tristan as much as I'd like, mad at Mikey for being at work, mad I lived in Utah, sick of everyone having fun and vacationing and basically doing what I wished I could be doing.....I was irrational and going slightly nuts.  Somehow, the boys came out of this  stretch of time just fine.  I had to put Connor in his pac n' play once or twice to just let him scream but of course the one time, I come back and he has puked on himself.  ....then again, it was time to put him down because a screaming baby is not the picturesque scene we have of our little precious ones.  I, also, had to excuse myself from Sawyer at one point and leave him screaming upstairs at the gate while I went and scrounged some dinner together (total mixing of crap in cans to microwave).   Anywho, this is not even an exaggeration and I very much had a poor, pitiful me thing going on for a bit there.  And miraculously, at some point, I managed to have Sawyer on one knee so I could sort of hold him tight and rock his hot and feverish little body, while holding Connor on the other knee and bouncing him while trying to keep his binky in his mouth (whole 'nother story about cleft palates and no suction meaning binky will not stay in his mouth).   ..............ANYWHO, we all survived.  I did end up having to text/call Mikey begging for him to leave work and grab some more tylenol and pedialyte.  Kudos to him for staying to help me get them to bed as well. funny thing here.  The minute Mikey went back to work, I decided to throw on an old tshirt and night pants (meaning braless and no matching here, total comfort).  Well, sure enough, this is when the home health van decides to deliver supplies.  Of course, my first thought is I will hurt this man/driver if he touches the doorbell and wakes up these babies!!!  Second thought, OMG!!!  So, I decide babies are more important than my appearance and go to the door, holding ferocious dog (meaning idiot barking pussy cat of a dog) back and yelling out apologies for my appearance but the need for quiet (despite idiot, barking, pussy cat/dog).  Go figure, I get the old, jolly, fat guy who just grins like he won a booby jack pot and states he thinks he'll be okay.  God love him because this old perv made my night.  You couldn't help but smile back as you tried to use the box to somewhat hide yourself (all while holding back stupid dog, holding the door ajar and seriously trying to hide yourself just a bit while signing paperwork).  All in all, right this minute as I'm typing, I feel like I deserve a medal for last night.....or atleast a consolation prize of rock hard abs for the constant stress that I call my beautiful, crazy life.      ............well, am now feeling a smile on my face, probably due to remembering the old perv (bless him) and feel this blog, at this moment, has served it's purpose.  I shall now find a few pics to shamelessly post and sign off and hope for a glorious Tuesday.

Connor on June 8th....looking good!!!

budding chef?!
adorable Sawyer!!

Connor sleeping with his homemade binky dog....and looking beyond precious!!