Wednesday, August 15, 2012

Hope for Connor....and all my family and friends

"Hope is not the expectation that things will turn out well, but the conviction that something is worth working for, however it turns out."     Vaclav Havel

I've been up since a bit after 2am.  I woke up with pain in my neck and out to my shoulders.  I've become my mother, or who I saw her as for years.  ....I am a worrier.  I stress.  ....a CDH 'friend' I met through the blog world had this quote on her facebook post last night.  ...I find it profound and beautiful and have pretty much committed it to memory already.  I can see this definition as what I felt and believed for Ireland, Connor, my stubborn teenager, and my coming-into-his-own-self toddler.  I can see this definition of hope perfectly.  I see it as defining the struggles that everyone faces in life and can't imagine someone reading that not finding a place that it fits in their life.  ........I am not a cool person anymore.  I don't really care so maybe that makes me cool.  Who knows, it's pointless.  I just know that I live for much more than myself.  I am needed.  Connor needs me for obvious reasons.  Sawyer being so young does too.  Tristan needs me telling him that yes, he indeed needs a job.  He can not sit around posting about boredom, he needs more purpose than what I am providing, or he's finding. (clearly a huge topic for someone else or another time)  Mikey needs me because we chose to be a family and part of loving each other is working towards the life we want to carve out in this world.  .......Like I said, up since 2am.  My mind has been wandering and this quote has been at the top of my mind.  .....the life Mikey and I have wanted together has been this family we've worked so hard to have.  He got a bonus son when he married me.  There have been rough times and amazing times...all in all, Tristan gained another loving father and Mikey gained a son.  Period.  Tristan's dad surely agrees. .....It took nearly 5 years for Mikey and I to have Ireland.  She was dreamed about before we even met.  I have wanted to be a mother since I was little and Mikey wanted children since he first peeked at his first nephew, Kyler.  .......Ireland would have been 3 this coming Sunday.  .......we had hope for her.  I think I like that quote above so much because she was someone worth working for, worth fighting for.  I struggled for a long time with that word hope.  I was angry with doctors, God, friends and family that said things meant to ease my pain but twisted in my mind....The doctors gave me hope in that I thought she'd have a few struggles and then come home.  God took her from me.  Friends and family said beautiful things during her struggles and eventually with her passing and I was just pissed she wasn't with me and no words could ease my pain., this moment, part of me is still mad.  I'm a good mother.  I would have been a great mother to my beautiful daughter.  She may be sitting with Jesus, or in God's arms, or pushing daisies as an earth spirit, or shining brightly through the stars and sun or speaking mandarin in a far off land as someone new.  She may be a part of all of these thoughts I have of who she's become or where she is.  She may simply be the dust in a tiny urn that sits on a shadow box of memorabilia.  For me, I just know I can still cry for her and I wish she were here.  ....I carry her with me always.  In accepting that Ireland is gone, I accept that a hole in your heart is simply something you live with.    
.............moment of pause to just gather myself.............I read the quote again because I just love it.  I want to turn the word something into someone.  It's what applies to me right now.  .......I struggle daily with doling out love evenly.  I'm sure I fall short at times but I also think I handle my life pretty well right now.  Our burdens have become our normal.  What people on the outside see as horrible struggles and such, has become routine.  I think that is sad sometimes but mostly I think it's simply acceptance of this is how things are and this is what needs to be done.  .......Sawyer has to cry sometimes because Connor has an immediate need.  Connor has to cry sometimes because Sawyer needs to know he's loved like crazy too.  Tristan has to be shushed on occasion and I have to go back to what he's said at a later time if I have two babies vying for attention, food, etc. ....I have to put the book down, the laundry down, skip this part of my to-do list because 'this' is more important. I said, this is our normal.  ......People are generally kind and good.  The only offense I've had recently was me having asked someone how things have been and the reply was a sort of rude sounding "I've been working."  .....hmm, I work too.  I work my ass off and can go on a complete ranting of my stresses and worries but what's the point.  Some people get it, others do not.  ......My "job" got a bit more intense since Connor's birth.  He is just over 4 and a half months and boy, my life has been amazing because of the addition of his cute little butt.  I say amazing because he's changed all of us. 
................I haven't posted in nearly a week because there has been so much to process lately.  I'm still processing the mere though of a g tube in Connor's belly.  ......Last Friday, Connor and I went to speech therapy.  We had been working on binky dipping and I'd been stressing about the g tube, tongue tie and a gazillion other things.  To make this short, the therapist and I decided if we could get him to drink, who cares what his tongue does.  We gave him an ounce of thickened formula and he handled it well.  I came home with instructions of twice a day giving him a bottle of thickened formula for 15 minutes before a bolus feed.  ....Connor has been getting an ounce to almost two ounces on his own since then.  I've been hooking him up to a machine that reads his oxygen as he gets these bottles.  He doesn't suck due to the palate so his 'pigeon' nipple (attached to his bottle) allows a chomping motion that pushes the formula to the back of his throat.  ....Connor gets totally excited about these bottle times and goes to town.  He has done well.  His problems have not been noted during the actual bottle time.  He refluxes later and most likely is aspirating during those times.  We're pretty certain because he does what we call the "holy Jesus" move.  ....He seems startled, pushes both arms out high, looks up and sort of has a gurgling move and swallows.  He self recovers and is usually fine afterwards.   ....He's done only this until yesterday.  He was up a little after 4am coughing.  All day he had a few coughing/sneezing fits.  He only drank 5 to 10ml and I'm pushing it in a positive light when I say up to 10ml.  5ml is 1/6th of an ounce. 15minutes and that was all he drank.  .......coughing is not good.  It is a sure fire sign of aspiration.  ...maybe he just had a weird day yesterday.  I hope he did because he needs to swallow and not be turned off by having things in his mouth.          ..........yesterday afternoon, we went to see the pediatrician.  From here on out, she will be known as Pediatrician S.  She is my quan (been my word lately, don't ask, and no, I haven't seen Jerry McGuire in a long while.).  Anywho, Pediatrician S is wonderful because she's honest and answers all my questions.  She is funny and yet completely professional.  Pediatrician S rocks at her job.  ......anyway, I had a few pages of notes from the past few days of feeding Connor.  She copied them and we discussed quite a few things.  First, the g tube.  Bottom line, Connor needs it.  He can not get the nutrition he needs on his own and though he will eventually learn to eat and drink, he is in the early stages of what is a foreseeable and possibly longer than anticipated struggle.  Secondly, the tongue tie.  She agrees that it is not really an issue with his feeding because he has proved that he can actually swallow because he has drank some formula.  She also sees that he could have speech problems down the road though.  Our discussion ended with the thought that the bottom of his tongue would be cut (after discussing with Dr. Siddiqi, plastic surgeon extraordinaire) when he gets his cleft palate repaired.  The reasoning is that currently Connor will take a bottle despite any current issues. ...Once he has the g-tube, it is common for issues to arise that create an environment where little ones do not want to eat (called oral aversion).  Connor doesn't currently have any opposition to putting things in his mouth but if we cut his tongue right now, it could induce yet another factor that would push him towards oral aversion.  Also, if we wait until he's struggling with speech to correct his tongue tie, the fact that he'd be older would just mean it would hurt him, it makes sense to just cut the tongue when he's already having an oral surgery (to correct the palate).   .....thirdly, his weight.  Connor was at 9 percent on the growth charts.  He's not quite considered a "failure-to-thrive" baby because he is growing despite it being slow.  His height was 64 cm and that put him fairly high on the height charts.  His skull measurement was small.  He's only at a one percent on the charts....we'll figure that one out when we can.   .......fourth, genetics.  We are happy that he passed his initial genetics testing with flying colors and the description of "normal boy".  However, every new physician asks for genetics and it's simply not in the system of his current doctors (all docs are under "intermountain" umbrella for reason that it's a shared system and for all Connor's complexities,  this is simple though my explanation may be lacking).  Anywho, the genetics was performed at Davis hospital when he was born (this is not a bad reflection on the hospital though may be bad for the chosen lab).  The genetics also took months to get back.  It should have been a two week test and some follow up discussion with an actual geneticist.  Soooo, Pediatrician S is ordering tests at the UofU that are a bit more complex.  I'm imagining that we'll truly get the same outcome but with an emphasis of them looking at his current issues, a possible genetic explanation as well. (yep, that probably was confusing too...I'll just explain whenever we do the genetics).  ....fifth, we discussed urine output and poop.  Connor goes about every two or three days without his Lactulose (poop meds) and she said this was good.  However, he wets the bed usually twice a night and this is with one or two diaper changes during the night.  He is getting a continuous feeding of formula throughout the night (hooked up to machine with 40ml an hour) to meet his daily calorie needs but just to be safe, she's ordering some blood work when he's in the hospital next week getting the g tube. morning Connor and I head to speech therapy.  I'll pack my feeding notes, his own bottle and some thickened formula.  We have come to the point where we've accepted he needs the g tube.  That discussion is finally over.  This morning, we'll need to discuss this coughing and whether we keep pushing the bottle or what's next.  Lungs can not be compromised by aspiration but no one really knows how much the lungs can handle.  The research says everyone aspirates a little...of course, not everyone aspirates reflux.  .............Friday, Connor has a hearing test and then an appointment with his ENT.  ........yeah, this is the latest worry.  I was up at 2am too because we've been paying attention to Connor's ears now.'s like you pass one hurdle, one acceptance and you move on to the next thing.  ......crazy, I know.  .........anyway, we won't be shocked if his hearing is bad.  Of course, it's not been great from the beginning.  He's had fluid behind his ears since the womb.  Without a cleft palate, it's a given.  He has the tubes now so fluid shouldn't be such an issue.   ......the problem is, we're noticing things now that we didn't pay attention to before.  .....He doesn't startle to loud noises unless you're practically on top of him.  ....shaking a rattle....he hasn't really been responding to the sound of it, he's been watching us shake it.  ........He looks at us so intensely and truly looks in our eyes because he's not hearing us, he's just seeing us.   .........or maybe we're just nuts and a little paranoid.  ........we will see on Friday.  ....It's as if we're just setting ourselves up not to be shocked if something less than stellar is reported.  ...............and if I don't blog again,  .........probably won't........just remembered, some family is visiting next busy week ahead of us..........anywho, I'll try to atleast post results of Friday's hearing test.......but please remember that Connor is having the g tube surgery next wednesday.  He'll also be getting a palate prosthesis the following day.  ......busy, busy..................ya know, WORKING.   ..........anywho, loved that quote up at top.  It's one to put on the wall.   ......prayers and love to all!
Tristan home.  Finally unafraid of holding littlest brother though we understand it took some time.  ...happy times.

Connor just waking up after a road trip to get groceries one day.  ....hard to imagine this chunker is only 13lbs.

One of Sawyer's many hilarious moments.  He loves books and usually grabs them and brings them to you.  Sometimes though, he just wants to chill out by himself.  Cool kid. 

For those truly interested, I have found several incredible g tube forums on babycenter that could be googled.  And for me, the best articles I found to educate me a bit about what we're facing with the g tube were found through a pdf download.  If you are interested or have the time, google "kids with tubes" and hit the link to the newsletter.  Sadly, this site is not active anymore if you just go the regular "kids with tubes" .org site.  However, there is a series of 4 newsletters and they were truly informative to the point of I'll be printing them out and referring to them again and again.

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