Sunday, August 19, 2012

Remembering Ireland....and planning for the week

Connor woke up a little past 3am screaming.  .......he's been doing this the past few days.  Something isn't right ahd it takes awhile to settle him down.  Part of me believes it's gas because occassionaly I can get him to let out a massive burp.  .....he arches his body and stiffens and just can not get comfortable. can be a frustrating moment for him and I.  He's obviously wanting something and I'm obviously listening to nonstop screaming and not sure how to make it better.  ......this morning is different though.  It's ok it's  3am because today would have been his sister's birthday.  Today, I wake up fully aware that he'll never know his sister and it makes all the difference.  Today, Ireland is at the top of my thoughts.  ....of course, the past few weeks, she's been in my thoughts alot.  Really, I suppose since Connor's been born she has been a constant reminder of how truly precious life is.  Because, let's face it.  My biggest fear with Connor is that something would happen and he'd leave this world.  .......I'm not sure I could handle that.  Of course, I think I have other children that need me but I'm not so certain I'd be good for them if ...........    .......Ireland wasn't just a gift to this world.  She was my baby girl.  She was supposed to grow up to be my best friend and one day, I hoped to watch her daddy walk her down the aisle.  ......I can never put into words just how very much I loved her.  How much I still love her.  How much I dreamed for her.   .......One of the hardest things I do is putting pictures together.  Collages of our family, or even family pictures just sitting out.  Something always seems missing and yet, if I'm doing an updated set of pictures, something seems off because of course, Ireland's pictures are all the same...she didn't get to grow up and change.'s an odd thing maybe but I know I'm not the only one who's lost a child and felt this way.    .............since Connor, we've heard that if Ireland had not passed away, maybe we wouldn't have him.  This is something that bugs us.  We don't believe she lost her life to give us Connor.  We don't live in a life of what if's so we simply don't accept that explanation for her not being here.....if anything, we don't need an explanation of why she's gone.  There was a time that we indeed asked that question but now we just miss her in our lives.  .......when I had Sawyer, I sort of woke up from a horrible and pretty deep depression.  He was a light that entered our family's life.  Tristan laughed more and Mikey and I were the same.  Sawyer is still our little 'funny man'.  .......Connor has also been a gift.  He looks so much like Ireland did that it's just beyond belief.  When he's not well or the memories from his earliest hospital stays, their similarites has been a sort of fear because it's so hard to seperate there experiences.  And then there are times now when he's smiling and putting on a little weight that we look at him and wonder if that's how Ireland would have looked., I just really wish we were sitting around a cake with 3 candles and our loved daughter.  I wish we were showering the day with pink and girly things.
.......I can hear Connor downstairs.  He's having another 'fit' but he's with his daddy and should calm down soon because he does seem to like when he lays down with us.  Connor has started this thing where his body seems like it can't calm down when he's tired.  It's hard to explain because he likes to be held most of the time and is just starting to slowly show interest in toys.  ....but lay him down, put the binky dog in position with binky in mouth and the beanie dog sort of pushing it to stay put, lay the blanket just right so that he can sort of hug the blanket and his arms and hands are flailing.  I try to hold his fingers, get the blanket just right, move the dog around to see if he wants to hold it...anything.  ...I've started to just lay him on his side and hold down his arm with my hand as I tap his back.  Usually, I can get him to sleep this way.  .........if he has more fits today I may just take him to the urgent care clinic to make sure his ears are ok.  (just spent last 20 minutes with the blog on pause while I tried to rock little man back to sleep...poor baby sounds just gunky and something isn't feeling good)...Luckily, Sawyer sleeps through this...and Tristan sleeps through anything.
.........well,  Friday was an eventful day.  I started the day by going to calm down Connor and realizing his apnea monitor and feeding machine were all hooked up but I had never turned them on for the night.  I felt beyond upset about this and it took me quite a bit to get over that I did this. ...Luckily, Connor was fine and just hungry.  Instead of leaving the feeding machine on continuous a few more hours, I just decided to stick with his routine. ....he wouldn't be able to handle this if I screwed up all the time but apparently one night was ok.  I can bet it won't happen again...atleast not any time soon.   ........well, Connor had a hearing test and ENT appointment later that day at 1pm.  Sure enough, I had a call from the GI (gastrointestinal) clinic saying that they had to reschedule his surgery for the g tube yet again because there was a national shortage on the peg tubes Connor was supposed to get. ....hmm, no.  If you remember, Connor was scheduled on the 1st of August for this surgery and it was rescheduled.  ....this rescheduling sets Connor back because we can't be as aggressive with his care when we're anticipating a surgery.  Needless to say, I politely talked to the woman calling and said I'd be up at Primary's today and really needed to see or talk to someone in that department because this was just ridiculous. ....long story short, the receptionist got an earful (though I was nice because it really wasn't her fault) and she sided with me, talked to the doctors and called me back with a referral to the pediatric surgical unit.  Basically, I ended up calling the surgical unit and was lucky enough to get an appointment that morning.  We may have looked like crap because I mean I literally hung up the phone, we all dressed quickly and jumped in the car to get to Primary's in an hour.  ........well, a quick discussion with the surgeon and letting him know this was needed yesterday and we're scheduled for the exact same day, this Wednesday.  The only difference is that he won't have what's called a peg tube, he'll have a Mic=key that is placed laproscopically.  Not too many differences beyond how it's placed and who manufactures the tube.  Also, it's providing the exact environment he needs (meaning a g tube is a g tube regardless or who places it or makes it).  Also, the doc seemed no nonsense and the only thing that bugged me was how nonchallantly he said he'd go ahead and do the nissan (pronounce Nee-son) if we wanted.  ...this is the surgery where they go ahead and twist the stomach at the same time they place the g tube.  Very big deal and NO.  Twisting the stomach is recommended for reflux but we need to try every other thing first.  And yes, we are aware that the g tube may initially make reflux worse but Connor has got to get rid of the NG tube.  The NG tube keeps the sphincter (flap that opens and closes stomach) continuously open.  With the G tube that flap will finally act in a manner that is natural.  If the reflux gets worse with the G tube, we'll know it'd be worse with no tubes at all so we proceed from there.      ..........we ate a quick bite at the hospital cafeteria after that appointment and tried to let Sawyer run around a minute before asking him to get right back in the stroller for another appointment.  During this short amount of time we met a very nice lady rocking what I thought was her son.  Apparently, he was her daughter's son.  When this little guy (9 years old tomorrow) was just 2 weeks old, his meth head mom and boyfriend put him down for a nap...on his face.  He barely survived and now is trached, tubed, wheel chair bound, etc.  ...I mention him because like I've said before, a children's hospital leaves an impression on you that you can't just shake.  These children change you because they're innocent and pure.  Your perspective on life and a gazillion other things changes.      ........anyway, we moved on to the hearing appointment.  Connor was pretty much asleep and that was awesome.  They stuck a sort of plug in his ear (one ear at a time) and that was it.  I saw one paper that had pass, pass, refer for one ear and the other ear said refer, refer, refer.  The tech said that mild to moderate hearing loss is expected in Pierre Robin babies due to their structural issues (meaning the small jaw and cleft palate).  From there, we went to the ENT's office.  He looked at the papers and I want to say he said the right ear was better than the left and then he said that Connor had so many other things going on that we'd handle his ears later.  Wow.  ....honestly, normally, I'd have blown a gasket.  But, this time, he was right.  Yep, Connor has some hearing issues and I'm honestly not certain to what extent.  I trust that his ENT would intervene if something needed immediate attention but Connor has basic life needs that are the most important right now.  ....anyway, the ENT discussed the tongue tie and palate with us.  Apparently all of Connor's doctors have been emailing back and forth.  These doctors have been his pediatrician, plastic surgeon, GI, speech therapist, craniofacial orthodontist and the ENT.  ....well, they have collectively decided that in addition to the g tube surgery, they want to clip the bottom of his tongue and also place a more permanent palate prosthesis.  .....WHOA....3 surgeries, 1 day.  Connor is four and a half months and has already had 3 surgeries.   ....well, the thinking is that it's better to do it all at once.  He'll already be under anaesthesia.  The clipping of the tongue has more potential benefits than risks, and with his age and hopeful growth the screwed in prosthesis may work better.   ........once again, we just have to trust our doctors.  It is comforting to know that it is a group of doctors advocating and speaking towards his care versus one professional opinion. there you have it.  3 surgeries this Wednesday.  I know the g tube and clipping of the tongue take less than an hour.  I'm not certain about the timing of the prosthesis.  I'll email Dr. Siddiqi some questions Monday.  I certainly hope it's a short procedure.    ..........well, it's going to be a crazy and emotional week.  Family will be driving in today or tomorrow.  We're excited to see them  but know they understand hosting responsibilities are a bit off right now.  ...Ireland's birthday is today and we will do something to honor very first 39th birthday is Tuesday and I just want a piece of cake...surgeries are Wednesday and he will most likely be at the hospital 2 days....from there, we'll need to learn how to care for the G tube and anything else post surgery.  ...Friday morning is an appointment with speech therapy that i foresee me having to cancel.  Monday is the first day for early intervention.  .........take care....pray for Connor.......remember Ireland by loving yourself and your loved ones fully ....also respect those who have lost a life by living yours well.  It is a gift and that is not a cliche but a fact.

One of my absolute favorite pictures of Ireland.  Not only does she just look beyond precious but this was a good day.  Her eyes were open for us after being told that she was sort of down AND there is a glimpse of a sparkle.  I can only imagine what a beautiful 3 year old she'd be.

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