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Wednesday, August 29, 2012

Today's thoughts

We've had the G tube going on a week now.  I initially thought we were the lucky ones who everything has looked nearly perfect since then but no.....our world is still feeling crazy.'',,,,,,,,,I am beginning to feel a bit crazy.  I've discovered different support type groups on facebook and yet don't feel like I am part of any of them.  There is the 'I love my tubie' site where all of the people in there are tube fed and throw around questions.  Not a bad group and has infants parents on up to adults fed by tube.  There is the 'Utah special needs' site.  This one I haven't quite figured out.  It feels 'clickish'.  There is the site for 'wide smiles' for those with cleft palates, lips and/or any diagnosis that affects clefts.  This one is truly only helpful to those babies born with cleft lips....it's like Connor didn't fit the profile because he looked fine on the outside...and no one had a clue about Pierre Robin or simply did not leave a comment.  ..............this learning how to live your life with a special needs child is not easy or for the faint of heart, though lately I'm feeling cracks in my personal system.  ......sometimes, you walk around feeling like no one has a clue what you are going through.  Connor is going to be 5 months old tomorrow and we are still figuring out what's going on with him.  He has a decent pediatrician that is amazing when she sees him.  We have her personal number but damn if I can get ahold of her the same day I may need an answer.  Part of me understands this because she has her own life and then the next part of me thinks why did you give me your number if you're not going to get back with me soon, or in a day, or at all?!  ...Connor has a very talented and wonderful Craniofacial Plastic Surgeon.  This man is kind as well as gifted.  He has transformed his jaw to where he can now breathe.  He's thrown in a prosthesis in hopes that it'll help Connor until he can permanently fix his cleft palate.  ...the thing with the plastic surgeon that I've loved is sometimes I wonder if he's looking at all of Connor.  With the tongue tie thing, shouldn't we have been discussing that the first time he looked in his mouth?  Also, we were asking questions about Connor's skull months ago.  His head measures at the 1% line of the developmental scale.  Shouldn't this be looked at more thoroughly than a glance and 'no worries, he's a beautiful child'.  No one would deny his cuteness...please don't deny that he needs some help out developmentally.  Our ENT is not going to win sweetheart-of=the-year but he is knowledgeable and came on board when Connor was having a difficult time in the PICU when he got his initial jaw distraction and had a horrible time getting off the vent.  I didn't initially like the ENT because I thought he downplayed everything.  Now I respect that he sees the complexities going on with Connor.  He is very involved with his swallowing issues, taking care of his ears, and does his best to calm us about this possible hearing issue we're now faced with (more on that in a minute).  Our GI...oh, we don't officially have a GI.  We have a kind surgeon that placed a G tube because it was recommended by Connor's speech therapist and pediatrician.  The GI department looked at Connor during a hospital stay when the distractors came out (and ear tubes placed) for all of 5 minutes.  The GI guys seemed to look at him and simply say 'we aren't even sure he has reflux'.  WTF????  They're also the one that went ahead and scheduled the G tube surgery that kept being cancelled due to peg tube shortages and the peg tube is what I'm learning Connor currently has.  ....I'm clearly pissed at these guys.  I need the GI involved.  ....one good thing is that his upper GI test showed reflux after simply 2 ounces of formula....I've been told this is a big deal because many times kids with severe reflux do not show it during these upper GI's.  .....Connor's speech therapist is wonderful.  She is young and not as experienced but has clearly taken an interest in Connor and this means alot to me.  She wants him to thrive and sees I'm taking daily notes and doing all I can to get him on the right path. .....Connor is also now in the Early Intervention program of Utah.  We just met these people, in our home, for the first time Monday. We filled out a ton of paperwork on his health history and he was developmentally assessed.  There was a nurse and an occupational therapist present discussing the basics of how the program works, the fees, and then the initial assessment of Connor being on a scale of a 2 to 4 month old.  This program will have a speech therapist, an occupational therapist, a specialist and mentor from the Utah school for the deaf and blind PIP {parent infant program).  They will devise a plan in the next week or two and we will be set up with once or twice a week visits from these specialists.     ............the school for the deaf and blind threw me for a loop.  We were informed at our last ENT appointment that there was a definite hearing loss, during the test the nurse mentioned a mild to moderate loss is normal with Pierre Robin, and basically we had so many other things to discuss that particular appointment that we put off talking about his hearing.
........well, now that I've gone on about his care just to where I didn't even hit the iceberg but gave a window into our world....I'm going to rant a bit about my current worries.  And trust me my worries have gotten ridiculous in length but each are important.    But right now at the top of the list is his hearing and this G tube.  
........first, the G tube.  I thought we were smoothly easing into this G tube thing.  We've been keeping him clean, figuring out how to best  keep him clothed and comfy (cut a hold in all his clothes), keeping his tube up and straight as we can (gauze ball underneath the tube...I'll post a pic), and vent him to keep gas at bay (just hooking him up to an empty syringe and letting gas come out of his tummy).  Well, he's rarely had the gas issue but has been spitting up.  His spit up still comes through his nose despite his new prosthesis and of course, out of his mouth too.  I hadn't noticed a major increase in his spit up so have just noted it on my daily notes sheet.   ........I have noticed he seems to do it more after I've given him bottles but he rarely has had more than an once and a half at a time (and I am still just doing two bottles a day though I want to increase this so he can be independent of the tube).  .......well, yesterday, I put him in my bed for a small nap.  I layed down with him since he would be flat versus his elevated bed.  He woke up a bit fussy and then had a massive puking/spit up session.  It was scary.  I had possibly given him about 10 more cc of formula in an hour's time than normal and he did have a bottle of an ounce before getting the rest of his nutritional needs through his bag (g rube fed)....but he puked a ton and his little tummy sort of spasmed.  .......well, I changed the sheets, had to let the bed dry out before adding new sheets and wrote it in my notes hoping this was a fluke.  ......sure enough, his next g tube feeding with no bottle resulted in a bit more spit up afterwards.  .......then I gave him a night time bottle, he barely drank 5cc before falling asleep, I hooked him up to his apnea monitor, and then his machine for his usual 40ml an hour he receives for a continuous feed during the night (g tube feeding).....and 2 hours later, I'm startled to hearing him choking in his bed.  ........His poor face was covered in formula that seemed a bit mucousy.  ....it was a ton again.  He was sort of doing the retching/spasm thing and I'd say he easily spit up most of what he'd received those last two hours.  His bed, floor and I were soaked.  I had disconnected him from his monitor and his feeding machine as I picked him up.  ...I tried to call his pediatrician but got no answer.  It was 10pm...maybe she was asleep...or didn't have the phone.  I tried to call Mikey but he was working.  I racked my brain on who to call.  I considered facebook but the responses can sometimes be nil or hours later.  .......I ended up calling Primary children's and asking to speak to the surgeon on call since his g tube was placed by the surgical unit.  .......I got a very nice intern.  Poor Connor was continuing to spit up and it had become more mucous looking and he was also just weak and tired.  ...man, this stuff is scary.  Anywho, talking to the surgeon, she said to decrease his feeds for the night by half and if we had it (we didn't) give pedialyte.  The next step was to call the pediatrician in the morning to get a same day appointment.  ..............Well, needless to say, I have hardly slept.  I finally went to sleep around midnight.  I wanted to hold Connor or sleep with him but felt he needed to be on his apnea monitor and in his bed which is at an incline.  ...He was asleep before I even layed him down and has slept all night.  I have to check his diaper this morning to make sure he's peeing and definitely get an appointment today.  He can't get dehydrated.  ....this is so very upsetting.  I don't want him on a tube forever.  I don't want him to get the nissan surgery (pronounced NI-Son...and the first question out of the surgeon's mouth when I called).  The Nissan is where they twist the top of his stomach and I have not researched it too much but he hasn't even been truly seen by the GI department.   .........ugh, I'm sitting here wanting to increase his bottles, throw a spoon in his mouth.............Connor cries for the bottle and wants our food when we eat for meals.........and meanwhile, his body is not allowing this.  ........depressing in a way I can not presently describe.
..........as for the hearing.  We were beyond surprised when the early intervention people said he was on the list for being added to needing help from the Utah school for deaf and blind.  First off, he hasn't been tested, but his eyes seem fine.  ..........we're aware of hearing issues but have not discussed them with the ENT. ......yesterday I called our ENT office to schedule an appointment and talk to a nurse.  The nurse emailed our doctor and we were called back and told that he'll be performing another kind of hearing test on Connor on Friday.  Ear tubes can affect his severe hearing loss results so he needs to be evaluated more closely this time.  ......I have googled all I can think on this subject and am just left feeling like he'll probably have hearing aids.  Most kids with the severity of Pierre Robin he's had have up to an 83% loss of hearing (a few reports stated this same number) and are usually helped with hearing aids and tubes.  I'm a little confused that he has the tubes already and is still showing such a loss for hearing but I'm in the beginning stages of this latest diagnosis so don't know too much about this topic.  .......this was the scariest thing to me yesterday morning and by midnight last night, I feel like now the g tube is my scariest thing.
..............I hope to get an early appointment with the pediatrician this morning........and I also hope I can fit in a good nap today.   ............Stress is getting to me.  I have a love/hate relationship with facebook because I want answers and to hear from people dealing with these same things but I'm learning each special needs baby/kid is unique to their own issues.  The parents of these kids are also stressed.  I think the comparison game plays in our heads and sometimes you feel support, sometimes you simply don't.   ...............I will say I have atleast one friend that I've met through technology that has been an immense help to me.  She has more than one special needs child and she manages to relate to me, make me feel less alone in this initial journey of discovery with Connor.  If I only have her in my arsenal of truly relating and understanding my ups and downs, I think we'll be ok.  ........I do feel support from my friends and family....and trust me, I need it.    ..............please continue to pray for us....tomorrow is also what is known as Ireland's 3rd angelversary....
....and yes, I feel like that person that has nothing good to say so should possibly say nothing........but this is my life right now and I have to get these things out.

 
Family that was here for an entire week.  I think they and I were worried about Connor having his g tube surgery smack dab in the middle of their visit but it ended up being a good thing...a blessing even.  We all had a great visit and I miss the babies terribly.  Hannah, Alex, and Whizzy(Winston), we wish  you lived next door!  Sawyer cried all afternoon when you guys left.
 

 
Sawyer, completely pooped after a day at the beach (Pineview).

 
Connor, after the beach.  I was in a complete panic mode our entire time there wanting to make sure he didn't get an ounce of sand on him.  And he didn,t.

 
odd picture of the gauze ball I use around Connor.

 
Sawyer's fav book.

 
Connor in his bouncy toy.  We place the wii under him so he feet touch.

 
Brother time.

 
Tristan resting.  He's been looking for jobs and a major help lately!

 
Connor laughing.

 
No oral aversion here.

 
i want to eat this entire pound cake....but it's for Mikey and his coworkers.  A friend is retiring.
 


Friday, August 24, 2012

Pics from 1st 24hours past G tube surgery....

One of the last pics with the dang g tube.   Some of the pics may bother a few but I have no pics of the actual stoma or anything truly graphic beyond the taped up areas from his stomach.  I hope this is enough of a sort of disclaimer if you are easily offended by medical things...then again, this blog has been largely medical.  :D

His Auntie Megan loving on him the morning of his surgery day...house is complete mess but we've had fun with the incredibly full house we've had.

One of the first pics post surgery.  Connor scared me a bit at first.  His heart beat was past 200 for about 10 minutes when the post surgical team calmed me to see if I could calm him down before they got him on some strong med (don't remember the name, started with a D).  ....anywho, took a while for them to vent him but he got there.  I scored major mommy points for getting his heart rate settled in despite of my initial fear of picking him up (he had many more lines and such attached to him).

I was initially shocked with the g tube and his lips were majorly red from having the prosthesis put in.
BUT...gotta say, he looked great.
Sort of waking up .....and true Connor fashion, was smiling once he saw us.

Pretty dang drugged up with morphine and tylenol and remaining effects of whatever else he had.  But wow, he was truly wiggling around and smiling a ton.  He tired pretty quickly but I'm still amazed.

This is it.  I sort of got a view of his prosthesis but would be hard to get a pic right now.  ....he has what's called the Mic-key.  Most doctors nowadays put the button in first thing....but Connor has an old school doc that prefers the tube first.  It has to have a curl to it that sort of stands straight up from his stoma (the hole in his stomach).  His reasoning for this is that you get a cleaner hole.  If he initially gets the button, it is easier but he can move around so much that the button would wiggle the hole as it's healing and make leakage happen much more.  ....it's hard to explain but I understand it as I look at the differences and sometime I'll take a pic of the button that will replace this tube (we have the boxed up button that will be placed in a clinic visit in 6 weeks).  ....but the tube comes out of his tummy and is taped in a sort of handle fashion....and first thing Connor does when he's up and the blanket is pulled back is pull the thing.  Gotta say, the next 6 weeks will not be easy.

This pic shows the tube a bit better.  There is a cap at the stoma and underneath is gauze to catch any possible leakage from the stomach.  The first cleaning and removal of all that tape showed absolutely nothing.  No blood, nothing.  The doc may be old school but he's good and I totally got what he meant by placing this first.  ....also here, the tube doesn't have the cool tape job that helps Connor from pulling this out. ....also near the blue foot of the blanket you can see the port where he will get his nutrition and meds.  This port only differs from the g tube port in that it has a 3rd port where you fill the balloon that keeps this tube in his stomach (the balloon rests at the base of the tube, is filled with a small amount of water that litterally is in his stomach and the cap around the tube is pushed down to sit at the top of the stoma).  I hope this makes sense....the balloon and cap make a sandwich of the stoma and it's all that secures the thing. 

He looks pretty out of it but he wakes and plays....wears himself out and has stayed on a morphine and tylenol diet this first day (also had some morphine initially last night).

Because of not being able to lay that tube down flat, it's sort of nerve racking figuring out how to cuddle...but we'll get there.

My lack of sleep and his shows here but it's all good, we'll get where we need to be.  He had a tough time his first little feeds but that's to be expected.  He's been suplemented with saline water right now to keep him hydrated.  ......he also had two one ounce bottles yesterday and considering he has a brand new prosthesis screwed into his palate, I'm impressed.  And yes, he spit up a bit but again, he'll get there.

This shows the tape job I'll have to master each morning with Mikey's help.  It's a two man job because Connor is a total wiggle worm.   .....and he loooooves to pull on this tube but they assure me that it should stay put.  I'm told onesies will be my best friend as far as dressing him goes.  My question for today will be how on earth do we manage this with the car seat buckles?!

One of the pics before he went to sleep last night.  He was smiling but my flash manages to take it away every time!!!  .......he slept all night and had his first continuous feed throughout the night.  They started with 20ml an hour and worked their way up to his normal 40ml an hour.  I'm sitting next to him now.  He's still sleeping and doing ok.  He's had a few spells where his respiration rate slows big time but other than that he handled his night well.  Today he'll start a few pumped up bulous feeds.  They were going to start him right off on his home schedule of 100ml 4 times a day but after having a sort of rough start yesterday and getting so much last night, that will probably change after talking to the doc.  Too much too soon doesn't work well for Connor.  .......bottom line though, he's doing amazing.

Tuesday, August 21, 2012

another pre-surgery day....

Well, it's my birthday.  I am 39 today.  For probably the first time ever, it truly requires no attention.  Of course, I've said that in years past and would probably have been sad had I got no cake or acknowledgement but today, I just will be waiting for our guests (they stayed in hotel instead of coming last nigh partly because their youngest wasn't well though it sounds like he just indulged at the treat table at a wedding a bit more than needed) ...and we'll be waiting for the call from Primary's to let us know when Connor's surgery time will be tomorrow.  .........I did get up to beautiful flowers and one of the best cards ever from Mikey.  ........I got up early because Connor has been up pretty much ever hour to two hours.  It was time to just get up and throw him in our bed.  I can sleep there too but it's not very comfortable because he's got equipment to bring along.  Can be done, has been done, but better for all for me to just get up.  ......I'm a bit worried his reflux is just getting worse.  It's something I'll need to discuss with his pediatrician or possibly try to get input from GI while we're in the hospital even though the GI department technically are not part of his team this time.  We've been paying attention and even during the day it seems he has more and more of his 'episodes'.  ........since he is on a continuous feed at night, it just has me wondering if a constantly full belly means even more acids in the stomach.  ........who knows......plus, tomorrow's surgery will be a game changer.  The G tube will either make everything better or it'll make things worse.  It is time to find out and we can only pray he'll be in the better category.   ..........I ended up getting a call from Dr. Siddiqi (plastics) yesterday.  We (his medical team and I) decided to NOT do the tongue tie surgery.  It will get done when his cleft palate is permanently repaired but with him getting the screwed in palate tomorrow, that is enough trauma in his mouth for one day and we do not believe the tongue being cut is going to be a significant change when it comes to swallowing.  The prosthesis will hopefully make a huge change in this area.  It'll also hopefully change the gunkiness he's always having due to so much mucus.  Simply having the NG tube out of his nose should help this too.
............I ended up joining a group on facebook specific to kids with special needs in Utah.  I may be meeting one of the mom's from that group tomorrow.  I hope I do.  It will be so nice to meet someone who's dealt with the kind of things we've been going through.   ...........I also joined another group that is nationwide and specific to kids with tube feeding issues.  This group is pretty cool because I can just go through prior discussions as well as ask any question and almost instantly have an answer from someone who's dealt with the same issue.  .........I love technology.  Seriously, we can  say this isn't easy but 10 years ago it would have been a much lonelier road.
....I keep hearing the G tube is easier but I sure am nervous about this thing.  It's been a huge mental hurtle.  To know we're placing something directly in Connor's stomach just feels wrong.  It feels like we're violating him somehow.  He'll have another scar, another appendage, .............trust me, it feels wrong even though we've had enough discussions and researched enough to realize it is the route he needs now.  ........I'm wondering what my reaction will be when I first see it.  I have looked up images and videos on caring for it.  It is truly foreign looking even though it essentially acts the same as an esophagus.  ........His going public will be easier in that he won't have something continuously stuck to his face (as in the ng tube).  He'll also finally be able to have a tape free face and that will probably feel so good.  He won't have something irritating his nose. ............we're doing the right thing so I really don't need to convince myself.  I just hate the unknown.  Is this going to show that his reflux is even worse or will it be the answer to simply giving extra nutrition until he can handle eating and drinking all on his own.  Time will tell.
.........I'll surely make posts to facebook to give the immediate details and at some point will post a few pics.  I won't post the g tube pic on facebook so will warn that I will post it on this blog.  Some may not be able to stomach the initial look of it and really, it's a little too in your face to post on facebook.  .........however, this blog isn't just for friends and family but also for those googling to see that they're not alone in this crazy journey  .........wish us luck to get through tomorrow.......pray for Connor to heal quickly tomorrow and each day.......and a little prayer thrown in for my boys and our family coming to visit today.
.........I also should quickly add a thanks for thinking of us while we continuously deal with our emotions lately.  Not only for Connor and the everyday family things but for knowing that Ireland has been especially close in our hearts lately.  ....I'm not going to lie.  Sunday morning was a hard morning.  She would have been 3 and I truly had a moment where I was extremely upset and just felt the world was not very fair to my family.  That moment lasted most of the day really.  ....ya try to swallow your tears but some days it's just hard.  Sunday was one of those days but I know people were praying for us, thinking of us and wishing things were easier.  I appreciate that.  It helps more than you know.
..........lol....I'm such a horrible blogger...write too much but anyway....wanted to say today should be fun.  I am truly excited to see my family.  My husband's cousin, his wife and three kids will be here.  ...it sucks we won't be here the entire time but Sawyer will get to play each day with the kids and I will have additional support here.  We will make the best of this time.  ...........also, despite Connor's being up so much at night, he's definitely having his rough times during the day but he's also learning to want to play some.  He loves things that light up.  We're starting to think this has alot to do with his hearing but who cares, he loves the different stuffed animals with light up hearts and faces.  He also has a small, hand held type toy with a mirror that he loves.  ....Sawyer is hilarious and it's hard for us to keep up with him sometimes.  He's really into cars, plain ole' finding something to push while he runs everywhere, he's an avid hoser-downer (gardener of anything he can spray with a hose) and loves singing the itsy-bitsy spider (no words that make sense but he's got some moves!).  ...Tristan is seeking a J-O-B.  Harder than we would have thought.  Hopefully, something will turn up soon.  Also, gotta say, my man child is growing up.  He's been so much help since he's been home.  He doesn't seem as 'mouthy' and is truly helping around here.  He's sans girlfriend (and we're so glad, she made me feel I was ready to turn into a teen at times) and realizes (hopefully) that he's better without said girlfriend.  ........he actually put Sawyer to bed last night.  Have no idea if he knows how incredibly helpful that was.  I actually sat my butt in a bathtub last night because there was time for it.   Sooooooo nice.   .......as for the hubby, Mikey, I married well.  Yes, he can be a pain in the butt like all men have simply been made but he is a goooooood husband and father.  I have a best friend in him like no other.  ...he actually changes diapers, mops floors, does laundry, fixes formula and tends to Connor every night when he comes home from work.  Yes, in true man fashion sometimes he seems to think he should have an award when he does these things but more times than I can count, he just does these things because it is who he is.    I am lucky and so are my kiddos.
...so today, my birthday, I'm happy.  I've already got a nice amount of well wishes from friends and family.  I've got family on the way.  I have some gorgeous flowers on my kitchen table.  I have a family that exceeded my dreams.  Friends that are amazing (and Lori, wanted to give you a shout out...love ya!).  ....things are good.  Could be better but hell, everyone has something going on.

Hilarious moment from Sawyer.  He has started doing this when Connor is fussy.  We do not do this, he just manages to do random acts of silliness and God, I'm thankful.  We get to laugh every single day because of this amazing little guy!!!

xoxo......This one is coming into his own.  He's going to be soooooo happy when this tube is off his face.  Just last night he pulled it out to let me know he's sick of it.....every single day this one smiles and melts our hearts.  ...he has a commanding presence that sucks you in to just dropping everything and providing him complete attention.

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.  ..........it 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.  .......it'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.   ....today, 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.   ......so 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 her...my 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.




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.   .......today, 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.   ...like 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 more.....so, 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.  .....................so.................this 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.  ....it'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 week.....so 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.


Friday, August 10, 2012

Frustration

I tossed and turned all night.  ...yesterday's appointment with the craniofacial orthodontist went really well.  The minute we walked in the doctor had a shocked look on his face and said he expected a much skinnier baby after having read through Connor's notes.  ...10 points for this doctor because 1st, he read through Connor's history and 2nd, yeah...Connor is cute and chunky like that.  I'm betting his weight is past the 13lb mark easily. ....we've increased his feeds by 4 ounces a day in the past 3 weeks and he's also moved to a bolus feed of 100 ml in an hour, every 3 hours.  He's stretching that belly. (it was a slow process, but he handled it well)   ............This doctor asked if we had any questions before we started and of course, I asked my standard g tube question and he replied that he believed it was the way to go after having read Connor's notes.  ...after that, really there wasn't too much to ask until after he accessed Connor.   ....he had me hold him to where he was facing forward and his head was on my shoulder.  The doctor was very sweet in saying that Connor would probably get upset but really, Connor just sits there staring at him the whole time.  Dr. Yashimiro (lets give him the credit he deserves) looked at him for about a minute and decided he would definitely make him a prosthesis and that he believed he had an obvious case of tongue tie and that a fendulotamy (hope I'm getting that right) would also help Connor.  The tongue tie in the simplest terms means Connor can't lift the tip of his tongue, the bottom thing you feel when you lift your tongue is further up in Connor's mouth.  A fendulotomy would simply cut this area.  ....right then and there, Dr. Yashimiro sent an email out to speech therapy, the pediatrician, the ENT and to Dr. Siddiqi.  ...amazingly prompt and efficient.  ....also, he once again said that Connor may get upset but he'd go ahead and make a mold for Connor's prosthesis.  And once again Connor just put his head back and let the awesome doctor jam stuff in his mouth.  (adorable baby I've got!)  ....Dr. Yashimiro said that we'd have to come pretty often until his palate surgery since Connor is in a rapid growth time.  Luckily this orthodontist stuff is considered medical so is covered under our Blue Cross (though we had a mystery $50 fee yesterday).  .......anyway, great and informative appointment.  This man did not flip flop in diagnosis and handled the business at hand.  I would love to send a memo to all doctors to do this.  I love the personable docs but in that, I love them taking care of business even more...especially since that business means making Connor better, faster.    .........now, what kept me up last night was this tongue business.  I don't know if I've mentioned it in prior posts or not but we have addressed Connor's tongue at several appointments.  It seems to me it's a pretty simplistic diagnosis that is affecting Connor in a big way and I'm just a little pissed that no one has mentioned this before.  ....I will say that I got a small sticky note before he left the NICU that stated Pierre Robin, Cleft Palate and Short Tongue...these were the things I was to note on my call to the craniofacial clinic the first time I called and saw someone.  Obviously, I did just that.  Even more, as the weeks passed by, especially after that first jaw distraction surgery and initial assessments of feeding problems, we noticed his tongue didn't act as it should.  For crying out loud, he sees a speech therapist and I've blogged about pushing the tongue down to coax it to move correctly.  Countless doctors are jamming their fingers in his mouth.  ..........I made a facebook post and two friends from my upbringing posted about it.  One has a baby that had the surgery at a few weeks old to fix this issue so she could drink.  Another friend had it herself along with two of her children and they happen to live with it, no problem.  ...of course, I google it because in my friends' cases, those are two very different situations.  After further googling it seems pretty apparent that tongue tie affects people differently and on a scale of nothing to total big deal.  ...I'd say it's a pretty damn big deal with Connor.   ....Part of me knows this is not a quick fix to all of his problems but then again, if it had been dealt with much earlier, maybe he'd be drinking from a bottle instead of preparing for another major surgery.  ...I don't know but it sure seems to me someone should have mentioned this before.  I love my son's doctors.  I feel they take personal interest in Connor and do their jobs to the best of their ability.  I just wonder if looking at all of his complexities, did they forget to look at the simple, common stuff too?    .........I'm just sort of venting here.  Connor has an appointment with speech therapy today and you can bet your sweet buttocks that we'll be discussing this.  ...I really like Connor's speech therapist.  She is a younger woman that is very sweet and just a bit "boppy".  She drives Mikey absolutely nuts.  ...anyway, she is a total chatter box.  And well, I can be like that too.  ....today, I want less chattiness and some freaking answers.  I've read just enough to feel Connor could benefit from having his tongue clipped underneath.  I also realize that my hour of research is nothing on her training or the combined years of each of the doctor's training so I'll do my best to keep my mind open.  ....Next week, I'll see the pediatrician and also the ENT.  I expect some assessment and if he needs this, they better get it done.  ....Dr. Yashimiro said they normally do this when they fix the palate.  ummmm....no.  I have been binky dipping and watching him suffer through bottles.  If he needs this, they better get it done now.  I'm pretty sweet to each of them and they all compliment me as if I'm a saint and an incredibly great nurse.  Very nice.  Thank you.  ....BUT, they will meet the total mama bear/bitch that I can be if they don't get their sweet asses moving on this.   Apologies to the easily offended but seriously.....this is my baby and he's been on a hell of a course these past few months....not to mention our entire family has been on this ride right along with him.
Little cutie....they better recognize!!! 

yeah....sick of this crap....he wants a bottle already!!!

Sawyer's sick of it too!!!

Thursday, August 9, 2012

today.....

First thing..........Tristan is finally home!  YAY!!!  ....he went on and on about his dad and cousin, Shay, so that tells me he had an awesome time.  He took a gazillion pictures and I'm so glad he did.  He doesn't have enough of his dad's family.  ....and yes, I'm divorced from his dad but through the years we've remained somewhat friends and always respectful to one another.  It's been beyond a blessing. But I will add, sometimes it took effort on both our parts to respect the other.  His dad and I are very different people with different opinions.  I am certain Tristan is aware ....geez, he evaluated my kitchen last night because we have sooooooo much food...he knows we're different.  He also knows he's loved by all of us though and that's the point.  .........I'm a little sad because he's talking of wanting to go to Texas A&M, but hey, it's a good school.  It's just terribly far.  (makes me realize what I put my mom and dad through).  His grandpa lives out near that school and the military scholarships all but pay for everything (his dad has been active duty 20+ years now).  .....I guess I'll buy him a t-shirt or something to keep him focused when the lazy school bug inevitibly jumps up his butt. 
.....I've had a few people ask why we're afraid of the g-tube.  Honestly, it just seems so final.  It's the confession and admission that something is wrong with Connor.  Yes, we know he has problems.  I put my finger in his mouth and instead of him cupping his tongue as naturally as most of the world would, he gets excited, sometimes upset, chomps a bit and has his tongue sort of all over the place.  On occassion and working with him, he'll get it..  But you pop that finger or binky out of his mouth, place it back in his mouth, and his tongue starts going all over the place again.  ....I always thought the act of swallowing, eating, moving your tongue in a way that pushes food back was a natural and innate thing (the word is escaping me where it is like a heart beat and just does it without thought).  Anywho, these acts are learned.  From the first time your mama put you to a breast or bottle, you had to learn how to suck.  Breast feeding mamas probably really understand this because sometimes they have a difficult time coordinating their breasts with the baby's mouth.  ....mainly though, because I had a breast reduction years ago that cut most of my milk ducts, I've bottle fed my babies.  They drank slowly at first but I thought that was their size and not needing so much.  This is true, but it was also them learning to suck and swallow.    ...........Connor was born with that cleft palate that doesn't allow suction.  He has no roof to his mouth so he can't push his tongue up, hit something hard, and push back to swallow.  If you remember, I started feeding him from a haberman bottle that had a long nipple and I'd squeeze that so he could have formula.  At that point in his life, we had no idea that I was doing all of the work for him and he was swallowing merely because he couldn't breathe otherwise.  I do remember clicking sounds and also him having 'episodes' and they were most likely because he wasn't sure how to swallow here and there.   He was most likely aspirating (fluid going to his lungs) back then.  His reflux was aparent just because he'd have 'episodes' even after he'd been fed.  .....he was not even a full month and a half old when he had his first surgery (the jaw distraction).  I remember being so upset about him not getting off of the ventilator and 'developing' issues with feeding.  Looking back, he didn't get off of the ventilator most likely because he was simply so very young and because he had a problem from birth that was becoming worse and apparent because he was going through so much.  It is truly a miracle that he came home.    .......Connor still has no diagnosis outside of having Pierre Robin (born with receded jaw and cleft palate).  I'm positive he had some issues with swallowing from birth and am pretty confident we exasperated those problems from having that surgery so soon is little life.  Then again, his jaw was so far back that it obstructed his breathing and he needed that airway open.    ............him having the NJ tube was horrible.  The fact that it went into his intestines meant it had to be x-rayed for placement.  It was awful.  Connor has had more radiation in his young 4 months than most adults and alot of it is because he had the NJ tube.  ....when he went to the NG tube, it was scary because it meant I had to learn to place it.  I've conquered that battle and still hate doing it, but I am perfectly capable of the task.  The problem with the NG tube is that besides it easily being pulled out of his nose, it's a sort of magnet for mucus and because something is dangling down his throat, it's a natural obstruction that can hit his throat and sort of encourage reflux or gagging.  .......these tubes have been a blessing for Connor.  I hate them, get pissed about him having to have something taped to his face or jammed down his throat, but without them, he would not thrive.  ........the g tube will initially be as scary as the nj and ng tube were.  He will have a 'button' inserted in his stomach.  there will be a sort of cap on the outside of his stomach and a 'balloon' on the inside that I can fill with water to keep it from popping out.  With this button, after two weeks, we can connect and disconnect tubes when he needs nutriction or medicine.  There will be no more tape on his face or worries of him pulling the tube out.  I will no longer have to worry if I'm placing his tube in his stomach or lungs (a fear that has all but dissipated).  His issues with the mucus should lessen considerably.   .........the problems with the G tube are that he is older and it will hurt at first and whenever he hits it.  The first 2 weeks, he will have a tube that can not be disconnected from the 'button'.  The first 2 months, he can not be submerged in water from the hips up because the space between the inside of his stomach and the outside of his belly is open to the world, the germs, the water, everything (pause a minute and ingest that little bit of info because then you will get why we are scared of the g tube).  ..............There are benefits to the g tube but right now my mind just thinks of the time he'll have it and of the fact his little body is open to the germ world.   ............I've never been that mom that carries sanitizer and wipes everywhere.  My babies have been known to go to bed  with dirt under their nails.  And really, Sawyer and Tristan are healthy as can be.  ............Connor, of course, is too young to play like that but he's growing to where he should be able to experience more.  ..........We will have our first meeting with 'Early Intervention' the monday after his g-tube surgery and they will help determine where Connor is in his development.  They'll help us know how to keep him engaged and learning both phsically and mentally.  .....so, I hope I'm answering some of your questions dear peeps.  ...today is Connor's orthodontist appointment and we'll learn if he's a candidate for a prosthesis for his cleft palate.  We certainly hope it is something that would help him.  (with my sick nature, i hate continuously writing that my son needs help sucking and swallowing but seriously, its a big deal and he is considered special needs because he can not handle the most basic need of a human and that is awful)  ....anywho, orthodontist today and speech therapy tomorrow.  I will ask if they think we can do anything to further along his progress to where he won't need the g tube.  I already somewhat know the answer will be that he is doing great, thriving and learning....but he's got a long way to go.  I'll ask anyway because it'll make me feel better knowing that I am doing all I truly can.  ...I'll see the pediatrician next week and he'll also have a hearing test and follow up with his ENT (ear, nose and throat doc).
.........hope everyone is enjoying the summer.  Before long, it'll be getting cooler and some will miss this hot weather.  I'd say not me because I like snow and such but then again, we'll head into RSV and flu season and that is a topic for another day but it scares me to no end (had another description here but chose to be polite).  Just know, we do great.  We live each day as everyone else does.  We have tasks and do our best to accomplish them.  ...but I close my eyes at night and have fears....lots of them.   My mind wanders and I try to keep focused.   
...........ok, time to get everyone else's day started.  I think I'll make some scones, freeze some basil and take time to look at some of Tristan's gazillion pics before we're off to the craniofacial orthodontist.  Later, I got the movie "Blue Like Jazz" from red box for when the little ones are asleep.  I read the book and hope the movie is as good (heard it was great and challenges you spiritually).  ....enjoy your day and upcoming weekend.  loves and hugs to everyone.
Lucky not cooperating with Sawyer's "chill" time.

Preparing to binky/pigeon nipple dip.  This is thickened formula and because his last few attempts at taking a bottle were less than stellar, I am back to the basics and trying to coax his tongue into learning what to do.  I put my finger in this nipple, dip it in the formula and place it in his mouth while pushing the middle of his tongue.  Connor gets really happy and excited about all of this.  He starts to get upset a little when I push his tongue because he just wants to roll his tongue around the nipple.  I push to try to get his tongue to cup instead of go back.  If you tried to do what he does, I'd be hard pressed to find someone that could.  He has a motion where the back of his tonguesort of lifts while the front is still flat.  It would be an impressive parlor trick if it weren't so frustrating getting the basics down.

Connor happy as can be after we've been doing this a bit.  He doesn't always cup his tongue with each session.  Sometimes he'll get it and sometimes he just doesn't.  He can get a bit gunky after each session because his swallowing isn't exactly there either.  ....the g tube may help with this because there should be less mucus at the back of his throat.

Sawyer yapping away at breakfast.

Hehehe...he's a funny kid and pretty certain he'll actually be a lefty.

Thursday, August 2, 2012

Maybe some DABDA....maybe not

Well, it's been awhile.  We've been busy and I've frankly been tired.   ...........anywho, this week started Monday morning with me having to make a ton of phone calls.  I think I was in a sense of denial that Connor was doing so great and well, honestly...for once, I am stumped.   ......I don't know if I wrote it here before or not, but I read somewhere that when your child is born with a special need that we go through the same grieving process as someone who's lost a child.  Well, we are familiar with the entire DABDA (depression, anger, bargaining, denial and then finally, acceptance) process.  We got a ton of information on that after Ireland passed away.   ........I wasn't sure if this was true or not with Connor because I wasn't depressed at first.  Or, maybe I was.  I do remember screaming and crying the first night he was born.  I recall being sleepless but remember mostly, just wanting to know what was wrong and how do we fix it.  Ok, maybe that was my anger.  Bargaining?  I'm not sure about that one at all.  I don't recall screaming to God and asking if I could take his place.  I don't know if because we'd already dealt with another baby, another illness that I already knew that a scenario like that sure wasn't going to happen.  I think I just knew that we needed to know what he had and to find the answers to deal with it.  .....so, to me anyway, I skipped the whole bargaining step and went straight to a sort of denial last week.  Then again, maybe I was just being lazy.  A sigh of relief maybe.  I just know we had an easy week.  I had to see the pediatrician and it felt nice to have a sort of break from doctors and all their opinions and the seemingly endless amount of frustration of their extremely differing ideas on what was best, what is good for Connor, what isn't so great of an idea.  ....It was nice to sit with my boys and call Tristan.  We ordered pizza, watched a movie, had baths, threw blocks, threw tantrums....felt somewhat normal.   .....then at some point, I got a call from the speech therapist and she asked if she could see me at 5pm on such and such day...nope, Mikey's working...Connor's good....he's slated for the g-tube anyway, we'll see you after that.  Then I missed the call from the GI department that said Connor indeed needed an upper GI (xray to see that his esophagus, tummy and intestines look good).....that's when I realized I better wake up.  I still needed follow up appointments with plastics to make sure he was healing well from getting the distractors out, I needed to get a hearing test for Connor and a follow up with his ear tubes, I needed to set up times for early intervention to come out and start working with him, and I still needed to set up a time for our G-tube class....oh, denial.   ...or laziness.  or just needing a break.  Who knows?!   .....anyway, I did all these things finally on Monday morning.  The week looked crazy on the appointment book.  I had to immediately go to Primary's Monday afternoon for his upper GI.  That took quite awhile because there was no paperwork that he needed it.  And of course, Connor decided to pull his tube out earlier so the tech had me wait for the doctor.  Luckily, my doctor was a no nonsense kind of guy and he said for me to go ahead and place it so we wouldn't have to wait around for paperwork saying that it was ok for him to place it....oh, how we must cover the doctor's assets with a paperwork and charge for every little thing.  Bless this doc for having common sense and hope it doesn't screw him down the road.  ....well, the upper GI showed significant reflux after just 2 ounces of formula in Connor's stomach but the anatomy was all where it should be.  After a small discussion, we decided that it's possible the GI doctors will possibly try to push a surgery on us that twists the top of Connor's stomach to prevent him from refluxing.  We (the radiologists and I) agreed that surgeons will push surgery and that the speech therapists would try everything else before ever suggesting this sort of surgery.  Mikey and I agree that we will continue working with speech therapy before we'll consider a surgery of this magnitude.  There are a lot of complications that can happen with twisting anatomy and frankly, it'll be a last resort before we go there.  We've already had the discussion before with our pediatrician and anticipate having the discussion again with others.   ....well, Tuesday morning was time to see plastics.  Dr. Siddiqui believes Connor looks great and we'll just be using some vitamin E oil to work on healing Connor's scars further.  To date, his scarring is minimal and his big cheeks cover everything.  In time, they will fade.  And his actual jaw looks wonderful and his airway is very much open.   We did discuss the need of a prosthesis for Connor's cleft palate.  Because he has so many feeding issues and issues with horrible amounts of secretions (mucus), we figure a prosthesis can only help Connor.  So, next Thursday, we will visit with a craniofacial orthodontist at Primary Children's.  We won't see Dr. Siddiqui again until December or January to start discussing fixing his cleft palate.....once I came home from the plastics appointment, I had about two hours before my friend would be at my house to go with me to the G-tube class.  ....there isn't alot to say about the class.  It was informative to the point of confusing.  There are quite a few different types of tubes used and their are minor differences with these but the differences are important enough to be beyond important for your particular case.  At one point we were told a "peg" tube (the peg being the plastic part that is connected to the tube and seen from the outside of the stomach) needed to be turned once a day.  Then we were told if your baby would require a "G-J" tube (the actual tube that would go instead of in his stomach to go through the stomach and to the intestines) that this could not be turned as it would turn the coils of the intestines and be traumatic.  Wouldn't you know that Connor's surgery for Wednesday was cancelled because "peg" tubes were on back order.  Wouldn't you know Connor's surgery for a G tube may become a G-J tube surgery because of his reflux.    ......Contradiction???...yeah.    Also, the class discussed many things that simply wouldn't apply to Connor's particular condition and finally, I just sat back and thanked God that I had a great pediatrician that happened to train here at Primary Children's and knows all about these tubes and such.  I was nervous the first time we came home with Connor and his various tubes and all that was entailed with caring for him and the tube itself.  Today, it's just part of his routine.  Nothing too dramatic though I wish I could just throw a bottle in his mouth.   .....the G tube is a serious thing though.  I definitely got that from the class.  It will be a blessing in many ways but it is a very serious surgery.  For atleast 2 months, he will not be able to take a normal bath.  It will be an opening from the outside world into his insides.  If it were to be pulled out, it can close in 20 minutes due to the stomach being a muscle and contraction would take place.   ....all in all though, I know in time, it'll become part of our routine.   ......Connor is scheduled for his G-tube surgery on the 22nd of August.  There are other types of tubes that he could have but his particular doctor is trained for the peg tube.  I could get Connor to see another doctor and have a different sort of G-tube placed but by the time we would see another doctor, and have him rescheduled...it'd probably be right around the same date as he already has.  Part of me would like to see the doctor because honestly, I've only spoken with his GI doctor for all of about 5 minutes but apparently this is how things are done.  Connor has pages of files, multiple caretakers/doctors and this is where we are at.   .....so, I'm back to not taking breaks and doing our thing.  Tristan will be home Wednesday.  YAY!!!  Prayers for a good year for him and us during our teenage dramas.  Connor will see the craniofacial orthodontist and his speech therapist next week.  I am currently trying to get ahold of early intervention (where the heck did I put that number?!?!).   ....this morning, maybe denial again, I said screw it and after dipping a binky in Connor's mouth, I put thickened formula in his special bottle with the pigeon nipple (fancy nipple that he needs for cleft palate).  Yeah, I did it.  Because I'm his mama and I'm knowing him waaaaaay better than any doctor.  And of course, I'm thinking he's going to do this thing like he's never had an issue.  ...after 40 minutes, he may have got 10 ml (one third an ounce).  Yeah, crushing.  BUT, he loved it.  I will discuss it with the speech therapist next week.  I think the formula is too thick to even go through the stinking nipple but then again, he needs it thick so he doesn't aspirate the stuff in his lungs.  I'll binky dip later...or rather I'll dip the outside of his bottle nipple.    .....crappy road for Connor....sure wish there was a way to speed up this process.   ..........meanwhile, he was happy to be cuddled and have a bottle in his face.  .....Sawyer and Mikey are currently doing yard work.  ....things are good.  I hung out with a friend and her girls last night.  This past weekend I got to go to a birthday party (by myself!) and see good friends.  We also had some friends over one night and got to play a few hands of cards....nice.   .....all of these things going on with Connor are becoming not so dramatic but more of a routine.  It is redefining us I'm sure ....and in time maybe I'll see if we were affected the same as when we lost Ireland.  .....but, I don't think so.  Right now, I see similarities.  I see moods and how this has affected every member of our family in different ways but bottom line is, Connor is here.  He laughs and is even starting to play with toys.  He is aware and has all of his senses.  He will even be able to eventually eat and have a week with absolutely no doctor appointments.  ......and to end this, August has become my least favorite month.  Ireland was born and passed away during this month.  I miss her.  I love her.  ....this year she would have been 3.    We experience the entire spectrum of the DABDA formula some doctor came up with.  I wish she were here but know there are always going to be things worse than death.  We most definitely have accepted her not being with us.....but it will never mean we don't wish she were with us.   ....ok, prayers for a decent month.  Lots coming up and progressing forward is my constant task.

Connor's happenings as I sat and typed this up just now.

Night before last, Sawyer and Lucky hanging out during the olympics.  GO USA!

Tristan, last year.  Coming home in less than a week!...and this beautiful pic to remind the ladies he's beautiful!!!....and he's available again!!!!

And, my beautiful Irealand with her daddy.  I can only imagine her playing around with all these boys.....she'd be so spoiled!!!