I'm 1. Watch me go!

One of our biggest frustrations in this year long journey has been the GJ tube feeding.  For anyone who is new to this, that is a Gastro-Jejunal feeding tube.  It is surgically placed in the stomach and fed down into the intestine.  It is accessed for feeding and med doses through a "button" on the outside which has 3 ports.  One goes into his stomach, one into the Jejunum and the 3rd is to the balloon on the inside of the stomach.  That is inflated with water to hold the button snugly against the abdominal wall.
With that quick review out of the way, we have had a love/hate relationship with this tube.  If I'm being honest, it stays mostly on the hatred and bitterness side, though I am thankful it helped him become the "chunky monkey" he is today.  I am quite certain it was necessary for him to gain weight following his hospital stays, though I question the amount of weight he has put on.  His weight compared to his height has been a bit out of whack, and this can lead to issues for his cardiac function and mobility.  His GI doc and dietitian have been pretty much on the same page as us and didn't really expect the results we have seen.
Our other concern is that Tiernan's reflux seems, in large part, to be caused by the constant J feeds.  You cannot feed large amounts at a time into the intestine because it doesn't expand like the stomach.  Therefore we have to have him fed continuously over the course of the day.  At first it was 24/7.  Soon we were able to get it down to 20 hours on and 4 off.  Until just recently he was still being fed for 18 hours a day with only a 6 hour break.  We hardly ever saw the reflux during his hours off the feeds, while it dramatically increased upon beginning them again each day.  Sometimes he would start to gag within minutes of the pump starting.  Anyone who has dealt with a baby who spits up a lot knows this can really put a damper on things.  (ha ha)
We also felt he was not progressing with his oral feeds due to the constant flow into his system (though the docs would argue that shouldn't affect his hunger).  He had ZERO interest in drinking any sort of liquid from a cup, bottle, or through a straw.  Whether we tried juice, flavored his formula (still foul, in my opinion), or plain water, he wanted none of it.
So, though our next appointment was not until next week, through my persistence, Dr. Pickens decided to reschedule for his day off so we could get a care plan set before starting with Nanny K.  (more on that later) Problem was, his day off happened to be the day of T2's birthday bash.  But you don't say no to a Dr who is willing to sacrifice is off time to meet with you.  So we went in ready for a showdown.  What we got was mostly agreement from Dr. P.  Like I said, we are most often on the same page, thank goodness.  He agreed that it was the time to move and was even in favor of trying for 12 hours on and 12 off.  I couldn't believe it.  However, when Stephanie, the dietitian came in she proved to be the harder sell.  Understandably, she was struggling to make the numbers work.  If we had him off for that long, he would run the risk of becoming severely dehydrated.  NOT our goal.  So she calculated and recalculated, and was able to get us to 14 hours off and 10 on.  Definitely a good compromise.  Then came the "however".  I order to get him to an ideal amount of fluids, he would need to take in an extra 8 ounces of fluid per day, whether that be from drinking or eating baby food.  (Baby food is 90 % water so they count it)  Well, needless to say, our happiness dwindled.  As I said before, he was not drinking ANYTHING, and on a really good day he MIGHT take 2 ounces of food.  Then she told us that was the ideal amount.  Except he had never really been at the ideal hydration level.  So, since he had been doing alright at a lower hydration level, if we could get him to take at least 3 ounces by mouth each day, he would be at his current level of fluid intake.  We felt a bit more encouraged, but still unsure if he could do it on a regular basis.
In addition to the change in feeding schedule, we were given the okay to lower his wedge.  (Truthfully, we had been allowing him to sleep flat on the couch for several weeks out of desperation anyway, but it was good to get the Doc's approval.)  I can't say the lowered wedge has really changed his preference for the leather couch, but we are working on it.
So, after a wonderful birthday, we entered a heat wave.  90 + degree weather without central air and a baby whose fluid intake has just decreased aren't a good combination.  However, on Saturday, Tiernan decided to show us all he had been listening to Stephanie the day before.  While I was out with my mom, sister and aunt, Jason called and told me Tiernan had taken to drinking water out of Jason's cup.  And not just a little.  12 to 14 sips.  No reflux.  No choking.  The baby who doctor's swore may aspirate at any time was drinking unthickened water with no problem.  WHAT?!  So J pulled out the cup trainer his therapist had gotten him (which he had not been willing to use).  Same outcome.  He was so excited about the cup he would get angry if J didn't let him drink.

sippy cup.  (funny thing about those-they are all fancy and spill-proof these days, which actually doesn't work so well for a kid who has lost the sucking ability.  He'll regain that, but it was a bit of a challenge.)
Now that he is off the tube feeds for the full 10 hours per day, he hardly refluxes at all.  Only once the feeds start.  But even that has decreased significantly.  His ability to keep over an ounce of anything, (food, meds, liquid) has improved significantly.  We are proceeding with confidence that our instincts were correct and we are moving in the right direction.

On the therapy front, Tiernan is getting closer and closer to crawling every day.  If my eyes did not deceive me, he actually crawled on all fours for about a foot yesterday.  He is growing stronger with his standing and attempts at cruising.  Amanda, his therapist, feels his feet and ankles are still a bit weak and are therefore inhibiting his stability somewhat.  We are on the lookout for high top shoes (somewhat difficult to come by) to offer him some support.  Little things keep popping up as reminders that he spent nearly 4 of his first 6 months in the hospital;  things like the toes curling up when you touch the bottom of his feet.  The grasping reflex when you put your finger in his hand.  These are things that babies usually stop doing around 6 months of age.  Again, he'll get there, but it is getting in the way of his desired mobility.  For now, he is becoming very proficient in spinning around on his bottom and somehow working his way across a room.  This is not a problem if he is off his feeds, but while attached to a tube, it means someone needs to be right next to him un-twirling said tube from around and under him.  He adores therapy.  His favorite thing is going in the swing.  Yes, that is therapy.  He gets a giant grin on his face the moment he sees it and it does not leave.  Very cute.

Finally, (I hope people are still reading) Tiernan has begun his days with "Nanny K".  Kris is the mom of one of Jason's 9th grade honors history students from last year.  When Kayla came home and told her mom of Tiernan and Jason's need to take the rest of the school year off to care for him, Kris emailed J and offered her childcare services.  Last year was not an option, but this year is.  She is a gift from God.  Nothing else can explain this.  Kris has been a stay at home mom for many years.  Kayla is beginning 10th grade and James just graduated in June. Though she and their dad have been divorced for a long time, he has always made it financially possible for her to continue this.  She spoke to him and they agreed that their kids did not need her sitting at home twiddling her thumbs and that she should go ahead and take Tiernan on.  Translation: we are not having to pay her the amount we would have to pay someone trying to make their living on just that income...nowhere near.  We would never be able to afford a nanny if that were the case.  Part two of this blessing: Kris's work history was as an Occupational Therapist with fragile kids in the early elementary grades in Federal Way School District.  She did her internship at Seattle Children's Hospital.  Translation: whether or not we can continue with Amanda after Medicaid runs out in November, Tiernan will have daily therapy with Kris.  She seems to be unflappable in her resolve to care for our high maintenance boy.  Though he is recently improved on the napping (on a surface that does not breathe and answer to the name Mommy or Daddy) her response has been, "If he needs to be held, then I'll hold him.  No problem."  (remember this kid is a whopping 23 pounds!!!!)  She has set her home up with all the necessary baby gates and baby proofing devices.  Acquired an almost unused new car seat, a high chair, a pack and play for naps (if he ever graduates from sleeping on couches) and toys galore.  She lives a mere 5 minutes from Jason's school and may even be driving him back to our home in the afternoons because she may have to pick Kayla up from PHS and take her to golf practice out in Graham.  (Just south of us)  We are still anxious that she will, at some point, decide it is too much, though she really has not given us any indication that may happen.  We just know that without her we are up the proverbial creek. We give daily thanks and praise to God for guiding her heart to do this and ask for prayers that it will continue to be all we need it to be.
So, as we begin the school year, things are looking great.  Even 2 months ago I didn't see how we would ever get to this point.  But God has been faithful, as always, and here we are.  Thank you all for your prayers and good vibes.  Thank you also for reading this novella.  :)