If you don't have anything good to say...

Moms always say if you don't have anything good to say, don't say anything at all . Shame on me for not posting in the recent past because I felt I had nothing positive to say.  The last month has been challenging to be sure, and we have had more than our fair share of stress and tribulations, but some wonderful things have happened that I should have posted....for example, Gabriel's first Christmas with just Trent and I, and with the MacIntyres and with the Spanglers.  Since I was on call and couldn't travel to Muncie on Christmas day (and ended up working both Christmas eve AND the day after Christmas), the MacIntyres came to us....in full force.  We had 21 people for dinner (Macs, Bullocks, Genshocks, Cuthbertsons and Gramma Bert) and although I personally didn't cook and Gabriel stayed in his bed for most of the night, it was a success.  Its always great to have the family all together, and at this time, I am happy to announce that my brother, Bubba (Josh) and his wife Claire shared some good news with the family - that one more MacIntyre will be present at Christmas 2012!!!  Although he is already the uncle to three (on our side) and the God-father to both gabriel and levi, his son or daughter will be distinctly blessed to have such a great man to be their father....and don't even get me started on how clean their teeth will be!!!

When the Spanglers came to celebrate Christmas with us, I am proud to say I cooked a meal to be proud of - a successful pot roast!  We had such a great night eating, talking and exchanging gifts, and Gabriel cooperated (for the most part).  At that point in time, we were still trying to get him to take his bottles awake and he was fighting us terribly.  We were lucky to get in the quality time that we did....

On a less-fun front, Gabriel has been having some follow up health issues related to prematurity.  Although he was on NG feeds (nasogastric = feeding tube in the nose) from birth to October 31st and had progressed to all feedings PO (by mouth), he was always "pukey".  We told each doctor that we saw that he was tough to feed numerous times, going as far as making appointments specifically to talk about how difficult feeding times were.  Each doctor would listen and make new suggestions (feed him sitting up, thicken the food, change nipples, etc etc) none of them addressed the root cause - reflux. 

 It seemed we had been patronized for being "new parents" for months, until finally, Gabriel refused to eat ANYTHING while he was awake.  A side bar - although he was averse to eating, Trent and I were so concerned about maintaining Gabriel's health that we would literally spend 12-14 hours a day trying to feed him.  As it turns out, we weren't being ridiculous parents as most of our physicians originally assumed - at Gabriel's final refusal, we were seeing Tara, our NICU speech therapist (Trent and my dad were there, I had to be at work, a recurring theme in the next part of the story).  She watched Gabriel eat and immediately was alarmed at all of his aversions and behavioral tactics against eating which included physically batting the bottle away with his hands, crying, retracting his head, neck and body, flailing, oral motor dysfunction, not latching, and his tongue jetting in, out and on top of the nipple - it was clear that this kid DID NOT want to eat.  She said what many before her had - she was originally fooled by his appearance - if she hadn't physically witnessed him eating, she never would have believed the scope of his aversions simply due to his weight gain. So Tara immediately made some calls that ultimately resulted in Gabriel being admitted to Riley Childrens Hosptial for "testing and observation". 

The "observation" portion of the program was basically non-existant.  Trent and I continued caring for Gabriel as we do at home - changed all diapers, did all his feedings (waiting for him to fall asleep and then attempting to feed him), consoling him when he cried.  Unlike our beloved nurses at IU North, these nurses were "hands off" (the nicest way I can put it)....except for when he was finally asleep and happy....then, they would decide to come in and "do vitals" or "listen to him" or poke and prod him until he cried again, at which time they would promptly leave the room.  It was almost (and I emphasize almost) laughable how consistently they interrupted sleep and left him unhappy. Ugh.

The "test" portion of the admission included an upper GI to look for pyloric stenosis & reflux and a swallow study to look for aspiration & reflux....the problem with both of these tests is that Gabriel has to actually eat the food with the barium/contrast in it to see any results, and Gabriel does not eat when he is awake. Period.  Will not.  So we stood by and watched as the radiation tech forced the bottle with barium into his mouth and held it when he was sobbing and choking and throwing up.  It was undoubtedly the worst experience I have had as a mother, and I went through a lot in the NICU....just thinking about it makes me physically ill. The swallow test was more of the same...gagging, spitting, not wanting to eat but they did determine that Gabriel doesn't aspirate but he does have EXTREME reflux (which we have been telling doctors for two months).  The ongoing, untreated reflux has caused Gabriel to taste stomach acid, and develop esophagitis - which both lead to behavioral adaptations to avoid that very feeling - and therefore avoid eating.

In response to these test results, reflux drug therapy began, and the Riley feeding team decided on a 48 hour "awake eating" trial.  The plan was to offer him food every three hours, awake only, to see if he got hungry enough to eat.  I was immediately against this plan....I had been watching him refuse to eat awake for nearly two months!  These clinicians were so arrogant that they believed they could starve him into being able to eat when we had informed them multiple times that he wasn't able to eat, it was like he forgot how....the mechanics just weren't there.....but they were sure they could starve him into eating.  When I got back to Riley after work, it had been 20 hours since he had eaten anything.  After a long heated discussion with Trent about "blindly following the doctors regardless of our knowledge of our son", I insisted we feed Gabriel when we could (when he fell asleep).  This continued for the entire weekend, and on Monday morning, I took the day off of work and waited for the doctors to round.  Around mid-morning, a resident came in to speak to us about Gabriel's weekend and his care.  We expressed to her that we wanted to go home that day, but first, we wanted a specific plan of care....not side-stepping our questions, not ifs.....we want a plan, or at least a choice of two plans.....something concrete to work towards.  Two hours later, a team of 7 "professionals" were assembled in a conference room - OTs, Speech therapists, doctors, NNPs, residents.  They admitted that they couldn't re-train Gabriel to eat in a few days or even a week or a month, and therefore Gabriel needed a feeding tube - a few of the doctors were vehemently against an NG tube for a 7 month old while others thought he "might tolerate it".  Basically, they wanted us to request a g-tube (surgically placed gastric feeding tube) so they sent Gabriel home on an NG to "see what happens".  They knew what would happen, and it did.  NGs make older babies crazy - Gabriel gagged all the time, threw up, he pulled at it, pulled it out, HATED IT.  It only took three days before we called them back to inform them he needed a G tube - to which the response was, "we kind of had a feeling"......WHAT, are you people kidding me?  You KNEW this was going to happen??????  But I digress.

This week (Thursday), we finally got Gabriel scheduled for a g-tube insertion. Although it is a surgical procedure (minimally invasive), it was clearly the only answer at this time.  He was a champion, as usual, but he was in some major pain afterwards.  One of our favorite IU North NICU nurses, Rubi, came all the way to Riley to be with us and Gabriel on his surgery day....she is such a good friend to us and loves Gabriel - what a special lady!  I was so happy she could stay with Trent when I had to go to work mid-morning....moms aren't really meant to leave their kids at times like this.

Anyone with high maintanence kids, or kids at all, will tell you.....marriages take a back seat to the issues, and the problems, and the appointments, and the mid-night feedings....basically everything.  We are no different in that we struggle so much with Gabriel's care, we are both at our wits end....physically, emotionally, mentally.  Trent and I basically have nothing left, we are just making it through this obstacle....whoever said having kids was easy? Uh - someone who doesn't have any?

At this time, we are still pushing through...with prayer, perserverance and love.  No doubt he is the cutest little PITA ever!