Upper GI Endoscopy & pH Monitor

Anthony's agenda for tomorrow (Tuesday) morning: go to Methodist for an upper GI endoscopy or EGD (Esophagogastroduodenoscopy) and pH monitor.  After our last appointment with the GI we decided to go ahead with these procedures to make sure there's not something else going on with Anthony's eating.  During the EGD the doctor will take a look at Anthony's esophagus, stomach, and first part of the small bowel and they'll also do a biopsy.  They'll also place a pH probe at this point (through his nose and down his throat like a feeding tube) and that will stay in for 24 hours to detect any reflux he might have.  We'll get to bring him home an hour or so after the procedure (yay for no hospital stay!) and then we'll take him back to the doctor Wednesday morning so they can take out the pH probe.  Please pray that the procedure would go well, that Anthony wouldn't experience any discomfort, and that we would get some answers to help Anthony's eating.

3 Professionals - 3 Different Opinions

We've seen 3 different people now about Anthony's eating (or lack there of) and each had a different opinion:

GI Doctor: thinks Anthony has an oral aversion due to all the negative experiences preemies have in/around their mouths.  He doesn't think reflux is a main factor because he's not spitting up much anymore.

Speech Therapist:  thinks that when Anthony hit the 4 months adjusted age "it's-my-choice-to-eat-now-and-not-just-a-reflex-to-suck" stage that he just decided not to eat much because eating is hard work.  She gave us a couple of things to try, but things had already been a little better by this point because of some things that we had already been trying. He's been eating more since we switched back to a level 1 nipple, started pacing him again like the good 'ole NICU days, limiting feedings to half an hour and sticking to feeding him every four hours.  He likes to trick us and make us think he's hungry sooner than that when he's actually not!  Oh, and we've gone back to feeding him in the middle of the night in order to get another feeding in, which has actually helped quite a bit.  He's been eating an okay amount most days, but will only eat when he's drowsy (and maybe isn't as aware of the pain?).

Occupational Therapist who works on feedings from the AEA: thinks the root of the problem is indeed reflux.  He exhibits all the signs of reflux, except the spitting up, which could mean he has silent reflux.

So what are we to do with all these different opinions?  Trust our instincts I suppose, which are telling us reflux. That's what my gut feeling has been all along.  He really does exhibit all the signs and I think he doesn't spit up much for a few reasons: 1) the reflux meds have helped some, 2) we hold him upright for about 20 minutes after we feed him, and 3) we don't lay him flat for at least a couple hours after he's eaten.  So, rather than have everyone keep guessing what is wrong, I think we're going to ask about doing the pH monitor when we go back to the GI for a follow-up appointment this Wednesday.  If reflux actually is the problem, that would tell us and we could try different meds.  I hate to put him through that (it's a lot like a feeding tube that goes through his nose and down to his stomach and will measure how often he has reflux) but will be worth it if it helps us get to the bottom of this.

And what would a post be without some pictures of these two?!

Having some sweet dreams!

 

 

Anthony and Aryanna have started "talking."  We caught Aryanna on camera the other night, but Anthony gets camera shy so we haven't caught him yet.

 

New Plan

Well, after many phone calls yesterday we now have a new plan for Anthony.
Here's a recap of what happened up to this point:  We went to the GI the day after Christmas and he recommended speech therapy.  We waited a few days and hadn't heard anything from speech so I called and they informed me there was a 3 month waiting list.  Anthony started eating even less so we went back to the GI this Thursday and he recommended that we check him into the hospital on Monday so he could see a speech therapist and get an EGD and pH monitor on Tuesday.
Ok, fast forward to yesterday.  I get a call from outpatient speech therapy that they want to schedule him for an evaluation on Tuesday.  (I was super confused at this point - apparently this was not the same person that had previously told me there was a 3 month waiting list).  I explained to her that he was going to be checked in to the hospital on Monday and Tuesday and asked if it would be her office that did an inpatient evaluation.  She said it was and that she wasn't aware that was the plan.  So she called the GI's office and talked to the inpatient coordinator who said that we could skip admitting him and just take him to the speech evaluation on Tuesday.  Since she didn't talk to the doctor and it was obvious that not everyone was communicating clearly I called the doctor's office myself to make sure it was ok to put off the other tests for now.  The nurse called me back after talking to the doctor and said we can just go to the speech appointment on Tuesday and if they see something that they think would require more tests or if things get worse we can admit him on Thursday or the following Tuesday for the tests.  We're definitely grateful that Anthony won't have to go through the trauma of those tests.  Pray that we would get some good information and strategies to try from speech.

Aaaannnnddd, Anthony just finished an entire bottle at noon today!  Don't even know the last time he's done that!  Praise God!

The Preemie Journey Continues in 2013

2013 has brought with it more preemie struggles.  Christmas break was a mix of emotions.  We had lots of sweet moments as a family and thanks to 2 snow days we got to spend 2 weeks together.  We had so much fun watching the twins open Christmas presents for the first time and enjoyed lots of smiles and giggles.  But Christmas break was also very stressful and frustrating.  Anthony had slowly been eating less and less.  About a week before Christmas we called the pediatrician and she referred us to a GI doctor.  A couple days after that our visiting nurse came and we found out that he had lost weight - not good.  The main factor in his lungs healing and getting stronger is weight gain.  Our appointment with the GI wasn't for a few more days.  Every feeding was becoming a battle.  One of us would try to feed him while the other would sing to him or hold a toy with flashing lights and music to distract him.  The poor boy wants to eat, but when it comes down to it he arches his back, pushes the bottle away, cries or turns his head away.  We tried different schedules, sippy cups, and feeding him with a syringe.  The majority of our days have revolved around trying to get him to eat.

We took Anthony to the GI doctor on the 26th and the good news is that he's still on the growth chart.  The doctor isn't sure that the reflux is the biggest problem.  He thinks that he has just developed an oral aversion because of all the negative experiences preemies have with their mouth and face (ventilator, feeding tube, suction, tender grips, etc).  Thankfully, he doesn't have a total oral aversion and still sucks his hands, toys, etc but he definitely is not happy about the bottle.  The GI referred us to speech therapy (they help with feeding strategies, swallowing, etc) and had us increase his formula from 24 calorie to 27 calorie.  He wanted us to try and get him to take 25-30 oz a day. We waited a couple of days to hear from speech therapy and after hearing nothing I called to find out when they could get us in.  There is a THREE MONTH waiting list!  A lot of good that does us!  And, in the mean time Anthony hadn't eaten any more than 20 oz in a day.  Then, a couple of days this week he only ate 10 - 12 oz, even with going back to feeding him in the middle of the night (he usually does the best at this feeding because he's half asleep).  So we went back to the GI today and the verdict is that we need to do some tests and find out what's going on.  We'll take Anthony to the hospital first thing in the morning on Monday and they'll admit him and we'll actually get to see a speech therapist that way.  The speech therapist will observe him eating and decide if he needs a swallow study and maybe recommend some techniques that could help him eat better.  Then on Tuesday they'll put him under anesthesia and do an EGD (Esophagogastroduodenoscopy - I see why they abbreviate that!).  They'll look at his esophagus, stomach and the first part of the small bowel.  They'll also take some biopsies to see if he could have an allergy that's causing pain.  They'll also place a tube in his esophagus for a 24 hour pH monitor to detect reflux.  Hopefully, after all that we'll have some answers and can find a solution so eating isn't such a horrible experience for Anthony.

To say that all of this is stressful would be a vast understatement.  It's awful to see your child hungry and yet not want to eat.  I've been clinging to this verse from my devotional the other day:  So let us come boldly to the throne of our gracious God.  There we will receive his mercy, and we will find grace to help us when we need it most.  - Hebrews 4:16.  I've had to remind myself several times to just trust God to take care of my little boy - so hard to do.

Please pray for healing for Anthony and that we would be able to find something to help him.

On a positive note here a few pictures from Christmas - more to come soon!