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!