G-tube Recovery and Heart Images

Our July 4th Emergency Department trip turned into a 5 day stay.  We were discharged on the 9th with a brand new G-tube, pump, IV, pole, feeding bags and a new plan! We are to offer a bottle of milk and formula to Keller every 3 hours-let him drink what he wants of it and then infuse the rest into his belly via the feeding pump.  Overnight he gets a continuous amount of milk and formula (roughly 11p-7a).  He has still been fussy, at times very fussy.  Friday we started a new formula, soy this time.  The first 18 hours seemed great and since then he's had some more fussiness, several spit ups and still a vomit a day.  I have learned the difference in spit up and vomit.  Spit up happens with a burp or a hiccup.  Vomit can hit a target 2 feet away.  Before he's going to vomit he gets restless and gets a funny look on his face and then the gagging starts.  You can feel his stomach trying to get rid of the milk.  Right now it seems to happen when his feeding is nearing it's end or if he has worked himself up.  To answer your question though.....Yes he is starting to gain! When we checked into Vidant he was 7lbs 13oz, on the 9th he was 8lbs, and on the 11th he was 8lbs 2 oz.  It is certainly not an ounce a day like is ideal but now I feel like he has a chance.  Its been 6 and a half weeks but he has almost gained 1 pound.

Heart echo.

After we got home on Wednesday we had to return to Greenville on Friday for a cardiology appointment. This was his first echo since leaving NICU and the first one Phillip and I have been present for since he was born.  Keller was very calm and fell asleep during this 40 minute echo and we got to see some really neat pictures of the complex insides of our little guy.  Just to recap his defects are Atrialventricular septal defect sometimes called  an AV canal (AVSD), double outlet right ventrical (DORV) , pulmonary stenosis, and interrupted inferior vena cava (iIVC).  We also found out that his body has compensated for his iIVC by creating a "collateral" vein that goes to the aorta.  Here are some pictures to help explain.

Here is a picture of AVSD compared to a normal heart

Here is an image of a heart with DORV

Here is an example of a collateral vein, this is not specifically where Keller's is but it's an image I found to help.  The blue vein labeled "azygos" is what I am referring to.

On top is a normal heart and below that our little guys special heart.  

They are still thinking he will need surgery between 3 and 6 months of life.  Now that he has a g-tube we have removed the obstacle of eating.  The indicator that he is ready for surgery will be that his heart will burn more calories than he can ingest and he will stop gaining weight. Cardiac wise he is doing what they expect right now and we have a month before we follow up with them.  

Tuesday we had his GI appointment, this was our first time there.  He still weighed the same as he did the Friday before.  I liked the doctor - the staff we were familiar with because it's in the same office as Norah's thyroid doctor.  Dr. Misra had a dietitian come speak with us and she helped me with an easier way to mix his milk.  He still is getting the same though 22 calorie milk, about 18 ounces a day.  This actually exceeds the amount of calories a typical baby his size needs the question is is it enough to meet his caloric needs.  We have a weekly weight check and his two month check up will be here before we know it.  

Thanks for checking on us!