May 2, 2009

Hello everyone, sorry for the delay in updates. Demetri has had good weight gain this week and is up to 1845 grams (4 lbs 1 oz). He is filling out his onsies well and looking good in most of his sleepers. We are looking for little fat rolls, but still have not found them. He grew 1/4 inch this week and his head circumference grew 1/2 inch.

On Tuesday, Demetri did a swallow study to evaluate his bottling and the choking incidences that he sometimes has. We took him downstairs to the Radiology department and they strapped him into a "car seat" to feed him Barium under and x-ray machine to watch the mechanics of his swallowing. They tried 3 different consistencies of Barium. On the nector consistency (a little thicker than milk) he aspirated into his lungs... not good. On the other 2 consistencies, he had penetration of barium into the trachea and then it came out and went down the esophagus... not good either. This means that as of now he cannot eat safely from a bottle and is getting all of his feedings by NG tube. And Demetri is sad because he loves to eat... well sometimes he is just angry because he misses the bottle. We have been giving him his pacifier with each feeding so that he still gets the satisfied feeling with the act of sucking and this seems to "pacify" him most of the time. They will decide on an outpatient basis when feeding can resume and he will have to have a repeat swallow study to re-evaluate.

Demetri's bear helps to hold the pacifier for him and snuggles with him when we can't be there.

On Wednesday, the doctor mentioned the option of having a gastrostomy tube (a tube inserted into the stomach through the abdominal wall) placed for his feedings. This would eliminate the NG tube from his nose and still allow him to get optimal nutrition for growth. We having been waiting the rest of the week to have a surgical consult from the surgeon that did his last surgery. Yesterday we found out that they want him to grow to at least 2000-2500 grams before doing the procedure. They are also considering another procedure at the same time called a fundoplication. This would help to stop the reflux that Demetri has always had. It has gotten worse over time and causes his heart rate and oxygen saturation to drop about once a day. With these "spells" Demetri cannot come home. So it looks like we will be at Children's Mercy until he grows big enough for the surgery... not the news we wanted to hear.

On the bright side, Demetri is having more awake time than before. He is interested in watching his mobile (we brought one in for his crib) and his lady bug dance. And he falls asleep to his musical lamb when we turn on the whale sounds. He does not like his range of motion exercises or the blood pressure cuff. He cries immediately when he sees the cuff coming and the nurses have to put it on him and take it when he has gone back to sleep! And then there is his hair, all of the nurses comment on how thick it is and it is just getting lighter every day... it looks highlighted. And the nurses are doing a great job of holding him and snuggling with him for us when we are with Eleni at home.

Despite not getting the news we would have liked to hear, we are excited about the progress that he is making and his growth. We look forward to having a speech therapist re-evaluate him for feeding so hopefully we can give him small bottles with each feeding. Thank you to everyone for following him and sending us your thoughts, prayers, and encouragements. We cannot wait to bring him home, it just looks like it will be a little longer than we expected.