April 18, 2009

We are sorry it has been so long, but a lot has been happening.

We had a great time with Demetri home, but he is now back in the hospital at Children's Mercy in the NICU. It went well having him home, we did not get much sleep, but we were all together. He even got to have his first bath at home. On Sunday, we gave up on the new bottles and daddy went back to the NICU to get the nipples he did well with. He improved his feeding right away, taking the next 4 full bottles. On Monday, he started not being as interested in eating and was not stooling like normal. At about 3pm we found that he had a large left inguinal hernia that we could not reduce (we did not want to push as hard as we needed to to put the bowel back in his abdomen). So we took him back to the NICU to see the Neonatologist for assistance. Demetri had stooled and the hernia reduced easily. So we took him back home and were watching for the hernia to reappear.

The hernia stayed in for much of the night, but was out again on Tuesday morning. We could not reduce it by ourselves, so we called in an expert and Pappou came over to help. Demetri went for his first pediatrician appointment later that day and his doctor also commented at how difficult it was to reduce. Demetri weighed 3 lbs 10 oz (gaining 3 ounces in the 4 days home)! We decided to started him on some reflux medication because his reflux was getting worse and he was not as interested in the bottle. For the rest of that day, Demetri did not want to eat and we had to put his feeding through his NG tube, this was very different for him. That night, we decided to check his residual (the food left in his stomach after eating) and he still had 30 ml left. This is not good when he only eats 33ml. So we called the pediatrician on call and he wanted Demetri to go to the hospital for evaluation. After calling the Neonatologist at Overland Park to have him admitted, he was concerned it was a "bug" and to watch his feeding tolerance through the night and consider taking him to the childrens hospital.

After 9 hours, Demetri still had a large residual, so at 3:30 am we went to the emergency room at Children's Mercy. They took x-rays (normal), sent labs, started an IV, and promptly admitted him directly to the NICU. They stopped his feedings and drew lots of blood for more labs and cultures to see if he had an infection. He looked the worst we had ever seen him. I think was the first time he had ever looked "sick" to us. It was difficult to leave him that night, but the staff insisted we go home to get some sleep. We were a little emotional after only getting about an hour of sleep the night before. I'm not sure how we left, but it was good to get home to Eleni.

Thursday, he looked better but slept most of the day. They were having a dificult time keeping an IV in him and he had a scalp IV (not what a mom wants to see, especially with all that hair). His belly looked and sounded good and he was stooling better, so they let us try to feed him. He took the bottle well, but had a few episodes of nasal reflux, so they stopped the feedings again.
On Friday, Demetri was wide awake when we got there. His mouth was wide open when we picked him up and he was looking for food. He even cried because he was hungry and he enjoyed his pacifier. They let us feed him again and he sucked the bottle down in about 2 minutes! He did not have any reflux with this bottle. Because he was having trouble keeping IVs and his veins are not that apparent, they put in a PICC line (a more long term IV that will not come out as easily). They also stopped his antibiotics. He took bottles every 3 hours the rest of day and night. He had some reflux and then 3 bradycardia events (a drop in his heart rate) after the 3am bottle and they decided to stop his feedings. This was probably caused by reflux, but we will see.

Demetri had lost weight each day so far in the NICU (getting down to 3 lbs 6 oz), but gained weight today and is up to 3 lbs 8.1 oz. All of his labs have come back normal and the cultures are not growing anything (meaning no infections) yet. We are hoping for a good day today and restarting feedings.