April 19, 2009

Demetri is doing better. He gained 15 grams today, about half an ounce. He was wide awake when we walked in this morning and "played" with us for about 2 hours. He is now getting slow continuous feedings through his NG tube to see if he can better tolerate the feedings. So far, no more reflux, but he occasionally has residuals (food left in his stomach) when they check. They have been feeding him despite these residuals and he seems to be tolerating it ok.

In addition to these small feedings, Demetri has a PICC line in his left arm so that he can get more nutrition. This line also allows for blood draws so that the nurses do not have to continually poke his heals and squeeze the blood out of him.

All of his blood cultures have essentially come back negative, meaning he does not have an infection. One of the viral cultures showed that he had been exposed to parainfluenza virus. So we are still not really sure what has caused him to be sick. Hopefully tomorrow they will do an abdominal ultrasound as well as an upper GI study. These will look at the top and bottom of the stomach to see if there are any problems.

An ENT doctor came by today to look at his palate and upper airway. He did not find any signs of a cleft palate (which could be a cause of the reflux), but found evidence of significant reflux. He suggested starting a more potent reflux medication than Zantac, so Demetri is now getting Prilosec. He also suggested doing a swallow study to watch with an x-ray machine as he swallows from a bottle to see if there are any mechanical problems with his swallowing.

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.

April 11, 2009

Well he made it... Demetri is home!!! We have had a whirl wind few days. Demetri lost weight his last night in the NICU, so we were wondering if he would actually get to come home. But Dr. Lancaster made it official when he walked in his room Friday morning smiling and asking what time we were leaving. His Pediatrician also stopped by to catch up on him and say she would see him on Tuesday. (We have a laundry list of other appointments we have to make for him.) We waited for the photo lady to come to the room to take his hospital pictures, but she was not even at the hospital, or so they told our nurse at 2 pm. So we tried to simulate her machine and take our own... we didn't do so well. (So we can't wait for Misty to come to our house and take pictures.) To take the pictures, we took out his NG tube and then daddy got to practice putting it in again. He got it on the first try!Demetri left the NICU weighing 3 lbs 7 oz and measuring 16 inches in length. He arrived home at about 4:30pm after picking up big sister Eleni at school.
Our first night at home was wonderful, but we quickly found we definitely need a better organization system (and we thought we were organized people). We have changed his feeding schedule a little bit to work better with Eleni's schedule. We also had to gather and seperate all of our feeding supplies and create a feeding pole to hang his NG feedings from when he does not finish his bottles.

It has been almost 2 days using his new bottles and he is slowly learning. The most he has eaten is 23 ml of his total 32 ml feeding. The speech therapist warned us it takes 3 days to get used to new nipples, so we are trying to be patient. We are looking forward to taking out the NG tube for good. It is is just really nice to see his face without it!
Eleni is a great big sister. She was very excited to see him in the car when we picked her up. She could not see him in his car seat and wanted his seat turned toward her for the ride home. She gives him sweet kisses on his head and wants him to look at her. She is also good at "shhhhing" everyone when he is sleeping.We are thankful to everyone for supporting us through this journey. It has been a very long and emotional 23 weeks for us, and your love and kindness has helped to get us through. We are so thankful that we have a beautiful boy to bring home. It is amazing seeing Demetri and Eleni at home together (we were not sure that would ever happen).

We are glad you have been able to follow Demetri's progress on this blog and please keep checking for updates as he grows. We love all of you.

April 9, 2009

Demetri is getting ready to go home. There seems to be a constant buzz in his room, making sure that everything gets done before discharge. He gained another 19 grams today and weighs over 3 lbs 7 oz. We cannot believe how big he is getting, yet how small he is. It must be because he is improving at his bottling, he took another 3 through the night and 2 today.

We started using a new bottle, Vent Aire, that was suggested by the speech therapist for going home on. She says it takes at least 3 days for a baby to get used to using a different nipple. So we are slowly introducing this new bottle to him and beng patient with him as he adapts to it.

Demetri did not pass his second hearing screen, for a number of reasons (his small size, the amount of hair on his head, how alert he is during the test), so we will have to see an Audiologist to do a more detailed test.

He got another shot today. They decided to give him Synagis (the "vaccine" for RSV) because of his small size and limited ability to fight viruses, especially with going home. We are very glad he got this added protection during the end of RSV season.

We are busily getting the house ready for his arrival. Eleni is very excited to see his car seat next to her in the car. The basement is almost finished, we are working on the flooring and getting the office set up and Eleni toys taken downstairs. Demetri's furniture will be delivered on Monday, by then we should have everything ready for him.

April 8, 2009

Our big little guy gained another 23 grams and now weighs over 3 lbs 6 oz. The car seat we bought is not going to go to waste. Demetri passed his car seat study. He enjoyed it so much that his nurse let him sleep in it until his next feeding, an hour and half later. He also had an eye exam today and both eyes are "mature", meaning that they are normal. He did really well with his bottles last night, taking 3 full ones. But he did kind of tucker out today and only took 2 bottles today.

The speech therapist came in this evening to re-evaluate him. After a 2 hour visit and almost a full bottle we have a new best friend. Seriously though, she said that the problems that he is having with his feedings are due to his small mouth. She feels that his motor skills are great and that as he grows he will gain the strength and size that he needs to bottle and breast feed. She suggest a particular bottle for us to try for when he comes home. She also had a wealth of other information that was very helpful.

We are still on track for coming home on Friday. We are just trying to get the house rearranged and get the supplies that we will need. Today we had our monitor training, which showed us how to use the apnea monitor. His pediatrician also came by to see him today, as she will be taking over his care.

April 7, 2009

Well Demetri has gained another 22 grams today. Unfortunately his bottle feeding continues to be a challenge for him. The speech therapist will be coming to see him before his discharge to re-evaluate him and hopefully give us some great insight that will make the difference in his bottle feeding. The MRI that he had yesterday was "unremarkable" so that essentially means that the radiologist thinks it is normal. We took his new car seat in today so hopefully he will have his car seat study tonight to see if he is able to ride in the car seat or if he will have to have the car bed. We got a long list of doctors with whom we have to make appointments for Demetri to see once he is discharged. We are just eagerly awaiting to see if he for sure gets to come home Friday.

April 6, 2009

Today was a GREAT day and a busy day for Demetri (and us). First of all his weight gain was only 7 grams, but he broke 1500 grams (he is 1501 grams). He took part of all of his bottles through the night last night and finished 2 through the day. While daddy was feeding him (his first chance in 6 days) we tried a normal sized nipple and Demetri seemed to do well with it. There is one correction that we need to make. Last week we had said that he was measuring 18 inches, but we found out today that he is actually 15 7/8 inches long. He head circumference has increased to 12 inches.

Daddy learned how to put Demetri's NG feeding tube in today and how to check to make sure that it is in the right place. We also were able to get a picture of Demetri without anything on his face in between tubes.

He got his hepatitis B vaccine today as well as an ultrasound of his kidneys and an MRI of his head. The MRI did not happen until after 3 pm so we won't know anything about it until tomorrow. The ultrasound came back normal, meaning that the slight hydronephrosis has resolved.

Demetri now has a shiny new car seat ready for him to test drive. If he passes he will get to come home in it, but if he does not we will have to get him the car bed to come home in.

As we were leaving the hospital tonight, in order to go buy him a car seat and other necessities, we talked to his nurse practitioner Karen. After first scaring us to death by saying that the doctor would speak to us about the results of the chromosome test (with a very solemn face), she told us that the results are normal!!! What a relief, but we do understand that there is still a chance of there being abnormalities.

In light of this wonderful news we want to again thank all of you for your continued thoughts and prayers through this challenging time.