Monday, April 27, 2009

April 27, 2009

Demetri has been doing well since his surgery last Tuesday. He has regained all of his weight and is up to 3 lbs 12 oz! He is actually starting to fit into his preemie clothes. And his little cheeks are also filling out.

He has been at his full feedings for a couple of days and today it was increased again to 32 ml for his weight gain. He still has the PICC line, but no IV fluids are running through it. He seems to be struggling a little with bottling all of his feedings now. His nurse had to put in an NG tube last Friday when he got up to 25 ml feedings. He did very well eating the smaller volumes, but seems to get tired and uncoordinated with the larger volumes. Now we are offering him a bottle with each feeding for 10-15 minutes. This way he gets to enjoy his bottle, but we are not pushing him too hard. The really good news is that he has not had any problems tolerating his feedings... no residuals and no vomiting!!! They have also started him on Prilosec for reflux.

The doctor is trying to find the cause of his feeding troubles. Today a plastic surgeon came to evaluate his "small" lower jaw. He thought he looked fine and his x-rays of his jaw looked normal. Next, he should be having a swallow study tomorrow or Wednesday. This means they use an x-ray machine and watch him drink from a bottle (with contrast in the milk) to see how he swallows the liquid and if he is aspirating any of it into his lungs.

Last Thursday they stopped the Caffeine. So far he has not had any apnea events. The Caffeine stays in the body for about 5-7 days after stopping, so we should start to see if he is having any events off the medicine soon. Hopefully he will not have any, which means we can take him home off a monitor this time.

Here he is sleeping in his new crib at Children's Mercy with his bear friend.

I talked to the discharge nurse today, she cooordinates all of his appointments after discharge and gets him ready to go. It is nice to start thinking about him coming home soon.

In all, Demetri seems to progressing well during this hospital stay. We seem to have little ups and downs every day, but mostly ups. He has had some good nurses taking care of him (and great ones at Overland Park) which helps us leave him at night. Eleni is wondering when he is coming home and when she can go visit him (the NICU is closed to siblings during RSV season). She goes into his room often and talks about him. We are all looking forward to having him here at home.

Wednesday, April 22, 2009

April 22, 2009

Here he is after surgery waiting to get off of the ventilator and get some dinner.

Demetri was in surgery for about one and a half hours. The surgeon came out and informed us that everything went well and that he could eat in about 2 hours and that they would take him back to the NICU to recover. They were able to do the surgery laproscopically instead of having to make a larger incision. The surgery nurse practitioner thought that if the procedure could be done laproscopically that he would be the smallest baby it has been performed on at Children's Mercy Hospital. It took about 30 minutes to get him settled, but when we got back to see him he was very upset. He looked like he was in pain and was still on a ventilator. Even more upsetting for us was that the only pain medicine that he had available to him was Tylenol, but mom soon remedied that with the help of the neonatologist.

He had a good night, but it did take until about midnight to get the doctors to take him off of the ventilator. He was doing great with his breathing, but they were dragging their feet due to the fear of having to reintubate him because it took anesthesia a long time and a special tool to get it done in the operating room. He slept like a baby the rest of the night, swaddled tightly. His morning labs were normal, except he is a little anemic and they are contemplating giving a blood transfusion. They will decide in the morning.

Today he was quite a little champ. He finally got his chance to eat at noon (just a little more than two hours after his surgery) and did great. He has taken a 10 ml bottle every 3 hours since then and has not had any reflux or vomiting (surgeon warned us that it is normal for him to vomit for 2 to 3 days). He seemed at ease and looks the best that he has since being admitted this time.
Here he is sleeping with daddy after taking his bottle.

Tuesday, April 21, 2009

April 21, 2009

We are currently waiting for Demetri to get out of surgery. Yesterday they found pyloric stenosis on his abdominal ultrasound. This means that the muscle around the bottom of the stomach has become too big and is not allowing his stomach to empty properly.

He had a good night and morning. Because he is so hungry (they turned off his feedings at 2 am) he has found comfort in his pacifier. He was wide awake for most of the morning flirting with all of the nurses that came by to see him. He gained another half ounce last night and is weighing over 3 lbs 8 oz.

Demetri also got another echo this morning while waiting to go to surgery. This was because the doctor thought his murmur was different. We are still waiting to hear about that.

Please keep the little guy in your prayers.

Sunday, April 19, 2009

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.

Saturday, April 18, 2009

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.

Saturday, April 11, 2009

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.

Friday, April 10, 2009

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.

Wednesday, April 8, 2009

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.

Tuesday, April 7, 2009

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.

Monday, April 6, 2009

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.

Sunday, April 5, 2009

April 5, 2009

Demetri has gained another 14 grams and now weighs 3 lbs. 5 oz. He had a good night last night and finished 3 of his 4 bottles. But today he has only taken 1 full bottle. Last night, his nurse did his hearing screen, but he did not pass. We are hoping this is due to nurse error, the fact that he still has a feeding tube in, or the amount of hair that he has not allowing good contact with the patches that are used. All of these are actual reasons for "failing" the test, they will try it one more time before he comes home. If he still does not pass, we will be referred to an audiologist, who has better equipment.

The majority of what is happening right now is the scurrying around to get everything ready for him to come home. In addition to the house stuff, we (meaning Chris) have to go through several different "classes" to get familiar with things like the monitor that Demetri will come home on and the NG tube things such as putting it in and making sure that it is in the right place.

Saturday, April 4, 2009

April 4, 2009

Let's get the weight gain out of the way. Demetri gained 26 grams and now weighs 3 lbs 4 oz....and now to the good stuff! As of today, the plan is to have an MRI of the head (asked for by the geneticist) and a follow-up renal ultrasound on Monday. The nurses are to do a hearing screen when a quite moment presents itself. We need to find a new car seat for Demetri that goes down to 4 lb babies and then if he passes his car seat study (a test to see if he maintains his heart rate and oxygen saturations while sitting in the car seat--if he does not pass we then will have to get him a car bed which is similar to a regular car seat except that the baby lies down in it) and all else goes well we get to bring him home at the end of next week. This means that he cannot have any more apnea events, because if he does have one we have to restart the count down of 5 days.
Yeahhhhh!!!

But wait....we have alot to do before he gets home. We have to finish painting and moving the office out of his bedroom and into the basement (not that he has to have a bedroom right away, we just have to have time to get the fumes out before he gets there). Then there are the things that we really do need to get for him to come home, like the car seat. We are cautiously excited but excited none the less.

Friday, April 3, 2009

April 3, 2009

That is not Rudolph that he has stashed in his left sleeper foot, it is his pulse-oximeter glowing.

Over the past 2 days Demetri has gained 35 grams and now weighs 1449 grams which is equal to 3 lbs. 3 oz. Yesterday he slept most of the day, probably still recovering from taking 6 of 8 bottles the day before. He has done better today, taking 3 full bottles so far. Now we understand why they say learning to eat is the most frustrating part of the NICU stay. He was eating so well a few days ago and now seems to be back at the beginning of the process, kind of "learning" to eat again.

The chromosome study is not complete yet, so we have to wait until at least Monday to hear anything. In the end it is not all that important because it will not change anything that we are doing and our love for him.

Demetri did have another apnea yesterday, but this was still before the increase in his dose of Caffeine. So we will have to see if this increase will stop the apneic events.

Wednesday, April 1, 2009

April 1, 2009

Our big guy gained another 24 grams today. He did so well taking 6 of his 8 bottles yesterday that he was exhausted today. He has taken 3 full and 2 part bottles so far today. He did have an "event" today and it was either reflux or apnea that caused his oxygen saturations to go low. So the nurse practitioner increased his Caffeine dose (in order to match his growth). She thinks he will probably go home on the Caffeine and an apnea monitor so there is no point in trying to wean him off of it right now.