Pics

Group hug!

Eleni and her favorite princess Belle

Demetri meeting Piglet at breakfast.

Eleni dancing with princess Stephanie at her wedding.

Demetri sitting up in his little chair during physical therapy.

Eleni holding Demetri while he was at Children's Mercy.

Getting ready for the baptism.


The official dip in the baptismal bowl.


Demetri's Nouna (godmother) Jo, Nouna (godfather) Chris, and godsister Madalyn.

It's Been a Long Time... I Know

I know that it has been a long time since our last post. I will try to catch you up as quickly as possible.

In July: Demetri took his first trip back to the hospital via ambulance. He refluxed in the car with Christopher and stopped breathing. It was a terrible, traumatic event. But after less than 24 hours, Demetri was as good as new and we got to take him home. Eleni remembers getting to make pizza with the firemen in her kitchen. She now likes to alert us the Demetri is "vomiting" and send us running to find him sitting in his seat sleeping!

We knew it was a possibility and it was confirmed by genetic testing that Demetri has Cornelia de Lange syndrome. It is characterized by small stature, GI problems, heart problems, develeopment delays, etc. It is caused by a random mutation in his DNA that stops one of his proteins from being formed correctly, so it cannot function properly.

At the end of July we took a fast trip (and I mean fast... we planned it and left within 48 hours) to Disney World. We left our worries in Kansas City and had a great time. I don't think that Demetri even noticed anything different and Eleni loved it! She loves everything princess now. It was nice to be away from reality and not have to answer the phone for 5 days. Except for that one call from our pediatrician, and she was only upset that we did not bring her along as our private physician for the trip... she's great! Then Christopher had to start school as soon as we got back.

In August: We were finally approved for a nurse to come to the house to take care of Demetri while we at work/school. It is a difficult adjustment to leave someone at our house to take care of Demetri, but is working out well. By the end of the month, with the encouragement of the administration at the medical school, Christopher decided to take a leave of absence for a year. It was a difficult decision for him to make, but we now know it was the right one. He will be spending his time off trying to study old material to stay current for boards and shadowing doctors soon (he missed the experience over the summer when Demetri was in the hospital). Demetri had so many doctor's appointments I don't know where to begin (I'm greatful Christopher could start helping me get to them). He started going to a physical therapist for nerve tracking (sounds kind of voodoo I know, but works) to help release his tight nerves which then helps to loosen his muscles. He loved it. He would just lay there and relax.

In September: Demetri is still having trouble with reflux. We have seen the surgeon several times and he is wanting to redo the fundoplication that he had in May (surgery to pull the stomach up around the esophagus and tighten it to stop the reflux). We are about to give in since he has his hernia surgery already scheduled for October, they can do them at the same time. He had another appointment with the Cardiologist. His aortic stenosis (narrowing of one of the valves in his heart so it will not open properly -- thanks to Christopher) is mild and unchanged since June, so we don't have to go back for 6 months. The doctor cannot rule out a coarctation of his aorta (a narrowing of the main artery that supplies the body with blood) because they cannot see it very well but doesn't think it is significant... we'll check in 6 months. Demetri had an MRI of his sacrum to look at the end of his spinal cord. They were looking for a tethered cord (meaning the spinal cord is longer than normal, thickened and can attached to the spinal column. This causes problems as you grow because the spinal cord gets stretched). While we were waiting for the results, Demetri had some more bad reflux and probably aspirated into his lungs, this confirmed our decision to proceed with the fundoplication surgery. We happened to be at the pediatrician's office later that day and when they checked his oxygen saturations they were low. So we spent 4 days in the hospital trying to convince the Hospitalists that we could care for him at home on oxygen. Thanks to a call from our pediatrician we got to go home! But while we were there he had a VCUG (test to see if any urine goes back up toward the kidneys when he urinates) and the MRI results showed a tethered cord. The Neurologists did not agree when they looked at the test and as long as another urinary test goes ok! So we took him home and he spent the next month on oxygen 24 hours a day.

Eleni officially started preschool. She doesn't like the thought of going, but has a great time once she gets there. She also turned 3 years old in a princess celebration complete with 2 costume changes!! She had a great time and it was great to see all of our family and friends together at our house. She started swimming lessons and Coach Ann quickly sent her to the deep water class. I think she is a natural.

In October: Demetri had his surgery to tighen the fundoplication, repair his inguinal hernias, and complete his circumcision. Poor guy, he had the works that day. To make it even more exciting, he spiked a fever and had a febrile seizure while I was holding him. That called for another Neurology consult and EEG, which was normal. Poor little guy, he is such a trooper. Eleni demanded a visit to the hospital and held him for about 20 minutes! She has since then told everyone that meets Demetri that he had surgery. It's kind of cute. So far his reflux is much improved (knock on wood)!! He seems to be much more comfortable and relaxed. He has never complained and been a relatively happy baby, but he is just so much better now. We have noticed that the only times he does reflux is when he is straining to pass gas or stool. So we went to another GI doctor that specializes in gastric emptying (I forgot to mention that we insisted on a gastric emptying study while he was in the hospital to see if it was delayed and compounding the reflux problems... and it was delayed). He put Demetri on a medication to relax the muscles of his GI tract to help with stomach filling when he eats and his bowels so he can stool easier. It seems to have helped.

He is continuing with his physical therapy at home and has made a lot of progress. He has a great therapist and Demetri loves her. He just smiles at her as she is working with him. He is more flexible now, has much better head control, and is reaching for toys. He is tracking objects well while holding his head up (that was the goal for the month!).

Demetri also had a vision screening. He is near sighted, but doesn't need glasses now. We were sent to the Vision Center for further evaluation. They played with him to see what kind of toys he was interested in and how best to stimulate him. They recommended having a vision teacher and one of their occupational therapists come to the house weekly to work with him. He also had a follow up hearing screen. He does have some hearing loss in both ears and they are probably going to recommend hearing aids after they do further screenings.

Demetri dressed up as a giraffe for his first Halloween, a little ironic for our little 11 pounder I guess. But he made an awfully cute giraffe. He escorted Princess Belle (aka princess Eleni) and princess Cinderella (our neighbor Peyton) trick or treating before falling asleep at the neighbor's house while Eleni and Peyton ate their candy.

In November: Demetri was baptized last weekend. It was a wonderful ceremony. He did a great job, not a tear was shed. I think he liked the "bath". Demetri's godparents, Christopher and Jo, are wonderful people and very loving with Demetri. He falls asleep every week during church with Jo holding him. Now we are finally able to cut the crazy hair. He looks even more like a miniature Christopher with his short spiked hair.

Demetri now weighs over 11 pounds and is about 23 inches long. He seems to be growing so fast. We have reduced his feedings to 24 calorie breast milk and are going up on the volume he eats. We will see how well he has grown on it in another week. He seems to be tolerating the larger volumes and his reflux is greatly improved. He still sleeps with his oxygen on at night and his apnea monitor. Every once in a while it alarms and it's a race to see if I get to his bed first or Christopher.

His new goal for PT is to sit on his own and to roll over. OT has started coming and working on oral motor things again. Hopefully we can get him interested in eating again. There is also a clinical trial going on in my unit for oral stimulation and I think we are going to start sneaking him in to try it. We have a wonderful nurse, Stephany, that has been taking excellent care of Demetri since September. She is fitting into our family well, even Zoe is starting to warm up to her.

Socially, Demetri is becoming more interactive. He likes to hold fingers and has the sweetest smile that lights up his whole face. He loves visiting with the neighbors. He has befriended "Mr. Gary" and they love just looking at each other and talking, then Demetri falls fast asleep while he holds him. It's too bad the weather is getting colder and we won't see them as much this winter.

This is it in a nut shell... sort of. I will post pics soon.

June 25, 2009

Happy Father's Day!

Hello everyone, sorry it has been so long since our last update. We feel so blessed to finally all be home together. We have been enjoying the past 3 weeks with Demetri at home. He has kept us pretty busy with doctors appointments, but we have managed to go to church and squeeze in the pool to watch Eleni swim and "dive". He is up to weighing over 6 lbs now and feels so big when you hold him! His hair is amazing and everyone that sees him comments on how much he has and how soft it is. It is getting long and refuses to lay down.

We have gotten mostly good news from his appointments. The Cardiologist confirmed that he has a bicuspid aortic valve (he has 2 flaps to the heart valve instead of 3) just like his daddy. He does have some mild stenosis (a narrowing of the hole and valve compared to normal) and they are just going to look at it again in 3 months to see if it gets any worse.

He has seen the Occupational Therapist 3 times now and we are working on finger feeding. This means that I put thickened breast milk on my finger and he sucks it off. He does good with this and swallows well. We tried putting the thickened milk in a bottle and giving it to him, which he loved, but he got a little excited and sucked too hard and choked. We will be having an OT come to the house starting in July to work more with his feedings so we can hopefully use the g-tube less.

He has started to have some reflux again, despite his surgery, and we have put him back on some medication to reduce the acidity of the reflux so it is not so uncomfortable. We will just be watching it and see the surgeon again in about 2 weeks.

playing together

He is developing quite a personality. He enjoys laying under the play gym and looking at the lights and listening to the music. He loves to look at Eleni, and she loves holding him all by herself. She has become quite the protective big sister. She is very leery of people coming to see him and definitely does not want anyone touching or holding him.

"I can hold him by myself!"

We are settling into a nice routine. Christopher took his last final last week and then a cumulative exam today and did well on both. He is now officially a second year medical student. I have gone back to work part time and am trying to get reacclimated to being an NNP. It is coming back to me faster than I thought it would. Christopher is experiencing being a "stay at home dad" while I am working... thank goodness for Pou coming over to help out :).

June 3, 2009

Sorry this is belated but... Demetri is home!!! We found out on Monday, much to our surprise, that Demetri may be discharged on Tuesday. We kept our fingers crossed all night and the next morning, his doctor said the word.


But lets back up a bit. Sunday Eleni was able to visit him in the NICU, they lifted the ban on siblings. She was excited all morning waiting to go see him. She informed us that Demetri was hers!!! She wanted to hold him by herself. She was a trooper, she lasted for almost 3 hours. This was the best way we could have asked to spend our anniversary, all of us together for the first time in a long time.


Demetri weighed 5 lbs 1.8 oz and was 18 inches long at discharge. He fits in his car seat a little better this time around. He has been a dream since coming home. I'm not sure he has even cried. He slept all night, that is more than we can say for ourselves. We are trying to get used to his schedule and better organized in handling his feedings and pump. He is getting 1 hour bolus feedings 4 times through the day and we are trying to compress those down further to 30-45 minutes. He gets continuous feedings at night and is on the apnea monitor only during this time.

We just want you all to know how much we appreciate your love and support throughout this. We would also like to thank all of the nurses and doctors that took care of Demetri during the past 3 months, especially his primary nurses Kathy, Kristin, and Stacey.

May 28, 2009

This is how we found Demetri's bed today when we walked in,
then we looked down and found this...

Demetri has finally made it to 5 lbs!!! He is actually outgrowing some of the preemie clothes now and I have washed the newborn clothes and taken them to his room.

We have had some ups and downs this week. Over the weekend, Demetri made it to the low end of full continuous feedings. And he seemed to be tolerating them fine, then Tuesday when they increased the feedings to 11.5 ml/hour he started having desaturations and bradycardia. These happened through the night and he needed some oxygen by nasal cannula give him a greater flow of air to help him with the shallow breathing. I think the consensus now is that he was not tolerating the larger volume and it took a little while for his stomach to get used to it. After holding at that volume for another day and taking off the nasal cannula, they were able to increase him to a final volume of 13.5 ml/hr.

Demetri has lost weight the past 2 days (only 7 grams) so they are adding calories to his milk. He is back up to 26 calories/ounce breastmilk, like he was before surgery. Hopefully this will help him start gaining weight as well as before, but it may take a couple of days to see the results.

The final step to getting him home is to compress his feedings to an hour so that we are giving him bolus feedings every 3 hours, rather than continuously. Then the plan is to do the bolus feedings during the day and do continuous feedings at night so he can sleep throught the night (which he already does... thank you nurses!). So we had feeding pump training this afternoon from the home health rep.

Please keep your fingers (and toes) crossed that all goes well then next few days. Hopefully Demetri will be able to come home next Wednesday or Thursday!

May 22, 2009

Resting with his bear after extubation!

Demetri has had a rough couple of days. After being extubated on Tuesday, he started getting feedings through his new G tube in the afternoon. They increased his feedings fast and reached full feedings (30 ml) by 2 am Wednesday morning. After two of these full feedings the problems started. He stopped digesting the food and his bowels stopped moving. He started oozing blood and fluid out of one of the incisons. So they stopped his feedings and tried to figure out why he was so uncomfortable and oozing. He had to get alot more pain medication and blood transfusions (because he was anemic). This increase in pains medication led to other problems, his heart rate and respiratory rate both dropped. He did start getting oxygen through a nasal cannula soon after being extubated in order to help to stimulate him to breathe.

Momma finally getting to hold Demetri!

On Thursday, things started to take a turn for the better. He was finally able to relax and rest more comfortably. He was kept on IV fluids for the day to let his stomach rest. He gradually started to appear more and more comfortable. In the afternoon he had a couple of apneic events so they decreased the amount of pain medication he was getting. He gratefully had a good night and this morning (Friday) he was awake and moving around when we came into his room. He looked so much better than he had in the past few days. This afternoon he started to get small feedings again through his G tube. He has continued to have occasional problems with apnea so they stopped his continuous pain medication and will just give it to him if he needs it. Hopefully these events will stop now. They also removed his nasal cannula. The plan is to slowly increase his feedings this time and without any other problems he will hopefully get to come home within the next couple of weeks.


As far as Eleni, today was her last day of school and she had a little party at school and then we took her to Deanna Rose Farmstead to feed the goats and milk the cow. We also found out that she talks about Demetri to everyone at school. We don't know exactly what she is saying, but she appears to be excited about her baby brother.

May 19, 2009

The calm before the storm

Demetri had his surgery yesterday and is doing well. It was scheduled for 3-3:30, but they called at about 11 am and were ready for him early!! He did very well, as did the surgeon. He was able to do the fundoplication and the gastrostomy tube using the laproscope... which is great. The gastrostomy tube that he was able to put in is the "Mic-Key" button. So it is not a tube a all, but a little button on his stomach. It looks kind of like a the air valve on a beach ball.

Demetri is back in the NICU, still on the ventilator. He was having alot of pain yesterday and through the night and needed pain medicine often to keep it under control. He also had a couple of blood gases through the night that were not very good and they were not able to wean his settings (the rate of the breaths and the pressures used to deliver the breaths to him) on the ventilator. This morning he looked a lot more relaxed and comfortable. Chris and I were able to stay at the hospital with him last night and had a room in the Ronald McDonald Family Room to sleep in on the floor just below Demetri.

Today they have been able to decrease his ventilator settings slowly. He is waking up more, but he is not at all happy about the breathing tube being in. Hopefully they will be able to extubate him (take him off of the ventilator) tonight or early tomorrow.

The surgeon said he could start getting small feedings through the g-tube since he had bowel sounds and clear output from the g-tube (and he stooled!!!) So he got his first feeding of 10 ml breastmilk at 2pm. Then the plan is to increase by 5 ml each feeding as he tolerates it to reach his full feedings by tomorrow.

His hematocrit and hemoglobin are also quite a bit lower since surgery... he may be getting a blood transfusion before the end of the day.

Demetri also has a new "girl friend". Kristin has asked to be his primary nurse at night this past week. She is taking excellent care of him also.

All in all we are doing well. He just looks at us and tells us that he is definitely ready to get off the ventilator. Thank you all for your continued thoughts and prayers. Without your support we would not be making it through this. Demetri is stronger thanks to all of you.

May 14, 2009

Thanks for the new duds Bacon family,
it is already helping
to pay for my room and board!

Demetri has a lot of good news. His weight is up to 2100 grams, that's 4 lbs 10 oz. And he is getting so big.

Also... he is scheduled for surgery on Monday afternoon. They are planning to do both the gastrostomy tube and the fundoplication at the same time. We are hoping that they can do it by laproscope instead of as an open procedure to make his recovery easier. He had an upper GI study (they put barium in his NG tube and watched it with an x-ray machine as it moved from his stomach to small intestines) on Monday that showed significant reflux of the barium back up into his esophagusm, but it also showed that his intestines were positioned properly. So we are all set for surgery.

NAP TIME!

He has been here long enough and is cute enough that he has attracted a couple of nurses that have chosen to be his primary nurses. This means that they are assigned to him every time that they work. Kathy and Stacey are taking very good care of our little man.

This past weekend Kristen and Eleni had a day out when they went to a baby shower for a friend. Eleni entertained everyone with her twirling and giggling and helped to open the presents. She is keenly aware that everything is not well with Demetri. She asked daddy if he was sad because Demetri wasn't with us at dinner last night. Hopefully we won't have to have many more dinners without him and that he will be home with us in the next couple of weeks.

May 8, 2009

Demetri has reached 2 kg!!! (4 lbs 6.5 oz) He has doubled his birth weight!!! We are at the hospital now and just talked to the neonatologist in rounds (when they stop by each morning at the bedside to discuss the plan of care for the day... week) and they have already talked to the surgery team about Demetri. Hopefully the surgeon will come by to see him and order the pre-op tests that he needs... but we understand they may make him wait a little while longer to grow some more. His "H and H" is low ( his hematocrit is 25 and hemoglobin is 7.1) but his reticulocyte count is 4.5 (this means that he is making new red blood cells). So he may have to have a blood transfusion prior to surgery/going home.

He has been changing in his looks as you have seen in the photos. He is starting to grow a double chin and his little fingers are getting fat. The nurses have found him a bouncy seat and swing that he enjoys. He even cries when they take him out of the swing.

Eleni is missing her baby brother. She has named one of her dolls Demetri, she carries him around, and puts him to bed in his nursery. She is anxious to visit him, but there is still a ban on siblings because of RSV (and the H1N1 virus!!!). We are all excited to look forward to the day when we can finally bring him home. Thank you to everyone that is keeping him in their thoughts and prayers as he gets ready for another surgery.

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.

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.

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.

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.

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.