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.