Tuesday, March 31, 2009

March 31, 2009

Here is Demetri sleeping (in any position) while
daddy is trying to get him to take his bottle.


It was another good day. Demetri gained 30 grams and now weighs 3 lbs 1 oz. He had his 30 day follow up head ultrasound to check for bleeding and it was normal. He has attempted a bottle every feeding since midnight and has finished all but 2 of them. There really isn't any other new news, he continues on Caffeine (for his apnea) and we are waiting for the chromosome study results.

We want to thank everyone again for your continued support and prayers they are a source of strength for us and Demetri. It definitely seems that our prayers are being answered.

Monday, March 30, 2009

March 30, 2009

Demetri had another good day today. He gained 42 grams and now weighs 3 lbs. The big guy is measuring 18 inches long and his head circumference is 11 inches. He made it through the night in his bassinet and kept his temperature up so well that we actually had to remove one blanket. His nurse even took the isolette out of his room, a sign that they do not feel that he will need to be put back in it.

His morning labs were all good. They decided to stop his iron supplement and start a multi-vitamin in preparation for going home. They also changed what is being used to fortify his milk. They were using a Human Milk Fortifier but are now using formula. This is also in preparation for going home. His milk is fortified to 24 calorie from 20 calorie (per ounce) in order to help him gain weight. They also increased the amount that he gets in each bottle. He was getting 26 ml and is now getting 28 ml.

It looks like Demetri has seen the wear and tear this has taken on his parents and is ready to get out of the NICU and go home. Eleni is excited for him to come and "misses him so much". But we will see what she thinks after she realizes that when he does come home that he is here to stay.
Demetri's room is so much bigger without the isolette in it.

Sunday, March 29, 2009

March 29, 2009

Lets start with his weight, he actually lost 2 grams today. And now the GOOD news...They changed him to bottle feeding with cues. This means that if he is awake, alert, and showing signs of wanting to eat then he gets a bottle every three hours. He took 3 bottles in a row through the night and 2 for momma today, but he got tired and only took part of a bottle for daddy. As you see by the picture, Demetri made it to a crib/bassinet today. He has to maintain his body temperature above 36.4 C and gain weight to stay out of the isolette. There is a good chance he will have to go back in, but all was good today.

Because of his great weight gain the past couple of days, they increased his feeding volume to 26 mL. This increased volume proved not to be a challenge for him.

His nurse will be drawing weekly labs tonight to see how his electrolytes, hematocrit, and blood gas are doing.

It should go without saying, but we just pray that Demetri continues to progress, in that he maintains his temperature and gains weight, so the day that he comes home is sooner than later. This will definitely improve our daily lives which directly affects Eleni's and allow us to ALL be together and us not to be torn between the two of them.

Here is big sister Eleni putting her new baby to bed (practicing for Demetri -- we just hope he doesn't end up like her old babies) and singing "rock-a-bye baby in the tree tops" to her.

Saturday, March 28, 2009

March 28, 2009

Here is Demetri snuggling with daddy during his NG feeding. He has fallen asleep while holding in his pacifier with his hand.


If you can't see the trend, weight gain is a very important thing in the NICU and in Demetri's world. He had another good day, gaining 33 grams. He now weighs 2 lbs. 14.6 oz., so close to 3 lbs.!

He had another good day today. He continues to do well on his bottle feeding, despite missing a chance to bottle feed through the night. He has started to wake up a little more before some of his feedings and lays awake during his NG feedings.

Demetri has also been upgraded to Pampers Preemie diapers from the small preemie diapers he was wearing. After several outfit changes because the diapers did not fit well around his legs and failed to contain the poop, the decision was made to try to the bigger diapers. They are really big around his waist and hang down to his knees, but they are doing the job.

Demetri should be getting a bath tonight and a new isolette. Hopefully this bath will remove the rest of the purple marks that are all over his head from the EEG electrode placement.

Hopefully Demetri will continue to do well. The Caffeine seems to be doing its job. He has not had any apneic events in the past few days. And all of the tests that were done earlier this week have thankfully come back negative. We are looking forward to him moving out to a bassinet sometime this week (hopefully)!

Friday, March 27, 2009

March 27, 2009


Demetri is 4 weeks old today. After losing 13 grams yesterday, he gained 63 grams today. This puts him at 2 lbs. 13.5 oz. He has taken 6 bottles in row and he is finishing them faster with better coordination. The other good news of the day is that the blood for the chromosome study has finally been sent off to California.

Thursday, March 26, 2009

March 26, 2009

The biggest news of the day is that Demetri lost 13 grams, despite filling out his clothes better. Other than that he is doing good. He remains off of the oxygen and is tolerating that well. He finished all of the last 3 bottles in 15 to 20 minutes. Hopefully he has turned the corner with his bottle feeding. He is also doing a good job of keeping his temperature up.

We are still trying to get the whole genetic testing lined out and will hopefully get things started tomorrow one way or another.

We were unable to spend much time with him today because his big sister Eleni had tubes put in her ears and her adenoids removed. She is doing pretty good, just having to get through the day and past the effects of the anesthesia. We are hoping that she will get tremendous relief from the procedures.

Wednesday, March 25, 2009

March 25, 2009

Demetri gained 20 grams today, so with yesterday's loss he now weighs 1239 grams which is almost 2 lbs 12 oz. He had a much better day today relative to the past few days. He did not have any apnea events and they even removed his oxygen. He seems to be tolerating this change just fine, but we will have to wait and see if needs it again. He got his first daily dose of Caffeine today and this could be helping him not to need the oxygen.

Some test results have come in, but we are still waiting for more. The EEG did not show any seizure activity and his RSV test was negative. He had a cardiac echo last night that confirmed the presence of a bicuspid aortic valve, an ASD (a tiny hole between the left and right atria), and left pulmonary artery stenosis (this can be a normal variant but we will just have to watch it). They were not able to track down the genetic test kits from California, so we are hoping that tomorrow the blood for the chromosome study will finally get sent off.

Tomorrow will be a busy day for us. Eleni will be getting tubes in her ears and her adenoids removed. This will require a delicate balance between NICU time and surgery/recovery duties with big sister.

Tuesday, March 24, 2009

March 24, 2009

With all of the craziness yesterday, Demetri lost weight, but only 4 grams. He had a god night, no apnea events, but did have one as I was walking into his room this morning. His oxygen saturation was 42% (normal is 85-100%). He recovered pretty easily with stimulation and increased oxygen.

He had another busy day with labs and tests. The doctors decided to start ruling out all the possible causes for apnea. Apnea is not a normal finding in a term infant, like it is in a preterm infant. And now that Demetri is 37 weeks gestation, they consider him full term. They did viral cultures to rule out a viral infection; a rapid RSV culture to make sure he does not have RSV; they restarted him on Caffeine, in case the apnea is central apnea (in which the brain does not trigger a respiration in response to increasing CO2 levels in the body); and got an EEG to rule out seizures. In infants, seizures are often subtle, and apnea (and even blinking) may be the only indication.

He tolerated all of these procedures fairly well. He almost finished his bottle at 11am, but we did not get to give him the afternoon bottle because they were putting on the EEG electrodes. I did get to snuggle with him and take a short nap during his NG feeding, which was very nice. Daddy had to stay awake and study for final exams that he is making up this week (wish him luck, the first is tomorrow).

We also found out this morning that the micro array study (chromosome study) that they sent 3 weeks ago did not get processed!!! So we have been waiting for answers from a test that was never run. The nurse practitioner made many calls and I think that they will send another sample to a lab in California and we should be able to get the results back in about a week. We will know more tomorrow. Hopefully this plan will work so we do not have to wait another 3-4 weeks for answers.

We also want to thank everyone for your continued support, thoughts, and prayers. These have been and continue to be very difficult times and we definitely find strength in all of you and that helps us make it through each day.

Monday, March 23, 2009

March 23, 2009

Demetri gained 16 grams for a total of 2 lbs 11 oz. His face is starting to fill out and he feels like a bigger baby when you hold him. His nurse did his weekly measurements last night and his length is up to 15.5 inches and head circumference is 10.6 inches. His blood gas from the early morning was no different than with out the oxygen, so his nasal cannula flow was turned down to 0.3L. His other morning labs were normal. The electrolyes and CBC looked good, and there was not a shift indicating an infection.

The rest of the day is not as easy day to blog about. It was very emotional and tumultuous. We found out he had had an apneic event this morning before we got there. This was concerning because he had not had one in a while and the nurses had to increase his oxygen to help him recover (that had never happen). He took his full bottle feeding for mommy this morning in record time (less than 15 minutes). Then he had another apneic event mid morning that required a lot of stimulation to get him to take a breath. He then had 2 more events while I was holding him during his NG feeding at 2pm that required a lot of stimulation to recover.

His nurse practitioner came to the bedside to evaluate him and the events. She decided to do a septic workup (draw labs including a blood culture, urine culture, CRP, and blood gas) and chest x-ray. The preliminary afternoon labs look good. The CRP was normal as was his chest x-ray. It will take a few days to get the results from the blood and urine cultures. After all of the action of getting the labs, he still took his 5pm bottle pretty well for daddy, leaving only 4ml to put in the NG tube. But he had another apneic event when we put him back in the isolette, so they increased his oxygen flow to 1L.

After great debate, we decided to leave him in the capable hands of his night nurse and go home to eat dinner with Eleni. We called to check on him after his 8pm feeding and he had not had any additional events and was tolerating his feeding well. We are hoping and praying that he has no more events tonight and that we find him having a better day tomorrow.

Sunday, March 22, 2009

March 22, 2009

It is official...Demetri broke the 1200 gram mark, he weighs 1207 grams. We are thinking that he will get the chance to move to a bassinet sometime this week. Today he took both full bottles and the volume of his feedings has been increased to 24 mL.

They are drawing blood from him tonight in order to rerun tests. They are checking to see if his CBC is still shifted, how his electrolytes are now that he is off of the sodium chloride supplements, and check a blood gas on his oxygen.

Saturday, March 21, 2009

March 21, 2009

Demetri gained another 32 grams and now weighs in at 1190 grams (2 lbs. 10 oz.). So he may only have about 10 grams to go before thinking about trying life outside of his isolette and moving into a bassinet. He has been able to finish 4 out of the last 5 bottles that he has been given. Maybe the oxygen is helping him a little.

It looks as though he has his days and nights mixed up. All day long he refused to wake up, even while he was drinking his bottle. But tonight at the end of his 5 pm feeding he started to become more and more alert. He was still awake when we left at 6:30 pm.

Friday, March 20, 2009

March 20, 2009

Demetri had his biggest weight gain yet with 38 grams. He now weighs 2 lbs. 9 oz. or 1153 grams. His doctor decided, after seeing the results of yesterday's blood gas, to start him on oxygen. So he now has a tiny nasal cannula which is providing 50% oxygen at the low flow of 0.5 L per minute. The reason behind this decision, is that Demetri was hypoventilated due to the amount of energy it takes to him to breathe. Hopefully now he will be able to rest comfortably, have more energy, take his bottles better, and put on weight better.

After only minutes of having the cannula in his nose, he has already learned how to hook his finger through it and pull it out of his nose. He did finish his 5 pm bottle that daddy fed him, but the challenge was getting him to wake up and stay awake long enough to eat. Hopefully over the next few days we will see him gain the stamina to take more bottles per day.













After finishing his bottle, Demetri fell asleep in daddy's hand and slept through his visit from Lauren, Bobby, Patty, and Athan.

Thursday, March 19, 2009

March 19, 2009

Here is our big guy all stretched out agian, but he still doesn't quite fill out his preemie clothes yet. Demetri gained 10 grams today and is still working on his bottle feeding. I think this will be his greatest hurdle before getting to come home. There is a question about his blood gas that was drawn this afternoon. His CO2 was elevated so there is a chance they could put him on oxygen (by nasal canula) to help him keep from having to work so hard. This could help keep him from desaturating at the end of his bottle feedings. Since no changes had been made by late this afternoon we are thinking that they are going to wait before making the decision to start oxygen. The doctors stopped his sodium-chloride supplements and will recheck his electrolytes in a few days.

His nurse last night gave him a bath and remarked that his hair is kind of curly when it is wet. It also seems that he has been getting highlights put in hair when we aren't around.

He is also getting better at his pacifier skills. He can almost keep it in his mouth completely by himself and gives it one heck of a work out. Here he is sucking on his preemie Soothie pacifier.

Wednesday, March 18, 2009

March 18, 2009

Demetri gained 32 grams!!! He now weighs 1103 grams (2 lbs 7 oz). He only needs to gain another 100 grams before trying to come out of the isolette and into a bassinet. Demetri and daddy had a "boys day" in the NICU. Chris stayed with him all day changing diapers and taking temperatures in between studying for his GI finals at school. I stayed home with Eleni for most of the day playing.

Demetri is still trying to take every other feeding by bottle. He did well through the night last night, and then today took a whole bottle for daddy and most of his bottle for mommy. He seems to be more coordinated with his eating, making less of a mess, but tires out easily toward the end of the bottle and starts to have oxygen desaturations. We did not get any definitive answers about the renal ultrasound. The Neonatologist wanted to look at both scans and compare them for himself to see if there was any difference. He did not think that he wanted to start any antibiotics (as a prophylaxsis) right now.

Here he is stretched out in the isolette with his lady bug in the corner. I think the additional 4 ounces are making his clothes fit a little better.

Tuesday, March 17, 2009

March 17, 2009

Happy St. Patrick's Day!

Demetri was dressed in a green sleeper and wrapped in a green blanket when we got the hospital this morning. He was wide awake looking for something to eat. We tried to bottle feed him, but after waiting so long (20 minutes late starting the feeding because he was supposed to get a renal ultrasound) and then filling his diaper, he did not have the stamina to finish the bottle. And he did not get to stay in that green sleep long enough for us to get a picture of him, he pooped out of his diaper before we got the chance. He did take his entire bottle at the 2pm feeding well.

It is very hard to leave him in the isolette during the NG feedings when we are sitting right there wanting to hold him! But we know that it is important for him to be able to rest and conserve his calories to grow. He held his daddy's finger until he fell asleep during the 5pm feeding.

He gained another 5 grams today and is up to 1071 grams. They may have to increase him to 26 cal/oz breast milk for him to start gaining more weight. He had a repeat renal ultrasound this afternoon and the tech thinks he still has very mild hydronephrosis of the left kidney. We will have to wait for the official report from the radiologist tomorrow.

Monday, March 16, 2009

March 16, 2009

Despite Sunday kind of being the breaking point with Demetri not performing as well as usual and Eleni waking up asking "Where am I going today?", today was a little better. The day started off rocky when we found out that the lab work showed possible infection (a left shift on the CBC). We still don't know exactly what will come of these results. But his doctor today felt that because he has a low risk for infection and did not look "sick" upon exam, that the test result reflected stress. In Demetri's case, stress is caused by trying to take a bottle every 3 hours, trying to maintain his body temperature, loud noises such as floor cleaners and monitors, etc.

The new plan is to attempt bottle feeding only every other feeding and do NG feedings in order to reduce his stress level. The two feedings today went well, taking 1 full bottle and most of the 2nd bottle. He is up to a maximum volume of 21 ml per feeding now.

His nurse did weekly measurements last night and his head circumference increased by 0.5 cm to 26 cm and his length increased to 38.75 cm (this would mean that he grew about 4 cm in one week...there might have been a mistake in measuring). He gained only 9 grams and is up to 1066 grams or 2 lbs 5.6 oz.

We pray that there is not an infection and that by simply giving him some rest that he will start gaining more weight and be more successful in his feeding attempts.

Here Demetri is holding on to his Snoedel as he rests in his isolette.

Sunday, March 15, 2009

March 15, 2009














Over the weekend Demetri gained a total of 27 grams (1 oz.). He has fallen off his curve and only gained 5 grams today. Though he took about 3 to 4 full bottles each day, things haven't gone as smoothly today as we have been used to throughout his stay. He is having more difficulty with reflux causing nasal congestion and drops in his oxygen saturation. Due to the extra stress that he is experiencing, his heart rate is also elevated.

After talking with the neonatologist, we all decided to discontinue bottle feedings for a short period in order to give him a rest. They will be giving him his feedings by NG tube and a pump in order to slowly give him the feedings over 45 minutes. They will also be checking some lab work to make sure he is not getting sick. They have also had to increase his isolette temperature up to 27.3 C to help him maintain his body temperature.













We are concerned about these changes, but hope that it is only the small steps backward that can happen in the course of a NICU stay.

On a side note, we found a couple of "grafitties" that his Uncle Lan left around his room on one of his late night visits before leaving town.

Friday, March 13, 2009

March 13, 2009

Demetri had a busy night last night. He took 3 full bottles, got a bath, and got a new isolette. He is now in a Drager isolette. The Drager is considered to be the "old cadillac" that was upstaged by the Giraffe. The only real difference in his world is that they are no longer providing humidity. This means that he has to work a little harder to maintain his temperature. The nurses usually change isolettes every 2-4 weeks for cleaning... it is hard to believe that he is already 2 weeks old.

He gained another 20 grams and is almost 2 lbs 5 oz. He is still working on bottle feeding and we are also trying breastfeeding each day. He woke up for his 2pm feeding rooting around and crying because his bottle was not quite ready. This was the first time he has reacted to not having his bottle ready when we get him out for a feeding.












Big sister Eleni came by for another visit after finding out she will be getting tubes in her ears in April and possibly have her adenoids removed. She was excited to see him, but thought we should wake him up! She wanted to reach into the isolette to rub his back. I think she is going to be a great big sister.

Thursday, March 12, 2009

March 12, 2009

Demetri finally surpassed his birth weight! He gained 30 grams (that's 1 oz) and now weighs in at 2 lbs 4 oz. He had a good day today. He continues to take about 3-4 full bottles. He had some upper airway congestion that kept him from finishing a couple of bottles. Thanks to some good suctioning from his nurse practitioner Addie, he is much clearer now.

He had some lab work done this morning to check his electrolytes now that he is on the NaCl supplements. Everything was in the normal range. They also checked "bone labs" to make sure he is growing bone, not using it up, and they also looked good.

Here is Demetri sleeping with his Snoedel (pronounced "snoodle") doll. Moms put them in their shirts to capture their scent, and then their baby can smell them while they are gone. He has had it since his second day in the NICU. The nurses often snuggle it in with the baby, or drape it over them as they sleep so they are not alone.

Wednesday, March 11, 2009

March 11, 2009

Demetri gained another 20 grams, putting him back to his birth weight. He continues to improve his bottle feeding and has taken 3 more full bottles today, not counting what he might take tonight. His doctor has discontinued the Caffeine (for the apnea he had the first few days of his life) because he has been apnea free for 6 days.

We talked to the neonatologist about criteria for going home. She said that she would like for him to be about 1200 grams before taking him out of the isolette and putting him in a crib. Then she said she has sent babies home at 1200 grams before. She also said she is comfortable sending him home with NG feedings (tube feedings through his nose). This is not the norm, and we would like him to be taking all of his feedings by mouth before he comes home. It looks like he will be in the NICU for at least a couple more weeks gaining weight and transitioning to a crib. The doctor also said that babies tend to grow better at home, so we are looking foward to when he gets to come home with us.

Here is our BIG guy holding daddy's thumbs after finishing another bottle.

Tuesday, March 10, 2009

March 10, 2009

Today Demetri gained 20 grams, bring him to a grand total of 960 grams (2 lbs 2 oz). He is almost back to his birth weight!! He eats every 3 hours and has taken 3 full bottles today, one for the nurse, one for mom, and one for dad.

Here is a picture of dad giving him the end of his bottle at 5pm today. It took about 20 minutes, but they made it!



The air temperature of the isolette is turned down to 27C, and he may be able to come out to a bassinet soon.




Eleni had her "big sister" party at school today. She hosted their afternoon snack time. Her choice... yellow iced cookies and vanilla ice cream!

March 9, 2009

Demetri gained weight again today, 14 grams, and is up to 940 grams. He is still trying to take all of his bottles. For the second day in a row he has taken all of his 8 pm feeding, this must be his most alert time of day.
Two nutritional supplements were started today, Vitamin D and sodium chloride. Vitamin D is always added to feedings of preterm infants (to help with calcium usage and bone growth) and Demetri has low chloride levels (due to the small volume breast milk feedings he is getting).
He is still doing a great job of maintaining his temperature and the air temperature of the isolette is being weaned all the time. He also is making his way through his whole wardrobe quickly by peeing and pooping on all of his clothes (especially when Dad changes his diapers)!

Monday, March 9, 2009

March 8, 2009

Demetri gained wieght again. He is up to 924 grams. The nurse did his measurements today (every Sunday night), and he has grown to 13.7 inches long and his head circumference is 10 inches.

He is off of the phototherapy lights again. Hopefully this time for good. So he got to get dressed again. He is still doing a great job of holding his own temperature, and they are having to turn down the isolette air temperature because he is too hot. They increased his feedings today to 19 ml for his weight gain and fortified the milk to 24 calories/ounce.


Eleni came by for a visit today. She wants to sit at the isolette door and be the "doctor" and open and close it and play with the stethoscope. She says Demetri is "her" baby and not ours. Hopefully she will still think this when he comes home.

March 6, 2009


They had to restart the phototherapy lights yesterday, Demetri's bilirubin went up again. So he is sun tanning again. The speech therapist came to evaluate him and was impressed with his tongue strength and suck/swallow coordination. She said he was a "great eater." She left tiny nipples for him to use that fit his mouth better.

He gained weight last night, 20 grams, and now weighs 910 grams. That's about 2 lbs!! He had a head ultrasound to look for bleeding in the ventricles, but it was normal. He also had a renal ultrasound that showed very mild hydronephrosis on the left. They are not going to treat it now, just follow up in a couple of months.

Demetri is now taking 17 ml of milk (his full feeding) and they are increasing the calories from 20 to 22 using fortification powder. This should help him gain weight a little faster.

March 4, 2009


Demetri got to put on his first outfit today. He still has his PICC line in so we cannot dress both arms, but we got to put on a shirt and wrap him in a blanket in the isolette. His weight did not change, still 890 grams, but at least we did not lose. His feedings are up to 10 ml every 3 hours and he is doing a god job of taking most of the volume.

Sunday, March 8, 2009

March 3, 2009

Yesterday, the Neonatologist ordered some consults from specialists, so they should be coming in this week.

Today was a busy day! Demetri weighs 890 grams (1 lb 15 oz). He is still working on increasing his feedings. We are actually using a bottle now and he is taking up to 8 ml of breast milk every 3 hours.

The Cardiologist came today to do an Echocardiogram. It looked essentially normal. He may have a bicuspid aortic valve, like Christopher. They will re-evaluate it in about 1 month.

The Geneticist also came today as Mom was being discharged to go home. He does not think that Demetri has Cornelia de Lange syndrome, as the Neonatologist had thought. He thinks Demetri may have Nager Syndrome, which is characterized by lower jaw and limb anomalies. He does have a small lower jaw and is missing the 4th digit on his left hand. Both of these can be surgically correctable. So this diagnosis was good news. Christopher and I are are very optimistic.

The Orthopedist also came tonight and thinks Demetri has good movement of all of his fingers on his left hand and a good grasp! He wants to see him at 3-4 months of age for x-rays and then will send us to a specialist for surgical evaluation at about 12-18 months of age. He thinks they should be able to close the cleft in his hand and save his little finger. He recommended doing massage to his forearm and fingers daily.

March 1, 2009

Demetri is doing really well. Don't tell him he s small! He is doing everything a 33-34 week gestation baby should be doing. He is still losing some weight, and is down to 915 grams (about 2 lbs). Today his bilirubin went up so now he is under phototherapy lights. This means he gets to wear some pretty neat sunglasses. He is still taking his small feedings by mouth every 3 hours. They just put it in the nipple of a bottle and he drinks it from there.

Thank you to every one for your continued thoughts and prayers.

Friday, March 6, 2009

February 28, 2009

Getting used to my new home in the NICU. I am breathing room air and have had my first "bottle" (a partially filled nipple with 2 ml of milk). They are going to put a PICC line (peripherally inserted central catheter) to continue to give me IV fluids.

















I have been told that this is the Cadillac of isolettes. It is called a Giraffe and keeps me warm until I can do it myself.

February 27, 2009

Happy Birthday!

I have finally arrived. Small but MIGHTY!













I was born at 9:31 pm at Overland Park Regional Medical Center, weighing in at 2lbs 3oz and measuring 13 inches long.

My mom, dad, and big sister Eleni would like to thank all of our family and friends for their prayers and support over the past many weeks...we love each and every one of you.



Please check in to watch me grow.