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.