April 5, 2009

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

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

April 4, 2009

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

Yeahhhhh!!!

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

April 3, 2009

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

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

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

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

April 1, 2009

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

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.

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.

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.