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.