Elise before her nap

Here is Elise today before one of her naps. Sorry the lighting is low, but it was naptime.

Elise talking after her bath

So here is Elise after her bath yesterday. I guess she really likes being clean and naked after her baths because she is always so talkative. You can see her broviac on her left upper chest.

Little Miss happy pants

Elise and Jason checking each other out, while sitting in her bumbo seat given to her by her Aunt Eva and Uncle Rick. She loves the camera! Happy Friday to everyone! Elise has been in the best mood the last week and a half, that is until we try to feed her. But it really has been fun talking to her and having her smile and talk back. Even the staff make special trips into her room to see a smile. The doctors have increased her Flolan to 13ng, and she seems to be tolerating it well. And they plan to start increasing it daily if she continues to tolerate it, until we get to 20ng. We are still tinkering with her feedings, trying to figure out what is going to get her eating the best. Her problem isn't the skill of eating anymore, it's the desire to eat. This Flolan causes "anorexia" in adults, or "feeding intolerance" in babies. So we are going to try continuous feeds throughout the night through her NG, which will mean smaller amounts in her bottle during the day. We aren't sure if it will help, we just know it is something we haven't tried yet. She was also started on a dose of steroids yesterday that will be given in a decreasing dose over a couple months. This hopefully will help increase her hunger and help with her lung disease. We will post again on Monday from Springfield since we both have to return for work just for the day. Until then have a great weekend. Love Kristin

Moving day ......again

Jason playing with Elise IN the playgym. This is her new way of smiling, I think laughing isn't too far away. Elise snuggling with her bear. We got to take her for walk around the unit tonight. She loved looking at all the pictures, and artwork on the walls. We are going to try and make this a regular routine to give her a change in scenery.

Hey all,

We are a little late posting today because Elise got to move rooms again. This time she has a room with a view! She has two small windows on either side of her crib now, which will allow her to see the sunrise each morning. So, now she is in room 517. Medically she has been doing better since starting the Zofran, vomiting less and tolerating her feeds better. She still isn't taking nearly as much as she was before, but we hopefully will start making progress soon. They increased her Flolan again today to 13ng/kg/min. The cardiologists now want to try to get her to 20 nanograms since she is tolerating the original goal of 10-12 nanograms well. Jason came back early Tuesday am, surprising me by showing up at 3am! He and Elise are getting to know each other again, relearning each other's quirks. So the plan for the rest of the week is to continue to increase her Flolan every couple days, and keep trying to wean the oxygen. We'll post again on Friday. Love to all, Kristin

Elise after waking up

Here is Elise on Grandma Jane's lap this morning. She was talking and kicking up a storm, until I got the camera out. But it's still a cute video.

15 weeks old

Elise in another new outfit, in her bumbo seat. Elise after waking up this am.

Elise will be 15 weeks old tonight. She is still in a good mood despite all the vomiting. We started her on a new medicine today called Zofran. If any of you have ever gone to the ER for nausea/vomiting they may have given this to you. So far today she has had it prior to two meals, and I could tell a difference on the second meal. Hopefully this will help her get her appetite back, and keep her food down. My mom left today and Jason will return here tomorrow. We are going to start posting MONDAY, WEDNESDAY, and FRIDAY on the blog. Sorry to change things, but with so little happening, it will make it easier for us to remember when to post. But I promise to make it up with lots of pictures and more videos. We will have our big meeting later this week with the lung transplant team, the pulmonary hypertension cardiologist, and the neonatologists to discuss Elise's short and long term goals. I'll let you know later when that meeting will be. Until then, have a great week.

Love, Kristin