Elise trying to talk

So here is how Elise has been talking recently. I think she is starting to realize she can form different sounds, and she can make them loud. It is pretty funny when she is talking loud and nurses will come in to talk to her because they can hear her out in the hall.

Steady as she goes

Big smiles from Elise these days. Thank you Grandma Mary for sending me a picture of Grandma Eleanor with Elise. She's showing you her powty lip. Bath time! Scrub those armpits! Check out that fat belly.

Well, things have been moving along pretty steady this week. We have figured out that she really likes eating in bed this week. So, she has been getting breakfast, lunch and dinner in bed. Now next week could be a whole different story, she could want to eat upside down. Who knows! Her weigh in yesterday showed minimal weight gain, so she is still right at 13 pounds, which the doctors are happy with. She is vomiting a lot less with the smaller feeds during the day and the continuous feeds at night. We have taken a step closer to going home, by having the discharge coordinator come talk to us and start getting home health and our medicines approved by insurance. But it is too soon to get excited. We all know how Elise can change her course of treatment in a heartbeat. She is officially on the lung transplant waiting list. I can't remember if I explained before how that works. For children under the age of 12 years they get lungs depending on how long they have been waiting, instead of how sick they are. So unfortunately some kids die waiting for a transplant because they haven't been "listed" long enough. The general wait for infant lungs is 3-4 months, and for toddlers and up it is 2-3 years. But Elise isn't a candidate for lung transplant just yet. We still have other avenues to try (meaning other medicines) before there are no other options. So once she gets close to the top of the list we will make her "inactive" until the time comes when she either needs lungs, or we can take her off the list completely. While she is inactive she continues to build time so that if she does need lungs down the road, she won't lose her spot and have to start back at the bottom of the list. Jason will return to Springfield Saturday to work Sat., Sun., and Monday. And I have to return Monday for orientation for my new job at Urgent care. But we will both be back on Wed. I got to take Elise out of her room again last night and walk around the unit. She talks so much now, she chatted with all the nurses that we saw. Everyone here knows her. Even those who have never been her nurse. I'll post again on Monday, I hope you all enjoy your weekend. Love, Kristin

Elise and rattle video

Here's a video I tried to get of her and her rattle yesterday. My battery in the camera died so it's pretty short and not very exciting.

Oops, it's Thursday

Jason and Elise. Great Grandma Mary and Elise. Here you can see how her face is flushed from her medicine.

Sorry, forgot to post last night. Elise has been eating better since we came back Tuesday. We changed the bottle and nipple she was using and she seems to like it. Her vomiting has been holding steady at a minimum. She isn't soaking everyone that comes to visit. Speaking of visitors, She was very popular yesterday. Jason and I brought up Grandma Eleanor and Grandma Mary Tuesday, who stayed until Wednesday. And my Mom, Dad, and brother Brad came up on Wednesday to see her also. For some reason I didn't get a picture of Grandma Eleanor with my camera, but I do remember taking pictures of her. So, Elise is up to 20 on her Flolan. Now the doctors plan on increasing her on Mondays and Thursdays, to mimic what we will do when we get home with her. She is still on 1 liter oxygen, and the doctors said they don't plan on changing that anytime soon. They say it is like a vitamin for her, so she gets to keep it for now. She weighs a whopping 13 pounds! And is going to get weighed again today, so we'll see if she has gained anymore. I'll post again tomorrow, I promise. Love to all,

Kristin

16 weeks old

Here she is napping in a new outfit given to her from her Grandma Jane. Here's a good look at her face with almost nothing on it. We were changing the tape on her nasal cannula which you can see down by her chin.

This is my cousin Mara. She and her family came from K.C. to meet Elise. Her daughter Claire is who Elise has inherited all the great clothes from. One of her sleeping positions. Her and Mara again, playing with the soccer ball. She loves the soccer ball.

Well Elise had a pretty good weekend. She was visited by her cousin Mara, and was really happy and talkative the whole time. But of course she stopped when I got out the camera again. Her Flolan has been increased to 17ng, with her current goal of 20, she is almost there. We are still having trouble getting her to consistently eat, simply because the medicine makes her feel so rotten. I tried breastfeeding her again yesterday, and I don't think I have seen her so mad! So, the lactation nurse is supposed to come by tomorrow when we get back to help. Her oxygen is still at 1 liter, and she will likely still go home on it, when that time comes. We are discussing the possibility of her also going home with the NG in to help us give her meds and keep her weight up if she doesn't continue to eat well. Now I talk about "going home", but we still don't know when that will occur. It is all up to Elise. She gets cuter everyday, and you can see changes in her each week with her development. It is really something. I hope you all had a great weekend. I will post again on Wed.