Internet problems

Hey guys, Sorry for not posting last night. It wasn't that I forgot, it's that the wireless internet is down in the hospital. It isn't working today either, so I'm having to post from a desktop in the hospital that doesn't have any of our pictures. So, as soon as I can post with our laptop, you'll get pictures and hopefully video if it works! Elise has been holding steady at 3L o2, and we increased her feedings to one hour on Thursday. She still spits up and vomits, but as we've learned from the past, she does that no matter what. Since she has officially hit 2 months (as of tomorrow) she will get her 2 month vaccines tonight :-( I really didn't think at the beginning of all this she would be in the hospital long enough to get her first set of vaccines. She is still gaining weight coming in at 10lbs 4 ounces currently. And is still on Reglan to help decrease vomiting and increase GI mobility, a diuretic to keep fluid from building up in her lungs, and Viagra to help with oxygen exchange in her lungs. And by the way, I have been trying to find a Viagra onsie without any luck. I've even searched the NASCAR sites too. So if anyone comes across a Viagra onsie, let me know where to find it. Jason is in town this weekend, but leaves for Michigan tomorrow for 2 weeks to check out a residency. I've been looking for ER agency nursing work here in St. Louis without any luck. So Jason and I are trying to figure out something for next month that would get me home to work some shifts at Skaggs. Since Jason has to stay in Spfd to work his part time job for insurance, we would be trading of time in St. Louis with him coming up during his weekend off, and me going to Spfd for that weekend to work. Hopefully it will work out, not only giving me a change in scenery, but also a little extra $ in our bank. And, it would allow Jason more time with Elise, and still give him study time in Spfd for boards. I've changed rooms at the Ronald House to room 17. I had some noisy neighbors, so they graciously let me move rooms. And, riding my bike to and from the hospital has proven to be great exercise, as well as not using the elevators. I have received several VERY thoughtful gifts lately, ranging from gift cards to music boxes, and I thank all of you SO much. It really helps to know that we are not going through this alone. And I know that many of you have expressed the wish to come visit, and I want you to know that I know you are thinking of us, and that means more than you know. I have unlimited texting on my phone, so any of you feel free to text if you feel like it, and I'll text you back. Love you all, Kristin

Smile!

Elise smiling for the camera. Fredbird helping Elise do her OT head lifting workout. Elise sleeping on Mom. Here's my self portrait.

Elise ready for bed. Big stretch! Hi bright eyes. "Do you like my new outfit?" Hello,

Things continue to slowly progress here in St. Louis. They turned O2 down to 3L today, and Elise has handled it well. Speech therapy and OT are working with her on bottle feedings, coming in twice a day. Her oral aversion is worsened since being intubated twice while in Springfield, so it is going to take longer to get her back on the bottle/breast. She continues to gain weight with her feedings still going over 1.5 hours. She will likely be on 3L the rest of the week before trying 2L this weekend. The doctors say that once she is on 2L, I can start breastfeeding again.

She is starting to smile in response to people talking to her, which is fun. And she will get her 2 month old vaccines sometime this week. I spoke with the doctors about an estimated discharge date, since I have to return to work by Sept 1, and they think that we should be home by then, but no sooner. (big sigh) So lets hope she excels with the feedings and gets to go home sooner.

I'll post again on Friday, until then take care.

Kristin and Elise

8 weeks old

Chubby Cheeks Elise snoozing after her bath.

Elise with Grandma Gail. Elise with Grandpa Drennan.

Hello everyone,

Sorry I didn't post yesterday, I got my days mixed up. They all kinda run together after doing this for 8 weeks. Elise has been steadily improving over the weekend. The doctors have made very few changes with her. They decreased her oxygen flow from 5liters to 4 liters, keeping her FI02 at 35%. All of her meds and feedings remain the same. Right now the doctors want her to gain weight, since she has been hovering right around 4.6kg(10lb 2oz) over the last few days. They are happy to see that she is only vomiting once to twice a day, with no vomiting every once in awhile.

OT evaluated her today for bottle feeds, and speech is going to see her tomorrow for the same thing. They won't let me start to breast or bottle feed until her O2 flow is 3 liters or less. So we still have a few days before that will happen.

Her Dad, Grandpa Drennan and Grandma Gail left yesterday evening, so I'm officially by myself in St. Louis. I have been riding my bike back and forth from the Ronald McDonald house everyday since last week, and got to use my headlight last night! It's a really short ride to and from. In fact, a van left the house this morning at the same time I did, and we both arrived at the parking garage at the same time, even though we took different routes. So far I've been lucky about not riding in the rain, but I'm sure I'll have my chance.

We have been trying to find different ways to add stimulation, so Elise doesn't get bored staring at her Fredbird mobile. So, as you can see in the picture she got to try a swing today, and really seemed to enjoy it. Other than that I'm trying to get her used to being held again since she went almost 2 weeks without.

I hope all is well for everyone. I will post again on Wed.

Kristin