Settling In at DuPont

While my first night with Caili was wonderful in many ways, it was still a tough night for both of us due to those awful long prongs DuPont uses for the CPAP. They really upset Caili the first time they went in and unfortunately every four hours they had to be removed to be suctioned and then reinserted. It was a grueling night for both of us.

But Tuesday morning brought great news. Caili had convinced the doctor and nurses that she would not be pleasant to deal with if they kept putting those long prongs in her nose. So the doctor recommended trying a similar system to what she was on at Jefferson. While more comfortable (just the small cannula) it is less support than CPAP. Thankfully, Caili was able to handle it.

As the week progressed, Caili continued to allow them to wean some of her support and was really settling in. And why not...her new room is just great. Because it is a private room, we can control the amount of noise, light and stimulus. It has really seemed to make a difference in her overall disposition. She is already calmer and more tolerant. As for me, I am thrilled to report that I too have really settled in. Because it is a private room, there are so many more options for me while I am with her. As you read from Tim's last post, our room has a pull out couch that I can sleep on at night or nap on during the day when Caili sleeps (she doesn't sleep much at night). It has a land line phone that I can use (or my cell) to make calls, there is wireless Internet access (I’m watching her sleep while I type this post), a flat screen TV and storage space for my personal items (I saved a few drawers for Caili too). So while my focus is attending to her needs, when she sleeps, I too can now sleep or catch up on things like email and phone calls. In addition to all of this, because I am a nursing mom, they feed me breakfast, lunch and dinner for free in the hospital's cafeteria. Or, Tim and I can eat for free at the wonderfully accommodating Ronald McDonald house down the road.

As for the testing and answers we came here for, three of the four tests were done this past Thursday. And, while it was a bit scary since they had to put Caili under and put her on the ventilator, we were thrilled with the end result and how quickly she came back off the vent (once again, Caili extubated herself). It seems that Caili does not have any airway obstructions and no major irritation in her esophagus or small intestine (indicating reflux). The tests did confirm that Caili just has very immature and very damaged lungs (from the early weeks of being on the ventilator to keep her alive). And while that may not seem like good news, it actually is to us. It means that with time and good nutrition, Caili will grow new lung tissue and slowly get stronger. That time may be months but she is well worth the wait. And, given this news, we are so happy we have these new accommodations to make that time pass more quickly.

We have one more test on Monday to finally rule out non-acid reflux. It is a 24 hour test and by Wednesday, we should know the results. If the test comes back negative, the plan is to slowly start feeding Caili by mouth once again. I know that this will bring Caili a lot of pleasure and only help with her overall satisfaction and ability to sleep more soundly.The only downside of our move to DuPont is that Tim has been running himself ragged driving from work to home to take care of our dog Ellie, then to the hospital and back home again each night. So, to make things easier for us, we decided to send Ellie to Tim's sister’s house for a while. She has been so good for us throughout this past year and we will miss her terribly but not having her at home will be so much easier for us (especially Tim). It will allow us all more time together since Tim will be able to stay in Delaware, either here with Caili or at the Ronald McDonald house and commute from here to work. I plan to go home once a week to pet the cat (poor Kotie).

While we have no end in sight, we are so thankful that Caili is currently doing well, that the tests didn't show anything which would require major surgery and that we are in a private room where we can all feel more like we are at home.

We posted some new pictures and you can find them in the top photo album on her page. Click on the mini picture to see them in full size. You won't believe how big she is getting. She’s now just shy of 7 pounds. Her smile gives us a kind of happiness we’ve never experienced. It’s worth every bit of heartache we’ve been through.

Thank you for all of your well wishes and support. Hopefully we’ll have some more good news next week.