A Little Bit of Help

Just so that everyone knows, don't worry if you don't see a blog post from me every day. Now that I'm starting to have more energy and Kit's getting ready to go back to work, we're trying to get things done around the house in preparation for Elise coming home. Since we thought we still had 12 more weeks (or at least 10) to prepare, there has been quite a bit of catch up to be done.

Also, Ellie's now in the stage where there aren't necessarily updates on her every day. Sometimes the doctor just calls to say everything is the same and to see if we have questions. Though I suppose I could blog that, it seems rather redundant.

All that to say, we do have some updates to share. As those who have been watching Elise's 7-Day Weight Tracker in the sidebar have probably noticed already, she's now up to 3 pounds, 7.9 ounces (essentially 3 1/2 pounds). She's definitely growing and getting noticeably bigger. She's tolerating her feeds really well and was moved up to 28 cc every three hours (via pump over 30 minutes) yesterday.

Last night was one of our more difficult nights. Elise has been breathing on her own since Friday without too many "spells." A "spell" (from my limited understanding) is basically where her sats drop dramatically, which means there isn't enough oxygen in the blood. The drops also tend include respiratory rate drops and/or heart rate drops. And "spells" aren't a good thing. She's had them off and on since she was born so it isn't really anything new, though now it's a bit different since she's not on CPAP.

When we arrived yesterday afternoon, Elise had just finished a "spell" and she had a few more both before and after our visit. Last night she had another one while we were there. So the nurse told us that they were going to do a CBC (complete blood count) to rule out infection, though Ellie wasn't symptomatic of an infection, and that she might need to go back on CPAP.

Although we've been told a million times that she would probably need to go back on CPAP after a day or two of breathing on her own because she would get tired, it was heartbreaking to hear that it might actually happen. I held it together for most of our visit but started crying at the end of my kangaroo care time when Kit asked if I was ready to put her back. I kissed her little forehead repeatedly, knowing I probably wouldn't be able to do so for at least a few days if they did put her on CPAP. It was hard to put her back to bed, and I cried some more. I pulled myself together to leave the NICU. Her nurse, Deanna, said she'd call if they did put her back on CPAP.

We ran into one of our favorite nurses outside the elevator, and I started crying when she asked how Ellie was doing. She was reassuring and said that this is normal for the nurses but that it's hard for us parents. I cried much of the way home.

We didn't get a call saying she was back on CPAP, but I kept thinking maybe they just forgot. Kit called, at my request, this morning around 10 to check. They hadn't put her back on CPAP yet, but they still might do so. For now she's on a low-flow nasal cannula that isn't giving her any oxygen; it just blows room air into her nose (basically like someone blowing up your nose all the time).

We'll keep you posted and would appreciate your prayers. Although none of this is huge in the grand scheme of life, it's so hard as a parent to have your tiny little baby in the hospital and to see them bounce back and forth on their ability to maintain the different steps they have taken forward.

This was Kit's other birthday present (which luckily came on his birthday but which I didn't think would come on time). It's one of those little snuggly blankets kid's carry around with them. I had wanted for months to get Kit and Ellie matching Bears hats but couldn't ever find a baby hat that I liked.

I took multiple photos of Ellie's face last night in preparation for CPAP so that I could still see her beautiful face.

You can tell from this picture (or at least I can) how tired she is. Breathing is hard when you're so young and so little.

Here she is gazing out of her isolette.

This is today with her nasal cannula and her pacifier. She had her hands next to her face in the most adorable resting pose but moved them when I grabbed the camera.

All ready for bed.

From April 7, 2009

Last night I decided to make a video of Ellie's sweet face to give me something to watch in case she went back on CPAP as well.
Click on the picture above or the link below the picture to watch the video.