Wednesday, April 8, 2009

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.


Rachel said...

We will continue praying for yall!! I am sure it is so hard to ride the roller coaster - just know so many are praying!!!

Heather and Travis said...

I will be praying for you guys. CPAP might not be big in the grand scheme of things, but it certainly is big when you are living it day to day. Morgan Kate had to go back and forth several times. It absolutely broke my heart!

Ellie is growing, growing, growing and that will help with so many things!

Amanda said...

You're right, in the grand scheme of things going back on the CPAP is minor. But that still doesn't make it any easier to take now. Cadence was back and forth on the CPAP and stayed on it for a very long time. They told us she would be going home on oxygen and she had chronic lung disease, yada yada yada. She was off the nasal canula and breathing room air on her own a week or two before she came home and has had stellar lungs ever since. It's a rough roller coaster ride though. Still praying!

Stephanie said...

I'm new here...I saw your comment over on Morgan kate's blog. Your daughter is absolutely adorable!!!! Just want you to know that I will be praying for your little's awesome that she's putting on weight...that will help her to continue getting stronger as each day goes by.

Keeping you in my thoughts :)

Jennifer said...

You guys just keep trucking along and we'll keep praying! Everything is a big deal when it's *your* baby you're watching hurting or in need....even when it's something like a scraped knee when she's older. That's what love is all about! Love the updates, I check everyday!

Our growing family said...

i will be praying!
email if i can help at all!!

Melissa Nickerson said...

Praying for you all & much love!

alexandrea said...

I am so sorry you are having to go through with this. It is def a roller coaster. My little lexi came out breathing on her own and did not go on oxygen until about 2 weeks later. We also ended up coming home on oxygen
the most impoetant thing right now is htat she is eating well and growing.

Becca Sue Congdon said...


I'm so proud of you guys for trusting in the Lord during this difficult time. I can only imagine how heart-wrenching it must be to have to leave Ellie in someone else's hands in this season. I rejoice with you in her progress and look forward to the day when she comes home with you guys for good!

April Bryant said...

Hi Emily,

My son Stetson was born 2 months early weight 3.13 lbs and got down to 3.6 lbs. I have been following your story for a while now, and to read your words brings back such raw feelings. The roller coaster of the NICU. Stetson spent 7 weeks there and the first few weeks I cried every time I had to leave to go back home without my baby. Emily your emotions are so normal, Stetson was doing great feeding well and everything then he got Cronic Lung Disease which it not as bad as it sounds they grow out of it, but the odd thing was that it normaly happens to them when they are smaller at this point Stetson's weight was really good. So this set us back on his feeding from the bottle. So I know how you are feeling and turely only someone who has been through the NICU roller coaster knows this feeling and I do not wish it upon anyone. so just know that your emotions and feelings a normal. Keep your head up, girls seem to be stronger than boys when they have to go through something like this. Hang in there time flys, Stetson is going to be 2 in July and you would never know he was so little. We did come home on O2 and a heart monitor. Oh and he was the biggest one in the NICU when we got released.

April Swarthout

Martha said...

Hi Kit and Emily--
Still thinking of you and praying every day for baby Ellie. She is so beautiful, and it's just a matter of time before you get to take that gorgeous girl home with you.
Please let me know if there's anything we can do for you. I would love to come see you for a visit.