"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Saturday, August 28, 2010

Why I'm Typing a Post at 3:00 am

Marissa and I are at her sleep study and she is sleeping but I am not. I fell asleep about 12:30 and woke up at about 3:00 because the tech came in to put her nasal cannula back in. It woke her up and she was scared and crying, so I had to stand by her crib and comfort her back to sleep.


Therein lies the problem.

The crib only has two levels for the railing to be at. Really low and really high. Marissa is normally good about not falling out of bed, but if she is disoriented and scared, like tonight, she might not be so good. So the rail needs to be up higher. She is much more sensitive here than at home, in a scary place, with probes all over her and a nasal cannula. Understandable. When she needs to be comforted, she likes my hand on her chest or side. I am not tall enough to reach her over the rail when it is in it's high position. I can't reach her through the bars. When the metal crib rail is slid up and down, it makes squeaking and locking sounds. Which wakes her up. Which requires me to get up and comfort her back to sleep. But I am not tall enough to reach her over the rail and I can't reach her through the bars. So I have to lower the rail, comfort her back to sleep, and put the rail back up. Which makes squeaking and locking sounds. Which wakes her up. Which requires me to get up and comfort her back to sleep. But I am not tall enough....

I think you get the point.

So I had the bright idea to pull a chair up beside her crib, stand on it, and comfort her over the rail. This way, there is no sound of the rail sliding and locking into place because I don't have to lower it. Brilliant!

Except...

The tech saw me through the night camera and came in and told me it was a liability for me to be standing on a chair. Which I completely, 100% understand. In fact, I knew it was not going to be an acceptable solution as soon as I came up with it. But I had to try something.

Now she is asleep, the tech came in and raised the rail back up, which did not wake her up. Halleluia!!

But, I am awake now and it is pointless for me to try to go back to sleep because the tech said he will be waking us up at 5:00. Which is in a mere hour and 15 minutes. By the time I got to sleep, it would be time to wake up. Boo.

Oh well. This isn't about my sleep, it's about Rissa's. And she is sleeping pretty well, so it's all good.

I can always take a nap. Or two. Or seven.

**UPDATE**

It is 6:30 am and we are back home. I am about to go take my first nap of the day, but I wanted to give you all a little info on the how the night went, test-wise.

I asked the tech for his opinion of the preliminary results, assuring him that I fully understood that it is not official until the report goes up the chain of command and the doctor tells us what's up. He said that her CO2 levels looked really good, as well as her pulse-ox levels. He did say that she had a few, very brief periods of apnea throughout the night, but that is not uncommon with trach kids. She slept really well, going in and out of the different stages of sleep appropriately.

Of course, we will wait for the official word before we get too excited but, all in all, it was a successful night!

Goodnight for now...

Wednesday, August 25, 2010

Wordless Wednesday











Thursday, August 19, 2010

Layin' Low

Hey all, sorry for my absence in Blogland as well as Facebook. We have just been laying low in preparation for a very busy September and October. Nothing much has been happening here, just enjoying the last of our Summer.

We will be on a "Staycation" the first week of September when Jeremy's mom comes from Utah to visit. Jeremy is taking the week off so he can fully enjoy time with his Mama, as we have not seen her in over two years. We don't have any plans to go anywhere, and we like it that way. We are just planning on soaking up lots of Grandma Utah time.

Also, starting September 13, I will be embarking on a new and exciting adventure. I am going to be taking care of my friend's three month old baby boy during the day when she returns to work. It will be challenging and fun, and it will test the waters for Marissa and us to see if another little one is in our future. I am really looking forward to having a little one in the house again!

Marissa has a sleep study on August 27th. If all goes well with that, which we fully expect it to, we will be setting a date in September to have Marissa's trach finally taken out for good. We are cautiously optimistic that things will move forward in the right direction. If she is able to get her trach out, we will be enrolling her in school starting in October. Lots of big and exciting stuff happening for our little girl in the next few months!

We were happy to have a visit last weekend from my Dad and Step-mom, Marissa's Bubby and Zeyda (Yiddish for Grandma and Grandpa). We hadn't seen them in two years and Marissa really enjoyed all the extra attention! Here are a few pictures and a video of their visit:


Rissa telling Zeyda stories


Auntie Chelle and Bubby looking at wedding dresses for a June or October 2011 wedding. How exciting!

Uncle Nate staying out of the wedding dress debate. Smart man!

Zeyda, Rissa, and Daddy having a little fun during "quiet time". HA! You can hear the squeak I am always referring to when Rissa inhales after each laugh.
video

I'll try not to take such a long break in blogging in the future. Thanks for checking in!

Thursday, August 5, 2010

Lookin' Back...

... on the memory of

the dance we shared

'neath the stars above...