Hard day

Today was a hard day for Skye. She's having a bit of a hard time getting the oxygen she needs and her gasses aren't looking very good.  That's all I know this evening.

In Mamma's arms!!!!

Coral got to hold Skye for the first time yesterday!!!!

Sunday, the tube in her stomach came out on it's own.  They wanted to watch her for a bit to see if she needed it back in, but I guess it was fine, since she got to be held for the first time on Monday at 25 days!

Nothing to note from today.

I will be sure to get pictures of the new snuggle time on Saturday!  :)

I also made it easier to post comments on the blog by taking off the "word verification".  Someone told me they were having trouble, so now it should be easier/work.   If you don't have an account you just put in your comment and click the "anonymous" ID, and then make sure to write your name in the commment box so I know who it is from! :)

23 days old!

Our visit today was filled with a bunch of good news!

1. She is breathing on her own, most of the time!!!!!  This is huge.  She is still on the ventilator, but it lets her breath as long as the number is above 45.  If it drops below that, then the machine does it for her.  This happens mostly when she is asleep, but when awake, she's doing it herself.

2. She is eating Mommy's milk!!! This is another big thing.  She is given a "tiny trickle" (1cc/hour) through a tube that goes through her nose.  Finally, she can actually get something real instead of just nutrients via IV!!

She still has a tube draining fluid out of her abdomen from the surgery.  When that is gone, she can be held.   I think that is the next big stage!

Here are pictures from our visit today!

Daddy's back!

Slow & Steady....

Not much to report other than that they are slowly decreasing the medications and oxygen, not too fast, and she is handling it well!

We plan to visit again on Saturday!

Off Oscillator!!!

The Oscillator is the "new breathing" machine that I talked about in the last post; and she is off it and doing great!!

She's back on the ventilator, which is the "old breathing machine" that I talked about before.

It's progress; slow and steady is what we like!!!

And, Ethan is coming back this weekend for an extened length of time!!!

16 days old and best yet!!!

Skye gave us a scare yesterday, but she is stable again and as best as she has been yet!! Praise God.

So, she had successful surgery on Tuesday (intestines, stomach & spleen moved back to abdomen & diaphragm patched), came off ECMO on Wednesday and had a good Thursday.  On Friday they started removing the meds she was on and her body did not like the idea. 

She started having a really hard time breathing and the gasses in her abdomen were not helping or contributing to it.  They had the current breathing machine maxed out, but there was a different breathing machine that puts the oxygen in harder and faster.  This has worked!!!  So, she is currently on this new machine (not maxed out) and the meds are up again. I think they are going to try a slower approach and when she can come off this new machine, a lot more progress can be made.  But, the nurse today said that she is stable and doing well.  We hope to have gradually increases and if any only slight set backs, not huge up and downs, like yesterday! She is not a candidate to go back on ECMO, so let's pray that it doesn't go back that far.

I went down and spent some time with Coral and Skye.  Skye was awake!  We spent about an hour+ in her room, then went and got coffee at Starbucks on the first floor and then spent another 1/2 hour+ with Skye again before we both left for the double birthday party at my parents.  I think Coral had a good time and appreciated all the kindness from all of you that were there.  She is feeling the love!!

Here are the pictures from today; 16 days!

Look at her holding on to Mommy's finger!!

Set back

Skye has been doing really well up until mid day today.  At some point today she started having problems with her breathing.  They switched her breathing machine late this afternoon around 3:30.  Then at about 6:30pm I got a text from Coral that said she is having a really hard time with her lungs and they are trying everything they can to help her. They are worried about her.  Please pray for her! 

She said she didn't need me to come down tonight, but I told her to contact me day or night if/when she needs me, so please pray that she will do that if it ever comes to that.