One Week Later...

Today marks one week since Evelyn started crashing and was admitted to the PICU. While the cause remains a mystery (and may forever) I now have a completely different baby!

Yesterday we were moved out of the ICU and into a recovery room. Actually these rooms are more like suites if you ask me. I've never seen such spacious hospital rooms (with showers!). It's been nice considering I've been here every night.

Now that we are in recovery the care of my daughter is falling back on me. Feeding, bathing and changing. It's really nice because it makes me feel like I have a hand in her well being again. She is eating well for someone who hasn't eaten in a week. Unfortunately, they are not letting me nurse her because the doctor decided they want to monitor how much she is eating. So, I am pumping and bottle feeding. Hopefully if she demonstrates she is eating well we will go back to breast feeding in a few days. I may just make that decision on my own :)

Brandon went back to work today.  He will be off tomorrow and then work through the holiday weekend (we hope).  While he is off, I'm going to try and get some work done tomorrow.  I am thankful the Lord is allowing us to keep up a little so things don't get too out of control.

Meanwhile, I am holding Evelyn a lot.  She is going through pretty severe withdrawal from the narcotics she was on over the last week.  Mostly it is showing up in a lot of shaking and jitters.  I think it may get worse before it gets better and the doctor said some residual effects could last anywhere from a few weeks to a few months.  Hopefully it will be on the shorter end!  She seems so resilient and thankfully, is not complaining yet.  Just shaking.

We are optimistic that we may be able to go home over the weekend once she finishes her antibiotics, demonstrates she is eating well and gaining weight!  We'll see.  I am content to be able to hold her again, no matter where we are.  Elisa sure would like to have us home though!

A New Day

Ps. 118:24

This is the day that the Lord has made, we will rejoice and be glad in it.  

Monday brings no news in terms of Evelyn's diagnosis.  However, we are rejoicing that her vitals continue to improve.  So much so that right now, we are waiting for her to wake up so they can take her off the ventilator!  They will also take the catheter out today and by this evening I should be able to try and nurse her again.

Don't ask me how that's going to work.  She still has lines in her chest and belly button and lots of monitor leads all over her.  I imagine that nursing will create a lot of beeping noises in our room. 

Please continue to remember our family before the Lord.  We have a long week ahead of us.

As of Saturday Morning...

Yesterday was an encouraging day going into the weekend.  One big relief is that Evelyn's blood pressure has been in the normal range and the results of her second heart echo confirm that her heart is beginning to function stronger and normally.  Additionally her kidney ultrasound showed no abnormalities.  

Every single test they have run has come back within normal ranges.  She shows no signs of infections or typical abnormalities.  Regardless, she is improving dramatically.  We are so thankful for her obvious resilience.  As organ defects or failure and infections are seemingly being ruled out, the Doctors are leaning towards metabolic/genetic problems and have ordered many more specific blood tests.

Yesterday they gave her a more complex IV with simple protein.  Today they will continue to decrease her phentenol (?) and other medicines that are keeping her sedated.  She has obvious periods already where she is "awake" i.e. responsive to touch and sound and tries to open her eyes a little.

Please pray for me as I am having a very hard time with the idea of her waking up.  It is so hard to even see her like this and I really need more strength to deal with knowing she may be aware of all the needles and tubes in her.  Throughout the morning, a little toddler a few doors down from us, who I have heard wimpering off and on the last few days, is alert and crying in obvious pain and confusion.  It is truly unbearable and not even my own baby.  There is so much heartbreak and sadness here.

Before I started this post, I sat down and read all the posts on other blogs where so many of you have notified your own friends and family of our situation.  I am sure it may be redundant to some who read a lot of these blogs, but I want you all to know how encouraging it was to me to know that you are soliciting prayer on our behalf.  We need every one.  The doctors are amazed by how quickly she is bouncing back in so many areas.  Regardless, they still need wisdom to figure out why this happened so it doesn't happen again.

However, things slow down here on the weekend.  We will most likely continue to wonder a lot of things until Monday.  Please pray that fear of the unknown will not become overwhelming.  Pray also that we will get rest and know how best to balance our time as parents of children in two different worlds right now.

Introducing Baby Evelyn, in the ICU

I think most of you know little Cassondra Evelyn joined our family on the 12th!  I've been so busy with newborn stuff (and work) since then I haven't updated this blog with any cute pictures, even though I've wanted to.  

Of course, my plans are not the Lord's plans.  Most of you probably know by now that we were admitted to the Pediatric ICU on Wednesday.  So here is the first picture of Evelyn on my blog.

 

All those scary cords and tubes consist of: lots of monitors, a central line IV, a breathing tube, oxygen, blood pressure cuff, catheter and some sort of a tap in her belly button.

I wish I could communicate how much better she looks!  We brought her into the ER dehydrated and in shock.  She crashed so fast that by the time she was admitted to the ICU they were truly afraid for her.  Now she is very stable.

Unfortunately, we don't know what has gone wrong.  Over the first 24 hours the doctors have run a battery of blood, urine and spinal fluid tests.  She has also received lots of x rays, a kidney ultrasound and is preparing for her second heart echo.  They believe she is probably septic and her heart is malfunctioning as well, although the cardiologist is hopeful that is a symptom and not a cause.

Between now and Monday, test results should start coming back that will hopefully guide the doctors in a more definitive direction eventually leading us to a prognosis and treatment plan. We anticipate being in the hospital for a while, although hopefully not in the ICU.

Thank you so much for your prayers.  We need them all!