Still Here - Lucy Lu Lu Update

Lucy has done so well here in the hospital and finally has been able to tolerate a sustainable amount of continuous formula.  That, along with pain control, has been our main goal, and we met it!  Pain has also been at a minimum, which is an incredible blessing.  Thanks to all who prayed specifically for Lucy's pain to be eliminated! Her energy even peaked and our little Sprite was back this afternoon, enjoying having her hair brushed, putting on "lipstick" (chapstick), putting on a new nightgown, etc.  It's been SO good to see Our Girl so happy!  

Daddy and Lucy in the ER

Feeling Better! 

The doctors were set to send us home today because of, well everything I listed above.  They felt like we could manage her feeds and pain at home since she is so much better.  But then, all-of-a-sudden (literally), Lucy had a huge blow-out.  It was a sickly one, you guys - where you know something is going on in her little body.  BOOM.  Everything changed.  

Right after her bad diaper, Lucy acted a bit lethargic and she wanted to sleep in the hospital bed, which is very rare (she and EK have always seen them as toys to hit and kick).  We noticed Lucy was in a full-body seizure, which hasn't happened in a long time.  Then she was shaking and shivering, as she had a high fever.  She didn't at that time, but it rose very quickly and once again, we are at a loss as to what it is that's she's fighting. 


 Is it a virus?  Is this part of why her gut wasn't working?  Is her port infected?  So many possibilities and so many questions.  I'm sure I'm driving the nurses and doctors nuts in asking them about all the blood work and when we will get results to show if there indeed is an infection somewhere.  Overall, it will take about 24hrs for us to fully know what is going on.


Lucy rarely runs fever, even when she is very sick.  Her fever and lethargy combined with the seizures, have us quite worried.  Obviously, we are overly worried for our girl bc of our history and bc of the earthly loss of Ellie Kate.  Would you pray for all of those bad things to stay away from Lu Lu?  Would you also pray that we would have peace and wisdom?


We've been blessed with several visits from our dearest of friends, and we are just so grateful.  They've brought us our favorite gifts and have sat with us and calmed our fears, taking our minds off of sickness.  Lucy is now on contact precautions though, so visiting isn't encouraged.  If you'd like to see us or have something to drop off, you can do so by going to the nurses' station on the 8th floor.  They will make sure we get all messages.  

Silly Daddy, Yummy Food

Contact Precautions

Many people have offered to  help with specific things like laundry, cleaning, etc.  This is incredibly humbling.  With so many sweet ones wanting to help, I've made a list of things/needs on my FB page.  You can find it there, if you'd like and if not, that is TOTALLY FINE.


Other ways to pray: 
*Conner and Henry - pray for peace and a sense of security as we are away
*Mike - pray for Mike as he continues to go to work and balance hospital life
*Pray for me IC which is in a terrible flare, causing some of the worst pain I've had
*Pray for grandparents as they help and assist with the boys and with our home


It's always interesting to see who first jumps in to help or contacts you, wanting to help.  As usual, those dear ones that do are also going through tough things, or have in the past, and yet they still give of themselves and recklessly love us in tangible ways.  It blows my mind to see certain people do this time and time again.  Faithful friends - you've shown us the faithfulness of the Father. THANK YOU for running to us in our time of need, especially since we haven't been in this type of "need" in over a year.  


With Hope,

Ryan