Monday, February 27, 2012

oh my. has been anything but boring around here the last few days.  by the way, i LIKE boring.  miss shilo has continue to desat as sedation meds wear off.  i have continued to ask why we can't be on a drop so she is getting the meds all the time instead of letting them wear off.  last night won 'the scariest moment i have ever experienced' award, and mama being a LOT more assertive at rounds this morning.
shilo is extremely positive right now (taking in much more liquid than she is peeing out).  she is swollen.  last night though, she was swollen beyond recognition.  at 2:30 i roused to the nurse in the room, and then all the alarms and bells started sounding.  i sleepily sat up and tried to focus at the screen.  the sat numbers were dropping, but not anything i hadn't seen before.  until they hit single digits.  she was blue/grey, swollen, and surrounded by nurses, doctors, and respiratory therapist trying to bring her out of it.  it took nearly two hours to stabilize her.  mama really thought that she might lose her little peanut.
so at rounds this morning i said please move her from meds every four hours that are wearing off and causing her to have scary episodes to a continuous drip.  they did.  and since then she has been sleepy enough that even when the nurse does vitals her sats haven't dropped at all.  the nurse was even able to wipe off her face without her so much as noticing.
we seem to really be at our worse right now, the virus being exacerbated by the aspiration of vomit when intubated.  really, it can only get better from here.  and that is what we are going to believe and pray for now. 
in the mean time, mama hasn't had lots to do.  so i made some bows with a friend who also has a little girl here, and have been enjoying some cuteness on my little instead of just tubes and wires everywhere.

last night (notice the swollen eyes)

this morning (still swollen, but much better) with some awesome hair!

thanks all for loving us and sending such amazing and good thoughts.  please keep praying for our little.  i miss her.


  1. I really wish there was something I could say to help ease your fears and how I really wish there was something I could do to make Shilo all better. All I can do is pray for her and you and the medical staff taking care of her. Make sure they take of you too. Please ask someone to stay at the hospital to take care of Shilo and someone to take care of Abigail so you can go home and crash out for a few hours. After getting some sleep, take a nice long hot shower and eat something to nurture your body. Remember that if you do not take care of you, you will NOT be at your best to take care of Shilo. She needs you to be the best you you can be.

  2. I'm praying that the virus will get weaker and Shilo will get stonger.

  3. The Good Lord made Shilo as strong as she is beautiful! Keeping your sweet little and her family in prayer. I can't wait for the post that happily announces "we are home!!"....well, I'm sure you two can't wait either. Till then, continue to heal and continue to stay strong.

  4. PRAYING for your tiny blessing!! Go momma, Go!! We have to fight for our little ones. Sometimes momma bear just needs to show her face.:) Please, let me know if there are any questions I can help you with. We have 2 treasures with DS, both adopted. Our youngest, Celia, just turned 1 and has been off NG tube for about 4 weeks. They both had cardiac repairs, too- Celia's being more complex.
    Praying for peace and healing for precious Shilo.
    In Him,

  5. Continued prayers for you and your precious peanut as well as your hubby and daughter at home..I have been where you are and it is hard but God is so in all of this..HE will never leave you or forsake you. I was told when my little one was intubated and on sedation drugs, pain meds, etc..that children with DS respond they switched her drugs and that made all the difference...not sure what we switched to because those days in ICU are a blur but it helped tremendously..much love and prayers

  6. Continued prayers and sending hugs your way.