Thursday, January 22, 2009

The update is that we are still in the hospital with Lilah, but she was moved from ICU to a regular room this afternoon.  Her fever (which had been very high for days) is gone and she is starting to get some Pedialyte through her new feeding tube.  She came through both the scheduled and the "redo" surgery very, very well and was able to be take off the ventilator more quickly than we had even hoped.  Even her doctors seemed pleasantly surprised at her strength.  She will start to get formula through her feeding tube tomorrow, and as those tolerated, her IV nutrition can be stopped and the huge central line in her neck can be removed.  They are closely watching her lungs and her blood counts....and we are hoping to be home this weekend?!

We are very thankful that it has gone well (for the most part), but very weary of long days in the hospital, being separated from each other, and just the continuing enormity of our situation. We've spent 1/4 of the last 4 months at Children's Hospital and our house looks like the ICU.  Home health came today to teach me how to use and care for her feeding pump and tube.  The very hardest days for me are always when we get new medical equipment and then bring her home from the hospital.  It's a mix of total exhaustion and sheer panic, as in "how in the @#$* am I going to be able to do all this?"  I know other families do it, but don't know how.  I can't hardly imagine that things will ever level off to normal, and the honest truth is I don't want any of this to be normal for us.

We have come to the conclusion that the whole 'God does not give us more than we can handle' is not applicable here.  I have so long ago passed the point of what I can handle, that I can't even remember where it was.  Clearly, the Lord has given us far more than we can manage alone--so that we will rely on Him.  Thankfully, He continues to sustain us through each day.  

I keep forgetting my camera, but Lilah looks well-pale and with 6 million wires/bandages (actually, 15), but good considering all she's been through.  Despite valiant attempts by all her caregivers, she is not giving up any smiles yet!  Thanks to her Dad's persistent insistence :), her pain is well managed and she is resting an angel.


Elizabeth Myatt said...

I love your words here... such sheer honesty. Wish I could come and sit with you. Thanks again for allowing us all a glimpse of what is deep inside you. I am changed because of it.

Marisa said...

Know we are praying for y'all and sweet Lilah! I do hope you get to come home this weekend and that somehow all the new regimen isn't overwhelming.
We love you! Marisa

Holly G said...

thanks for your honesty....indeed your burden is beyond human capacity. my prayers are for you all. i love the burches!

notes of em said...

I thank you for your desire to share what God is taking you through now. Thank you for your bravery.
And PTL that you all are coming home tomorrow!

Jessica said...

Hope that you are home with your family entact for your birthday. xoxo Jess