Sunday, November 9, 2008

Home Again

We made it home late Friday night with oxygen in tow.  I'm definitely grateful to be home to my boys and have Lilah back in her own bed, but really disappointed that she's still needing the O2.  Like last time, coming home makes our situation somehow more "real".  I felt like we had just barely gotten to a place where we were at least getting into a routine and now we have even more equipment and medicines.  That brings the grand total of daily medicines to 10, with half of those given twice a day and some extras on occasion.  Lilah's "equipment" includes and chest strap/electrode contraption for heartrate/apnea for when she's asleep, an O2 monitor around her foot, and oxygen in her nose hooked to this huge O2 generator.  All of these things (and mostly the O2) make it really hard to transport her from one place in the house to another.  One of the many things that weigh heavy on my heart right now is that she has hardly any 'baby time'.  I feel like it's one procedure after another.  She's doing pretty well, but seeing that oxygen in her nose makes her look so sick and absolutely breaks my heart. Pray, pray, pray that we can get her off of it soon!


notes from em said...

oh sweet Gina, and oh sweet lilah, and oh sweet burch boys.
i dont have any real words, other to encourage you to keep running the race, and keep fighting the good fight. you are an AMAZING mother and you and Paul are truly wonderful parents to both of your children.
May our heavenly Father hold you all fervently in His grip more and more with each passing day.
we are praying for blessings on your head, and a hope like you've never had before.
I love you.

Anonymous said...

I was thinking about you all the other morning and this Psalm came into my head. It is actually a song from a really old CD from Michael Card. May the sweet Lord comfort you with His promises to always be near to you and may you find refuge in Him.

from Psalm 64
God is our refuge and strength,
an ever-present help in trouble.

Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,

though its waters roar and foam
and the mountains quake with their surging.

There is a river whose streams make glad the city of God,
the holy place where the Most High dwells.

Jessica said...

Much love to you and your family, Gina. I pray for healing and strength for Lilah. xoxox

J. K. Jones said...

Much love to you and yours...

the Doirons said...

Paul and Gina, we are so glad we got to spend time with ya'll and play awhile with Lila and Garrett. We are so proud of you both for meeting this challenge and testing of your faith head-on with courage, steadfastness and honesty. I don't believe there is anything as difficult as having your child suffer this much without being able to provide the level of comfort you ache to provide. We pray that as God pours out his sufficient grace that His mercy and healing will cover Lila first and foremost, but extend to all of you... "For nothing is impossible with God". Luke 1:37
We hope to come again soon. Love and blessings.