Monday, December 3, 2007

A Little Sanity

When we went to bed last night, Nicole and I were so exhausted from the setbacks and frustrations of the previous two days. We needed something to lift us up. We needed 24 hours without a crisis. Twenty-Four hours later, we are almost ready to exhale a little bit. Evie has made good progress. Her blood pressure has remained very good--to the point that she is on a minimal dosage of medication. With that the care team has been able to drain off much of her excess fluid. Though I hate to say it about my beautiful baby girl, her appearance since the surgeries has been grotesque due to the puffiness, paleness, and the extensive machinery that supplies her life. Now that she's down over 600ml and has some pinkness back to her complexion, she's beginning to resemble herself again. So a whole day without crisis and a notable improvement to her appearance has been a big lift to Nicole and I. More importantly, this is good for Evie. We will never be able to attempt to wean her off ECMO without draining her fluids and stabilizing her blood pressure. We're now well on the path to doing that, but do note my word attempt. There is little way to predict if and how well she will be able to come off the machine. Only time will tell.

I know that many of our close friends who are far away feel helpless right now as they are not able to be with us. We want you to know that though separated by distance, your prayers and encouragement have helped. We also are very moved by the kindness of our local community; the seminary, university, and our friends here in Chicago. I am told that frequent evening prayer services have been held at North Park to remember Evie. Students and staff gathered to pray through the Psalms. I cannot think of anything more appropriate. Just as our family has experienced the gambit of emotions; elation, betrayal, gratitude, and anger... so do the Psalms reflect the full range of our human experience. We offer to God thanks for the blessings we are visited, but we also offer to God our desperate and furious laments. God is big enough to take what we have. We have been reminded of what the Apostle Paul says, that when we feel like we cannot pray the Spirit intercedes for us. Additionally helpful was the reminder from a friend last night that even the Lord Jesus felt abandonment, sadness, and anger and it was not at all wrong of him to do so.

Many people have demonstrated and pledged their desire to be a real tangible help to us. We've been blessed by deliveries of clean laundry and snacks, comforted by the company of visitors, and gladdened by many other genuine caring efforts. Some have approached us about wanting to contribute some way to help us with the expenses of medical care. A few individuals are currently working on setting up a fund, so if you are interested you can email me and I will hopefully soon be able to point you in the right direction.

If Evie is to ever leave this hospital, there is still a long road ahead of us. For now we are grateful for a boost of strength to get us through another day. We have no other choice but to press on and fight for Evie as long as she has fight in her.

8 comments:

Anonymous said...

Dear Matt, Nicole and Evie,
How glad we are!!!! We shall rejoice in the good news of the day and press on hard in prayer knowing that our God is a Good God full of compassion and Love and mighty mighty power to heal! We gather at the Sem Chapel each night at 8 and have moved to praying through the book of John. We love you so dearly,
God be with you this day,

Anonymous said...

Hallelujah! We breathe with you and continue to pray for that day when you will again delight in the hands-on daily care and cuddling of your lovely daughter.

Laura said...

PRAISE GOD for your good news! I am so glad to read about your encouragement. The prayers will continue, as God watches over you all.

Laura

Sue Gost said...

Dear Matt and Nicole, My daughter Jenni and I have been checking your site and praying for you and Evie and her caregivers at Childrens. Four years ago we experienced a similar crisis with my granddaughter Grace. She was born with severe pulmonary issues and spent the first 17 days of her life on ECMO at Lutheran General. I know it is such a frightening experience to see your beautiful little baby hooked up to that machinery, but we wanted you to know that there can be light at the end of the tunnel. After removing more fluid than I thought could be possible, they were able to stablize Grace and get her off ECMO. She is now 4 years old and doing well.Your faith is an inspiration and we will all continue to support your family in prayer and to be so thankful for such technology that makes it possible to help these little ones. God Bless You all.
Sue Gost

Sue Gost said...

Dear Matt and Nicole, My daughter Jenni and I have been checking your site and praying for you and Evie and her caregivers at Childrens. Four years ago we experienced a similar crisis with my granddaughter Grace. She was born with severe pulmonary issues and spent the first 17 days of her life on ECMO at Lutheran General. I know it is such a frightening experience to see your beautiful little baby hooked up to that machinery, but we wanted you to know that there can be light at the end of the tunnel. After removing more fluid than I thought could be possible, they were able to stablize Grace and get her off ECMO. She is now 4 years old and doing well.Your faith is an inspiration and we will all continue to support your family in prayer and to be so thankful for such technology that makes it possible to help these little ones. God Bless You all.
Sue Gost

Becky said...

I'm so glad to hear that you are encouraged by Evie's progress. We have been thinking of and praying for you constantly, and will continue to do so.

-Becky & Ryan

Anonymous said...

We are still praying - so glad to hear your encouraging news. Kris and Jim Bruckner

Anonymous said...

Dear Matt and Nicole and Evie and family
You remain in our thoughts and prayers daily. Many prayers go up on your behalf in Kent.
Krisann and Dave