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LATEST UPDATE ON NICOLE GRACE

Posted by: lifeunlimited <lifeunlimited@...>

Dear Friends, Family, and Fellow Intercessors:
 
Wednesday morning bright and early we leave beautiful Interlaken, Switzerland, and head back to Kiev to resume our daily ministry after this much-needed respite at the IBC Bible conference and then four extra days of vacation.  We simply didn't realize how weary we were until we began to "unwind" around the second day of the conference.  So, thanks for praying for us along the way as you've been praying for Jim, Deanna, Nicole Grace, and the rest of the family.
 
Rather than take extra space trying to write a digest, and because so many have expressed appreciation for being able to "hear in their own words" what Jim and Deanna are saying and thinking, we're just going to let you "hear" excerpts from their latest four letters, written Saturday, Sunday, and Monday.
 
However, doing it this way will necessitate you going through and highlighting the special prayer requests.  But, as always, we continue asking that you pray for a complete reversal of all Nicole's physical and mental deficiencies.  Go back to our earlier letters, especially the ones on faith and the four ingredients of prayer (praise, blessing, warfare, intercession).  These really create the foundation for bold, courageous, militant, authoritative, faith-filled, helpless intercession.
 
Based on that type of confidence, here is . . . . .
 
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Letter from Deanna on July 10th.
 
One month old today!  Yeah! 
 
First we must make a correction for those of you who receive my dad's updates.  The survival rate for trisomy 18 babies for the first month is 50-70% (my Dad had the non-survival 30-50% rate).  Nonetheless, today was an awesome milestone.  (She is officially "beating the odds.")  The next "statistic" to beat is the low 10% survival rate at 1 year.
 
We also got further clarification today on a likely time frame for going home.  It will likely be 4-6 weeks, not 2-3.  She has to have a "G-button" put in for feeding purposes and that is normally a 4-6 week process.  Basically, they first put in a G-tube and later a G-button.  They rarely send them home before the G-button is in.  Also, she has to gain weight and sustain it - she was back down again today and is still hovering around birth-weight.
 
Other than that, she had a great day.  We got to hold her, change diapers (our nurse always asks us if we "want" to change her diaper - it's not really a question, just a polite suggestion), sing to her, pray over her, etc.  She really is a cutie! You should come and see her sometime (Hint!).
 
Along with praying for all the specifics we've mentioned before (including fervent prayer for her to gain weight), pray for us as we make the transition in the next couple of weeks to bring Michael and JoyLinn down here to stay with us.  Now that Deanna is almost back to full strength, she can handle them on her own when needed so we can
alternate times at the hospital with Nicole and at the RMH with the other two.  Due to it being another 4-6 weeks, we just feel like we need to have our kids with us even if it is a little inconvenient and not home.   If her stay ends up even longer than currently expected and goes into the start of school, then we'll have to make another adjustment with one of us in La Grange and one down here in St. Louis. Prayerfully, THAT won't become an issue.
 
WWJ,
 
Jim and Deanna
-----------------------
 
Letter from Jim on July 10th.  I included it in Monday's "Shoulder To Shoulder", so if you're on that list, just skip down to the next letter.
 
Today was a powerful day for me.  For about 24 hours, starting yesterday afternoon, I was not doing well.  I was angry.  I wanted to whine and complain and shake my fist at God.  And, taking the advice I've given many times, I did just that . . . . quite a bit of it . . . . privately just me and God.  I hurt ---- physically, from too many nights in a different bed and too many days in uncomfortable chairs; emotionally, from too many days away from my children, away from my "work" and the "extended family" of the church. 
 
I threw myself a good ol' fashioned "pity party."  I didn't want to be here anymore.  I didn't want to have God using this situation.  I didn't care about His Kingdom.  I didn't want to be an "inspiration" to anyone.  I just wanted my baby . . . . and I wanted my family ----- together . . . . and I wanted my church family and my ministry.  I wanted normal.
 
And then, today, at lunch, I made a conscious decision . . . .  Enough!  This is not doing anyone any good.  You're getting bogged down in the swirl of possibilities and plans and wishes, and you're seizing up. 
 
I got out a sheet of paper and simply began writing issues ---- things we need to think about and make decisions on in the near future.  Though every one of the decisions on that page are major, life-changing ones, they barely filled a 4x6 sheet of paper ---- and they looked a lot less foreboding.
Enough.  Time to bear down.  At the time, it wasn't even all that "spiritual" of a decision.  It wasn't a conscious "trust" in God.  It was simply doing what must be done.
 
But, later, in the room, it continued.  I prayed over my baby.  I hummed "Count Your Blessings" ---- and felt it's power.  I sang "My All In All" by Dennis Jernigan (I'll quote it for all of you at the end) and it powerfully refocused my heart.
 
Then I opened God's Word . . . . and our Lord began to speak:  (For all you "purists," I KNOW I'm taking some of this "out of context," but it was God's Word to me . . . . right now.)
 
Isa. 28:5-6 - "In that day, the Lord Almighty will be a glorious crown, a beautiful wreath . . . .a source of strength to those who turn back the battle at the gate."
 
The "gate" would be the last possible moment to "turn a battle."  Once the gates were breached, the enemy forces can pour in and cause all the destruction they desire.  Not to be melodramatic, but that's KIND OF what happened this afternoon.  Enough.  This is not doing anyone any good.  Do what must be done.  Turn back the enemy . . . . even if he's already at the gate. 
 
I had, briefly, given up on God. given up and given in . . . . to pity, apathy, who knows?  (Anyone else with me?)  The enemy was at my gate - and I found it wasn't too late.  God PROMISES to be YOUR Strength IF you will turn the battle. even at the gate.  
 
Isa. 30:10-11 - "They say to the seers, 'See no more visions!' and to the prophets, 'Give us no more visions of what is right!  Tell us pleasant things, prophesy illusions, Leave this way, get off this path, and stop confronting us with the Holy One of Israel.'  
 
. . . This IS God's plan right now.  Can I wish things were different?  Certainly.  David did ---- Read the Psalms!  Can I even wish He would stop using me?  Yes ---- See Elijah.) But to do so is to get off His path.  
 
Here's the beautiful kicker:  Isa. 30:15a - "This is what the Sovereign Lord says, 'In repentance and rest is your salvation, In quietness and trust is your strength.'  One of my all time favorite verses. so comforting . . . . so powerful . . . . and simple.  But it comes with a choice.  Isa. 30:15b - "but you would have none of it."
 
It's my choice . . . . just like this afternoon at lunch. It's my choice to be on His path . . . . to be used in his Kingdom . . . . to receive His rest, His salvation, His quietness, His Strength. 
 
And when we do . . . . Isa. 30:19-21 - "O people of Zion. How gracious He will be when you cry for help!  As soon as He hears, He will answer you.  Although the Lord
gives you the bread of adversity. whether you turn to the right or to the left, your ears will hear a voice behind you, saying, 'This is the way; walk in it'."
 
Thanks for listening; without a pulpit, without a congregation, without a "visible" ministry, "cyberspace" will have to do.
 
Jim
My All In All by Dennis Jernigan
 
You are my strength when I am weak
You are the treasure that I seek
You are my All in All.
 
Seeking You as a precious jewel,
Lord, to give up I'd be a fool,
You are my All in All.
 
Jesus, Lamb of God, worthy is Your Name.
Jesus, Lamb of God, worthy is Your Name.
 
Taking my sin, my cross, my shame,
Rising again, I bless Your Name.
You are my All in All.
 
When I fall down You pick me up,
When I am dry You fill my cup,
You are my All in All.
 
Jesus, Lamb of God, worthy is Your Name.
Jesus, Lamb of God, worthy is Your Name.

 
-------------------------
 
Letter from Deanna on Sunday, July 11th.
 
We had a great day today.
 
We left at 6:30 this morning and drove home to surprise not only our kids, but our church family as well.  Deanna got to sing in the Patriotic Cantata with the choir and Jim got to hold everybody late and preach a short sermon.  It was wonderful to be home among family - but of course, twice as hard to leave again. 
 
Actually, it was the first time we (especially myself) had really listened to music and the first time I had sung, other than to Nicole in the ICU, since the day she was born.  Not that I "couldn't" sing or had no song in my heart.  Actually, there is usually one of three songs that runs through my mind almost constantly, even when asleep.  I just hadn't done it.  But today on the drive home to la Grange we had a CD of worship music playing.  I can only say that most of the songs we listened to and I sang along with . . . took on a much deeper meaning ---- deeper and applicable in new ways.
 
We stopped by the hospital . . . to see our little one.  She had a great day and has gained a little weight . . .  She was resting very peacefully, and we are tired (Deanna trying to get rid of a migraine), so we stayed a short time, kissed her little head (smaller than a softball), prayed over her and headed out for hopefully a better night sleep than the past 2.  The a/c in our apartment at the RMH went out yesterday and won't be fixed till tomorrow . . .  

Since there's not a lot to report, I thought I'd share what I've been reading and been reminded of lately.  Mind you, it's not a sermonette (Baptist women don't preach . . . . yeah, right), but just a few thoughts.
 
I've been reading in Job . . . . always been a bit confusing to read.  A lot of the statements that Job AND his "friends" make sound pretty good and deserving of an "Amen" ---- but then once God starts speaking, He pretty much tells 'em all to shut up.  So, I never really knew which part of it was actually wisdom to be gleaned. 
 
However, one statement that Job makes at the very beginning of the book pretty much summarizes where we have stood all along.  He says something along the lines of, "shall I accept blessings from the Lord and not adversity?" (Of course not, is the answer to the rhetorical question).  That part I think got a thumbs up from God. 
 
Another thing I was reminded of actually came from one of the first Sunday night sessions Jim taught on spiritual warfare fairly recently before we knew there were potential problems with Nicole.  It was the fact that Satan had to ask and receive God's permission to mess with Job.  For some reason, God granted it, more than once.  So whether or not this [situation with Nicole] is an attack of the enemy and falls under the realm of "spiritual warfare" is not really known to us ---- but if it is, God had to grant permission ahead of time.
 
. . . . I personally have been convinced for a long time now that everything God brings or allows into our lives is for one of two purposes (which in a way are one in the same), and they are . . . 1) to more fully restore us to the relationship with Him that He intended for us to have thereby making
us more like Christ and . . . 2) to bring glory to Himself (by making us more like Christ). 
 
Anyway, as I've thought about the conversation that goes on for chapters between Job and his friends about why this is happening, I've concluded that when God responds, His answer to "why" is basically this --- "Quit trying to figure Me and My ways out.  You were nowhere around when I spoke into creation all that is and set in motion My plans for you.  Why in the world do you think you can begin to truly understand Me and My ways?  Bottom line, all you need to know, child, is that I AM God.
All that I do, all that I allow, the answer to all your questions is simply I AM.  I AM Sovereign, I AM in control, I AM....whatever your situation has you trying to figure out and deal with. 
 
. . . . a teacher I had at Emmaus Road Ministry School . . . had gone through major trials himself.  In the midst of his heartache and trial, his whole walk of faith came down to one fact ---- God is.  After reading Job several times since then, I'm convinced his  conclusion is right.  At first, when the fact that God IS is all  that you have to hold on to, it doesn't seem like much ---- because we want answers, we want to know, we hate uncertainty.  But in reality, I AM, knowing the fact that God IS, is [actually] Everything. 
 
I guess that's why this has been both the hardest, most difficult, emotionally wrenching experience of our lives but at the same time, doesn't seem as hard as it "should be".  We've never lost sight of the fact, nor lost our absolute confidence in the fact that God IS.  Through all of this, the one answer we are convinced He has spoken deep in our spirits over and over again is simply I AM.  And no matter what, He will always be I AM.  Evidently, according to God's response to Job, that's all we need.
 
To all who we got to see today - it was wonderful!  You are all the best. 
 
Deanna

--------------------
 
Letter from Jim Monday night, July 12th.
 
A swirl of thoughts and things today, so I hope you can handle a really loose list:
 
+ Nicole's white blood counts have been rising; she likely has an infection and they have started her on antibiotics.  The biggest problem  with this is that it delays the needed "G-Tube" surgery so she can come home.  PRAY for this infection to disappear quickly.
 
+ She took 15 ml by bottle today without too much problem (her oxygen dropped again, but when boosted, immediately came up again; the whole "episode" took maybe a minute.)  She also gained about ounce.  PRAY that she gain weight consistently.
 
+  Her bili counts are down to around 5.  PRAY they continue to drop.
 
+ Though the doctors have said "4-6 weeks," we're still praying for a far shorter time.  PRAY with us.
 
+  Our church family has been incredibly supportive of us in this difficult time, even allowing me as much time off as needed to care for my family.  PRAY that even while here I can develop ways to minister to them back home.  I feel so stretched. with 2 of my children and all of my "flock" up there and my wife and sick baby here.  Augh!  
 
+  Deanna is struggling with migraines again; PRAY they cease.
 
We heard "down the line" (a Lithuanian missionary forwarded our e-mail to someone who wrote us) of another Tri-18 child who is 4 years old and astounding her doctors in the same way we've been praying for Nicole.  What a blessing to hear from these kind, faithful parents.
 
In my Bible reading today, I found the perfect verses for all of you who have been so diligently, powerfully praying for our family -- 2 We always thank God for all of you, mentioning you in our prayers. 3 We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ.   1 Thess 1:2-3
 
I called the "distribution list" for these e-mails "Nicole's Grace" just because I thought it was "cute."  But I realized today that you all who pray for her truly are "Nicole's Grace" (especially when you use the definition of grace I heard several years ago: God's indwelling power to make us who we are called to be and to cause us to do what we are called to do.)  Your prayers are what is allowing Nicole to experience that level of grace.
 
I heard those magic words, "home" and have begun thinking of all the necessary changes / equipment we will be needing (two of them I wish you would join us in prayer about)  We want to be as faithful of stewards and as wise in our resources as possible. 
 
1.  We will need a cell phone.  I've started some preliminary looking and what a maze!  PRAY for wisdom in choosing a phone and a plan that will be effective and, again, a good use of our resources.
 
2.  We had planned on purchasing a van in the Spring of 2005.  We've done our research and believe the best one for us would be a used (2001+) Honda Odyssey or a Toyota Sienna.  We are committed to not going into debt for this purchase.  Since we will be transporting equipment (oxygen tanks, monitors, etc.) as well as 2 other kids, this need can not wait until 2005.  PRAY for favor in the eyes of whoever we purchase a van from and for wisdom re: when and what to buy.
 
EVERYTHING that we have united in prayer over has been answered in miraculous ways (it's astonishing to see!)  So keep praying - and thank you.
 
WWJ,
 
Jim and Deanna

---------------------------

 
So, friends, please pray for the long standing list of healing needs ----
 
>  holes and valves in the heart,
 
>   billirubin count,
 
>  trisomy 18 issues,
 
>  weight gain,
 
>  food consumption, etc. 
 
But, at the same time, pray for . . . .
 
>  Their church to remain strong, faithful, and supportive.
 
>  Protection from strain and drain on the family, especially Michael and JoyLinn.
 
>  Apparent infection and high blood count (speak to the mountain!)  This, in our opinion, is an area of concern.  Let's ask God to also totally remove the staph infection, even though the medical world says it will never leave.  Infections can be an ongoing problem for Nicole with her other issues.
 
>  G-tube insertion.
 
>  Shortest time span possible for Nicole to go home.
 
>  The return of Deanna's migraine headaches.  They are extremely debilitating.
 
>  Cell phone needs.
 
>  Van needs.
 
Thanks so much for your faithful support.  Sometimes we hesitate to send these letters to you . . . . there have been so many, and you have other things to do.  But, we're just absolutely convinced that a massive army of intercessors who are faithfully praying and fasting is necessary.
 
To be quite honest, we feel like there are three, and not two, options, and the ultimate end depends on the intensity and tenure of prayer.  First, her life can be short . . . . "typical" for most babies in this condition.  To us, God would not receive the glory deserved in this case, and many medical professionals, family members, neighbors, and even Christian friends would be susceptible to skepticism and unbelief.
 
Second, her life can be healed of the immediate physical problems, but then given up in a few months because of "letting down the hedge" and failing to "stand in the gap" as intercessors become weary or negligent.  In that case, we can praise God and give Him glory, but will wonder about what could have been.  And, we will be less prone to take on such a prayer focus in the future.
 
Third, as Jim as described, she can become both a paradox and a parable by being unexplainable apart from God as she continues to grow, "beat the odds", and become one of those "earthenware jars", unexplainable apart from God, having become a living demonstration of the power of God.
 
So, we hope you'll continue standing with us as we reach out for the third option.
 
Thanks for praying.
 
In His Bond and For His Glory,
 
Bob and Jo Ann
 
Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
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