Forum Navigation
You need to log in to create posts and topics.

ENCOURAGING UPDATE ON NICOLE ---- BUT KEEP PRAYING

Posted by: lifeunlimited <lifeunlimited@...>

Dear Friends:
 
We are:
 
. . . currently in Interlaken, Switzerland for an international conference from English speaking Baptist churches throughout Europe and the Middle East.  This their annual of "Glorieta" or "Ridgecrest".  We are anxiously looking forward to renewing fellowship with so many people who have come to mean so much to us this past year, and especially since Nicole Grace's birth three weeks ago.
 
We arrived Thursday afternoon following an uneventful plane trip followed by three hours in a comfortable and scenic train ride from Zurich through Bern to Interlaken.  "Interlaken" means "between the lakes" or "between the seas".  It is situated between Thuner See and Brienzer See connected by the Grosse-Aire (a river)
 
Even though we are not in the high country, we are enjoying all the sights and sounds identified with Swiss life. . . . relaxed life, very friendly people (most of whom speak English), good food, comfortable accomodations, and spectacular views. 
 
We are staying at the Artos Hotel, and feel amazingly fortunate in that there were no rooms available when we first attempted to get reservations.  We'll probably put up a temporary album on our webshots site after we get a few decent pictures.
 
The hotel is owned by the United Methodist Church of Switzerland and serves as a retirement home and a hotel combination.  It is also a member of the Swiss Christian Hotel Association.  So, it's a perfect place for such a gathering . . . . above average accomodationsl, wonderful staff, and great Christian atmostphere.
 
Nicole Grace:
 
Enough about us.  We know you're more interested in the situation with Nicole Grace.  The news is encouraging, but still of critical concern. 
 
In a nutshell, the situation with her heart and oxygen intake are better, the billirubin, feeding situation, and weight are still not where they need to be, and the long term genetic situation has apparently not changed as far as can be detected.
 
Of increased concern to us is the emotional, physical, and financial strain that Jim, Deanna, the children, and the church are probably facing.  So, as you pray, please include these areas as special requests from Grandma and Grandpa.
 
Now, for the latest reports:
 
Deanna sent this report Thursday night:
 
Sorry this is late (for those of you who check every half hour).  We got in late tonight due to traffic and a late supper (but a good one).
 
Nicole is still stable and doing well on her trials on the nasal prongs.  In fact, her saturation levels are BETTER when she's on the nasal prongs vs. the CPAP.  We get to hold her more everyday it seems.  Her arrhythmia was very mild again today.  Already, her heart is being victorious over it's various "conditions".  We believe nothing more than that it will continue to do so.  As one who wrote to us put it, she is helpless and weak, which is the perfect situation for God's power and strength (Grace) to be perfected, according to Galatians.
 
However, she is still not gaining weight - and actually lost some again and is back below birth weight.  Tomorrow they will decide whether or not to "fortify" the breast milk in hopes of getting her to gain and maintain weight.  Her bili count is still way up and they still don't know what has caused that.  It all (the bili and weight gain) may be
related to a metabolic problem regarding amino acids or something, but they haven't gotten the test results back on that yet.  It's possible that she's not metabolizing or "absorbing" her food, which would affect her weight and not allow the nutrients to drive down the bili counts.  So keep praying that those 2 issues would improve. . . .

. . . we found out today that she has contracted an infection that is basically "permanent" called MRSA, which likely will have no effect on her other than that she will always be a carrier of it and those with depressed immune systems could catch it from her.  It's some kind of staff infection that is resistant (the R in MRSA) to some antibiotic family that begins with the M (it includes penicillin's).  It doesn't mean that penicillins won't help her in the case of other infections, it just means they won't be effective in treating this particular infection (which will likely not need treatment anyway).  The biggest effect it currently has is that now we have to wash our hands before AND AFTER touching her so that we don't spread it to another infants that might be susceptible.  The nurses have the biggest hassle because they have to put on sterile gowns and gloves, etc. whenever they touch her because they are in contact with the other babies in the unit.

Except for her primary doctor, all the interns, residents, cardiologist, fellows, etc. "rotated" today, so she has basically an entirely new team of caregivers that we have to get to know and recognize.  That may make getting any new news from doctors re: a possible date of transfer closer to home, etc. a bit delayed. 
 
She was dressed in an outfit today that Aunt Cindy picked up for us.  Even though it's a preemie size, it still was big on her - but at least she was in pink.
 
We've both struggled some today, not so much with her condition or anything, but just with the fact that we're here in this situation and we don't like it.  Not knowing WHEN we'll be back with our other kids is often as draining as simply being away from them.  We really miss them a lot.  Knowing they both are fighting colds and not being there to take care of them adds to the emotional battle as well.  But, we got several encouraging e-mails along those lines today when we got back to the RMH.
We know that this is not a permanent location for us, but to be honest, knowing that still doesn't make not having a hug from them or hearing them pray and say their memory verses at bedtime any easier.  We pray that the Lord will hasten the day we can all be together again - to the extent that His will permits.
 
So, in addition to praying for Nicole's overall health and healing, her bili counts, her weight gain, her heart, etc.  continue to pray also for our family as our emotions are torn between our kids and their locations.  Also pray that Michael and JoyLinn get healthy quick and stay so.  They are to come down Saturday with Deanna's sister's family.  If they are not healthy they can't see Nicole and may possibly have to be kept at the RMH instead of at the hospital. 
 
On a LIGHTER note, Deanna is down to her pre-pregnancy size and weight - from the knees down anyway. 
 
Guess I will close before I start rambling.  Plus, some sleep is needed.
 
WWJ,
 
Deanna

 
Summary of Prayer Requests:
 
I began writing my weekly  "Shoulder To Shoulder" e-letter in December, 1997, when I sent the fist "Shepherds In The Same Country" to about 40 pastor friends, I had no idea it would develop as it has.  It became "official" the first of January and I began numbering them at that time.  In "Shoulder To Shoulder" #2, written from a motel room in Indianapolis, Indiana, I wrote about something my long-time friend mentioned about speaking to your mountain.  He had said, "after you speak to your God about your 'mountain', then speak to your 'mountain' about your God. I will probably send that letter again soon, because it really verbalizes something we're often intimidated by our fears or by Satan to not do.
 
If you notice the ministry of Jesus, of his 66 recorded miracles, He "spoke" to 63 of them.  So, it occurred to me a day or two ago that, while we're all praying to the Father about Nicole's needs, let's not forget to speak to the needs about our Father.  If Jesus spoke to the storms and to the fevers, we should not hesitate to do the same.
 
With that in mind, join me in praying about these:
 
>  That Nicole Grace will live up to her name's meaning, "Victorious Heart", and that she'll beat all the perentages and will live a life of health, fruitfulness, and blessing.  She is already nearing the first set of percentages that say only 30% to 50% survive the first month.  She was born three weeks ago this past Thursday.
 
>  Complete and total reversal and healing of the "non-treatable", "non-reversable" Mosaic Trisomy 18 condition.  Pray that God steadily eliminates the extra 18th chromosome in every cell of her body, and that the damage done will be undone and health will replace it.
 
>  That the holes in her heart will fill in naturally and the malformed disfunctional valves will reshape and function perfectly, with no surgery necessary.
 
>  That the erratic "waltz" heart beat will stabilize and be completely stopped.
 
>  That the absence of the part of her brain that transfers information between left and right sides will be of no consequence.
 
>  That the billirubin count will drop drastically and that the cause will be found and corrected.
 
>  That her liver and kidneys have not been adversely affected.
 
>  That Michael and JoyLinn will get over their colds and be able to see Nicole Grace this week-end.
 
>  That Bob, Cheri, and the gang will make the trip safely from St. Paul to St. Louis.
 
>  That Jim and Deanna will be able to "rest" in the current circumstances and not be anxious about endurance for the long run.  That they can abide in the sufficiency of Christ one day, even one hour or minute at a time.
 
>  That their church will not only sustain, but will grow during this time.
 
>  That the band of intercessors world-wide will remain faithful in courageous faith-centered and authoritative prayer.  That this army will increase in size.
 
+  Because of my own "sermonizing" in the last letter, I didn't want to dilute the following thoughts from Jim which he shared in a letter a couple of days ago.  As usual, it is clear to see evidence of the deeper work God is doing in their lives through this great challenge.  There is no doubt that the greater work happening in the family will bear greater fruit in the future. 
 
Here are Jim's observations:
 
One of the things I have been praying for some time now is that Nicole would be a living paradox - a kid who, because of the brain defects, shouldn't be able to develop normally in terms of mental abilities, but DOES. a kid who, because of the Trisomy 18, shouldn't be able to walk, but DOES, etc.  As I pray these things, I recognize that I have no right to ask to be spared of pain.  But, my father's heart has no other prayer.  It has been, to be honest with you, a quite selfish prayer (I want the best for my child. I want her to be happy, healthy, strong, able to enjoy life in every way.) 
 
Yesterday, while praying about her heart, God gave me a new perspective.  Right now, her heart is still wacky; it's still waltzing; it still has holes in it and malformed valves, etc. etc.  Yet, she is handling all of it.  She is - right now, at least - living out my prayer.  Her heart should - it seems - be causing trouble, but it isn't.  The reason?  God. He has stepped into her weakness and allowed her to "function" beyond what she should be capable of.  What better picture could there be of what "Grace" truly is?
 
Most of you probably learned, at some point in your life, that "grace" is "God's unmerited favor," . . . in other words, God saying, "You don't deserve it, but I love you anyway." 
 
A wonderful preacher years ago introduced me to a new definition of grace: "God's indwelling power to make me who I am called to be and cause me to do what I am called to do."  It's too long to go into here, but he based his definition partly on the "couplet" of Paul's famous saying, "My grace is sufficient for you; my strength is perfected in your weakness."  -- 2 Cor. 12:9. (notice that "grace" and "strength" go together and "you" and 'weakness" go together.) 
 
ANYWAY . . . IF God made Nicole a "living Paradox," she would also be a "living Parable" of grace. 
 
Let's face it.  NONE of us can do ANYTHING apart from Christ.  We are all, in the words of a great old preacher, "wads of flesh, good for nothing, save the rubbish pile and flame."  And yet, somehow, God uses us.  Our hearts, if you're following the analogy, are "defective."  We have holes and places where we are malformed.  We shouldn't be able to accomplish anything - and, in fact, we can't. 
 
BUT. the Grace of God enters in, and we CAN do things we shouldn't be able to do . . . because it is His grace that "causes us to be who we are called to be and do what we are called to do." 
 
Deanna and I should not be holding together as well as we are.  We should not have received the amazing favor of God that has caused our little family to be placed so heavily, so powerfully, so passionately, on THOUSANDS of hearts!  We should not have the favor of those in the hospital and here at the Ronald McDonald house.  But, because of the Touch of Christ, we have all of those things! 
 
Nicole should not be functioning as well as she is.  But, because of the Touch of Christ, she is!  What a picture of "Grace." 
 
Wouldn't it be awesome if our Father answered my father's prayer and continued to make our Victorious Heart not only a living Paradox, but a living Parable.  Every step she took, every book she read, every step of development, would be a reminder that it is only the grace of God that has allowed it . . . And that it works exactly the same for us.
 
Don't know that this is how God would work, but wouldn't it be cool?  No matter what condition she is in . . . no matter the disabilities (if any), there is no doubt in our minds that our Lord will use this experience to further His Kingdom. 
 
One of the things I believe I heard God say early on (but I haven't said much about it) is this: "Hers is not the only heart that you will see 'victorious' in all of this."  I have seen God use our experience to bring some of you "victory," but I have not yet seen Nicole's heart "victorious."  Until I do (or until I receive further "word" from Him) I'm going to keep praying for my "Victorious Heart" to live up to her name . . . not just as a living Paradox, but as a living Parable
 
Please continue to join us.
 
Walk WITH Jesus,
 
Jim

Thanks friends, for your amazing prayer support.  As we close, remember . . . . "While you're speaking to our God about our mountains, let's also speak to our mountains about our God."
 
In the Grip of His Bond of Grace, and For His Kingom of Righteousness,
 
Bob and Jo ann

 
Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter

  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org