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UPDATE WEEK-END COMPILATION ON NICOLE GRACE

#1 · July 27, 2004, 5:05 am

Quote from Forum Archives on July 27, 2004, 5:05 am
Posted by: lifeunlimited <lifeunlimited@...>
Friends:

God continues to amaze us through this entire process with Nicole Grace. We are fully aware of the long road ahead and the possibility that she may not live a normal life span . . . . and none of us have that guarantee for ourselves.

However, we continue to stand in awe at how God has responded to the prayers of His people in her behalf.

This raises some familiar questions ---- "Why does God heal some and not heal others? Why does God spare a person's life for a period of time, and then allow that life to end? How can things be fair in all of this? Does God really have the power AND the desire to heal? Why does God act in some situations and seemingly not act in others?"

There are dozens more questions just like these.

My answer is simple and direct ---- "I don't have a clue!" All we know is that God is sovereign. He is all powerful, and He is all knowing. Based on that reality, we recognize He also has an overriding purpose that incorporates not only all that He plans, but all that He allows, as well. And, in the end, His purposes will be accomplished, His honor will be validated, and His Name will be glorified. And, to use a great Andre' Crouch song, "Through it all, I've learned to depend upon His Word."

Jo Ann and I have thought about such questions from the very beginning when we learned there were major biological problems with Nicole Grace. And, as things have progressed, we've thought about them more often.

During this process hardly a week has passed but what we thought of our dear friends in Missouri . . . . Mark and Angi . . . . who had a baby girl with chromosomal conditions somewhat similar to Nicole's.  The family is a Christian family; Mark's parents are dear friends, owners of our favorite restaurant back home in the States. Interestingly, Deanna and Mark when to college at the same time and place.

We prayed often for them and the baby. We hurt deeply when we looked into their eyes and saw the sadness and anguish they felt for their little girl. We watched the agony of heart on the face of Grandpa and the quiet sadness in the eyes of Grandma. Many times we watched the restaurant employees weep as we would talk about this child.

Hundreds, perhaps thousands, of people prayed for that baby. And yet, she died after about nine months.

As you know, God has placed some real "Samaritans" in our pathway during these weeks . . . . our praying Ukrainian dentist, Dr. Anya . . . . Dr. Mardi in Germany . . . . so many others who have shared their similar stories . . . . and Jill, a military wife and mother to Ashley.

Ashely's story is different from Mark's and Angi's. Ashely has the identical problems that Nicole has. Unlike Mark's and Angi's baby girl who died early, Ashley is over five years old, shows little or no symptoms of the problem, and will begin kindergarten this Fall. Yet, she still lives with the unknown, as we all do.

So, where do we go with all of this? How do we deal with the questions . . . . "Why one and not the other? Will Nicole be like Ashley, or like Mark's and Angi's little girl? How long will she live? Is all of this worth the effort?" You know all these questions, and more. They are not questions that come out of immaturity and shallowness; they are legitimate questions that come from searching hearts.

How do you deal with the way others may feel . . . . fatalistic, resentful, unbelieving, etc.?

There are no clear answers in situations like this. All we can do is continue to live by faith, taking it "one day at a time, sweet Jesus" (as Kris Kristoferson's song states). And all we can do, is declare with Job, that God is in control in the middle of all impossible situations. After he reviewed the unbelievable calamities that wiped out his entire estate and his family, and after his confused friends tried to explain the "why" of it all, Job declared the only thing of which he was certain, "And as for me, I know that my Redeemer lives, And at the last He will take His stand on the earth. (Job 19:25)

As we've said before, we're continuing to ask God for total and complete healing, recognizing that His sovereign power and grace will continue to be manifested as it has in the past. Even if her life were to end today, how could we ever complain or be bitter over what He has done in using her story to touch the hearts of others, in using her circumstance to do new "remodeling" work in our own hearts and the hearts of others, and in using her situation to establish an enormous network of intercessors! As Jo Ann and I ponder how God has blessed the two of us through all of this, we know that Jim and Deanna and their church have been touched ever moreso. And our other children and their families have as well.

Because yesterday's regular "Hope4Kyiv" letter could not contain all of this, we're taking the liberty of sending excerpts of recent updates from Jim and Deanna, beginning with preparation for Nicole's surgery that finally took place last Saturday. We hope you will be blessed and will rejoice over the amazing progress that has taken place, but also remember that there are "major, major, major" challenges and hurdles in the days ahead.

We know you will continue to pray. Our only encouragement is to not allow the "familiarity" with the story to diminish your prayers, and to just presume that everything is alright now simply because she is improving. The race is not over, so don't quit before the finish line.

Kept in His Bond, Refreshed by His Grace, and Buoyed by His Faithfulness,

Bob and Jo Ann

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

Written Friday night, July 23:

We know that many of you are awaiting word on Nicole's surgery today. So are we - waiting to hear WHEN it's actually going to happen. We were told between 3 and 5 pm. It is currently 7:30 pm and they still haven't taken her up. It could be in the next 5 minutes, it could be at 10:00 tonight, it could end up re-scheduled for next week. It's kind of a mini symbolic picture of this whole experience - we just don't know.

Other than that, she's had a good day. We both got to hold her. Because of not having anything to eat since 9 am, she's hungry and was quite awake (and a little fussy) for 2-3 hours. It was actually good to hear her cry good strong cries and to see her looking around very alert. It took 5 tries by several different people to get her i.v. in (she has to have i.v fluids/meds. For 3 days due to the surgery).

We found a nearby restaurant today - within walking distance from the hospital - that we both enjoyed. More expensive than the cafeteria - but much better.

We found encouragement in Psalm 66 today. Even though we're still in the midst of the fire and flood at the moment, we are convinced of the last verses: He HAS heard our prayer and He HAS given regard to our request. Praising Him doesn't have to wait for the outcome to be known to us, because we already know the outcome is in His hands. . . .

WWJ,

Jim and Deanna

Addendum late Friday night:

After waiting around all day with virtually no word from anyone other than, "maybe later." Nicole's surgery is now scheduled for Saturday - sometime between 9-11 am Central Time.

Jim

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

Written Saturday evening, July 24:

FINALLY!

At about 4:00 this afternoon, Nicole went into surgery. She was out by 5:00 (at least that part was according to schedule). She did just fine. She'll be on a ventilator and under warming lights for a little while. Then the process begins of weaning her off the vent. Onto the c-pap again. Then they'll try getting her off

c-pap and back to nasal prongs so we can take her home.

Because of her heart problems, they had to do the old-fashioned kind of surgery with an incision vs. the scope kind (too risky for her heart).  O, she'll have about a 2 inch scar which will always be smaller than mine.

Continue praying.

Deanna

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

Written Sunday afternoon, July 25:

An early report today. . . . we arrived today to find that [Nicole] was already off the ventilator and on c-pap. However, her i.v. had stopped working (the one that took 5-6 tries to get in on Friday) and they had been unsuccessful in 3 attempts so far to get another started. She was supposed to be on an iv for 3 days post-op for her nourishment and meds while her stomach healed. They went ahead and gave her pedialyte through her tube and she handled that okay.

When we got back from lunch, she was off the c-pap and on nasal prongs - still less than 24 hours after surgery. We both have held her for lengthy times today and she's back to looking just like nothing in the world could be wrong with her as she lays there in our arms asleep. As we left to take a break/walk and write this e-mail, they had decided to go ahead and give her breast milk again and see how she tolerates that. Not sure what happened to the 3 days on an i.v. -but they figure if she can handle it they won't have to worry about trying to get an iv in her again. Also, if she tolerates the straight breast milk then they will begin fortifying it again with formula. Also, if she does well on the nasal prongs (i.e. doesn't start in again
with the apnea problems) then they'll resume attempts at bottle feeding.

If she does start having problems with apnea again, they're going to try giving her regular doses of caffeine (a stimulant) which is what they do with preemies who have apnea problems. Besides sending us home with a monitor that measures her sat. levels, they can also send us with an apnea monitor.

Anyway, today has been a promising day so far. Continue to pray.

+ Pray she keeps growing,

+ pray she resumes bowel movements as her feeds resume,

+ pray she tolerates her feeds and doesn't need an i.v.,

+ pray the apnea not return,

+ pray for her to remain stable on the nasal prongs,

+ pray she gain strength in her neck and shoulders to help maintain proper head position (wrong position blocks the airway and triggers apnea spells),

+ pray she develops the ability to take the bottle,

+ pray that in the meantime we learn how to feed her through the tube (and feel comfortable with doing so),

+ pray for continued complete healing of her heart and brain,

+ pray for no more seizures - for corrective circuitry between the brain, heart and lungs, pray, pray, pray, pray.

+ Pray we get to take her home soon and that when we do, we have all we need (including confidence) to care for her and our others in more-than-sufficient ways.

+ Finally, pray for us Monday and Tuesday as we take care of some needed things both here and at home and in order to move Michael and JoyLinn down here to be with us.

Don't know if we'll write again tonight or not - but right now we should get back to her room. We said we wouldn't be gone long.

WWJ,

Jim and Deanna

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

Written Monday night late, July 26:

. . . . We've had a very long, but good day. We got an overnight pass from the RMH (very rare indeed) so that we could have some much needed time to get some more things done at home in preparation for Nicole coming home with us - and for bringing Michael and JoyLinn down to St. Louis with us in the meantime. So tonight we get to sleep in our own bed in our own house for the first time in almost 7 weeks.

We stopped in at the hospital for a few hours this morning before leaving for home. The doctors and nurses were throwing around the "home" word quite aggressively again because she is "doing so well". They are actually attempting to not only get her stable on nasal prongs, but to get her off oxygen all together. So far, since coming off of c-pap she has not had any apnea spells.

The physical therapist came in and worked with her this morning and Nicole was in the mood to show off what she could do. She turned her heads both ways, and even held her head up on her own and lifted it up on her own a couple times (when being belly-side down on the pt's chest). The pt said Nicole was definitely improving in her muscle tone and movement.

But shortly after the "workout" she dropped her sats several times. Not drastically bad, and she did recover on her own for the most part. But it was evident it wore her out quite a bit.

Then we had to do some "training" - part of the routine instructional stuff all NICU parents have to go through before being discharged. Today's was basically all the typical stuff that all parents have to do. We still haven't done the special training on how to feed her through the tube, etc. Still - it's part of the "exiting" process, so at least for today it seems we're getting closer to bringing her home.

. . . . She's back up to 36 cc's on her feeds and working her way back up to 50. Once there, they'll begin fortifying her breast milk again. Her bili counts continue to drop, slowly but steadily and her weight overall didn't drop too drastically due to the time without food while waiting for surgery. Jim just talked to the NICU and she's on 25% oxygen and did fine all day. FYI, 21% oxygen is "room air" - what you and I breathe. She was on 21% until after her "exercise" and so they boosted her up a little to let her rest (she was at 28% when we left the hospital).

We have tons to do around here (which is kind of overwhelming) tomorrow before heading back to St. Louis with Michael and JoyLinn. They are so excited about getting to go with us. We know they'll get over the thrill of being at the RMH fairly soon, but hopefully it won't be a long stay for us. Regardless, we're just glad to be together.

Also, a few new pictures have been posted on the same website we sent in an earlier e-mail, [ http://community.webshots.com/user/01lum ] including one of a 5 year old named Ashley who had a very similar diagnosis at birth as Nicole. She is proof that God is more than able to intervene in the life of a Trisomy baby. Our kids are not statistics, neither do they have to be bound by them. [If you haven't seen these, take a look . . . Bob and Jo Ann]

Better get this sent - it's way late!

WWJ,

Deanna

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

Bob Tolliver
IBC - Hope4Kyiv
lifeunlimited@pobox.com
Subscribe to "Hope4Kyiv" letter
  --  To unsubscribe, send ANY message to: hope4kyiv-unsubscribe@welovegod.org  

Posted by: lifeunlimited <lifeunlimited@...>

Friends:

God continues to amaze us through this entire process with Nicole Grace. We are fully aware of the long road ahead and the possibility that she may not live a normal life span . . . . and none of us have that guarantee for ourselves.

However, we continue to stand in awe at how God has responded to the prayers of His people in her behalf.

This raises some familiar questions ---- "Why does God heal some and not heal others? Why does God spare a person's life for a period of time, and then allow that life to end? How can things be fair in all of this? Does God really have the power AND the desire to heal? Why does God act in some situations and seemingly not act in others?"

There are dozens more questions just like these.

My answer is simple and direct ---- "I don't have a clue!" All we know is that God is sovereign. He is all powerful, and He is all knowing. Based on that reality, we recognize He also has an overriding purpose that incorporates not only all that He plans, but all that He allows, as well. And, in the end, His purposes will be accomplished, His honor will be validated, and His Name will be glorified. And, to use a great Andre' Crouch song, "Through it all, I've learned to depend upon His Word."

Jo Ann and I have thought about such questions from the very beginning when we learned there were major biological problems with Nicole Grace. And, as things have progressed, we've thought about them more often.

During this process hardly a week has passed but what we thought of our dear friends in Missouri . . . . Mark and Angi . . . . who had a baby girl with chromosomal conditions somewhat similar to Nicole's. The family is a Christian family; Mark's parents are dear friends, owners of our favorite restaurant back home in the States. Interestingly, Deanna and Mark when to college at the same time and place.

We prayed often for them and the baby. We hurt deeply when we looked into their eyes and saw the sadness and anguish they felt for their little girl. We watched the agony of heart on the face of Grandpa and the quiet sadness in the eyes of Grandma. Many times we watched the restaurant employees weep as we would talk about this child.

Hundreds, perhaps thousands, of people prayed for that baby. And yet, she died after about nine months.

As you know, God has placed some real "Samaritans" in our pathway during these weeks . . . . our praying Ukrainian dentist, Dr. Anya . . . . Dr. Mardi in Germany . . . . so many others who have shared their similar stories . . . . and Jill, a military wife and mother to Ashley.

Ashely's story is different from Mark's and Angi's. Ashely has the identical problems that Nicole has. Unlike Mark's and Angi's baby girl who died early, Ashley is over five years old, shows little or no symptoms of the problem, and will begin kindergarten this Fall. Yet, she still lives with the unknown, as we all do.

So, where do we go with all of this? How do we deal with the questions . . . . "Why one and not the other? Will Nicole be like Ashley, or like Mark's and Angi's little girl? How long will she live? Is all of this worth the effort?" You know all these questions, and more. They are not questions that come out of immaturity and shallowness; they are legitimate questions that come from searching hearts.

How do you deal with the way others may feel . . . . fatalistic, resentful, unbelieving, etc.?

There are no clear answers in situations like this. All we can do is continue to live by faith, taking it "one day at a time, sweet Jesus" (as Kris Kristoferson's song states). And all we can do, is declare with Job, that God is in control in the middle of all impossible situations. After he reviewed the unbelievable calamities that wiped out his entire estate and his family, and after his confused friends tried to explain the "why" of it all, Job declared the only thing of which he was certain, "And as for me, I know that my Redeemer lives, And at the last He will take His stand on the earth. (Job 19:25)

As we've said before, we're continuing to ask God for total and complete healing, recognizing that His sovereign power and grace will continue to be manifested as it has in the past. Even if her life were to end today, how could we ever complain or be bitter over what He has done in using her story to touch the hearts of others, in using her circumstance to do new "remodeling" work in our own hearts and the hearts of others, and in using her situation to establish an enormous network of intercessors! As Jo Ann and I ponder how God has blessed the two of us through all of this, we know that Jim and Deanna and their church have been touched ever moreso. And our other children and their families have as well.

Because yesterday's regular "Hope4Kyiv" letter could not contain all of this, we're taking the liberty of sending excerpts of recent updates from Jim and Deanna, beginning with preparation for Nicole's surgery that finally took place last Saturday. We hope you will be blessed and will rejoice over the amazing progress that has taken place, but also remember that there are "major, major, major" challenges and hurdles in the days ahead.

We know you will continue to pray. Our only encouragement is to not allow the "familiarity" with the story to diminish your prayers, and to just presume that everything is alright now simply because she is improving. The race is not over, so don't quit before the finish line.

Kept in His Bond, Refreshed by His Grace, and Buoyed by His Faithfulness,

Bob and Jo Ann

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

Written Friday night, July 23:

We know that many of you are awaiting word on Nicole's surgery today. So are we - waiting to hear WHEN it's actually going to happen. We were told between 3 and 5 pm. It is currently 7:30 pm and they still haven't taken her up. It could be in the next 5 minutes, it could be at 10:00 tonight, it could end up re-scheduled for next week. It's kind of a mini symbolic picture of this whole experience - we just don't know.

Other than that, she's had a good day. We both got to hold her. Because of not having anything to eat since 9 am, she's hungry and was quite awake (and a little fussy) for 2-3 hours. It was actually good to hear her cry good strong cries and to see her looking around very alert. It took 5 tries by several different people to get her i.v. in (she has to have i.v fluids/meds. For 3 days due to the surgery).

We found a nearby restaurant today - within walking distance from the hospital - that we both enjoyed. More expensive than the cafeteria - but much better.

We found encouragement in Psalm 66 today. Even though we're still in the midst of the fire and flood at the moment, we are convinced of the last verses: He HAS heard our prayer and He HAS given regard to our request. Praising Him doesn't have to wait for the outcome to be known to us, because we already know the outcome is in His hands. . . .

WWJ,

Jim and Deanna

Addendum late Friday night:

After waiting around all day with virtually no word from anyone other than, "maybe later." Nicole's surgery is now scheduled for Saturday - sometime between 9-11 am Central Time.

Jim

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

Written Saturday evening, July 24:

FINALLY!

At about 4:00 this afternoon, Nicole went into surgery. She was out by 5:00 (at least that part was according to schedule). She did just fine. She'll be on a ventilator and under warming lights for a little while. Then the process begins of weaning her off the vent. Onto the c-pap again. Then they'll try getting her off

c-pap and back to nasal prongs so we can take her home.

Because of her heart problems, they had to do the old-fashioned kind of surgery with an incision vs. the scope kind (too risky for her heart). O, she'll have about a 2 inch scar which will always be smaller than mine.

Continue praying.

Deanna

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

Written Sunday afternoon, July 25:

An early report today. . . . we arrived today to find that [Nicole] was already off the ventilator and on c-pap. However, her i.v. had stopped working (the one that took 5-6 tries to get in on Friday) and they had been unsuccessful in 3 attempts so far to get another started. She was supposed to be on an iv for 3 days post-op for her nourishment and meds while her stomach healed. They went ahead and gave her pedialyte through her tube and she handled that okay.

When we got back from lunch, she was off the c-pap and on nasal prongs - still less than 24 hours after surgery. We both have held her for lengthy times today and she's back to looking just like nothing in the world could be wrong with her as she lays there in our arms asleep. As we left to take a break/walk and write this e-mail, they had decided to go ahead and give her breast milk again and see how she tolerates that. Not sure what happened to the 3 days on an i.v. -but they figure if she can handle it they won't have to worry about trying to get an iv in her again. Also, if she tolerates the straight breast milk then they will begin fortifying it again with formula. Also, if she does well on the nasal prongs (i.e. doesn't start in again
with the apnea problems) then they'll resume attempts at bottle feeding.

If she does start having problems with apnea again, they're going to try giving her regular doses of caffeine (a stimulant) which is what they do with preemies who have apnea problems. Besides sending us home with a monitor that measures her sat. levels, they can also send us with an apnea monitor.

Anyway, today has been a promising day so far. Continue to pray.

+ Pray she keeps growing,

+ pray she resumes bowel movements as her feeds resume,

+ pray she tolerates her feeds and doesn't need an i.v.,

+ pray the apnea not return,

+ pray for her to remain stable on the nasal prongs,

+ pray she gain strength in her neck and shoulders to help maintain proper head position (wrong position blocks the airway and triggers apnea spells),

+ pray she develops the ability to take the bottle,

+ pray that in the meantime we learn how to feed her through the tube (and feel comfortable with doing so),

+ pray for continued complete healing of her heart and brain,

+ pray for no more seizures - for corrective circuitry between the brain, heart and lungs, pray, pray, pray, pray.

+ Pray we get to take her home soon and that when we do, we have all we need (including confidence) to care for her and our others in more-than-sufficient ways.

+ Finally, pray for us Monday and Tuesday as we take care of some needed things both here and at home and in order to move Michael and JoyLinn down here to be with us.

Don't know if we'll write again tonight or not - but right now we should get back to her room. We said we wouldn't be gone long.

WWJ,

Jim and Deanna

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

Written Monday night late, July 26:

. . . . We've had a very long, but good day. We got an overnight pass from the RMH (very rare indeed) so that we could have some much needed time to get some more things done at home in preparation for Nicole coming home with us - and for bringing Michael and JoyLinn down to St. Louis with us in the meantime. So tonight we get to sleep in our own bed in our own house for the first time in almost 7 weeks.

We stopped in at the hospital for a few hours this morning before leaving for home. The doctors and nurses were throwing around the "home" word quite aggressively again because she is "doing so well". They are actually attempting to not only get her stable on nasal prongs, but to get her off oxygen all together. So far, since coming off of c-pap she has not had any apnea spells.

The physical therapist came in and worked with her this morning and Nicole was in the mood to show off what she could do. She turned her heads both ways, and even held her head up on her own and lifted it up on her own a couple times (when being belly-side down on the pt's chest). The pt said Nicole was definitely improving in her muscle tone and movement.

But shortly after the "workout" she dropped her sats several times. Not drastically bad, and she did recover on her own for the most part. But it was evident it wore her out quite a bit.

Then we had to do some "training" - part of the routine instructional stuff all NICU parents have to go through before being discharged. Today's was basically all the typical stuff that all parents have to do. We still haven't done the special training on how to feed her through the tube, etc. Still - it's part of the "exiting" process, so at least for today it seems we're getting closer to bringing her home.

. . . . She's back up to 36 cc's on her feeds and working her way back up to 50. Once there, they'll begin fortifying her breast milk again. Her bili counts continue to drop, slowly but steadily and her weight overall didn't drop too drastically due to the time without food while waiting for surgery. Jim just talked to the NICU and she's on 25% oxygen and did fine all day. FYI, 21% oxygen is "room air" - what you and I breathe. She was on 21% until after her "exercise" and so they boosted her up a little to let her rest (she was at 28% when we left the hospital).

We have tons to do around here (which is kind of overwhelming) tomorrow before heading back to St. Louis with Michael and JoyLinn. They are so excited about getting to go with us. We know they'll get over the thrill of being at the RMH fairly soon, but hopefully it won't be a long stay for us. Regardless, we're just glad to be together.

Also, a few new pictures have been posted on the same website we sent in an earlier e-mail, [ http://community.webshots.com/user/01lum ] including one of a 5 year old named Ashley who had a very similar diagnosis at birth as Nicole. She is proof that God is more than able to intervene in the life of a Trisomy baby. Our kids are not statistics, neither do they have to be bound by them. [If you haven't seen these, take a look . . . Bob and Jo Ann]

Better get this sent - it's way late!

WWJ,

Deanna

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

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

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