UPDATE ON NICOLE

#1 · June 29, 2004, 1:37 am

Quote from Forum Archives on June 29, 2004, 1:37 am
Posted by: lifeunlimited <lifeunlimited@...>
Dear Friends:

Here is a collection of updates from Jim and Deanna that we received over the week-end and through Monday night CDT. We realize that some of you are on other mailing lists and are getting the same thing from us or from another family member. So, forgive us for that duplication, but it's either that or nothing.

Also, some good news ---- Bob was finally able to set up a web photo album exclusively about Nicole Grace. There are currently pictures of Nicole, the family, Dr. Anya and her staff. So, if you'd like to put faces to names, here's your chance. We will update as we have pictures available. Go to  http://community.webshots.com/user/01lum and click on "Victorious Heart" album. There are other albums as well.

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

Saturday, June 26th:

Not much change again today in Nicole. She seems to have plateaued a bit. She is up to her max. amount for feedings 1 ½ ounces. She was fairly restless today for some reason and has some slight arrhythmia (irregular heart beat) - but it doesn't seem to be affecting her, so they aren't concerned about it. She's had lots of messy diapers the past two days (which Deanna got to change, yippee! And stink city!)

There still are specific prayer requests, though.

+ Of course, our ultimate prayer and desire is for her complete healing and recovery from all traces of trisomy 18, including her heart and brain.

+ As far as specific requests for what must be accomplished before being transferred closer to home, pray she will gain weight. She gains and then loses again. Since she is up to her max. feed amount right now, she really needs to start gaining some weight.

+ Also, her liver bilirubin count is still way too high and they still aren't sure what is causing that. Pray it will decrease dramatically regardless of if they find the cause. Pray her platelet counts will stay up. They did determine that some antigens (or something) in my blood was at least part of the problem. As she begins to produce her own blood supply, that "should" resolve itself.

+ Pray for our other children's safety as they head down here tomorrow. and for our safety -

+ . . . and Deanna's health, strength, recovery -- as we travel back home on Monday to take care of some things and bring the kids back. The trip on Thursday set Deana back a couple days as far as how she was feeling - pray that Monday's trip (which is necessary for her due to a doctor's appointment) won't have the same effect.

All of the above, in terms of Nicole's well-being is almost more frustrating than when she was going downhill. Monotony seems like a cruel, selfish word to use when facing a situation like ours. but it's the truth. I have to admit that today I don't feel strong. Under the surface is that same old growing frustration, anger, fear. OF COURSE I'm happy she is no longer declining. but I guess actually that's it. When there isn't any improvement and when they still can't find the cause of the high billirubin (or whatever) and when her heart is beginning to act "funny" again. I guess maybe I wonder if she really is "plateaued."

God was faithful again today and gave me "fresh words" of encouragement. My daily readings (actually, I'm several days ahead now.) took me to Isa. 6. When King Uzziah died, it was a very tenuous time in the history of Israel. dangerous, unsteady, uncertain, difficult. And yet the FIRST thing Isaiah sees in his vision is "the Lord on His throne. high and exalted." It reminded me of John's similar vision in Revelation. A similar situation for John - lonely, exiled, troubled, etc. and in his vision, he also sees the Lord ON THE THRONE. And then the Lord reminded me of the time when John the Baptist was in prison and sent his 2 disciples to Jesus to basically ask, "Are You REALLY the One? Have I been wasting time? This sure isn't turning out the way I thought it would what with me in prison and all. so I just need to be sure."
And Jesus simply tells John's disciples to tell him what they were seeing - the work of Christ, healings, the Gospel preached etc. All of the above served as a kind reminder that no matter what we go through, . . . .

#1 - God is still on His throne (and not particularly nervous about losing His grip there.) In other words, He is completely sovereign and all -powerful.

#2 - He is working even when we can't see Him. Sometimes it takes others to return to us in our prisons and declare, "Here's what God is doing." That's what your prayer and e-mails mean to me. at least partly.

From there, the Lord also showed me Isa. 7 - in verses 3-6, the prophet basically reveals the plans of the enemy. . . what the king has been told is going to happen. But in verse 7, it says simply, "But THIS is what the Sovereign Lord says." I'm not going to "spiritualize the text" by claiming that all of this is the enemy's work (I don't know
that.) but it was a kind reminder of one of the things God has said all along. Basically, you've heard from the doctors. you've heard from this person and that person and they've told you what they believe will happen. But it is our loving, heavenly Father who will have the final word about the future of my Victorious Heart. Here's what the doctors (and your own heart and whoever else) are saying. BUT. THIS is what the Sovereign Lord says.."

And, as I preached about a year ago, we're still waiting for God to fill in that blank in our situation.

Keep praying.

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

Here is a brief follow-up report from our Jim as of late Sunday morning:

The irregular heart beat mentioned in last night's e has gotten much worse. more defined. The doctors are now keeping a pretty close eye on things and MAY have to start Nicole on another heart medication - a Beta Blocker.

Also, we learned this morning that the whole team of doctors wants to have another pow-wow with us on Tuesday or Wednesday - so what all that means, we don't know.

Please pray, specifically, for her heart. Pray that the irregular heartbeat cease and return to normal. Pray for the strength and efficiency and proper working of her heart. We STILL don't believe her name was accidental. We still believe we will see Nicole's heart be Victorious.

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

Here is a third letter we received, written about 8:00 am Monday.

doctors did put Nicole on a Beta Blocker to try to even out her irregular heartbeat. It appears to be somewhat working. However, she still sets off her alarms on semi-regular basis. . . . it is an unnerving, nerve-wracking experience to sit by the bedside of my baby. my victorious heart. and every couple of minutes the alarm goes off because her average beats per minute have dropped significantly. and the reason her beats per minute have dropped is because her heart periodically stops. Instead of a steady beat, you could dance to the syncopation of her heart!

However, the new medication seems to be helping. And, she still has plenty of positive signs of overall health (wet diapers, stinky diapers, still "tolerating" full feeds, good oxygen levels, etc.)

. . . Nicole is going to be tried on the smaller nasal prongs again this week. In fact, this week, they're going to really "push" it on her and force her to work. trying to get those lungs to develop. trying to wean her away from being dependent on "forced oxygen."

+ So. Please pray specifically that her heart rate will even out and become steady.

+ Pray that her heart will gain strength and ability to function.

+ Even if her heart remains "dysfunctional," pray that she can handle it.

+ Pray that her lungs develop and that she be able to breathe on her own.

+ Pray for the "trials" to go well and for her lungs to gain strength and endurance.

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

Monday Night, 10:00 pm

Nicole's heart is doing a waltz. One strong beat followed by two weaker ones followed by silence. CURRENTLY, according to the cardiologist, her irregular heartbeat doesn't appear to be adversely affecting her. All of her oxygen levels and blood gases and whatever else they look for appear okay. They believe her current
problem may partially be a result of the new medication so they've gone back to the old. It's one of those "tight rope" situations where they need to balance the medication with the various effects that it's having on her body. There is no medication to help the particular kind of irregularity that she is exhibiting now.

All of that said, HOWEVER, Deanna and I don't think she looked quite as good and, no matter what, it's a serious issue. They will do an echo tomorrow to determine the overall functioning of her heart. This is the big issue. Kids with normal hearts sometimes exhibit this same pattern. As long as her system can tolerate the irregularity and have the heart function adequately, it's not that big a deal. (Easy for the cardiologist to say!)

Anyway, my head is swimming a bit and I need to close.

+ Pray for a healthy echo.

+ Pray that Nicole's heart return to regular rhythm or that it, at least, can tolerate and function adequately even WITH "The Waltz" going on.

+ Pray for Deanna and I as we recover from a VERY long, busy day.

+ Pray for us to QUICKLY get back to 100% and stay healthy.

+ Pray for Nicole to stabilize (again) enough to bring her back to the closer hospital so we can have our home and our kids back. We miss both
terribly.

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

While you're at it, pray for us here in Kiev. Today and tomorrow we try to get packed for our two-week trip to Switzerland. We'll be attending a conference of International Baptist Churches in Interlaken, and then will add about four or five days on for some holiday time. We'll be fairly easily accessible via internet at least through the 8th, though we don't know what kind of internet access we'll have between the 8th and 14th when we return home.

Pray for Bob as he finishes his teaching on Satan at 6:45 pm (10:45 am Thuesday CDT). It's been obvious that this study was not one the enemy wanted, and it has shown in distractions, confusion, and even beligerent questioning by some students. That, of course, doesn't surpise us . . . . but it is a very wearying experience.

Finally, thanks to so many who have written recently about these extra letters and also about the content of the weekly "Shoulder To Shoulder" letters. Those remarks encourage us to keep going.

In His Bond,

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  

Posted by: lifeunlimited <lifeunlimited@...>

Dear Friends:

Here is a collection of updates from Jim and Deanna that we received over the week-end and through Monday night CDT. We realize that some of you are on other mailing lists and are getting the same thing from us or from another family member. So, forgive us for that duplication, but it's either that or nothing.

Also, some good news ---- Bob was finally able to set up a web photo album exclusively about Nicole Grace. There are currently pictures of Nicole, the family, Dr. Anya and her staff. So, if you'd like to put faces to names, here's your chance. We will update as we have pictures available. Go to http://community.webshots.com/user/01lum and click on "Victorious Heart" album. There are other albums as well.

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

Saturday, June 26th:

Not much change again today in Nicole. She seems to have plateaued a bit. She is up to her max. amount for feedings 1 ½ ounces. She was fairly restless today for some reason and has some slight arrhythmia (irregular heart beat) - but it doesn't seem to be affecting her, so they aren't concerned about it. She's had lots of messy diapers the past two days (which Deanna got to change, yippee! And stink city!)

There still are specific prayer requests, though.

+ Of course, our ultimate prayer and desire is for her complete healing and recovery from all traces of trisomy 18, including her heart and brain.

+ As far as specific requests for what must be accomplished before being transferred closer to home, pray she will gain weight. She gains and then loses again. Since she is up to her max. feed amount right now, she really needs to start gaining some weight.

+ Also, her liver bilirubin count is still way too high and they still aren't sure what is causing that. Pray it will decrease dramatically regardless of if they find the cause. Pray her platelet counts will stay up. They did determine that some antigens (or something) in my blood was at least part of the problem. As she begins to produce her own blood supply, that "should" resolve itself.

+ Pray for our other children's safety as they head down here tomorrow. and for our safety -

+ . . . and Deanna's health, strength, recovery -- as we travel back home on Monday to take care of some things and bring the kids back. The trip on Thursday set Deana back a couple days as far as how she was feeling - pray that Monday's trip (which is necessary for her due to a doctor's appointment) won't have the same effect.

All of the above, in terms of Nicole's well-being is almost more frustrating than when she was going downhill. Monotony seems like a cruel, selfish word to use when facing a situation like ours. but it's the truth. I have to admit that today I don't feel strong. Under the surface is that same old growing frustration, anger, fear. OF COURSE I'm happy she is no longer declining. but I guess actually that's it. When there isn't any improvement and when they still can't find the cause of the high billirubin (or whatever) and when her heart is beginning to act "funny" again. I guess maybe I wonder if she really is "plateaued."

God was faithful again today and gave me "fresh words" of encouragement. My daily readings (actually, I'm several days ahead now.) took me to Isa. 6. When King Uzziah died, it was a very tenuous time in the history of Israel. dangerous, unsteady, uncertain, difficult. And yet the FIRST thing Isaiah sees in his vision is "the Lord on His throne. high and exalted." It reminded me of John's similar vision in Revelation. A similar situation for John - lonely, exiled, troubled, etc. and in his vision, he also sees the Lord ON THE THRONE. And then the Lord reminded me of the time when John the Baptist was in prison and sent his 2 disciples to Jesus to basically ask, "Are You REALLY the One? Have I been wasting time? This sure isn't turning out the way I thought it would what with me in prison and all. so I just need to be sure."
And Jesus simply tells John's disciples to tell him what they were seeing - the work of Christ, healings, the Gospel preached etc. All of the above served as a kind reminder that no matter what we go through, . . . .

#1 - God is still on His throne (and not particularly nervous about losing His grip there.) In other words, He is completely sovereign and all -powerful.

#2 - He is working even when we can't see Him. Sometimes it takes others to return to us in our prisons and declare, "Here's what God is doing." That's what your prayer and e-mails mean to me. at least partly.

From there, the Lord also showed me Isa. 7 - in verses 3-6, the prophet basically reveals the plans of the enemy. . . what the king has been told is going to happen. But in verse 7, it says simply, "But THIS is what the Sovereign Lord says." I'm not going to "spiritualize the text" by claiming that all of this is the enemy's work (I don't know
that.) but it was a kind reminder of one of the things God has said all along. Basically, you've heard from the doctors. you've heard from this person and that person and they've told you what they believe will happen. But it is our loving, heavenly Father who will have the final word about the future of my Victorious Heart. Here's what the doctors (and your own heart and whoever else) are saying. BUT. THIS is what the Sovereign Lord says.."

And, as I preached about a year ago, we're still waiting for God to fill in that blank in our situation.

Keep praying.

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

Here is a brief follow-up report from our Jim as of late Sunday morning:

The irregular heart beat mentioned in last night's e has gotten much worse. more defined. The doctors are now keeping a pretty close eye on things and MAY have to start Nicole on another heart medication - a Beta Blocker.

Also, we learned this morning that the whole team of doctors wants to have another pow-wow with us on Tuesday or Wednesday - so what all that means, we don't know.

Please pray, specifically, for her heart. Pray that the irregular heartbeat cease and return to normal. Pray for the strength and efficiency and proper working of her heart. We STILL don't believe her name was accidental. We still believe we will see Nicole's heart be Victorious.

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

Here is a third letter we received, written about 8:00 am Monday.

doctors did put Nicole on a Beta Blocker to try to even out her irregular heartbeat. It appears to be somewhat working. However, she still sets off her alarms on semi-regular basis. . . . it is an unnerving, nerve-wracking experience to sit by the bedside of my baby. my victorious heart. and every couple of minutes the alarm goes off because her average beats per minute have dropped significantly. and the reason her beats per minute have dropped is because her heart periodically stops. Instead of a steady beat, you could dance to the syncopation of her heart!

However, the new medication seems to be helping. And, she still has plenty of positive signs of overall health (wet diapers, stinky diapers, still "tolerating" full feeds, good oxygen levels, etc.)

. . . Nicole is going to be tried on the smaller nasal prongs again this week. In fact, this week, they're going to really "push" it on her and force her to work. trying to get those lungs to develop. trying to wean her away from being dependent on "forced oxygen."

+ So. Please pray specifically that her heart rate will even out and become steady.

+ Pray that her heart will gain strength and ability to function.

+ Even if her heart remains "dysfunctional," pray that she can handle it.

+ Pray that her lungs develop and that she be able to breathe on her own.

+ Pray for the "trials" to go well and for her lungs to gain strength and endurance.

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

Monday Night, 10:00 pm

Nicole's heart is doing a waltz. One strong beat followed by two weaker ones followed by silence. CURRENTLY, according to the cardiologist, her irregular heartbeat doesn't appear to be adversely affecting her. All of her oxygen levels and blood gases and whatever else they look for appear okay. They believe her current
problem may partially be a result of the new medication so they've gone back to the old. It's one of those "tight rope" situations where they need to balance the medication with the various effects that it's having on her body. There is no medication to help the particular kind of irregularity that she is exhibiting now.

All of that said, HOWEVER, Deanna and I don't think she looked quite as good and, no matter what, it's a serious issue. They will do an echo tomorrow to determine the overall functioning of her heart. This is the big issue. Kids with normal hearts sometimes exhibit this same pattern. As long as her system can tolerate the irregularity and have the heart function adequately, it's not that big a deal. (Easy for the cardiologist to say!)

Anyway, my head is swimming a bit and I need to close.

+ Pray for a healthy echo.

+ Pray that Nicole's heart return to regular rhythm or that it, at least, can tolerate and function adequately even WITH "The Waltz" going on.

+ Pray for Deanna and I as we recover from a VERY long, busy day.

+ Pray for us to QUICKLY get back to 100% and stay healthy.

+ Pray for Nicole to stabilize (again) enough to bring her back to the closer hospital so we can have our home and our kids back. We miss both
terribly.

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

While you're at it, pray for us here in Kiev. Today and tomorrow we try to get packed for our two-week trip to Switzerland. We'll be attending a conference of International Baptist Churches in Interlaken, and then will add about four or five days on for some holiday time. We'll be fairly easily accessible via internet at least through the 8th, though we don't know what kind of internet access we'll have between the 8th and 14th when we return home.

Pray for Bob as he finishes his teaching on Satan at 6:45 pm (10:45 am Thuesday CDT). It's been obvious that this study was not one the enemy wanted, and it has shown in distractions, confusion, and even beligerent questioning by some students. That, of course, doesn't surpise us . . . . but it is a very wearying experience.

Finally, thanks to so many who have written recently about these extra letters and also about the content of the weekly "Shoulder To Shoulder" letters. Those remarks encourage us to keep going.

In His Bond,

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