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richfed
Sachem
USA
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 Posted - January 12 2003 : 09:06:34 AM
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There was a time - in my "webmaster" life here on the Mohican Board, especially back on the old WWWboard format - where I would privately decry what I called "oh woe is me" posts made on the board. They were a source of irritation [albeit minor] to both Elaine & I - probably to some posters, as well. Just didn't fit, I thought.
Well, I guess this is turning out to be a major "oh woe is me" post & thread, and for that I apologize. More than anything, it's one of the releases I seek in what is becoming a tragic part of my life.
If you find it irritating, depressing, or anything along those lines - just don't read any more of it.
For those seeking updates - and for my own sanity:
Sophia was on a high for several weeks, but that seems to have ended. Forgive my lack of use of proper medical terminology here, but basically the vicious cycle is this ...
She can't metabolize enough protein through her gut - mainly cause she's not getting enough - so, the doctors [a team of 4 primaries] supplement her with amino acids. They bypass the intestine going directly to the liver - overloading it. As one doctor said, "We're poisoning her; we know we are, but that's all we can do."
So, they try to increase her feedings of milk and decrease her IV fluids. But, due to the lack of protein metabolizing, her abdominal cavity fills with fluids. The pressure from that causes her to be unable to breath, which then results in heart rate drop - severely. Thus, back on the respirator, cut out the feedings, back to amino acids - more poison. A Catch-22 if ever there was one. She can't seem to break the cycle. They tap her belly & release some of the fluid & pressure, but they can't do that too often for three reasons - stress on her, risk of infection [of which she now has one], and because the more they tap, the more the body feels the need to fill the space & produce more fluid ... another Catch-22.
She needs more protein, and she needs it via the normal digestive process rather than through the liver directly. That's the crux of her problem.
We talked at length with one of her doctors yesterday afternoon ... for the first time, the lack of optimism was discernible. I could hear the frustration in his words. I heard more dire messages, too.
"We're going to have to go for broke."
"If she doesn't survive, the eyes don't mean anything." [referring to the delay in some upcoming laser surgery on her eyes.]
"Right now, she still has a chance at a normal life."
I don't know, folks ... Elaine is much more upbeat about all of these. I suppose it's a Mother-thing. I started crying.
Then as we left - and I swear this occurred just as I describe it - my eldest son Jesse, who was there visiting, said, "Goodbye, Sophia," and he waved his hand at the side of the incubator. Sophia was laying on her left side. She opened her eyes, raised her right hand, and waved it - I mean she really waved it - back at him. I know that sounds kooky - like a distraught parent seeing what he wants to see - but it clearly happened just that way. It was ... a wave!
I do not understand what is happening here ... |
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Cherie
Colonial Settler
USA
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Posted - January 12 2003 : 09:54:09 AM
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Mohican... To "ME" the word means "Family". Your joys and your pain are felt by all those who are in the family. We rejoice with you and will cry with you. Only the All Mighty knows why these things happen. Never feel that you cannot share with this "family". You and yours are ALWAYS in our thoughts and in our prayers.
I always check this thread to see how the little one is fairing. And if there is ever ANYTHING that is needed we hope and pray that you will ask.
Cherie. |
Support our Country, our President and our Troops |
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caitlin
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Posted - January 12 2003 : 10:54:46 AM
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I always check this thread to see how the little Sophia is fairing as well. I for one am glad you have this topic for all things family - good and bad. Please don't think of this as a "oh woe is me" post & thread, far from it. We are genuinely interested in her well-being. Having just had my son, I definitely feel your pain and wonder how I could ever maintain my strength if my little one were in Sophia's predicament. As Cherie put it so eloquently, "Your joys and your pain are felt by all those who are in the family. We rejoice with you and will cry with you."
caitlin |
Jack McCall: "Should we shake hands or something, relieve the atmosphere. I mean how stupid do you think I am?"
Wild Bill Hickok: "I don't know, I just met you."
"A nation with no regard to it's past will have little future worth remembering."
A.Lincoln
"Enjoy the little things, for one day you may look back and realize that they were the big things"
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securemann
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USA
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Posted - January 12 2003 : 1:19:19 PM
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| Your joys and pain are felt here.Prayers fly out of here left and right.We are with you all.Stay strong and remember,"The Will of God will never take you to where the Grace of God will not protect you." |
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Chris
Colonial Settler
USA
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Posted - January 12 2003 : 6:31:52 PM
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Dear Rich and Elaine,
After posting on the Weekly Update board, I came here and read this update. It pinched my heart.
I have a friend who has never been able to pray "Thy will be done" because she's never sure she wants what God wants. I understand her feelings. God knows what is in store for Sophia, and we have to trust that He will do what is best for her. She and her doctors are in God's hands, and His will will be done. I once had a patient with a terminal illness who told me he was praying for a miracle, but that he would have his miracle either way. I am praying for Sophia to have a long and healthy life, but she will have her miracle no matter what happens. I just have to convince my heart of that.
Love, Chris |
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Wilderness Woman
Watcher of the Wood
USA
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Posted - January 12 2003 : 7:20:36 PM
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| We all are holding her in our prayers and in our hearts, and remember... He is still holding her "against His chest." |
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Christina
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Posted - January 13 2003 : 11:32:05 AM
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Rich:
I have not been around for a while (as usual) and I am so sorry to see the turn things have taken. It breaks my heart to think of what you all must be going through but do know this one thing, as others have told you...GOD HAS SOPHIA IN HIS HANDS. And he has your whole family there as well. We can never know the meaning and the reason for things that happen to us and the people we love. The challenge of faith is to see God working through even the most difficult times. I believe that little "wave" you got from Sophia was God, in his own way, saying "Don't worry Rich and Elaine, things seem hard but I've got it in control." I believe Sophia knows she is loved and can feel that love both from her parents here on Earth and her parent in heaven.
Please know you will continue to be in my prayers and never, ever feel you can't share things like this with the "Internet family." That's one of the treasured things about the Internet and communities like these...folks all over the country (and the globe) can come together and show they care in times of difficulty!
Peace and love,
Christina |
See this face? This is the face of a woman on the edge.
Whoopi Goldberg, "Jumping Jack Flash"
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richfed
Sachem
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Posted - January 15 2003 : 06:21:23 AM
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quote:
Originally posted by Anthony
Knowing and REMEBERING the 'sensitive' & very easy going friendly HUMAN you were way back in the 70's ...
You sure you knew ME?!? 
Anyway, I [we] can't thank all of you enough for your support through all of this ...
Finally, we have a diagnosis ... so, I think that unto itself is a positive development. Always good to know thine enemy!
Sophia has a very rare condition called chylous ascites ... more or less, a leakage of the lymphatic system causing all the stuff I mentioned up above. It is treated by nutrition. Conversely, it's rather high mortality [among infants] rate is caused by malnutrition. Apparently, they've seen this at Memorial Mission 3 times in the not-too-distant past - all successfully dealt with.
We can expect another 2-6 months of hospitalization. Then, if she survives, a sudden & dramatic clearing of the condition and accelerated improvement.
Ironically, this was most likely precipitated by her liver/gall bladder surgery in early December. Chylous ascites is often caused by abdominal trauma.
That's where she stands at the moment ... |
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Bea
Keeper of the Western Door
Canada
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Posted - January 15 2003 : 10:18:01 AM
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| Rich, thanks so much for the update. it's good to know what is going on.I think Sophia is such a little fighter and I am sure she will overcome this hurdle as well. I believe the wave meant something. We will continue to pray for her well-being and also for you guys guys to be strong. |
Carpe Diem |
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Christina
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 Posted - January 16 2003 : 5:28:40 PM
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Rich and Elaine:
I am glad to hear that at least you all can "know thine Enemy." Putting a name to the problem is the first and very important step -- it's also a relief because at least now you can learn more about what you are dealing with, how it's been treated and how it can be overcome. Please take care of yourselves during this difficult time and know that prayers and thoughts are continuously with you and your precious little fighter, Sophia. 
Peace, Christina  |
See this face? This is the face of a woman on the edge.
Whoopi Goldberg, "Jumping Jack Flash"
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Wilderness Woman
Watcher of the Wood
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richfed
Sachem
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Posted - January 19 2003 : 08:09:34 AM
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With the snow & such here in Mohicanland, our visits to Asheville were curtailed late this week. The good people caring for Sophia over there - who consider this so much more than just a job - sent us a couple of polaroids to tide us over. The card in which they arrived, simply said:
Weeping may endure for a night ...
But joy cometh in the morning.
Psalm 30:5
May the Lord's love
be with you
through this
dark night
on into the smiling morning ...
and may that
morning come soon.
God bless you all.
That's the kind of people caring for our little girl.
Perhaps Lainey will fill you all in later on; she's better with this technical medical stuff ... suffice it to say, right now, she's on another upswing! 
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Jayne
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Posted - January 19 2003 : 09:02:52 AM
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Good news, Rich.  Thanks for letting us know. Jayne |
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Chris
Colonial Settler
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Posted - January 19 2003 : 1:17:42 PM
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What wonderful news! With caregivers such as those, you know God has her in His hands. Any chance you might be able to share one/some of those pictures in Sophia's photo album?
Chris |
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securemann
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Posted - January 19 2003 : 1:22:27 PM
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| Sounds like she is in good hands all the way around. |
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Gadget Girl
Gatherer of Gathering Gadgets
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Posted - January 19 2003 : 6:12:25 PM
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The majority of NICU personel are special folks. Most medical workers do their best to not become personally involved, but not these folks - they open their hearts wide for each little one not much bigger than a squirrel AND their families. It is always good to know that the babies I follow inside my Moms (by ultrasound) will be handed to such caring hands. I've seen NICU nurses just crumble to the floor when one of their babies takes a sad turn. They TRULY are a special breed!!!!
I am so glad to hear of Sophia's upswing and hope the little fighter can sustain it and build up her strength!!!
Thanks for sharing her news!
Di |
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richfed
Sachem
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Posted - January 20 2003 : 08:19:27 AM
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quote:
Originally posted by Chris
What wonderful news! With caregivers such as those, you know God has her in His hands. Any chance you might be able to share one/some of those pictures in Sophia's photo album?
Chris
DONE! |
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Chris
Colonial Settler
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Posted - January 20 2003 : 12:35:06 PM
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Thank you! She's beautiful. And what a fighter! We're all so proud of her.
Chris |
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Theresa
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Posted - January 20 2003 : 4:06:37 PM
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...and she looks like she's grown so much.
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Theresa |
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securemann
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Posted - January 20 2003 : 4:14:16 PM
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| Wow,she got big! Thanks for the picture. |
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Wilderness Woman
Watcher of the Wood
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Posted - January 20 2003 : 6:17:55 PM
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quote:
Originally posted by Gadget Girl
I've seen NICU nurses just crumble to the floor when one of their babies takes a sad turn. They TRULY are a special breed!!!!
They must be! God Bless them, for they are doing a job that many of us could not handle at all. I know I couldn't!
Grow, Sophia! Get strong, Sophia! We're all rootin' for ya, sweetie!
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Lainey
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Posted - January 20 2003 : 11:00:44 PM
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Technical update, Rich???? OK ...
After spending several hours on each of these past days visiting Sophia I see steady, daily, significant progress. This past week she's beaten a staph infection, went back on milk & tolerated it very well, reduced her IV PN requirements, went down on her abdominal girth, has required tapping of fluid only twice (and not at all since Thursday), stayed on room air settings while on c-pap, went off c-pap & onto a nasal vapor-therm which provides a light, moist oxygen flow when needed (New gadget, Diana! Really neat!), passed away the hours sucking on her pacifier, gained strength/alertness, and today - drank from her first bottle!
So, her Chylous Ascites seems to be resolving incredibly fast. Her nutritional status, which was extremely poor (critical), is normalizing. She's lost a lot of fluid (edema) while taking in more nutrition directly in her gut & obviously feels much better. Her retnas show some damage but not enough to warrant laser surgery at this point. She'll be checked weekly by a pediatric retnalogist & will be assessed for further deterioration (which will mean surgery), no change (which might mean glasses), or improvement (which would mean joy).
Down the road; follow-ups with the hematologist to confirm or rule out Beta Thalasemia (a type of anemic blood disorder courtesy of her Mediterranean roots), neurological assessments to track development (most likely to be 'behind'), bone density loss (a possible consequence of malnutrition for so long early in life), intensified therapy to strengthen her muscle tone & motion range, & lots of extra hugs.
That's the 'technical update' ...
It means she's been looking better, getting stronger, smiling a LOT, staying awake & alert for long periods of time, is more playful & responsive with her eyes & hands, is sporting some chubby cheeks, growing, healing, developing, & winning hearts. Drinking from the bottle showed her brain was giving real positive cues & her body responded; sucking & swallowing as she should. She still has a paralysis of her vocal chords (traumatized by long term intubation) & can't cry with sound. In time ...
She's really incredibly strong & an absolute joy. You just have to see her smile!!!
Thank you all for such uplifting notes. And yes, God has plans for Sophia!
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"Fides et Ratio" |
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Theresa
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Posted - January 20 2003 : 11:12:27 PM
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Oh my goodness, Lainey. This sounds so wonderful. Each thought, prayer, positive vibe, etc. from all of her Mohican parents are working along with an Almighty Power and her loving family. We will not stop until she's home and happy and even then, we will not stop. God bless you all.
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Theresa |
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Lainey
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Posted - January 21 2003 : 02:07:35 AM
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quote:
We will not stop until she's home and happy and even then, we will not stop.
Thanks, Theresa! And it IS good news ...
{I forgot to mention that Rich got to hold Sophia for the first time.} |
"Fides et Ratio" |
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richfed
Sachem
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Posted - January 21 2003 : 05:52:08 AM
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Yeah, Lainey ... What's yer pwoblem, anyway!?! 
Good report, though! Now, even I know what's going on! 
Yes ... yesterday was one of those great - all-time - days, and it wasn't just because I had an extra day off.
Arriving there at Sophia's bed, we had the pleasure of seeing her entire face, thanks to the newfangled vapo-therm contraption, or whatever they call it - so much less obtrusive. That made it great unto itself, because, of course, it means she needs less support, and the less support she needs, the better she is doing.
Because there were less wires & things, I actually had the "nerve" to hold her - and hold her I did for about an hour ... she was out & held for two full hours! What a treat it must've been for her; what a treat & joy it was for us!!!! I just wanted to squish her all up. My biggest thrill was putting my lips on her face & giving her a gentle, loving kiss. And she just slept like a baby ...
Then, as Lainey described, it was her very first bottle feeding [spontaneous, too!] - just a few cc's - but a major milestone in her brief, but tumultuous life. I left the hospital feeling very positive for her future; quite a turnaround from just 10 days ago.
What a remarkable young lady she is!!!!
I took some pictures ... will try to post one soon! [I missed the bottle feeding, was too overcome with joy to think about the camera - amazing what all these usually taken-for-granted little steps mean in Sophia's life!]
And, we ran into Steph, too! |
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Yes ... One More! ... The Sophia Story!
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