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Sjogrens Topics => Living With Sjogren's => Topic started by: sass on May 14, 2011, 01:00:05 AM

Title: Reaching Out For Prayers For Twins! =(
Post by: sass on May 14, 2011, 01:00:05 AM
 :'(        One of our babies has several problems.  In NICU!  It is 3:00 am and can't sleep!  My heart is breaking!
Please Pray for Callie Olivia, She was born today at 12:33, weighed 6lbs, 19 3/4 inches long.
Her Sister Kyndall Mary is doing good, born at 12:34, weighe 5lbs 9oz, 18 1/2 inches long.

Keep us all in your Prayers.      Thank You, sass
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Meld256 on May 14, 2011, 02:32:03 AM
sass,

My heart breaks along with you...I'm sure you can't sleep and are full of worry.  My prayers are with you and little Callie.  The NICU units are amazing places, where wonderful recoveries can happen.

Glad that sister Kyndall is doing well. They are both a really good size, as you expected. How's their Momma doing?  And your son?  I'm sure your love and support mean the world to him right now.

You are all in my thoughts and prayers. I know God is watching over all of you.  I hope you receive some rest for your body and mind knowing He is there.
Many hugs to you...Melinda
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: ohiolady on May 14, 2011, 02:37:13 AM
Sass,

I will certainly keep your little grandbaby in my prayers.  I have a little granddaughter and we love her so much.  I know your heart is heavy and I hope you can get some rest.  Please let us know how she is doing.  As Melinda said, they do amazing things for these little ones.

Take care.

Anan
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Patze on May 14, 2011, 06:59:20 AM
Oh my Sass, I too will keep both of those beautiful little bundles of joy in my thoughts and prayers.

Sending you some

( ( ( H U G S ) ) )


my friend.

Take care of yourself and keep us updated, okay?

Patze
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Daisy1234 on May 14, 2011, 07:06:24 AM
Dearest Sass:

Sending prayers and positive thoughts for healing for the twins and all of your family members so that they have the strength and peace to carry on thru this most difficult of times.

With many hugs and heartfelt caring,
Daisy
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: DryEyes on May 14, 2011, 09:12:08 AM
Positive Thoughs love and hugs coming to your new grandbabies and family.   I have seen some amazing journeys from premies.  Keep the faith.   Keeping you in my thoughts   Sass
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 14, 2011, 08:36:28 PM
Oh, THANK YOU, THANK YOU!   You have no idea what your responses do for me.  I get them thourgh out the day and I feel like I have friends all over the world praying for our little Callie!  You lift my heart up and give me hope!  What a tremendous amount of support you each have been!
Callie has several problems, one of is a extremely rare mouth problem that has not been identified.  The neo-natal doctor has never seen and could not find info on it after extensive research.  Feeding is going to be a extreme problem. 
(My research has pointed me in a direction that I think I know what it is-will let you know if I am right)

Please continue your prayers for her and us! 

She and Kyndall are both beauties and so sweet!                     Blessings to you all!    sass
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: BonusMom on May 14, 2011, 08:57:49 PM
So sorry to hear that Callie has some troubles, but trust that the staff in the NICU will identify and resolve them.  So happy that Kyndall is doing well and their birth weights were so good.

My best to your family.
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: lynnmarie219 on May 14, 2011, 09:09:51 PM
Hi sass,

Sending lots of prayers and hugs your way to you and your family and hoping that the doctors find out how to help little Callie very soon. I also have seen absolute and complete miracles come out of those units! So glad to hear that her sister Kyndall is doing well and hope she continues to do so...

Thinking of you...keep us posted as you are able.
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Meld256 on May 14, 2011, 10:35:33 PM
sass,

You DO have people all over the world praying for little Callie and your family! I'm so glad our support can lift your spirits just a bit.
I'm continuing to pray and keep you in my thoughts.  Hopefully, soon the doctors will identify the problem and know how to help her.  As lynnmarie said, I've also seen absolute miracles happen in those NICU units.  The staff is highly-trained and extraordinarily caring.

Keep us posted as you can, but please try to get some rest for yourself.
Hugs,
Melinda
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: irish on May 14, 2011, 11:05:27 PM
sass, My goodness, such big babies!!! The weight will surely help them at this stage. I am so sorry that Callie is having problems. They have beautiful names.

Please know that I am praying for them both and especially for Calliles mouth issues. My grandson was in NICU for one month and the others are right---miracles do take place there. NICU is quiet, dimmly lit and has an almost spiritual aura about it. I think there is a lot of love and prayers going on amongst all the staff/families, etc that lends to a special bonding of souls.

Please take care of yourself. Will await more news. Irish ;D
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: kimbo on May 15, 2011, 03:19:24 AM
Hey sass,

I am joining in. Praying that you and family find great support and care.
Callie and Kyndall, Twins , such a blessing.
Their weight is a good thing.
There are Doctors that specialize in mouth issues I am sure and I am praying your Doctors, pool resources for the very best care.

Praying blessing and care, BIG hug, kimbo
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: eyeamdry on May 15, 2011, 03:34:50 AM
Good thoughts for your babies and family.  They weigh a good amount for twins and that is a good thing. Lucy
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: loulou on May 15, 2011, 05:24:00 AM
hi sass

Positive thoughts and prayers comin from me in uk - m heart goes out to you and family, i have grandchildren and know how precious they are.

bless you and family,

loulou
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Reanne on May 15, 2011, 10:55:00 AM
Amen, I agree with all the prayers being sent on behalf of your precious grand babies!!
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 16, 2011, 07:33:53 PM
Just wanted you to know that Callie has made much improvement.  We are waiting of Chromosone testing to give the Geneticist a clue of what is going on with her.  She has passed all her other testing with flying colors.  Brain, kidneys, liver, hearing has all checked out good.  Much relief on those issues that the NIC-U doctors had feared. She has a enlarged mouth and multiple skin tags around her ears and a few around the mouth.  She is facing multiple plastic surgeries.  Her mouth where the corners of lips should stop-did not.  So she has a large mouth, where the lips continue on into the face.  Gives her a smiling apperance at all times.  (Not a bad feature!)  She is gorgeous even with the extended mouth.  I have done quite a bit of research, from lip anatomy to clift lip.  The actual diagnosis is unknown as of yet.  But I have found several references to it.  Macrostomia is what it was once called and goes from Wide Smiles to Bilateral Congential Macrostomia to Bilateral Transverse Facial Cleft-Bilateral Transverse Lip Cleft, etc.  She has it on both sides which is extremely rare.  None of the NICU docs or nurses have every seen this condition.  It is causing her feeding difficulties, both breast, bottle and several other options as well.  Have been stomach feeding her as well as IV.  But yesterday, she pulled out her stomach tube and when the attempted to feed her with the tube out of her nose...surprise she was able to suckle much better.  She still has some struggles, but we are seeing her gain a little weight back, instead of a lose. Callie has black hair and an olive complexion.
Kyndall, her little sister is doing great.  She has light auburn hair and tiny features.  She has a tad of jaundice and lost a little weight too, but we have discovered the problem and she is now putting her weight back on too. She too is a beauty! 
Thank You all for your concerns!  It has been a lifesaver for me!

Callie had several other issues at birth, but they all seem to be resolved.  (Quit breathing, asspirated fluid, kidney and liver questions, Double vessel umbilical cord were the most serious )                  ~sass~        Prayer Works
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: hootyhu1 on May 16, 2011, 08:02:07 PM
Sass,
I am so happy that the twins are doing better! I am still sending prayers and positive thoughts your way......just think, I was a preemie only at 2 pounds 35 years ago and I turned out great! (if I do say so myself, ha ha) Miracles happen everyday!!!! Please keep us posted!-Hootyhu
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: amberjolie1 on May 16, 2011, 08:19:56 PM
So glad to hear that little Callie is doing better, and that her organs are okay! 
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: kimbo on May 16, 2011, 08:27:58 PM
Sass, Great to hear Callie is coming along. Very good, you are so active in research.

More prayers coming your way.
Hugs and blessings, kimbo
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 16, 2011, 08:50:50 PM
Thank You Again To each One of You!  A Very special group of people here. 

Kimbo, lol...yes, they call me the research queen at work and home.  I am very inquistive and have to search out for knowledge!   sass
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: BonusMom on May 16, 2011, 09:15:03 PM
So happy to hear the babies are gaining the weight they initially lost.

I understand about doing the research, especially since you have so much idle time at the hospital.  At least with doing research you feel like you're doing something useful :-)

Hang in there, sass.
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: irish on May 16, 2011, 09:33:31 PM
sass, I am ever so glad that the prayers have been answered. All the things that could have been big issues haven't at this point and that is so wonderful. Yes, prayer is answered and miracles do happen. Hope your daughter is doing ok. You didn't say anything and I am wondering how her problems are or if they are slowly resolving. Irish ;D
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: susanep on May 16, 2011, 09:38:27 PM
Prayers said, and so glad to hear good reports. All things are possible with our Lord.

susanep  :)
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Meld256 on May 16, 2011, 09:39:35 PM
sass,
I am so glad that Callie is doing so much better and many of her problems have resolved. And Kyndall is doing well, too. Sounds like little Callie has a way to go but she will be alright.  Yes, prayer gets answered and miracles happen.  ;)

My continued prayers and thoughts are with you and your family. Hang in there, dear.  We are all with you in spirit and heart. :D
Melinda
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 17, 2011, 04:54:14 AM
Irish-DIL is worn out of course...  We are seeing her gaining more strength though after some much needed sleep.  They are waiting on re-running blood to check the platelets for a few days to let her balance out.  But she is doing well.

Bonus- Ha, Idle time with twins.  no way!  I stay up all night researching.
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: shevonne on May 17, 2011, 06:24:24 AM
Sass, I am so glad everything is working out for you, your daughter and the twins!  Prayers definitely work!  Keep us posted on the ongoing progress!
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Calli66 on May 17, 2011, 07:52:41 AM
So glad she's doing better---

another Calli(e)!!! Yay!
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Scottietottie on May 17, 2011, 07:58:15 AM
Hi Sass - Good news! Sounds like Caillie is a fighter! So glad they are both doing well.

Take care - Scottie  :)
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Gonzo on May 17, 2011, 08:12:41 AM
Hi Sass,

Wish you best of luck! Also prayers from Holland coming your way. And hopefully Caillie getting more well day by day!
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 17, 2011, 05:38:46 PM
ANOTHER UPDATE: 

Well it has been a fact of my life for as long as I can remember that Prayer is our Salvation and Grace! Callie has made huge bounds since she pulled out her own feeding tube.  Despite her mouth issues, she is eating like a champ. By Leaving it all in God's hands and to his will be done, has been Callie's strength.  Kyndall is also doing marvelous.  Has regained all her weight back.  Both Girls passed the required car seat test.  So guess what?  They were both released from the hospital and our now safely at their own home. 

She still will face many surgeries with her mouth and skin tags.  But we know that she will do as fantasic with those issues as she was a true fighter to get as far as she did in such a short amount of time.  Still no feedback on what her diagnosis is. 

I have heard from people all over the world.  And the prayers from YOU have made a difference in Callie, Kyndall and My Life!  I can't wait for them to grow up, so I can tell them about all the people that lifted their little lives up to God in faith and spirit.  I am going to write each of your names in a special book, along with a print out of each of the responses.  I want them to be Ambassadors for Christ as each of you are!  To see what prayer will do!!! 

My thoughts and prayers go out to all who prayed for us...those who responded and those who did not.  I know there are many of you that prayed and  remain nameless.  But know that you are a boundless blessing to others!

May God Bless You Now and Always!

My most humble and grateful Thanks,

~sass~         :-*
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: BonusMom on May 17, 2011, 06:59:31 PM
Perhaps they should have named her Sass(ie) as she is a little fighter!

I am so, so happy that all three were released to their home, where they will all undoubtedly rest better and continue to flourish.

All my best.
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Cricket on May 17, 2011, 08:03:58 PM
I am sorry I came in late on this post - but I will lift them in prayer that they continue to thrive.  Also that your daughter will regain her strength.

It is amazing what prayer can do, remember that our Lord is the great healer and physician!!

Continued prayers for your two precious granddaughters
Cricket
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: lynnmarie219 on May 17, 2011, 08:20:08 PM
Thanks for sharing the good news...so glad that the twins were well enough to go home...that's great!

Continuing to send lots of hugs, positive thoughts and prayers your way...

Keep us posted when you are able...
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Bucky on May 17, 2011, 09:24:59 PM
Sass - what great news that everyone was released to go home today!  Dorothy said it the best (Wizard of Oz), "there's no place like home". 

May the twins grow to be healthy, happy little girls enjoying all life has to offer.

Blessings to you all.

Bucky
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Cheryl on May 18, 2011, 03:14:00 PM
Sass,
I'm thrilled to know that both babies are doing so well - at home!   :)  Congratulations to all of you.   I hate that little Callie will require surgeries; I hope they are quick and painfree.

Now, Grandma, are you remembering to take care of yourself?  About that thing called sleep...

Hugs and continued prayers,
Cheryl
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: hootyhu1 on May 18, 2011, 06:26:11 PM
Sass,

The news that everyone is home adjusting to their new life as a family brought tears of joy to my eyes!!!!! I had a horrible day today and this is the UP that I needed!!!
hugs-Gretchen
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Patze on May 18, 2011, 06:37:49 PM
That is good news Sass, good news indeed!!!!!!


Patze
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: Meld256 on May 18, 2011, 10:25:22 PM
sass,

I read your update and thank you earlier, but could not respond.  Too many tears in my dry eyes!  ;)

It sounds as if Callie has had nothing short of a miracle in her little life. I am so glad to hear that both girls are doing so well, and to hear that they were released from the hospital amazes me!  From what you say, Callie will need to go through many surgeries, but she will come through with the same flying colors with God's grace.

 I know I probably shouldn't bring faith into this forum too much, but the Lord has given me so much strength in times of crisis,  I'm sure it was the only way I made it through. And I feel it was faith and prayer that gave Callie her strength.

Now, Grandma, time for a little rest for you, huh? I send you my continued prayers for strength, comfort and peace.
Blessings to you,
Melinda
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: sass on May 19, 2011, 08:48:43 PM
Geneticist is calling it OVAS.  At least that is what she thinks.  I have done some research on it and am finding very little on OVAS.  am not even sure that I am on the right thing, as this does not describe to me what I see!  So she goes to plastic surgeon this next week.  At least, I will be able to go to that appt, as I am going Sunday and get to stay to the following Sunday. Taking a week off of work.  There could be possible spine problems in the future with OVAS occording to the Genetiscist, but she did say she is not a diagnostician and that her chromosone testing came out normal.  But OVAS would still be considered a genetic thing???  She has a mild case.  It gets so much worse for many children. 
I will see what the Surgeon calls it.  So ready for Sunday to arrive so I can go see my little bumpkins.   Please continue your prayers.  Thank You!    sass
Title: Re: Reaching Out For Prayers For Twins! =(
Post by: loulou on June 11, 2011, 09:44:31 AM
hi sass

I have been off site for  a while due to pc probs - but so warmed to read your little bumpkins are home with mum.

I still pray for continued progress for the twins and strength for you and family for times ahead. What troopers your bumpkins are. I pray for positive news about little Callie.

take care of yourself.God BLess.

Loulou