Short Bowel Syndrome - Isaiah's Story

New Beginnings

2010-07-30T04:10:00.000-07:00

Hello friends and loves ones. It is with great pleasure and overwhelming joy that I write you this summer. I do pray that God has brought each of you the same joy that He has brought our family this season. The last time I wrote we were in a situation where Isaiah's wound after already being operated on twice was still not healing properly. After writing you we met with Isaiah's GI doctor along with 6 of his collegues and their final determination was - OPERATE. As I mentioned in the last update Frank and I did not beleive that was the correct course for Isaiah. We stood our ground and held our convictions and informed them, thank you but no thank you! We had diligently sought the Lord about what we should do and knew that yet another surgery was not it. After that appointment I began laying my hands on Isaiah's incision and praying over it every single time I changed his diaper. I am beyond grateful to tell you that his incision today is COMPLETELY HEALED! As we all know God has worked mightily in the life of my sweet Isaiah many times over. This one is particularly special because it is clear that no one's hands touched him but the Master's! Since his incision has healed he has become like a new child. He began playing, talking and laughing more! I look into his eyes and I can see only love rather than hurt and pain; something up to this point in his life was all he knew. He is so loveable and sweet and wants nothing more than to be loved. On a personal note I can say with all of my heart that I have truly grown up this summer in so many ways. My eyes have surely been opened. God has brought our family out of the most trying and difficult time in our lives into a place of victory - something we always have in Him - but something we seemed to have lost. I leave the hurt of the past in the past while also remembering where we were so that I may always be grateful for where we are now. Our entire family went swimming for the very first time this summer and as I looked into each of my family member's eyes pain was replaced with joy! Thank you God for you are good and your mercy endures forever!

To Operate or Not to Operate

2010-02-26T11:06:00.000-08:00

Hi dear friends,

Thanks for being patient with me as I finally get you all updated. Our family has been overcoming a nasty virus and that has certainly made things interesting around here. Monday morning I took Isaiah to see the wound specialist at Vanderbilt Children's Hospital. While on the way I received a call from his GI doctor indicating that his nutritional labs were back and they were all perfectly normal. Praise God for this wonderful news considering most everyone involved felt confident the reason for all of the recent issues were due to his poor nutritional status. Obviously, my next question was, "what in the world is causing this." He assured me that everyone on his team were invested in this and were going to work together diligently to find the cause. Frank and I had already discussed this outcome and decided that if the labs came back normal we were not going to proceed with the surgery. We did not feel peace about having Isaiah go back into the operating room without first knowing the cause of the problems. We felt that scenario would only be setting him up for another failed operation. We spoke with the wound specialist and her very first reaction was that this could be where his stomach hadn't closed completely and gastic juices could be coming up thus causing the area to stay moist. A wound cannot heal in that moist environment, she said. It made perfect sense! Could it be this simple? Oh Lord, that would be such a relief. Frank and I are going with Isaiah this Thursday morning to meet with the surgeon and wound specialist to see if this is a possibility. You can imagine my relief in receiving this hopeful news especially considering the conversation with the GI doctor ended in addressing the fact that our next step was to being an extensive round of autoimmune testing. No matter the outcome I have determined and purposed in my heart that all will be well. I will keep everyone posted. Hope you enjoy this precious picture of Isaiah and his oldest brother and protector Elijah!

2010-02-16T04:27:00.000-08:00

We took Isaiah to the surgeon's office on Thursday morning and both he and his fellow were quite perplexed to say the least. They were unsure about what could be causing this issue. We discussed this at length and untimatley they informed us that Isaiah would need to go back to the operating room and have this cleaned and closed. They are working very hard to determine the cause of this problem. They are going to have the wound specialist come and take a look to see if they can provide any insight. Also they are contacting infectious disease to see if there could be any immune issues that could cause something like this. Turns out the labs that were supposed to determine if this was nutrition related were never done so I have to take Isaiah back to Vandy today and get them drawn along with an abdominal x-ray to make sure nothing is going in internally. The surgery is scheduled for February 23rd at 2:30pm. Thank you so very much for your continued prayers for our sweet little Isaiah!

Isaiah's Boo-Boo

2010-02-10T12:20:00.000-08:00

Here you see a picture taken today of Isaiah's incision. I have contacted the surgery clinic and he has an appointment tomorrow morning at 10:30. He is continuing to hold his abdomen and say oh, boo-boo, hurts. I know for Isaiah to complain of pain it must be intense. I will keep you all posted. Thanks again for your continued prayers!

2010-02-06T13:47:00.000-08:00

The new year is here and with it has come the same difficult challenges as the last. Our trip to Boston was postponed and because they are so backed up we were not given a definite time frame for arrival. To add to our frustion, Isaiah's last surgery which was the one to repair him from not healing properly from his feeding tube closure, has burst open on one end. There is granulation tissue coming out of the side that oppened and the other side looks as though it will open any day. You may or may not know that this happened nearly 3 months after his operation. When this occured I immediatley had the surgeon take a look at Isaiah and once again he was speechless. This particular surgeon was the same one Isaiah has had all along. He actually found the deceased bowel initially that nearly killed Isaiah. We have heard him say far to many times, "I've never seen this happen" and here we are again. He agreed that the major concern was Isaiah's nutrition status. He instructed us to keep a tight pressure bandage on the site and keep a very close eye on it. He also referred us to his Gasterointerologist which we have seen. Because of this issue arrising and the fact that Boston is severly backlogged on clinic visits we have been in close communication with our team there and they have been working with our team in Nashville. This is great in that we may receive the care Isaiah needs without having to go to Boston. Only time will tell however. His GI doctor ran many labs and even 24 hours worth of stool samples. The results all came back within normal ranges. Although that is great news we are still unsure what exactly what is causing his body to not heal properly. At this point I am awaiting a call back from his GI doctor as well as his surgeon in Boston so we can futher address this issue. Isaiah's overall demeaner is good, he is happy and playful however his pain tollerance is unlike any I've ever seen. He will hold his incision often throughout the day and cry saying, "boo-boo". I know for him to say this it must be causing him a tremendous amount of pain. I ask that you would all please keep Isaiah and our family in your prayers. We are praying that God will give us the wisdom to seek the appropriate plan for Isaiah. Certainly we wish not to go back to Boston and separate our family once again, however if that is what is necessary we will. This issue coming up gave us the opportunity to have our team in Boston involved while still being here at home.
From a personal standpoint I would like to share that I have desperatley searched for an "end" to all of this. It is truly impossible to describe the turmoil, the stress, the heartache, etc. that these last two years have brought to our family. I am still holding fast to my profession of faith that God will continue to complete the work He has begun in Isaiah while also coming to terms with the fact that it has not occured in the time frame I desire. I have discovered much to my discomfort, that trials indeed expose charachter. I am a work in progress and I am so very grateful that God does not give up on His children the way they give up on Him. His love, mercy and grace are unending and they never fail. I am eternally grateful for this truth. I have often wondered in all of this, where has my faith gone. I have decided however that even though I may not feel it, it is there. At the end of the day I decide that whether I know how or why all of this happened or not I still trust that God's plans and ways are higher than Callie's and I refuse to give up on Him or myself. I am not the mother I desire and strive to be but I know I will keep trying. Day in and day out come what may. In addition to the many difficulties have indeed come many miracles. I do not forget that there are so many mothers and fathers dealing with far greater disabilities, or even worse. My heart is always heavy for these precious parents. I know all of this was not for nothing, there is a plan whether I see it or not. Although I love to write and feel confident that I express the points I am trying to make, it is rare that I express my self, my heart. I thank you for allowing me to do that and I pray that you are blessed. May this year be one that you call all reflect on as being filled with love, joy and peace despite your circumstances.
I will keep you all posted on Isaiah's progress and we sincerley appreciate your continued prayers!

In His love,
Callie

Hope for the Holidays

2009-12-14T13:47:00.000-08:00

Season's greetings everyone, I pray that this long overdue update finds each of you well. I would like to start by letting everyone know that we will no longer be using the Caringbridge site we once had but will now post all updates on Isaiah through this blog. Please sign up as a follower so you will be notified when there are updates.

Since we last spoke Summer has gone and Fall is on it's way out. Each season represented the same in our lives, seasons - some with great difficulty and others with much rejoicing. Isaiah had his 10th operation in October to close the hole in his stomach where his feeding tube once was. We were so excited for this operation; it seemed to represent a much anticipated "end" to all we have been through. This did not turn out to be the case. One week after his operation his incision became angry red and began draining. Upon discovering a high fever we took Isaiah to the ER to discover that it was infected. The surgeon re-opened his incision to allow for drainage and he was placed on srong antibiotics. The hope was that the infection would come out and he would eventually form new healthy skin where the incision was opened. In that all to familiar pattern we noticed that his incision site was not healing. Granulation tissue continued to come out which wouldn't allow new skin to grow. To make a long story short he soon had another operation (after unsuccessfully trying silver nitrate to cauterize the area)to remove the tissue and close the site once again. Isaiah's body in the past has often had difficulty healing and in most cases it was due to his poor nutition status. This got my wheels turning so I began asking questions. After recalling Isaiah's past medical history and talking with several surgeons concern arose that Isaiah could be malnourished. After a lengthy conversation with his surgeon in Boston and after a significant amount of research we too beleived Isaiah's nutrition status is comprimised and he may very well be malnourished. This made so much sense to me. Over the course of the time he has been home there have been so many strange things that have made me uneasy. Isaiah's abdomen is so large while his limbs are skinny. He stools anywhere from 8-12 times each day with uncontrollable diarrhea. Amoung many others he has extreme fatigue and cannot come close to the amount of energy levels his brothers maintain. After dicussing all these things with Isaiah's medical team and after much prayer we have decided to take Isaiah back to Boston to be evaluated through their Short Gut Clinic. When we left Boston we were supposed to have him seen through this clinic however by this point in our journey we were spent and decided to have things handled locally. After this issue of difficulty healing arose we became aware that things weren't going exactly as we thought. I beleive this trip on January 13th will be exactly what we need in order to evaluate Isaiah's current status and help us determine an appropriate plan for him. As you all know Isaiah has a small amount of his intestines remaining and short gut syndrome is so difficult to treat. I know with God's wisdom we will come up with a plan that will work for Isaiah.

We wanted to create this blog to keep our loved ones better updated as well as provide an outlet for other parents facing similar challenges a place where they can find life saving information or at the very least - hope.

Despite challenge after challenge Isaiah continues to fight - and he is the toughest guy I know. He is currently in speech therapy once per week but has no other therapies. Physically (albeit with much less strength) he has met his milestones, crawling, walking, climbing, etc. He has such a contagious smile and more importantly zest for the simpler things in life. He is a daily reminder of God's goodness and continues to teach me about what is really important in this life!

We will keep you all updated during our trip - please pass his blog on to others.

Archives From Caring Bridge 1/8/09-7/17/09

2009-12-14T07:58:00.000-08:00

Thursday, January 8, 2009 9:17 AM, CST

Happy New Year! It has been much too long since I've updated you all, so please forgive me. I trust that each of you had a very blessed Christmas and we pray that this year brings God's abundant blessings to each of you!

Isaiah is doing very well and continues to thrive! He's had a few bumps in the road but he just keeps on going; like he always has! Recently he overcame a bout with bronchialitis which landed him in Vanderbilt for a day (but only one day praise God!) He is feeling much better now and is beginning to act like his joyful self again. We are now giving him bolus feeds during the daytime so he's off the pump and can crawl around the house, which he loves to do. He's still on continuous feeds at night because he needs all the calories he can get. His last appointment with Gasterointerology revealed that he had lost weight but we are standing on the promises of God that his body is absorbing the nutrients from his formula exactly as it should resulting in weight gain for him! He has his little army crawl down pat; he's everywhere! He gets right in the middle of playtime with his brothers. He recently began sitting up on his own for about 3-5 minutes at a time! This is tremendous progress! He can also stand on his legs while I hold onto his hands, for about a minute! He is growing so very strong! He is such a blessing and we are madly in love with him! Joshua & Elijah also battled the illness Isaiah had but they are both doing much better. We are still trusting God for Frank's job...we know it will come in God's timing. I honestly don't know what I would have done without Frank being here so I know God's got it all under control. We shall wait patiently and rejoice when it comes! It's on the way!! It is time for another appointment so I must go.

Love, Callie & the boys!

Saturday, March 14, 2009 2:52 PM, CDT

Hi everyone, I just wanted to send you all some amazing news on the Daruk front. Isaiah is doing truly, truly wonderful! He is gaining weight beautifully and can now do the following:

Sit up by himself
Crawl (no longer just the army crawl)
Transition to sitting from crawling by himself
Pull himself up to standing from the floor to just about any piece of furniture
Raise his hands in the air when we say "praise God"
Waive hi and bye upon command
Give kisses upon command
Blow's kisses upon command
He's doing so much I'm trying to make sure I have it all here. He's blossoming and it's so beautiful to see. He doesn't really "babble" all that much but he will. He has two other brothers that do enough of that for all three of them. He is currently in feeding therapy and is doing very well. He will take solids but still has trouble swallowing if the peices are even as big as a raisin. He can handle pured food much better and knows to swallow that. He loves to nibble on crackers so he can go at his pace. He is not yet intersted in liquids so 99% of his nutrition is still formula given by g-tube. He is a very happy baby who of course loves attention. He always has as well he should! Joshua is a big boy now as well and is completely walking on his own. By the way the twins are 15 months old now. Elijah is just a wonderful big brother. He adores his twin brothers and is such a huge helper around the house!

I'm grateful to report that Frank is now employed! We have truly been blessed by God at every turn throughout this entire situation and we are ever so grateful.

I am now fully aware of just how much work 1 year old twins and a 2 1/2 year old boy are! Wow...I just couldn't possibly describe it. My secret? Getting up each morning and even if it's 5 minutes...giving the Lord my day, asking for His strength and grace to be the very best mother I can be that day! It is absolutley impossible to have a successful day when I don't do this...I know, I've tried! God's grace is so wonderful, I don't know where I would be without it. In the past four weeks since Frank's been at work I have literally kept the house very clean, the laundry done, made breakfast, lunch and dinner for Frank and the children. This is no small feat when you through in the tons of other things we mom's must do in a day. I say this not to pat myself on the back but to encourage other mothers who read this! With God all things are possible! I couldn't do it any other way!

We love each of you and pray that all is well with you guys! Thanks for being so patient concerning this update!

By the way, most of you may know this but if you are on facebook look me up (Callie Daruk) and there I have several new pictures of Isaiah and the boys!

Love, Callie

Friday, July 17, 2009 12:05 PM, CDT

Hello at last everyone! First of all I realize you've all been wondering how Isaiah is doing and I hope you can forgive me for taking such a long time to write you. I am super excited to write that the reason for the large gap between our last entry is due only to the fact that "normal" life has been going on around here! As I've mentioned before it's nearly impossible to describe what life is like with 3 boys ages 3 and under! Elijah turned 3 on June 15th and the twins are now 19 months old. We have truly tried despite the incredible challenges we face to celebrate each day and the gift and miracle we've been given.

Isaiah is continuing to do so wonderful. He is starting to walk, yes, you read correctly, WALK! He is getting his balance down and once he gains the mental confidence to do it he'll take off. He has a few words in his vocabulary now: ball, car and juice (the essentials for a little boy). He can also say gone gone.

He is still working with Tennessee Early Intervention, speech therapy however he has been dismissed from feeding therapy and physical therapy because he's doing so well. He has not had a g-tube feeding in over 3 months thus he is taking everything by mouth. At his last GI appointment he had grown several inches in height and had gained just over a pound. He finally appeared on the growth chart (just barely but he's there). He is still quite thin and stools frequently but we are so encouraged by the fact that he had gained weight. As you all know he only has about 1/4 of his intestines so we have to closely monitor his fluid intake. If he drinks to much he will stool out, if he drinks to fast he will stool out and if he drinks juice or really anything other than Pediasure he will stool out. Stooling out is a big problem because when he does that he doesn't absorb the essential vitamins and nutrients from his food, thus he doesn't grow. This is an ongoing battle however one that I am happy to report is his biggest problem. This time last year we were facing much much worse situations and I am so grateful for where God has brought Isaiah. He absolutley loves life and has a way of passing that concept on to everyone he's around. He loves to laugh with his brothers and holds his own quite well with them.

I also wanted to share something exciting with you all particularly those of you who may live in our area. We are starting a support group for parents of special needs children in the Robertson County area and will be holding our first meeting soon. I am so grateful for this door the Lord opened up and I look so forward to the opportunity to be an encouragement to parents in this community. I ask that as the Lord leads please pray for me in this endeavor; that God's will be done, His name be glorified and that parents will leave each meeting with hope and love!

I will be updating my facebook page soon with recent pictures of Isaiah (we've had trouble getting them on this site - they are too big and my computer will not let me resize the photos) so please check them out.

We hope this journal entry finds each of you doing well. We love you all and thank you for all the love and support you've given our family.

Callie

Archives From Caring Bridge 12/2/08-12/15/08

2009-12-14T07:57:00.000-08:00

Tuesday, December 2, 2008 10:11 PM, CST

Never Ending Thanks

Just when we think things can't possibly get any better concerning Isaiah we are overwhelmed with even more amazing news. I recally many times over the course of this journal writing the exact opposite of this statement. Through nothing but the goodness of God we have found ourselves on the other side and it is indeed more glorious than imagined. Three major developments this week:

1. Isaiah is having surgery on Thursday morning at VCH to have his central line removed - whoo hoo!

2. Isaiah ate an entire container of stage two (the big one) sweet potatoes! Yes, you read me right!

3. Isaiah is allowed to begin bolus feeds on Sunday (this means we can try to feed him through a syringe into his g-tube every couple of hours rather than him being attached to his pump all day long)

Isaiah has a suck/swallow study on Friday to determine his readiness for liquids via a sippy cup. We're very excited to see how the results from this study fit into his bolus feeding plan. We will most likely give him so many cc's per syringe (via the g-tube) and so many cc's via his sippy cup. This along with him successfully gaining weight and having his central line removed are huge...huge feats! They are accomplishments that many parents of babies with short gut syndrome long for and I praise God that we are seeing! The best news of all...his liver function labs are literally near perfectly normal! Today we found out his total bili is 1.1 and his direct bili is 0.6!!!! His liver enzymes were amazing!!!!! Although the labs are wonderful, no lab could replace what his precious little face tells us and that is...I love this place! He truly has grown more (in every way) since being home than his entire life combined. The other day he was determined to reach Elijah's sippy cup and he got on one knee and scooted 2.5 feet and got it. That too was an incredible feat! Isaiah loves life at home and it's written all over his face. Our Thanksgiving holiday was one for the history books; I will never forget looking at each of my boys faces and feeling such love, such appreciation and such relief. I hope each of you had a day to remember as well.

I'll update you again soon on Isaiah's surgery!

Love to all - Callie

Wednesday, December 3, 2008 11:11 AM, CST

Urgent Prayer Request

Please continue to lift Isaiah up in your prayers as we just got a call from Vanderbilt that Isaiah's blood culture returned positive for both gram negative and gram positive bacteria. As a result we must take Isaiah to the hospital immediatley for admission and antibiotic treament. We refuse to allow any dart from the enemy to deter us from our stance of complete healing and restoration for Isaiah. More news to come soon.

Monday, December 15, 2008 2:41 PM, CST

Hi everyone, please forgive me for leaving you hanging for so long. Isaiah was in fact hospitalized for a blood infection but was released after 3 days. His surgery to remove the central line went on as scheduled and went very well. It was determined that he would need to have it replaced with a picc line in order to treat him for 10 days worth of IV antibiotics so before we left that was placed. He is now off the antibiotics and the line has been pulled. He's doing wonderful and is so happy! He is also on bolus feeds (versus continuous) during the day time. It is so nice to have him completely off all "cords" during the day. He's free to roll around and army crawl across the floor just like his brothers. Big news: The boys turned one on December the 10th. We had a small party with just family (due to infection risk) and it was truly amazing. Without a doubt the most special party I've ever hosted! What a night of rejoicing we had. He had his first real bath (in over a year) last night. I once again have nothing but great news to share and we're so very grateful!

Speaking of my angels...they're up from their nap. See you soon!

Archives From Caring Bridge 11/5/08-11/25/08

2009-12-14T07:56:00.000-08:00

Wednesday, November 5, 2008 2:27 PM, CST

Life At Home

What is life like at home, with all of our little ducks in a row you might ask...blissful...joyful...heaven on earth! I am truly in awe of just how wonderful our life has become considering where it has been over the past 11 months. That's right, next months our twins will be 1 year old. Frank & I would often lay in bed and ask each other, "what do you think life will be like when Isaiah comes home?" We now know our greatest imaginations couldn't touch the reality of what it is. Isaiah is adjusting to life with his family very well. He loves his brothers although a bit taken back by Elijah's aggressivness (he is a 2 year old boy after all). He is still on the same sleep schedule as the other boys and my goodness what a blessing that is. To others the idea of life with 3 boys under the age of 2 and 1/2 seems overwhelming; to us...it's the easiest thing we've done (right now anyway). The hardest part is over and everything we do, daily chores and tasks, caring for Isaiah's special needs, etc. seems so easy in light of everything else. I wake up with a smile on my face and that same one is there each night as I lay down. My heart leaps with happiness as I slip out of my room to secretly watch each of my boys, particularly Isaiah sleep. He's here...he's really here I think to myself. If only I knew what he was thinking! I am so happy that my precious son is no longer having to experience life in a hospital. No contant interuptions, no longer the sound of monitors filling his room and more importantly no longer having to lay in a bed with nothing but unfamiliar faces. His first pediatrician visit went great; Dr. Eidson was so happy to meet him! His first GI appointment was yesterday and it went well also. We have a one week plan of getting him to full-feeds. Hopefully within a few weeks we can go back to the OR for the last time and have his central line removed, which would mean no more TPN! I know this day will come soon. Our family also experienced a day we've been waiting for all this time...each family member went to church as a family for the first time! I know you're next thought is, what were you thinking. Well, we walk by faith and not by sight and could not let this day pass without honoring our God for all He has brought Isaiah through! We were extremely carefull and no one touched him or came near him. His welcome home cheer could be heard across the town I am sure! I was one big goose bump! I honestly could've ran laps around the church and had I not had to keep a watch on Isaiah with Frank I probably would have! So, I hear my precious boys waking so I must go now. There's so much more to say but there will be time again soon. We have not forgotten each of you and your unending love and support for our family during this time. Please continue to pray for us and beleive with us for the job God has ordered for Frank...talk about walking by faith! God is faithful and I know that I know He is a rewarder of those who diligently serve Him.

Love to all, Callie

Tuesday, November 18, 2008 10:24 AM, CST

A Time of Thanks

As I write I am sitting in my clean kitchen (thanks to my wonderful husband) with the sun shining through the window listening to Woody say "There's a snake in my boots." Isaiah and Joshua are both taking a nap and I am thoroughly enjoying this peaceful moment. As I approach this time of giving thanks I am more grateful than ever before. When I think about our difficulty with children; from Elijah's birth challenges, his colic for over 6 months and the obvious difficulties with the twins I realize that although there was and is much to be frustrated about, there is far more to be grateful for. It truly has been in these moments that the master potter has shaped and molded a quite complicated and mishappen piece of clay into a masterpiece (still in progress for sure). The reality of 3 children under 2 and 1/2; one with special needs mind you; has sunk in and it is without a doubt the most difficult task I have ever attempted. It has been by and will continue to be by the grace of God that I will succeed at being the mother God has called me to be to these three amazing boys. They are called with a purpose and it is up to me to ensure that destiny is acomplished. At times this realization is difficult to digest; I feel so unprepared and unqualified. The great news is that it doesn't matter how I feed; for I have been made the very righteousness of God in Christ Jesus and by Him and through Him I can and will do it. So, I cannot possibly begin to give you an exhaustive list of all that I am thankful for but there is no doubt that I will try my very best this year and always to live a lifestyle of praise in all I do. It cannot go without saying that every single one of you are on my list. I have not and will never forget the tireless hours you've all spent on your knees for Isaiah and our family. As you all know the boys first birthday is coming up and upon a few conditions we may get to have a "big" party for him and we would like to invite each of you. The party is not as much to celebrate the twins first year (glory to God) but to celebrate and thank each of you. More details will come late about this!

So, Isaiah is doing really really well! He's up to 46 cc's per hour on tube feedings and is receiving TPN through his central line every night for 10 hours. For the third time his test came back positive for c-diff so we've beleliving his body will respond to a different antibiotic! He is up to 18lbs. 7oz. which means he's gaining weight, praise God! He's came so far developmentally since being home. At first he didn't like tummy time and know he's rolling all over the living room floor. I have to drag his IV pole around to catch up with him! We're going again to the GI doctor this afternoon and I know we'll receive another great report. So, more news to come later but I just wanted to give you all an update.

Also, go to: www.carepages.com and you can see more pictures of the family. You will need to sign up in order to view them. His page name is: Isaiahdaruk

If you have any trouble seeing them let me know.

Tuesday, November 25, 2008 1:22 PM, CST

As we near the Thanksgiving holiday we have even more wonderful news to share. Isaiah continues to thrive since being home. So much so that he has:

Gained weight beautifully
Gotten completely off TPN - glory to God
Successfully acheived 49 cc's per hour (2 cc's away from full feeds)
Nice healthy skin (no more terrible diaper rash)
His total bilirubin has went down to 2.9 and his direct is 1.5 whoo-hoo
His skin tone and his eyes are completely white
All of his labs continue to improve
And the best of all...he said Ma-Ma (I truly don't think I've ever been so excited in all my life!)
We are most grateful to our Heavenly Father for continuing to heal Isaiah's body and keep him right where he's always been...in the palm of Daddy's hand!

Archives From Caring Bridge 10/28/08-10/30/08

2009-12-14T07:54:00.000-08:00

Tuesday, October 28, 2008 9:31 PM, CDT

It's official - Isaiah is coming home tomorrow and as you can imagine we are beyond excited!!! I will update you all as soon as I can!!

Yaahhhhh! Praise God!!!

Wednesday, October 29, 2008 10:07 PM, CDT

Isaiah is home! It's true, it's really true! He is on the other side of my bedroom wall sleeping peacefully. There is so much I want to say right now, however I have only a quick minute. I just wanted to let you all know that we appreciate all of your love and prayers. They have truly enabled us to have this most beautiful night! Much more news to come!

Thursday, October 30, 2008 8:15 PM, CDT

A Night To Remeber

I had only a few minutes to update you all last night but as I mentioned there are so many more beautiful details to share. After what seemed like the never ending day yesterday the time finally arrived where I loaded up the boys in the van and headed to the airport to await my Frank & Isaiah's arrival. I of course arrived over a hour early; we paced, we sat; we paced and then sat some more. And then, the very best and most memorable moment and my families like arrived. I spotted Frank towering above the crowd as usual, and then a second later I saw the most precious little boy. It was that "movie moment" where everything around me stood perfectly still and absolutley no one else existed but us. Frank ran, I ran and we truly had a heavenly reunion! I couldn't stop kissing Frank and then I knelt down with such joy and love in my heart as I rubbed little Isaiah's head and said, welcome home my son, welcome home! Elijah spotted his Daddy almost immediatley as well and shouted "Daddy, Isaiah's home!" It was so adorable. Joshua just smiled as he saw his twin. We got Frank's luggage and headed to our van with smiled so big they hurt! Our way home was history in the making. It was our first time in any vehicle as an entire family. We came home and Isaiah just smiled. We immediatley had to begin several medically necessary procedures for Isaiah and I will not lie it's quite intimiading, but not impossible. With God all things are possible and His grace was and is more than sufficient. Isaiah's grandparents on both sides as well as his primary nurse Meghann came to join in on our celebration. We had a few challenges but in the end everyone was in bed fast asleep by 9:00pm. Although Frank & I were up throughout the night checking for dirty diapers, giving meds and hooking up his central line each of our boys sleep peacefully with no interuptions throughout the night, praise God!!! Our day today continued to be even more amazing and wonderful today. Isaiah & Joshua took their morning nap at the same time and Frank, Me, Isaiah, Joshua & Elijah all took a two hour nap this afternoon - at the exact same time! My, my what an amazing blessing this was. Isaiah has blended in so beautifully to our existing schedule and I truly thank God for that. The boys love him and Elijah seems to understand that Isaiah has "boo-boo's" and he is not to touch things. There are so many medical things to take care of for Isaiah; it's really unbelievable. Beginning tomorrow morning we will have private duty nursing (6 days a week - 8 hours a day) and what a help and a blessing this will be. It is absolutley certain that someone must be with Isaiah at all times. Our families have been amazing and I thank God for them. They've been here helping out with every detail big and small. So, I need to go now but I wanted to share these precious moments with all of you! Isaiah has his very first pediatrition visit tomorrow morning. We know we will receive a good report! I am truly in awe and completely and uterly speechless right now. All I can possibly say is that all honor and glory go to our heavenly Father who always causes us to triumph in Christ Jesus!!!!!!!!!!!!!!

Archives From Caring Bridge 10/16/08-10/27/08

2009-12-14T07:53:00.000-08:00

Thursday, October 16, 2008 7:43 PM, CDT

Well, our "Poopie Party" and praise for our heavenly Father continues! Isaiah is doing absolutley wonderful and is up to 17cc's per hour already. He is stooling as he should with no vomiting and a soft abdomen. His little bottom is very raw with not being used to stooling there so please pray for strong skin! Frank is having to apply a four step regimine to his skin and he's still extremely raw. That of course is painful for Isaiah and is causing him to be a bit irritable. He is otherwise just wonderful! The plan at this point is to remove his central line (which will have to be done surgically) before he goes home. He should get to come home by Thursday or Friday of next week. I am absolutley elated! I am so grateful for the many, many miracles God has performed through Isaiah; what a special baby he is. I will keep you all posted on the wonderful news to come as soon as I receive it.

I love you all,

Callie

Wednesday, October 22, 2008 1:41 PM, CDT

Hi everyone, just a quick update to let you know that the "certain" go home date of tommorrow has yet again been pushed back. As someone said perfectly yesterday it feels as if we have run this extremely long race and right as we get to the end, the finish line keeps getting pushed further and further out. There was apparently some miscommunication about the time frame in which Isaiah could attain full feeds. We were told that we could bring Isaiah home with a central line and on TPN if we insisted but they would not recommend that. The plan has been and still is to get Isaiah to full feeds which is 42 cc's per hour at 30 calories. Right now he's at 42 cc's per hour at 24 calories. As long as he continues to tollerate the increases in calories (which I know he will) he will be at full-feeds on Saturday. He must have a full 48 hours to make sure he's gaining weight and they can remove the central line and then he can come home. One other glitch was that he still tested positive for c-diff (the same intestinal infection that postponed his reconnection the last time). This can be a very difficult infection to kill and the prayer at this time is that this infection is not colonized in Isaiah's body. Either way, infection or no infection WE ARE BRINGING OUR SON HOME next week. With all do respect if any of you are the ones who've said this to us, but so many people have told me and Frank - it's just one more week. It is not just one more week to our family! We have always and will always do what is in Isaiah's best interest. Now that Isaiah is reconnected, the isues he's dealing with can be handled here at Vanderbilt. The morning all this information came up (this Monday morning) I awoke with such a strong sense of urgency to pray. I didn't know why however I obeyed. Despite this crushing news, I marvel at the love of the Father and how He prepared me for the news.

Monday, October 27, 2008 6:02 AM, CDT

Hi friends and family,

Here's the latest and final news on Isaiah's departure from the Children's Hospital in Boston:

This past Saturday it became apparent that Isaiah was not quite going to be able to tollerate full feeds. He was able to achieve the volume but not the calories. His stool output remained within normal limits (although on the very high end) but as they increased calories he began to stool so often that his little bottom became so raw it would bleed. It was in his best interest to leave him at 24 calories at this time. The decision was then made to begin discharge preparation for this Wednesday. This means Isaiah will come home with his g-tube of course as well as a central line where he will receive TPN for 12 hours per day. Frank is working so hard to learn all he must learn to care for Isaiah's central line. He truly is an incredible Dad! Because he will have a central line we will have private duty nursing which is wonderful. We will certainly need all the eyes and hands we can take. For those of you who do not know on Monday October 6th, my birthday, Frank lost his job. He had exhausted all of his FMLA and because he had to come back to Boston for Isaiah's surgery, thus needing more time, his position, pay, hours, insurance, etc. was no longer available to him. I say this to ask you to continue to pray for our family and agree with us that our precious heavenly father has so much more in store for Frank. As you men especially can imagine this is extremely difficult for Frank. I am so grateful that he has had this time in Boston to take care of Isaiah. I know they've bonded and Frank has felt useful and helpful! As my husband says, God has brought us through too much to drop us at the finish line. He most certainly will not do that. We've always been right in the palm of his hand. He has supplied every need we've ever had, thanks in large part to each of you, and we know that we know that we know He will see us through. We always try our best to look at the joy in things and I am thrilled that now Frank will be home (for however long) and we can enjoy our family, WHOLE, together!

So, today will be an extremely busy day for Frank in Boston as he works to ensure all the pieces of the puzzle fit together. Honestly, there should be NOTHING holding Isaiah's arrival back this time and I declare in the name of Jesus that NOTHING shall by any means come against this.

More news to come about our homecoming!!!!

Love, Callie

Archives From Caring Bridge 10/9/08-10/12/08

2009-12-14T07:51:00.000-08:00

Thursday, October 9, 2008 7:32 AM, CDT

Hi all,

Isaiah arrived in the surgical department at 6:40am this morning. I held and snuggled with him while we watched Clifford, awaiting the anesthesiologist. I prayed over him as I rubbed his adorable and perfectly shaped head (thanks to his helmet)! The decision was made to go with an epidural (which he's had before) as well as back up pain medications via his IV. I signed the consent which read...exploratory surgery, bowel reconnection, possible liver biopsy and circumcision. He was given a nice dose of medication to help him relax and he was wheeled to the operating room at about 7:50am. I should hear updates as often as 1 and 1/2 hours so I'll keep you posted. I am confident that Isaiah most importantly is covered in the healing and wonderful hands of God Almighty as well as all of your prayers. For that I say THANK YOU! More great news to come soon.

Love you all!

Thursday, October 9, 2008 5:30 PM, CDT

Isaiah's surgery went beautifully and he is sleeping so peacefully right beside me now. Dr. Puder said everything went well and he discovered the reason his reconnect didn't take the last operation. It's a bit complicated so I won't go into all the details on that but the most important thing is that he's doing just great!!! It's so wonderful to see his tummy nice and flat where his large ostomy once was. The next step is for Isaiah to begin stooling from his rectum! I told all the nurses when he does we're going to have a "Poopy Party"!!! Feeds will be restarted before long as well. I cannot begin to express the joy in my heart right now. I feel for the first time in the long time that the end of all of this is very near. Glory to our Father in Heaven who has richly blessed us. I'll keep you posted on all the great news!

Sunday, October 12, 2008 9:30 AM, CDT

All glory and praise to our Heavenly Father for the news we are about to share! Isaiah poopied!!! To be exact, three times and counting. And yes we did have a party! He's doing absolutely wonderful, laughing, playing, happy and completely off all pain medications. Glory to God! They are mostly going to start feeds today with Pedialyte. They predict about a week and a half and he will be able to come home!! I will be returning home tomorrow to see Elijah and Joshua after 16 long days and I am so excited to see them. Frank arrived here on Friday and will be staying with Isaiah until he brings him home.

Love to you all! Callie

Archives From Caring Bridge 10/1/08-10/8/08

2009-12-14T07:49:00.000-08:00

Wednesday, October 1, 2008 6:56 PM, CDT

Sit down and buckle up; the ride just got a little bumpier. So, a couple of days ago test were run on Isaiah's stool to rule out any type on infection. This afternoon Isaiah's medical staff informed us that the culture for c-diff (a intestinal infection) returned positive. What does that mean? He cannot have surgery on Friday. The surgeons do not want to take any risks and they have postponed his surgery for one week. As of yesterday it was scheduled for 1:00 on Friday and we as you could imagine were so excited about it. Now, we are having to adjust our emotions and schedules to accomodate this new news. Isaiah was started on antibotics this afternoon to combat the infection. Honestly, I am very frustrated right now to say the least. I spoke with my pastor this afternoon and as always he helped me to put things in the proper perspective. I do not understand why things have to be so difficult for Isaiah; I truly do not. I trust however that these things are happening by design even if I don't know the cause. Frank & I are supposed to meet with Isaiah's doctor tomorrow to get a better idea of when he is expected to recover and be ready for surgery. His prolaped intestine still needs to be repaired surgically however as long as it doesn't change in color it isn't emergent. We do not want to leave Isaiah here alone however Frank & I both have important matters to address at home. Frank's employer has truly been great throughout this however as you can imagine they still have a business to run and things are not looking great for him there (no worries though, I know God will provide; He always does). Grandparents are caring for Elijah & Joshua but they are not feeling well at all and only arranged their schedules for the 5 days we were supposed to be gone for. I think the plan at this point is for Frank & I to return as scheduled (except with one less person) and one or both of us will return for Isaiah's surgery. I miss Elijah & Joshua so very bad. It literally hurts when I think about them but I know they are in God's hands so I must continue to trust that they are safe and well cared for. As a mother it's difficult because no one can compare to Mommy. Please continue to pray for our family and send us messages; they really encourage us and we truly need them right now.

Standing in faith and knowing we always have the victory in Christ Jesus,

Callie

Saturday, October 4, 2008 6:24 PM, CDT

News From Boston

Isaiah's doctor contacted my last yesterday afternoon to inform us his surgery has been re-scheduled for next Thursday. I do not know the time at this point but I'll keep you posted. Isaiah seems to be feeling well overall. He seems to become irritable when messed with but otherwise very happy. Honestly, it could just be that he's overtired. I've been sleeping in his room (he's been moved to a private room now that he's on precautions) and his pumps literally go off every two hours. It's very disturbing to me and I know it is to him. It's true that he's a little more used to it than me but he moves and squirms just like I do when they go off.

I am very hopeful and confident that all will continue to go well for Isaiah until his surgery and beyond. It has too, it just has too! I must say that this trip has been such a rollar coaster ride. One would think that we are used to the many bumps we've had along the way yet each one still takes you breath away. When you combine that with the fact that you are 1200 miles away from the rest of your family it it so very difficult. I suppose I felt I had seen a diversity of illnesses after practically living at Vanderbilt Children's Hospital for 7 months but honestly that was NOTHING compared to the degree and spectrum of illness I've seen here. I have seen children whose faces and heads were severely deformed, childrens without noses, limbs, hair, ect. The other day I saw a child whose head was literally cone shaped and grosely deformed. When I saw it I literally gasped without meaning too. I cannot express the hurt I have felt as I walk the halls in hopes of getting "away" instead I want to run back to Isaiah's room. I met a lady this evening in the restaurant here whose 6 month old son has glasses. He was adorable and after talking to his mom I discovered that there are many strange things going on with him that do not add up. He has severe developmental delays and he is here so the experts can connect the dotted lines in an effort determine what is going one. This was her first child and she should be at home playing with him on her floor surrounded by toys, not spending every moment here. I do not understand why these things happen to sweet and innocent children. I have seen things that made me want to walk out on the busy city streets and scream. I do not think I can bear to hear one more person say "God does not put more on you than you can bear." Although I still have many questions what I do know is that the God I know and love would not do this to his children! Would you do that to yours? Absolutley not, not for any reason. How much more does He love us? If there were any way He could stop it He would do it in a second. If there were anyway He would make us love Him and accept His son's love He would but He cannot. I do not know exactly why His hands are tied but I know they must be, they must be. I don't often share these intimate thoughts but I felt it appropriate tonight. I love you guys and what I want to accomplish in sharing all of this is to please, please take my word on this...kiss and hug your children every second you get. Thank God at every remembrance of them for their health. If you could walk in our shoes for just a minute (and I wouldn't want you too) you would have such a greater understanding of what it means to appreciate their health and to appreciate them!

Thank you all for your touching messages; I have been moved to tears by them. Keep them coming; I need them!

Love you,

Callie

Wednesday, October 8, 2008 2:43 PM, CDT

Hello all, I wanted to give you a quick update to let you know that all is well with Isaiah is surgery is scheduled for 7:30am tomorrow morning (unless an emergency surgery were to bump him). I am overjoyed and expecting a better than the best praise report from Dr. Puder tomorrow. As I know each of you are please continue to pray for precision and wisdom for every person involved in Isaiah's operation. More news to come very soon.

Love, Callie

Archives From Caring Bridge 9/22/08-9/30/08

2009-12-14T07:47:00.000-08:00

Monday, September 22, 2008 9:32 PM, CDT

Hello again,

I am writing this entry with all the joy my heart contains. It seems that we are closer than ever to bringing our precious little Isaiah home. His is now up to 40 cc's per hour at 30 which is considered full feeds. Originally full feeds had another definition however after evaluating his weight gain they determined that he was fine at 30 calories and that he needed to go up more on his volume to ensure proper hydration. Glory to God he is at full feeds which also means that on Sunday he was taken completely off TPN and the Omegaven! Whoooo! I cannot being to express how wonderful that is! His nutrition is coming soley from formula! I give God all the praise for this wonderful news. He is faithful as always. Isaiah weighs 16 lbs. 5 oz. and continues to gain each day. At this time Isaiah's doctor wants to watch him for another week or so to make absolute certain he is tollerating his feeds well and to ensure his ostomy output is within normal limits. He full expects within 2 weeks that he will be home in Tennessee! My goodness, if you could see the smile on my face right now. They are already arranging nursing care once he gets home (as mentioned earlier he will still have his ostomy, g-tube and central line to take care of. He will be home and that's all that matters; the rest is a piece of cake. Needless to say we are just beside ourselves with joy and thankfulness!

Also, there are some other wonderful things to share with you. On Wednesday September 17th Frank & I went to the Tennessee Secretary of State's office to officially begin Daruk Ministries. I must say the Lord had already birthed it in our hearts long ago, however we, at His leading completed this step. From the very beginning of this experience we knew the Lord was leading us to help others, we just didn't know in what way or when. Our mission is to offer hope, love and support to families enduring critical illness. After staying at the Family Inn in Boston we knew the Lord was leading us to open a home in Nashville to house displace familes while their loved one is receiving medical treatment. I am also working on a manuscript for a book the Lord gave me the idea for. It is coming along very well and I've already had meetings with certain medical staff and there is much interest. This weekend is our first Daruk Ministries fundraiser in Hendersonville and we're really excited about that. We're working with a graphic designer on our logo and should have our website and business cards and other ministry information soon. We have our nonprofit status and are currently working on our 501(c)(3) tax-exempt status. God is doing such wonderful things and I'm honored to be a part. Things are moving quickly and God is gracing us to handle everything with ease.

Elijah & Joshua are doing well apart from the colds they are overcoming. I truly count my blessing each moment of the day and I include each of you. All of these wonderful things would not have happened had it not have been for your love, prayers and support.

We'll keep you posted on new developments with Isaiah!

Love, Callie

Tuesday, September 23, 2008 9:38 PM, CDT

I just had to update you all with the best news I've heard in 9 months...Dr. Puder called today and told us Isaiah's planned discharge date is Friday October 3rd! Oh my goodness, we are so excited and ever grateful to our heavenly father! I spoke today with his case manager and she is arranging the home health, insurance and pharmacy information for us. Frank & I plan to leave on Sunday or Monday to go get him! Glory to God, I can't hardly sit still as I write this. There are many many things we need to be trained on and do ourselves in order for them to send Isaiah home. There is absolutley nothing we cannot handle with God's strength, grace and love. I'm so happy to share this wonderful news with you!

Oh, and for those of you who want to know more information about the fundraiser it is this Saturday in Hendersonville, TN at Steve's Auto Pro. It is on 673 West Main Street from 7:00am-3:00pm. We're having a yard sale, bake sale, guessing games, prizes, hot dogs, drinks, etc. We'd love to see you!

I am truly overwhelmed by the idea of the entire Daruk family together, at home, finally! Thank you Daddy God!

Tuesday, September 30, 2008 9:05 AM, CDT

Blessing In Disquise

Hello everyone, I hope you are all having a wonderful day. So, Frank & I arrived in Boston on Sunday afternoon after two rather bumpy flights (it has been raining and cloudy here). We immediatley went to the hospital to see Isaiah and he looked just wonderful. He was so happy to see us! Shortly after getting here we were told his ostomy output was elevated and they dropped his feeds to 20 cc's per hour. The definite plan of going home on Friday became a strong possibility. On Monday his ostomy output was still high and the strong possibility became just a possibility. We arrived this moring to discover that overnight his nurse discovered that more of Isaiah's intestines had prolapsed (or came out). We missed the doctor this morning but he had his staff come in and tell us the plan and informed us that we will be in to meet with us later today. His staff informed us that Dr. Puder indicated Isaiah will need to go down to the operating room to have his intestines repaired and while he was already going to be in there he was going to go ahead and reconnect his intestines all together! Wow, of course we are used to a rollar coaster ride but we didn't expect this. We fully expected to bring Isaiah home and care for him and all of his special needs there. As you may recall me saying before our hearts desire had always been to bring him home for good rather than require so much special care. So, we truly feel that this is a blessing in disquise and the reality that all of this will be over so much sooner than it would have been had he of came home on Friday is very exciting. As of now his surgery is scheduled for Saturday. We're meeting with Dr. Puder this afternoon at 2:00pm and we will know more. We'll keep you posted. In the meantime please be in agreement with us in prayer that every step we take is ordered by God and that He will continue to lead and guide us in every decision.

Love, Callie & Frank

Archives From Caring Bridge 9/3/08-9/16/08

2009-12-14T07:44:00.000-08:00

Wednesday, September 3, 2008 12:47 PM, CDT

Hello everyone, just wanted to give you all a quick update to let you know that Isaiah is doing very well. His feeds are back up to 32 cc's per hour at 26 calories. His direct bilirubin level went down to 6.2 this past Sunday, praise God. He weighs 15lbs and 8oz so he is gaining weight slowly but surely. From a conversation with Dr. Puder over the weekend it does not look like he will release Isaiah from the hospital until after his reconnect. I am not discouraged however, honestly, when we bring him home I would rather it be for good. He originally didn't want to do the reconnection until his direct bili was under 2 however he said we could re-discuss this. Frank is heading up the end of this week and I will join him the next weekend. Please continue to pray for our family; particularly that Dr. Puder will be led by the Holy Spirit about when to perform the surgery. We love you guys; forgive me for not sending you an update sooner. Where are the new pictures you might ask? Our digital camera downloads them to a size that is too large for this website. Finding time to resize them for you has been the problem. So, don't lose hope. I will get them for you!

Tuesday, September 9, 2008 8:57 AM, CDT

Hi everyone, just wanted to give you a quick update from Frank is Boston. He said things are going very well and he's having a wonderful time with Isaiah. On Sunday Isaiah's direct bili was 6 down from 6.2. It is coming down praise God. There is no new news on his medical front; it's just a waiting game right now. Frank is supposed to meet with Dr. Puder tomorrow to discuss surgery options. Many new and very exciting things have transpired that we will share with you all very soon! All is well, we pray the same for you.

Lots of love,

Callie

Tuesday, September 16, 2008 2:16 PM, CDT

Great News from Boston

Since Isaiah's arrival in Boston he has done nothing but get better and better and better. I truly thank God for His divine guidance in sending us to Boston. His thoughts and ways are certainly higher than ours and produce far better than our best laid plans ever could. We have learned in this circumstance what it means to truly trust God, knowing that what He has for us is far greater than what we could even imagine. Glory to God for taking what satan meant for our families complete destruction and creating something beautiful. Now that's what Daddy's do! Isaiah is up to 36 cc's per hour at 30 calories. Dr. Puder informed us that full feeds for Isaiah is now 36 cc's per hour at 34 calories. After tollerating that rate for about a week he sees no reason he should not get to come home! Over this time they will begin weaning his TPN and Omegaven so that he will be solely on formula through his g-tube! Last Sunday his direct bilirubin went down to 6 from 6.2 the previous week. We're waiting for that number to really start dropping dramatically as Dr. Puder says. We know it will! As I mentioned in an earlier entry when he comes home he will still have his iliostomy to care for while we await surgery. We trust that Isaiah will come home exactly when he is supposed to. Of course we want him home but not a moment to soon. He now weighs 16 pounds and 5 ounces so he's such a big boy. Frank says his color is almost normal praise God! His eyes are still a bit yellow but his skin tone is much much better. I hope to get his new pictures up as soon as possible so please don't lose hope!

We love you guys and thank you for your continued prayers, love and support!

Archives From Caring Bridge 8/11/08-8/26/08

2009-12-14T07:39:00.000-08:00

Monday, August 11, 2008 1:04 PM, CDT

I hope this email find each of you healthy and happy; two things that as a result of our 8 month trial I have become all the more grateful for. Yesterday the boys were 8 months old. Yesterday also marked the first full month that Isaiah has been in Boston. The past month has gone by so very quickly and glory to God it has been full of nothing but good news! I wanted to let everyone know that Isaiah's direct bilirubin went down again yesterday from 7.1 to 6.9. It has held out at around the same level for the past 4 weeks which is what Dr. Puder expected. I talked to him this morning and he said he expects his levels to really start coming down soon. He was very pleased with nearly all of his labs, praise God! We received confirmation from the plastic surgeon's that Isaiah has been fitted for a helmet and it should arrive on Wednesday or Thursday of this week. I ordered him a blue one with fire trucks and helicopters. I will be leaving on Thursday to visit him for a few days and I can hardly wait. I have some really adorable pictures of him since his arrival in Boston and will be taking many more this trip. I hope to get them posted soon after my return!

Love, Callie

Tuesday, August 19, 2008 7:36 AM, CDT

A Trip To Remember

After two wonderful flights, except that they simply couldn't arrive quick enough, we (my parents & I) arrived at the Children's Hospital in Boston last Thursday. As soon as the team saw us they said, "he's not in his regular room, he's in the play room." We practically ran to the play room to find him sitting with a volunteer. I cannot tell you what took place in my heart as I laid eyes on him. His color had changed so much and I even saw a little pink in his cheeks! That's right, he actually looked pink, praise God. Another thing I noticed was that he was playing with a toy that from the moment we arrived until we took him back to his room, it stayed in his hand. He had been interested in toys previously however he typically wouldn't hold on to them very long. Over the course of the 2 full days we saw him we saw remarkable changes. The best news came when Dr. Puder arrived and indicated that he was currently up to 32 cc's of formula per hour at 26 calories. In order for Isaiah to get to "full feeds" he would have to be at 32 cc's per hour at 30 calories. Dr. Puder indicated that at that time he would no longer need Omegavan since 100% of his nutrition would be from his formula, which ultimatley is the main goal. With that said, when he can get to full feeds with low ostomy output and continue to gain weight we could bring him home to TN! Yes, you did read me correctly! Of course he said this would be best case scenario and I'm ready for the BCS! From home I would continue to take care of his ostomy bag and care along with his g-tube feedings. Of course bringing him home after full-feeds would only be until his direct bilirubin levels get under 2 and at that time we would fly him back to Boston to undergo the final bowel reconnection. Dr. Puder expects that his recovery time from that surgery, with no complications (which there will not be) would be several weeks. As you could imagine I had a smile on my face and a thankfulness in my heart that nothing could've removed. I continued to see such an improvement in Isaiah's development. He cooed and even giggled, was alert and responsive to our voices and even interacted with me as I would blow rasberries; he's blow me some too! For the first time in 8 long months he seemed like a "normal" baby. On Friday his helmet arrived and I was so thankful to be there. Over the course of 8 months I have relinquished a lot of "firsts", that is something I've long gotton over not being able to see or do for him. I must say however being there for this one was special. He doesn't seem to mind it at all. I suppose when you've been through as much as he has what's a helmet? On Sunday his labs returned and look so much better. His direct bilirubin had went from 6.9 to 6.2! His nurse indicated that his ostomy output had went from 2 cc's per kilo per day (which is the highest it's aloud to go) to 5 cc's per kilo per day. As a result they had to cut his feedings from 32 cc's per hour to 16, however my faith will not waiver that Isaiah will be up to full feeds, gaining weight with low ostomy output! Please agree with us in prayer for this as well. So, needless to say it was certainly a trip to remember.

A Night To Remember

Good morning everyone! I first want to start by giving you all an update concerning Isaiah. On Sunday we anxiously awaited his lab results to discover that his direct bilirubin level actually went up; from 6.2 to 6.8. Dr. Puder called me that afternoon and said he was not overly concerned; that this sometimes happens and has no explanation. Several of his other labs actually went down so I was very pleased about that! After hearing this news I immediatly encouraged myself with the following scripture: Romans 4:20 I do not waiver at the promises of God through unbelief but I'm strenthened in faith giving glory to God! I spoke with Isaiah's nurse this morning and he is going back up to 32 cc's per hour today, praise God. He is very close to full feeds and I pray and ask that you continue to agree with me that he will stay there! The nurse said that he is extremely lonely and misses Mommy & Daddy tremendously. Frank is supposed to head to Boston this weekend and I know Isaiah will be so happy! We miss him more than words could express! She also said his fingernails were really long and he was cutting his face. Of all the things nurses are allowed to do clipping their nails isn't one of them. So, all is well as we stand fast and continue to fight the good fight of faith; not only for Isaiah but for the entire Daruk family.

Lastly I must thank each and everyone of my family and friends who came to Isaiah's benefit in Adairville, KY on Saturday night. I was so touched and so overwhelmed by the love and support you all showed. It was absolutley wonderful seeing all my old friends, family and past church family. Your kind words, hugs and generosity is something I will never forget. Many times throughout the night I thought to myself; this feels like a movie. I've never seen a community come together in such a beautiful way; and it was all for my son. Wow, my mind is still wrapping itself around such kindness. I was blessed that night to speak with my former pastor and as always he passed on such beautiful nuggets to me. He said, Callie don't forget that while you are still in the fight, you are winning. Going into a fight when you know the outcome; where you know that you will rise victorious, certainly makes the battle a bit easier." Amen and amen to that Pator Cowan. So, again thank you to each and everyone of you and to the beautiful singers and groups (Reconcile, Paulette Cowan, Lana & everyone else that I forgot to mention) that came out, you were fantastic and we love you! We know that God will bless each of you for giving to our family.

Archives From Caring Bridge 7/20/08-8/5/08

2009-12-14T07:37:00.000-08:00

Sunday, July 20, 2008 8:58 PM, CDT

Hello everyone! I am writing you from the comfort of my own home; I came in on Saturday for a quick visit and to seek God with my family concerning our next steps. With that said, I have AWESOME news to share. I don't know if I've relayed this to you all but in coming to Boston we were told that Isaiah's direct bilirubin level must be under 2 in order for him to become well enough to undergo the reinestimosis (bowel reconnection). When he arrived in Boston his direct bilirubin was 9.8. Today labs were drawn and after only 10 days of treatment his bilirubin level dropped to 7.2! Glory to Almighty God for this amazing news!!!!!!!!!! Isaiah's nurse literally called us this afternoon to tell us. She said this was HUGE and GREAT. We were told that his numbers would actually get worse before they got better. Praise God they didn't get worse but got drastically better! I couldn't wait to share this wonderful news with you. Also his CRP and white blood count dramatically decreased as well. He is literally a new baby and we give God all the glory! I am very excited to see him again and also to report even more great news.

Love always,

Callie

Saturday, July 26, 2008 7:28 PM, CDT

Hello everyone,

Several major changes have occured since my last entry. As a matter of fact Frank, Elijah, Joshua & I are in Boston, together! After I came in for the weekend to focus and seek God concerning our families next steps we received word from the Children's Hospital of Boston that Isaiah was doing so well he may be able to leave and be cared for out of the hospital; in Boston that is. He would still need to remain very close in order to receive weekly treatment and check-ups. I of course would become his full-time nurse, taking care of his ostomy, central line, giving him his IV nutrition, his experimental drug and his regular formula through his g-tube. In addition ensuring I continue to feed him orally 3 times a day. Isaiah's doctor believes he will recover faster outside of the hospital where he isn't so suseptable to germs. There is no way I would be able to handle Isaiah by myself even not to mention being here without my family was extremely difficult. So...Thursday morning we loaded up our van and made the three day journey to Boston, including 9 states: TN, KY, WV, MD, PA, NJ, NY, CT & MA! I know, what a journey that was. God's grace was upon us and the boys were absolutley wonderful! We even stopped in New York last night and stayed with Frank's uncle overnight. We had a wonderful time visiting with family! We crossed over the George Washington bridge to get into NY and it was such a beautiful drive. We have perfect weather the entire time. We arrived safely today around 2:00PM EST. I need to run and help Frank with the boys but know that more updates will come soon.

Love,

Callie

Hello precious friends and family,

I'm sure you're double checking to make sure this is actually a new entry and indeed you are correct. First, please accept my apologies for not updating you all sooner. As I'm sure you can imagine each moment of our days are filled to overflowing. With that said, I must first report that Isaiah is doing wonderful! We were told by his doctor's that he is one of the healthiest babies on the floor, praise God! His color continues to improve along with his labs. His direct biblirubin is now 7.1 (it was 9.8 when he arrived), his CRP and WBC are normalized and several other numbers have shown improvement as well. He continues to do well with his oral stimulation and has even started trying bananas and applesauce. He mainly takes his pacifier with it dipped in fruit/cereal however he has begun to even take a little more on his "finger toothbrush." The main objective at this point is not necessarily to increase the volume as much as it is to introduce him to solids and continue getting his familiar with substances in his mouth. Another huge praise report is that he is now up to 32 cc's per hour on Elacare (formula) and he was only at 14 when he arrived. Glory to God! This means that 2/3rds of his total nutrition is coming from formula - this is a remarkable improvement! We are awaiting a consult from plastic surgery this week to examine the shape of his head. Due to having been in the hospital for so long and favoring one side his head is misshappen. They will determine whether he needs a "helmet" to help his head grow to the proper shape. As I have said time and time again this experience has taught me so much. Most recently I have leared that there is absolutley no better place on earth than the perfect will of God for your life. There is no doubt Isaiah is in that perfect will and is reaping the beautiful benefits. I and my household endeavor to continually pray for and remain in the perfect will of God. And...we are currently doing just that. We had a lovely trip with our family in Boston despite some overwhelming challenges. We are safely and happily back in our home in Tennessee - THANK GOD! There is such validity to the saying "there's no place like home." Sometimes when searching for the perfect will of God it can come in finding out what is not the plan of God! So, thank God for the Holy Spirit in us who lead and guides us into all truth. We will continue to seek God for His plan; all the while resting in Him. We will take it one day at a time. Again I must say that the Daruk family has been so blessed by each and everyone of you. We thank each of you for your continue love, prayers and support.

In Christ's love,

The Daruks

Archives From Caring Bridge 7/16/08-7/18/08

2009-12-14T07:34:00.000-08:00

Wednesday, July 16, 2008 1:11 PM, CDT

Happy Wednesday everyone! I am so happy to report even more wonderful news today. Isaiah's oxygen has been completely removed, his skin and eyes look much less yellow to me and...he tried his first bite of food! Praise God! What a big day he's had already! He did so good. He made a little face (the cereal smelled like wall paper paste so I would've too) but he knew to swallow it. He of course still needs practice and only took a little however he did good! I will continue his oral motor exercises 3 times a day and will now add a feeding once a day. Once he's taken the rice cereal for 3 days I can move on to something a little more flavorful for him. I am so excited I can hardly contain myself; what a great day it's been. He is resting now so peacefully in his crib listening to his Bless My Baby Boy CD. I also met another very sweet woman yesterday when her son had to spend the night next to Isaiah. Her name is Elizabeth and she like me has been through so much with the illness of a sick child. She informed me this morning that her daughter who had been ill her entire life lost her battle 7 weeks ago (she was 6 years old). Please also be praying for this sweet family who have been through more than anyone should have too. She had such compassion for me knowing what a difficult time this can be. She lives fairly close by and even offered to bring me anything I needed (hot meal, lunch, etc.) when she comes back occasionally for her son's appointments. God is working mightly in and thorugh us. I pray that I will continue to be an encouragement to all those He brings across my path.

It has been a good day in Boston and I pray the same for each of you wherever you are. Love and thanks,

Callie

Wednesday, July 16, 2008 9:09 PM, CDT

Moved With Compassion

Good evening everyone. I write this entry with all the love, compassion and sincerity my heart contains. Just before typing this message I was sitting here alone in my room creating an "encouragement book." A precious friend of mine said that when she was going through a difficult time with her son's illness she created an encouragement book and put all the cards, letters and emails along with certain scriptures in it. At any time she needed encouragement she would open this book and be reminded of how much God loves her as well as her friends, family & church family, community, etc. Earlier this week I had printed off the notes from the guestbook that you all have been so faithful to send me. As I was just sitting here cutting them out I couldn't help but read and re-read some of them. Thus, the inspiration for this email. I know mostly everyone who sends us messages through this website and I know that many of you have a very strong faith in God as do I. However, as I've been reading some of the comments and notes I am moved with compassion. You know, I can so easily take my faith in God for granted; assuming everyone knows Him, His unconditional love and the strength and peace that only comes from Him. I beleive I would be doing a great injustice if I did not be completely honest with you and tell you that I am absolutley no different and no more special than any of you in God's eyes. The same grace, love, comfort, strength, peace and joy that He has given me and my family in the midst of this circumstance is available to each and everyone of you no matter what you're going through and no matter what you've done. There is but one way to God and that's through His son Jesus Christ. Jesus said, I am the way, the truth, and the life. No one comes to the Father except through Me. (John 14:6) Romans 10:9 says that if you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved. John 3:16 says for God so loved the world that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life. Please, I ask you if you do not have a personal relationship with Jesus Christ ask Him into your life right now. If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness (I John 1:9). If anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new (2 Corinthians 5:17). The words I speak to you are spirit and they are life (John 6:63). There truly is a heaven to gain and a hell to shun. I love each of you and if I saw that any of you were standing near the edge of a cliff about to fall I would run to save you. Well, spiritually speaking I am running and I don't want any one to fall, but be saved. Please accept these words as truth in your life. There is no greater joy in life than to be loved by and to love our creator and that is God Almighty, our Father who loves you with an unconditional and unending love. Make His home in you today; you will never regret it and you will never be the same. If you have any questions or you would like me to pray with you about anything in your life although I am in Boston I am still just a phone call or an email away.

With love,

Callie

Friday, July 18, 2008 9:18 AM, CDT

Hi guys, just a quick update to let you all know that I'm here with Isaiah who is sleeping peacefully this morning. We are going to have a wonderful, fun day together. I'll update you all later on the days progress. I pray that each of you have a very good Friday as well!

Archives From Caring Bridge 7/13/08-7/15/08

2009-12-14T07:32:00.000-08:00

Sunday, July 13, 2008 11:08 AM, CDT

Hello from Boston, I am currently sitting in Isaiah's room watching him sleep. He has been sleeping since I arrived this morning and he looks so peaceful. He began his treatment Friday night however there was a small interuption. For some reason his Broviac (central line) stopped working yesterday. They've inserted a few clot busters in case there was a small clot, however after several failed attempts he will be going for surgery this evening to have it replaced. I know all is well and the replacement will be a complete success. Otherwise he is doing well. When he's awake he is very alert and happy and so cute! Last night was my first night alone (although I'm never alone; God is always with me) and of course I miss my family tremendously however we are here to complete a task and I will continue to draw on God's strength, love and comfort every moment! I am still getting used to walking everywhere and I actually like it. I know it's good for me. I will go now since Isaiah is stirring however I will keep you posted on his surgery. Please agree with us in prayer that all will go well. Also please continue to pray for Frank and the boys; that while they are away God will comfort and strengthen their spirits, souls and bodies. Frank arrived home last night and they boys are not feeling well. Joshua was up most of the night and Frank is exhausted today. All the while he is packing them up and going to church this morning knowing he will be refreshed in the presence of God. We will not grow weary in well doing and we will not waifer at the promises of God, but we are strengthen in faith giving glory to God. More to come soon - love, Callie

Monday, July 14, 2008 12:47 PM, CDT

I am so grateful to report that Isaiah's surgery went well last night and he is doing wonderful. The surgeon mentioned that when he removed the old central line there was a puss pustule behind it which was the source of why it stopped working. I may have not mentioned this but for the last 2 weeks Isaiah has had an elevated while blood count and CRP (marker for infection) with no explanation and no obvious cause. The team here indicated that they sent the puss for a culture but that it very likely could've been the cause. So, we praise God for the bad line being removed and the new line being place with no complications. He is truly like a new baby today. He has been so playful all morning and he even went to sleep with absolutley no fighting or fuss at all. I beleive the line and the puss in it was causing him to not feel well. So, again we have another wonderful reason to give God praise! Amoung so many reasons to do so I have another. I along with several other people have been praying that I would meet a strong Christian friend who has been through or is going through similar experiences as myself. On Thursday after being here for only a few hours a new baby was admitted in Isaiah's room (he's not yet in a private room). After speaking with Isaiah's doctor I turned around and there were two women standing by the little baby girl. The mother overhead our conversation with the doctor and asked if our son was being treated with Omegaven for Short Gut Syndrome and we said yet. Her daughter was also on the medication and her mother, Jami couldn't speak highly enough of the medication and the doctor. As we continued talking she said her daughter's name was Ella which means light and that she knew God had led her family to that name. Her middle name is Grace. I knew the minute she said that she was my new friend. Little did I know I would get two; her sister Jessie was with her and from the moment we all talked we knew God had given us this divine appointment. They were to be leaving soon however they come each week for treatments and we will all be getting together as time allows each week. We all stood there talking about the goodness of God and encouraging one another. It was truly amazing and it showed me how much God cares about every detail of our lives. Her daughter is 9 months old and is just over 10 pounds. She was born very prematurely (I beleive at 26 weeks) and had a spontaneous bowel preforation. She only has 21 cent. of her entire bowel remaining. She too has been on TPN all her life and went through so many of the experiences we have. I am truly in awe of God goodness to bring me two dear friends my very first day. As you pray for Isaiah please also pray for sweet Ella Grace. They also have a website at www.carepages.com. You'll need to set up a user name and password and the name of her page is sweetellagrace . You will be blessed as you see her story of faith and healing as well. There are so many things I could write but I must go. Again, from the bottom of my heart I thank every single one of you who have given so graciously to our family in this difficult time. I know that as you have sown into good ground you will reap a bountiful harvest in your own families.
Much love,
Callie

Tuesday, July 15, 2008 11:32 AM, CDT

In yesterday's entry I mentioned that Isaiah was having such a good day. Well, it in deed turned out to be the very best day of his life! Truly, he was happier and more playful than I have ever seen him. He was cooing so much that I took video of him from my digital camera. As the day progressed he just became more lovable, happy and playful. It blessed my heart to see him so very joyful and I give God the praise! The feeding team came in yesterday and evaluated him to see if he has any aversion to things in his mouth. As you may recall among the other problems he is overcoming another one is that he has not had any milk or food by mouth since 1/22/08. His last suck/swallow study showed that he had silent aspiration and the speech pathologist didn't even want to start trials (this was several weeks ago). In speaking with her before leaving Vanderbilt she was in favor of doing a repeat study in an effort to begin giving him baby food trials since it's so much thicker in hopes that he will tolerate it. Their concern is that the older Isaiah gets and the longer he goes without eating he could develop this food aversion. Well, praise to God he passed her test with flying colors yesterday. She gave me some exercises to do in his mouth 3 times a day and if the team is in agreement he will be going down for a repeat suck/swallow and hopefully get him started on solids soon. I know it will make such a diffence in his well being! I'll keep you updated on this progress. As I arrived today he was literally smiling at the very sound of my voice. A volunteer was holding him and she couldn't tell me enough times what a precious and happy baby he had been! He is currently sleeping, after watching Veggie Tales. I talked to Frank last night on our Skype cameras (live feed) and it was wonderful seeing him. Hopefully tonight I will get to see Elijah, oh how I miss my boys! I had such a wonderful quiet time with the Lord this morning. He spoke some things to my heart about this trip. Mainly that I need to refocus why I am here (so much has happened in the excitement, my focus was just a little off) so I did just that. He told me that I need to keep my eyes firmly fixed on Him and that there is much to be accomplished here and it can only be done by His presence. So, that's where I stayed for quite some time this morning. I came out refreshed and ready for the journey. If I could ask for you all to pray with us concerning something it would be that our families steps would continue to be ordered of the Lord. I would love to have my family here with me (temporarily that is) for this journey and if that is how the Lord leads us I know He'll make a way.

I cannot possibly end an entry without thanking everyone again for being such a strong support for our family. Your prayers, love and devotion have greatly affected our lives and we will never be the same because of it. I love and miss you!

Callie

Archives From Caring Bridge 6/21/08-7/10/08

2009-12-14T07:30:00.000-08:00

Saturday, June 21, 2008 7:59 PM, CDT

For those of you who do not already know Monnroe Carroll Jr. of Vanderbilt Children's Hospital passed on yesterday morning. I was informed of this information by the NICU's Nursing Manager when she came into Isaiah's room yesterday morning. She indicated that Isaiah was the last baby Mr. Carroll visited and that he meant a lot to him and she would like to conduct the media interviews in Isaiah's room. I of course was so honored and said yes. Little did I know that within a few hours channels 2, 4, 5 & 17 would be there to interview she and I. Last night our precious little Isaiah was on the evening news on each channel! I was so blessed by this and grateful for the favor of God on Isaiah's life. He is such a light to all who he comes in contact with! Another piece of information you do not yet know is that Friday was the day he was supposed to have surgery to reconnect his bowel. I insisted on certain labwork being completed prior to surgery and on Thursday morning they informed us that due to his labs the surgical team didn't feel comfortable moving forward with the surgery. If the surgery had taken place Isaiah wouldn't have had this precious opportunity. Of course most importantly he did not need to undergo surgery if there is any infection going on however I do not beleive that's the case. He had a litle cough this week and he's also teething now so his body may be responding to those things. Otherwise he is so happy and playful. He's grabbing for things now and will even hold a toy for a little while. May I just say that I in no way am backing down from my complete and total trust in God and His word concerning Isaiah. I am led by the Holy Spirit within me on every decision I make and this is no exception. The master's hands will still be the ones to repair Isaiah and make him whole!

I also haven't written about Joshua in a while so let me update you! His mic-key button was removed a few weeks ago and is healing just beautifully! He weighs just over 15 1/2 lbs. and is such a joyfull pleasant baby. He has his 2 bottom (center) teeth now and it's so adorable. I am so grateful that he is such a good baby and truly a blessing in our lives.

Elijah turned 2 last Sunday so he's a big boy now, although he's more like a 3 year old intellectually. He is a wonderful big brother and a huge help to Mommy and Daddy.

I also couldn't end without giving God praise for how He's so faithfully supplied all our needs; financially, emotionally, physically; in every single way. It's been amazing to see! What an honor it is to be a daughter of God!

Thanks and love to you all!

A Way of Escape - In Boston

Hello everyone - at long last I finally have a few moments to give you all an update. For those of you who do not know there are significant changes ahead. Last Wednesday after Isaiah's health took a turn for the worse (in the natural that is) I went to Vanderbilt and spoke with the head of Neonatology. He kindly came into Isaiah's room and told me that if Isaiah's liver fails he will die (he had been exhibiting significant signs of this). As you all know he has been on primarily intravenous nutrition (TPN and lipids) since birth. In this case what began saving his life after prolonged use began taking if from him. So...to make a very long story short Isaiah is being life flighted to Children's Hospital of Boston on Wednesday or Thursday of this week. Frank is coming to help Isaiah and I get settled and will return home in a few days. I however will be staying in Boston with Isaiah. At this time it is uncertain how long our stay will be but I am trusting that it will be a very speedy process. The medical professionals have given us a 2 month to 2 year window. Frank and I have prayed and sought the Lord diligently concerning this situation and have 100% peace. We know that this is send by God to save Isaiah. Children's Hospital of Boston is the top children's hospital in the nation for digestive diseases and have an entire floor, doctor's and nursed devoted to Isaiah's condition. God however is the master physician and will guide and oversee our every step. I wish I had time to tell you all how beautifully God has both prepared and provided for us during this time. He is absolutley amazing! Our families have agreed literally to uproot their lives to help Frank with the children and support him in everyway possible. Our church family suprised us on Sunday with so many AMAZING gifts, love, prayers and support! We received word from a local ministry in Greenbrier that Frank and my airline tickets to fly to Boston (and Frank back home) are taken care of. Everyone, has been so gracious and compassionate and with all the sincerity that is in us we say, THANK YOU. We are confident that every single need will be met because God takes care of us! Please continue to pray for our family during this time and I know because of it the Lord will bless you in return! Once we get settled in Boston I will have time to keep this website updated so please keep checking regularly for updates. Also I have a new email address:

darukc@bellsouth.net

Feel free to leave us a message here in the guestbook and/or email me.

We love and appreciate each and every one of you!

Thursday, July 10, 2008 9:35 PM, CDT

We're Here

After two very smooth and quick flights we finally arrived in Boston at around 2:00pm (EST). We took a cab to the place I will be staying and it was absolutley an answer to prayer. I am in a old renovated victorian style house that was turned into rooms for parents of very ill children to stay while away from home. The people here have been so nice and even welcomed me home. After checking in we immediatley went to the children's hospital to see Isaiah. We couldn't get to his room fast enough! He was lying in this huge bed sleeping as soundly as possible. They informed us that he had a very smooth flight with no problems. They of course began starting their battery of testing and got him all settled. Shortly after arriving we met with his surgeon and he was wonderful. We should be able to start his treatment tomorrow! There are lots more things to update you all on and we will do so as we get new information. Thank you all so very much for your love, prayers and support. We are truly in awe of the goodness of God and your obedience to Him and blessing our family. We have been exceedingly blessed and we are so very grateful. From the moment we arrived until this very one, we are certain we're exactly where we're supposed to be! We will talk again soon!

Love you!

Archives From Caring Bridge 5/30/08-6/12/08

2009-12-14T07:29:00.000-08:00

Friday, May 30, 2008 8:02 AM, CDT

I am truly so grateful to report that Isaiah is doing just wonderful! He is up to 11 cc's per hour on breastmilk and his ostomy output is great. He now weighs 12.6. On Wednesday of this week I got to visit with him and he is so happy and was even cooing. When I arrived the neonatologist, nurse practitioner and two nurses were there and they as usual discussed his status. As they were leaving the nurse practitioner asked me "so Callie, when do you beleive Isaiah will be doing down for surgery?" I smiled and asked her, do you really want to know what I beleive? She said yes and I told her that I didn't beleive Isaiah would be going for surgery, I beleive that he will be stitched back together by the master physician. The comment was met by complete silence however in I know in heaven the angels were shouting. I know in whom I trust and I am not ashamed of the gospel of Jesus Christ! I am so excited for the day and I know it will be soon, when Isaiah returns home completely whole!

We sincerely appreciate your prayers, love and support! You have truly been wonderful and we're so greatful for each of you.

Wednesday, June 4, 2008 8:20 PM, CDT

Last week while having my quite time with the Lord I was led to read in Psalms. As I did I came upon the following scripture:

Psalm 30:2 O Lord my God, I cried unto you and you have healed me

I remember thinking, well, I don't remember this as being a scripture that is normally quoted when someone is praying for healing. I knew I was supposed to study out this scripture when time allowed. Shortly after reading it I did a word study from the Strong's Concordance and that word in the original Hebrew means "rapha". Rapha is defined as "to mend by stitching, to repair, to thouroughly make whole!" Glory to God! Just a couple of days before reading this during prayer, I knew that I was supposed to search the scripture for myself and find what in God's word I was beleiving to come to pass in Isaiah's life. He is so good and such a wonderful Daddy. He is such a gentleman and always leads me into truth. So, now you all have an exact scripture to stand on with us concerning Isaiah. Isn't this just wonderful? :o)

So, I prefaced the email with the good news of the gospel so as to let you know that I am not moved by what I see, what the doctor's say or how the labs return. Isaiah is completely made whole by the blood of Jesus and just as the woman with the issue of blood said, if I could but just touch the hem of His garment I will be made whole! Isaiah has had some adversity try to rear it's ugly head this week but I declare God's word over him that "no weapon formed against him shall prosper!" I call Isaiah infection free! I declare that his liver is functioning at full capacity and there will be no adverse side effects to the TPN in his body. The Bible is very clear that death and life are in the power of the tongue so I make sure my words are full of life! I walk by faith and not by sight! So, as much as this email was to update you all it was just as much for me to stir myself up and encourage myself in the Lord! Thank you for praying with us concerning Isaiah's supernaturally speedy recovery!

Love always,

Callie

Thursday, June 12, 2008 2:14 PM, CDT

Hello dear friends and family,

Let me first say that I apologize for not giving you all an update in a while, however we have been in some truly life changing services as we are having revival in the church! After my last journal entry every one of his blood cultures for infection came back negative, glory to God! His feeds are up to 12 cc's per hour now and he weighs 13lbs. 7oz. I have new pictures that I hope to put up very soon for you so please keep checking. On Tuesday we celebrated Isaiah and Joshua's 6 month birthday. We were blessed to spend most of the day with Isaiah and had the most precious time of prayer. The surgeon also came in to speak with us that day, however I never said a word and only looked at him to acknowledge his arrival and departure. God has done such an amazing work in my heart; the entire time he was there I stroked Isaiah's head and thought - it does not matter what he says, it doesn't matter. God's word will come to pass in Isaiah and I refuse to accept anything less. Not only do we have that assurance in His word but He spoke some beautiful things to my heart over the last several days.

May I also interject that for those of you who live close to us and you are hungry for God or you want to be please come and worship with us. If you have been looking for a place to be planted and grow, there is absolutely no better place than Faith Covenant Church! Most of you have undoubtedly seen the change in me through this entire experience and all the glory goes to God, however without the love, support and prayers of our church family I would not be where I am. I will never be the same as a result of these times in God's presence (which by the way are just beginning) so if you want some please don't hesitate, just come! You'll be so glad you came and you will never, ever be the same.

Thank you for standing with us and for praying with us in all assurance that as we ask in faith according to God's word, with nothing wavering we shall have what we ask!

Archives From Caring Bridge 5/19/08-5/24/08

2009-12-14T07:27:00.000-08:00

Monday, May 19, 2008 9:26 PM, CDT

A Special Prayer Request

Tommorrow morning Frank is going in for surgery to repair a herniated disk is his back. He is scheduled for surgery at 7:00am so please agree with us in prayer that the surgery, the staff, the room, the instuments and any other person or object that comes in contact with Frank with help him and in no way harm him! He is strong in the Lord and the power of His might and no weapon formed against him shall prosper. The master physician will be leading this procedure and the outcome will be success in Jesus name!

Thank you all so very much, we love you all!

Tuesday, May 20, 2008 8:09 PM, CDT

A Day Filled With Praise

I am so happy to report that Frank's surgery went exactly as we prayed; a complete success! The surgeon said he had a very large disk herniation and the procedure went perfectly. When Frank got up to walk he said he felt better than he had in months, praise God! He came home this afternoon around 1:30pm and has been resting ever since. He's still a bit loopy and sore however he's doing great! Please agree with us in prayer now that he will indeed have a very speedy recovery and that he will never ever need back surgery again!

Isaiah now weighs 12lb. 2oz. and he's doing just wonderful! He is going up to 9cc's per hour tonight and his ostomy output has been lower today than it's been all week glory to God! His direct billirubin levels (they indicate to what degree his liver is being affected by the TPN) went from 4.5 to 3.9! God is working those creative miracles in Isaiah's body we've been praying for.

Joshua is now laughing out loud (when provoked) and it's so adorable. He is such a pleasant baby and truly a gift from God.

Elijah is as sweet as every and his vocabulary is really expanding. He will be 2 on June 15th and we're looking forward to giving him a truly extra special day after all he's been through over the past 5 months.

More wonderful news to come very soon!

Saturday, May 24, 2008 8:05 PM, CDT

Hello friends and family,

Just a quick update to let you know that Frank is feeling much better today. He was feeling extremely sore from surgery this week and while he is still sore he has had a much better day today. He can only sit in a seated position for up to 45 mintutes per day so that leaves him mainly in the bed all day, which as you know can get old very fast. He also cannot pick up Elijah or Joshua for the next 3 1/2 weeks and this is so difficult for him. He is feeling a bit helpless so please pray that he will be strong not only in body but in spirit as well.

Isaiah is absolutley wonderful! He weighs 12 lbs. 4 oz. and is up to 9 cc's per hour on feeds; praise God! He is still such a light to all who meet him and I cannot wait to see him.. Due to all that's happened here at home I haven't seen him in one whole week and my heart aches so much to see him. I know it will be soon and I trust the Lord will allow the time to pass quickly.

Be blessed and have a safe holiday weekend!

Archives From Caring Bridge 5/9/08-5/18/08

2009-12-14T07:25:00.000-08:00

Friday, May 9, 2008 9:04 AM, CDT

Hello everyone,

I only have a very quick minute to update you all this morning and praise to our Lord there's very little to report! Isaiah is doing WONDERFUL and is such a happy baby. He's been taking 4cc's of breastmilk since Monday and tollerating it very very well. Oh, how we give God praise and thanks for this! Nothing is impossible with our God and I look forward to updating you all with more great news of the creative miracles God is working in his body.

V for Victory

Today my mother-in-law and I went to visit Isaiah. As soon as we arrived she said, Callie, have you noticed the little birthmark Isaiah has (it's literally right between his eyes) and I said yes; I had only noticed it as a red blotchy spot however she said look, it's a v for victory! I was blessed by her comment in so many ways. Thank God because we are in Christ Jesus we have the victory and so does Isaiah. We continued to hear nothing but great news as our visit went on. He gained several ounces last night and currently weighs 11lbs. 9oz. He is still handling his feeds perfectly, with just the right amount of ostomy output (stool) and very positive weight gain. We continue to praise God for all He has done and continues to do in Isaiah's life. We look forward to his homecoming very soon.

Sunday, May 18, 2008 2:50 PM, CDT

Good day everyone; and indeed it is a good day! Yesterday we received a call from Isaiah's medical team that he had developed red bumps near his pic line (his central line allowing intravenous nutrition, fluids and other medications to be given) that were very tender to the touch. Because of this they needed to remove and and replace it elsewhere on his body. After several unsuccessful tries they told us he would need to go down to the operating room and have a minor surgery to insert a broviac catheter. This catheter goes into a central vein and provides means to give him the IV nutrition he needs. Frank & I prayed over Isaiah just before surgery and declared the word of God over him in full assurance that this will help him and in no way harm him. He did great during the surgery and has two minor incisions where the catheter went in and comes out. He is back on feeds (7cc's per hour) and is doing great. His nurse today said they've played all morning and he's been as happy as ever! We praise God that all is well from the procedure and that he is continuing to grow strong and healthy by the minute. The surgical team said they want to wait until Isaiah is as strong, big and healthy before operating again. Their exact words were if at the end of the 10-12 week waiting period he is doing well on his feeds and his liver is not being affected by the TPN they would wait even longer because they feel he would have a much better outcome in surgery. We are following the Holy Spirit concerning every decision that's made and everything that's done to Isaiah. I have learned in the past 5 months what it truly means to rely on God. There is such a vast difference between saying it and actually doing it. There is such freedom in relying completely and totally on the Lord. So many people over the months have said, I would be a mess, I don't know how you all are handling this. I am very quick to tell them, if I were handling this in my own strength I too would be a mess but thank God he saw fit to give us the Holy Spirit to comfort and guide us. He is such a good Father and I can sincerely and honestly say that He is my source, in every way, every moment of my day!

Thank you all so much for the wonderful comments and letters of encouragment you send; they are truly such a blessing to us!

Archives From Caring Bridge 4/24/08-5/6/08

2009-12-14T07:23:00.000-08:00

Thursday, April 24, 2008 6:16 PM, CDT

No News Is Good News

Hello everyone, I truly have nothing to report which in and of itself is such a blessing! I spoke with Isaiah's nurse today and she said he's been a very good boy. He's been sleeping a lot of the day and she said when he's not sleeping he's smiling and being spoiled by all the nurses! He is absolutley adorable and speaking of it I know you have all been waiting very patiently for picture updates. The resolution on the pictures from our camera is too high so they must be resized in order to be put on the website. I have not have time yet to go through this process however I will try to get to it this evening. Thank you all for your continued messages of encouragement in our guestbook. I cannot tell you how inspiring they are!

Wednesday, April 30, 2008 6:30 AM, CDT

Standing In Faith

Since it has been a while since I've last updated everyone I have lots of information to share. I will start with the most amazing victory; as you all know we have been diligently praying that Isaiah's fistula would close on it's on and that he would begin stooling from his rectum. This past Saturday morning around 6:45am we called to check on Isaiah and the nurse said he had only had 3.5 cc's out of his ostomy bag and that he'd stooled from his rectum! Oh, how we praised God for this glorious news! When we got the news we were in the van however if we could've ran, we would have! It was without a doubt the happiest moment of our lives. We has also met with Isaiah's physician the night before and he said that the fistula was not expected to close on it's on thus he shouldn't be able to stool from his bottom. The medical team wanted to restart feeding Isaiah on Monday (this past one) and prior to doing that he underwent a study to watch the path the feeds would take. I received a call from the nurse who indicated that the study went great, that there was only the one fistula and everything else looked good. However, in speaking with his neonatologist yesterday it "appears" to them that the is some sort of blockage in his intestine just after the fistula. He indicated that surgery wants to go in and dialate (make larger) his fitula and the area around it. Frank & I immediatly looked at each other and we do not have peace about this method. We are beleive the hand of God will touch Isaiah and the last thing we want to do is make his fistula bigger! We asked for the alternative (medically that is) and he said he could have another barium enema to try and identify a blockage. Isaiah will undergo this study today. As I've said in recent journal updates; we have such a determination, such a knowing that we WILL NOT be moved by the doctor's report. We SHALL beleive the report of the Lord and that is that Isaiah is healthy and strong. So, I tell you all of this not to stir up disapointment in anyone but rather so that we all will see and know that God's mighty hand is at work in Isaiah and He will get all the glory!

I also have glorious news to share concerning Joshua; he slept all night long last night! I praise God for each and every victory he is blessing us with and a solid night's sleep is just that! Otherwise he is doing just great and he's still taking each feeding by bottle, praise God! Elijah is growing up so fast and talking a mile a minute. He is truly a wonderful big brother and such a blessing. I feel so blessed that God chose me...me, to be the mother of Elijah, Isaiah and Joshua!

Please continue to stand in agreement with us concerning Isaiah's complete healing. Your prayers, love and support mean so very much to us! All our love,

The Daruk Family

Our God is an AWESOME God

I have been bursting at the seams to begin this journal update. I have such glorious news to share concerning Isaiah, but first, I must give you a little background information. On Friday night I spoke with Isaiah's neonatologist and he layed out the following three options:

1. Isaiah can continue on TPN (IV nutrition) until they operate again, which is not a good option for many reasons

2. They could go in and dialate the fistula (make is larger) which he told me is no longer a "fistula" but an actual ostomy (intestines coming out of his abdomen). He said that this was necessary because after doing a contrast x-ray study it showed there is a blockage behind Isaiah's ostomy which could only be repaired through surgery. He said there were also strictures (narrowing of the intestines) in front of the ostomy which may need to be dialated in order for him to feed well and pass the food along through the ostomy

3. We begin to feed him breastmilk slowly through his g-tube without dialating anything to see how it goes.

After seeking the Lord about this through prayer Frank & I both felt that without a doubt option 3 was the best for Isaiah. We in no way wanted to hinder the work God has begun in Isaiah by making the very thing we're praying to close larger. Keep in mind that the doctor said the stricture and blockages could not open but by surgery. Well...... this brings me to my incredible news to share this morning. I received a call from his night nurse a few minutes ago and she said that feeds were started (pedialyte first, then breast milk today) last night and that overnight and this morning he has passed several blood clots; two in his ostomy bag and one coming out of his ostomy. I asked her exactly what did that mean and she said, "it is the strictures breaking loose"!!!!! Praise God, Praise God, Praise God. Frank and I were never told by anyone on the medical staff that this could even happen! All glory and honor goes to Him and I know that I know that I know this is just the first of the many wonderful reports to come of how God is miraculously and creatively healing Isaiah!!! Whoooooooooooooo!

Archives From Caring Bridge 4/17/08-4/22/08

2009-12-14T07:22:00.000-08:00

Thursday, April 17, 2008 7:47 PM, CDT

Good evening precious friends and family,

Today is a very special day, my wonderful husband's birthday. I am so blessed to have such an amazing husband to stand by my side through these incredible challenges. I can say (with just a bit of partiallity) that I truly must have the best husband in the world. I can certainly say that I know without a doubt I have the very one God hand picked just for me. He has taught me so much through his compassion and thoughtfulness toward others. I have sincerely prayed and did all I knew to do to ensure this was such a special day for him despite all that is going on. So, honey as I've said all day Happy Birthday to my one true love!

So, I have fantastic news to share concerning Isaiah; the genetic testing report came back 100% negative, GLORY TO GOD! There were never any doubts in my mind and I'm so grateful. He seems to be doing very well despite the gaping wound in his abdomen. He will be on a strong round of antibiotics for approximatley 21 days. I spoke to the surgeons yesterday in length and they informed me that the plans is to give Isaiah time. The bad news that I received from him was that he will be in the hospital for at least another four months, I know, you read it correctly! The reason is that he needs at least two months to heal from this last surgery to ensure that he is absolutley as healthy as possible and most of all to ensure that proper time has passed to allow his intestines to heal completely minimizing scar tissue. Plus, the recovery time and time to allow feeds to resume and increase takes 6-8 weeks post-op. At first I prayed no, no, no however I beleive in my heart that this is what is best for Isaiah and although I want him home so desperatley I also want him home to stay with NO FURTHER PROBLEMS. If that means another four months than God will grace us with the same patience and strength for the next lap. Joshua is doing well, very well indeed. He is now taking the bottle at each feeding and is doing just wonderful. I cannot express how wonderful it is to hold him in my arms, look into his arms and feed him. It is amazing how many mothers (including myself) take this for granted. Elijah is feeling much better as well and is becoming such a chatter box; it's absolutley adorable.

Thank you all from the bottom of our hearts for your prayers, your love and everything in between. We are being held up by the strength of God and your love.

Saturday, April 19, 2008 7:57 PM, CDT

Hello everyone,

I wanted to update you all after speaking with Isaiah's neonatologist on Friday morning during rounds. At this time the plan for Isaiah is:

To continue on a 21-day round of antibiotics
To continue to evaluate his labwork
To slowly restart feeds after approx. 21 days (only after a barium study is completed to ensure there are no additional fistulas)
To monitor his "ostomy" output
Scenario 1: He will need to wait at least 10-12 weeks before undergoing surgery to repair his fistula
Best case scenaro: His fistula could close on its own, he could begin stooling from his rectum and he would not need another operation.
Please, everyone agree with us in prayer that Isaiah's fistula will close up on its own thus requiring no further surgery for him!

I must run now but I'll update you again very soon!

Tuesday, April 22, 2008 6:35 PM, CDT

Good evening,

Frank, Elijah, Joshua & I went to church this past Sunday for the first time in 4 1/2 months (we can get Joshua out now that RSV season is over). My, my, my - it was absolutley wonderful! I cannot begin to express how happy we were to be at home with our church family. We were all so tremendously blessed! I sincerely pray that every single person finds a church home just like ours; where you are supported and loved in everyway possible, where prayers are continually lifted up on your behalf and most of all where you are ushered into the very presence of God. I cannot say enough about how wonderful Faith Covenant Church is and how grateful we are to our Pastors and church family for all they have done! We love you guys!!

I visited with Isaiah on Monday for a few hours and he was doing and continues to do wonderful! A nurse even said that he's doing better than they would've expected considering everything he has been through. This came as no suprise to me; we've in the HOV lane now and things are going to start progressing very quickly concerning Isaiah's recovery! We prayed over a cloth on Sunday and it is laying on Isaiah's belly. I've asked each nurse to be sure it is never removed from there. When I saw him on Monday the first thing I thought was just how great he looked. His skin and eyes were much less yellow and he was smiling and even cooing at me! Oh, how I praise God for these amazing miracles. I have every hope and expectation that he will do nothing but excel from this point forward. The surgeons changed out his old g-tube to a mic-key button (what Joshua has) today and I beleive that's the last time they will touch him! Each day this week I awoke with refreshed with a greater determination to live by faith, to walk in love, to forgive and to commune with God. What we do effects our families and I want the only affect to be a good one.

Joshua and Elijah are doing great! As a matter of fact today was the very best day I've had in months. I was able to clean the house, clean the clothes, make dinner and even lay down for a couple of hours with Joshua while Elijah napped. It was such a wonderful day and I praise God for more of them to come.

We love you all!

Archives From Caring Bridge 4/4/08-4/13/08

2009-12-14T07:19:00.000-08:00

Friday, April 4, 2008 5:01 PM, CDT

Good evening everyone,

Frank & I spoke in depth with Isaiah's surgeon this afternoon and gained answers to many of the unknowns regarding his upcoming surgery. According the surgeon the plan was always to reconnect him around 6-8 weeks from his last surgery. A week from today would be eight weeks so we are within his original timeframe. He informed us that he has no particular concern regarding his nutritional status, in fact, he indicated that the only real way (from a medical perspective) to address the short gut issue was to reconnect him. Frank & I have peace regarding him going into surgery on Monday, however, we will continue to pray so as to ensure it's truly peace and not just our excitement to get this "over with!" This afternoon Isaiah went down to x-ray for a barium enema to see if any strictures (scar tissue which causes narrowing in the intestines) had formed and praise God there were none! The radiologist told me that everything went down just perfectly! I was so happy to hear such great news. I spoke with the nurse practitioner today and she indicated that Isaiah's liver enzymes and amonia levels were quite elevated. The liver enzymes are due to the liver disease however they are concerned about the amonia levels. Genetics completed a consult on Isaiah and they are doing some specific tests on him (blood test) to rule out any genetic abnormalities. I know each and every one of you are praying for our dear Isaiah and we are so grateful! Please continue to pray with us that his surgery will go absolutley perfectly as well as his recovery. Please pray that as we go up on his feeds his body will tolerate them and properly absorb the nutrients. Please pray that he will continue to thrive and gain weight. Please pray with us the God's hand will be upon the surgeon and every other staff member as well as every single instrument used. I pray that it will be as if the physician's hands are literally being guided by the Master Physicians hands ensuring the EXACTLY what and only what needs to be done is done! Please pray that Isaiah will not be infected and will have NO NEGATIVE SIDE EFFECTS to this surgery whatsoever. I know these are specific things, however, they are what Frank & I are praying for and we would love for you to agree with us in prayer that these things will be acomplished once and for all!

Have a wonderful weekend and I'll keep everyone posted throughout the upcoming days!

Wednesday, April 9, 2008 2:10 PM, CDT

Hello at last everyone,

As you can imagine we have been super busy since I last wrote however I know you are all very anxious to hear about Isaiah. His surgery was a complete success although it did not come without it's own set of challenges. It took the surgeon 2 hours to cut through all of the scar tissue around Isaiah's illiostomy before beginning the surgery. Because the scar tissue was so severe they had to remove an additional 6 inches of his small intestine. Just before his surgery the attending anesthesiologist recommended that he perform an epidural on Isaiah to ensure maximum pain control. He informed us that an epidural could stay in longer allowing him to be weaned from the narcotics in a much easier fashion. Also, an epidural was more likely to allow him to be extabated (taken of the ventilator) immediatley following surgery. When Isaiah came out of the anesthesia he was in tremendous pain and according to the physicians he shouldn't have been since he should be numb. Due to him chronically being on pain medication his tollerance level goes way up therefore it can be difficult to find the appropriate level of pain medication for Isaiah. They increased his dose and he was resting much more comfortably. Along with his pain medication through his epidual he was allowed additional doses through a pump every 30 minutes. His first night he required that to be pushed 17 times along with 2 PRN doesed of morphine and one of versaid. The pain team came in and re-evaluated him the next morning and increased his dose. That seemed to be more effective since last night he only required 4 or 5 additional does from the pump. At that point Isaiah seemed to be doing very well with his major issue one of pain control. I received a call early this afternoon from his Nurse Practitioner stating that when she evaluated him today he seemed to be in a tremendous amount of pain and when she looked at his back she noticed his epidural had come out. She immediatley put him on a phentinyl drip for pain along wth additional morphine. When looking at his labs she noticed his white blood cell count was very elevated so she examined his incision. She said it was very red and puss was draining from it. She ran a culture of the puss along with a blood culture. He is on vancomycin (excuse my spelling on some of these) and gentamycin for a broad range of coverage however they are running the cultures to see if his is infected and to determine a more appropriate antibiotic. I remain in faith despite this news knowing full well that the good work that God began in Isaiah will be completed! Nothing the physicians say or do will sway me from this stand. Our heels are in the mud of the Word of God and we will not budge. Please continue to pray with us for Isaiah's full recovery. More to come ASAP.

Love,

Callie

Sunday, April 13, 2008 7:41 PM, CDT

Good evening everyone,

I write you all tonight with such a heavy heart because of the news I must share, anger at the devil for continuing to try and steal Isaiah's health and most of all, despite all that we have been through a deeper determination than every. As you know from my last entry it appeared that Isaiah's incision was infected. From that time until now the culture of the puss draining from it did infact return as growing a gram negative bacteria. He was immediatly put on a strong course of antibiotics in hopes that it would take care of it. The actual culture grew bacteria called klebsiella oxytoca which is actually normal, healthy bacteria when it remains inside your intestines. The problem with it now was that it was found outside of his intestines. Over the next few days from that time his incision continued to drained large amounts of puss. Surgery came in and opened each end of his incision to allow for additional drainage. They later reopened the entire incision and packed it with sterile gauze. We received a phone call from the surgeon on Saturday morning stating that while examining Isaiah that morning he noticed a large amount of stool coming out of his incision, thus, the reconnection of the bowel did not "take." As a result Isaiah will need yet another operation. The surgeon is hoping his body will form a "fistula" which is basically another ostomy allowing him to stool outside his body. The greatest concern at this point is insuring that the stool remains outside his body. He said that will monitor him extremely closely over the next several days to ensure this is happening. He said it is too dangerous to go in immediatly and as long as the infection can remain under control and they stool continues to come outside of the body it will be best to wait another 4-6 weeks before trying again. In addition Isaiah is being tested for certain genetic disorders and something came back. They sent if off another time in hopes that they received a false positive. We know will all our hearts this will return normal so please add your faith to ours concerning this. I visited with Isaiah on Saturday and he seems to be resting very comfortably. He even did that adorable little grin that babies do in their sleep - what a precious site. All weekend Elijah and Joshua have battled fevers and their bodies are working hard to fight off a viral cold. Frank & I are also fighting this off as well. I also found out on Saturday that my Aunt passed away from her battle with ovarian cancer. It has been a very eventful weekend to say that least. I'm sure you've heard the phrase if you can't say anything nice then don't say anthing at all. I beleive that if I can't say anything in faith then I should say nothing at all. I may be at the end of my rope but I am so grateful that it's not my rope we're holding on too. I truly don't understand this and I can't pretend to. I will however continue to speak and beleive just what I always have; that Isaiah Solomon Daruk will live and not die and declare the works of the Lord.

Archives From Caring Bridge 3/31/08-4/3/08

2009-12-14T07:18:00.000-08:00

Monday, March 31, 2008 8:23 PM, CDT

Good evening friends,

I can't beleive it has been a week since I've last updated you. It is truly amazing how quickly time passes with children. Isaiah is contining to improve from an infection standpoint. There is concern right now regarding his liver function due to his prolonged exposure to TPN (IV nourishment) and as a result his skin tone is very yellow. He has been gradually losing weight and that is of concern as well. He currently weighs 8lbs. 4oz. which is nearly 2 and 1/2lbs. lighter than Joshua (who now weighs 10lbs. 11oz. He is on a medication for his liver function and is going to undergo a GI consult regarding his weight loss. GI can evaluate all his labs, his history and his current nutrition and come up with an agressive plan to maximixe nutrition. I was able to visit with him nearly all day today and my heart truly leapt! Arranging time to visit with him is quite a challenge now and each time I see him is none to soon! Joshua had a follow-up appointment with the GI doctor last Thursday and that went well apart from his pulling his mic-key button (feeding tube) and causing it to bleed. Since his surgeon's office was close by we stopped in and they put something called "alum" on his granulation tissue forming around the button. It is supposed to help that tissue to pull away from the button and allow the stoma to heal up on it's own. Well...over the next day the area around it became literally charred, turned black and started to bleed. We called the pediatritian's office and they said he may be experiencing a reaction to the alum. We stopped using it however the bleeding continued so we brought him to the pediatrition on Saturday morning. They cleaned it very well and applied a heavy coating of ointment and advised us to continue to do so. After a few days of applying the ointment it looks much better and he is certainly much happier. Elijah is doing great as well and absolutley loves "Joshy!" Please continue to pray for our family; especially Isaiah. I have every confidence that he is and will continue to be delivered out of EVERY trap the enemy has set up for him and he will accomplish exactly what God has set apart for him to do. Oh how I long for those days.

Much love,

The Daruks

Tuesday, April 1, 2008 4:03 PM, CDT

When calling to check on Isaiah this morning I was informed by the nurse that he lost another 3 oz. and now weighs 8lbs. 1oz. Our family was gracious enough to watch the boys for me again today so I could come and talk to the physician team regarding his care. In talking with the Nurse Practitioner this afternoon we were informed that he has malabsorbtion, negative weight gain and is failing to thrive; all of which make up what she referred to as short gut syndrome. In a nut shell that is where his re-routed gut is so small that the food passing through doesn't remain long enough for his body to absorb the nutrients. As a result he is "dumping" the majority of his food directly out of his ostomy rather than it being digested. There is a delicate balance here as to what is the right amount of formula for him. He needs enough to continue to grow but not enought that his body cannot process. He is currently on 25 cc's per hour every hour and they are taking him down to 9 cc's every hour. Since he will no longer be on "full feeds" he has to go back on the TPN. One of the other major concerns with this is the fact that he already has liver disease from prolonged exprosure to TPN and the last thing he needs is to go back on it. He will also be put on lipids which is a fatty substance to help him grow. There are some of his labs that are particularly of concern to the team and they are watching those (it would take way to long to go into all of this). Lastly, I just met with the Nurse Practitioner again and she said she has some bad news. After talking to the surgeon they have determined that his remaining bowel cannot be reconnected for another 6 weeks due to his failure to thrive. She said that puts it at mid-May with him not coming home until he's at least 6 months old. My heart is so saddened by this news; I can't begin to tell you how much so. It is a good thing to be in God's hands and in His strenghth for at the moment I feel mine is completely gone. As I close this message the following scripture is resounding in my spirit:

Not by might, nor by power but by MY spirit says the Lord!

Hello again,

Since our last journal entry things have been a bit chaotic concerning Isaiah's surgery. On Tuesday his nurse practitioner had been informed that Isaiah's surgery had been put off for another 6 weeks. Yesterday afternoon I received another call from her indicating that she had good news; Isaiah's surgery was now scheduled for next week. I was incredibly confused about all of this and was given no explanation for any of it. I went today to the hospital to try and sort this out only to find out that he is literally scheduled to have the surgery on Monday, yes, this Monday. I have a meeting with the surgeon tomorrow afternoon to get to that bottom of this situation. Obviously Frank & I want what is best for Isaiah and want to ensure that everyone involved are making decisions with his very best interest at heart. I will update you all soon as I know something tomorrow regarding his surgery.

Thank you all for the kind and encouraging words you leave in our guestbook. It is truly such a joy to read them! Thank each and every one of you for the prayers, time and love you have given our family.

God bless,

The Daruk Family

Archives From Caring Bridge 3/20/08-3/24/08

2009-12-14T07:17:00.000-08:00

Thursday, March 20, 2008 8:06 PM, CDT

Good evening,

Joshua is crying as I write so I must do so very quickly. Yesterday Isaiah developed a small infection around his g-tube site so they place him back on an antibiotic. Today a large area around his stoma is very red and purple and is extremely sensative to the touch. They are running another septic workup on him, have stopped his feeds, put him back on 3 antibiotics and put him back on TPN and lipids (intravenous nutrition). They also did a belly ultrasound scan and x-rays which both came back normal praise God! Surgery came in and took a look at him however and have him on their watch list. Please pray with us that the Lord will reveal to the physicians what is going on with Isaiah once and for all! I pray for eyes to see and ears to hear so that the correct course of action can be taken. I will update everyone as soon as possible!!!

Saturday, March 22, 2008 8:55 PM, CDT

Good evening everyone,

Today, along with the past few since I've last written have been very good days. Isaiah's redness has decreased around his g-tube and ostomy sites. He is on 3 different antibiotics and is back on feeds (17cc's per hour, every hour). He weighs 8lbs. 5oz. so he's literally 2lbs smaller than Joshua and you can certainly tell the difference. When looking just at their heads they seem the same size however Isaiah's bones are so small and there is absolutley no extra padding on them like Joshua's. At this point in time we are so gratefull that Isaiah is doing well and expectant that he will continue to be well! Today Joshua and I went to see Isaiah while Elijah stayed home with Frank. He was moved to a different room due to renovations in his old room. His new room is much bigger and even has a window. It's so wonderful to see signs of spring outside his window - as each flower blooms I know it draws us one day closer to bringing our sweet little Isaiah home.

I pray that everyone is blessed beyond measure on Easter Sunday and may you each celebrate the resurrection of our dear Lord Jesus!

Monday, March 24, 2008 8:29 PM, CDT

We pray that you each had a very blessed resurrection Sunday. Frank, Elijah, Joshua & I went to the hospital to see Isaiah and wish him a very blessed Easter. It's quite a challenge doing that because Elijah is unable to go into Isaiah's room so that leaves one of us with Isaiah & Joshua and the other running around with Elijah. God's grace is sufficient though because we always have a great time. It's wonderful knowing the entire family is in one place also. We were home about 2 hours or so when we noticed just prior to a feeding that Joshua's feeding tube had burst and came completely out exposing the hole in his abdomen. We had been told by surgery that if that happens to go back to the ER since the stoma (hole in abdomen) can close up in 3 hours. After yet another ER stay (this one only took 3-4 hours though) we came home with Joshua's new mic-key button attached. He went almost 8 hours without eating and he wasn't a very happy little camper. When we got to the ER they put a catheter in his stoma to make sure it didn't close up before surgery could replace the tube. We also had to get an x-ray to confirm the proper placement. Despite the unexpected trip back to Vanderbilt we had a very peaceful and pleasant Easter. Isaiah is doing well and weighs only 8lb. 6oz. Please continue to pray with us for his nutrition to be supernaturally accelerated! He is significantly smaller than he should be right now so we're praying for this. He should come off the 3 antibiotics he's on this Friday or so. We're awaiting a call from surgery for an idea of when they'll reconnect his bowel although we've been told that Isaiah will need to go at least a week without needing antibiotics or having any source of infection before we can proceed. I must go now so have a blessed evening!

Archives From Caring Bridge 3/10/08-3/14/08

2009-12-14T07:15:00.000-08:00

Monday, March 10, 2008 9:49 PM, CDT

We have lots of good news to report on Isaiah! His CRP is down in the 40's, his white blood cell count is within normal limits, his color looks much better, his rash looks better, he is having much less frequent bradys and he is having awake periods. His CT scan does not appear to reflect an abscese and his spinal tap returned negative, praise God! Cultures on the spinal tap as well as blood are still pending. We greatly rejoice in this wonderful acceleration in his health. Since no test revealed the source of infection there is still some concern. He seems uncomfortable at times and he is still receiving pain medication. At this point in time he will finish his course of antibiotics and he will be continually monitored. We will keep you all posted as much as possible!

In Christs love,

Callie

Wednesday, March 12, 2008 7:36 PM, CDT

Good evening,

Yesterday afternoon we met with Isaiah's neonatologiest. After further review of his CT scan it was discovered that he has bilateral (both sides) fractures of the 6th & 7th ribs and he was diagnosed with Osteopenia of prematurity. This affects premature infant where adequate nutrition has been comprimised. Because Isaiah has always had some feeding intollerance and was on feeds and off feeds so frequently his bones where not receiving enough nutrients (specifically calcium and vitamin D) in order for his bones to develop and become strong. His bones are extremely fragile and brittle. There are signs placed in his room to ensure everyone touching him does so as infrequently as possible and as gentle as possible. The short-term treatment for him is starting feedings as soon as possible with a special formula that will maximize his nutrition. He will also receive additional nutritional supplements as needed. We have been informed that for at least the first year of his life he will have to be watched extremely closely for signs of fractures as he will be highly suseptable to them. We were told he should be held and touched as little as possible with no jerking, no leaning, no odd movement or angles and absolutley no rough play or falling/tripping. Our physician indicated that becasuse Isaiah responds to pain by becoming apnic (stopping breathing) we will have to be extra careful with him. Also, they indicated we were very fortunate that the rib fractures were away from the lungs (praise God for that)! So, what do I chose to rejoice in today? The fact that we now know what is going on with him is a blessing. The fact that it could have been much worse; a bowel issues, further surgery, etc. So, again I chose to say that this is the day the Lord has made and I will rejoice and be glad in it. He will continue to carry little Isaiah through this and I beleive for supernature acceleration of strong and healthy bones!

This is all we know about it at this point however I will update you as I get new info.

In Christ love,

Callie

Friday, March 14, 2008 8:28 PM, CDT

I haven't written anything concerning Joshua in a while so I'll start with him today. Last week when his mic-key button was placed he weighed 9lbs. 8oz. Needless to say he is growing very well. His feedings by bottle have resumed now that Isaiah is doing better and they are going very well. He has a follow-up doctor's appointment with the pediatrition on Monday. Tennessee Early Intervention came out on Thursday and assesed his development to determine eligibility for their program. He is such a joy!

Isaiah is doing great also! We visited with him today and he was alert and looking around. He responds to my voice by opening his eyes really wide. He is still in his isolete although I am sure he will be moved to a crib soon. His voice seems to be a little sore and irritated from being intubated so I'm prayed that any swelling from that will go away.

REQUEST: If any of you have children (if not you are welcome to do this too) that would like to make a get well card, encouragement card, scripture card, etc. for Isaiah he would love that! He already has lot's of them in his room and has plenty room for more. For those of you in Adairville you could get them to my Mom or Dad. The hospital's address is also listed on this site. If you mailed them you would need to indicate the following:

NICU - Pod C / Isaiah Daruk

I would love to create a scrapbook for him one day with all the cards and get well blessings people sent him.

Archives From Caring Bridge 3/4/08-3/9/08

2009-12-14T07:12:00.000-08:00

Tuesday, March 4, 2008 5:20 PM, CST

Today has been yet another day filled to overflowing with it's own challenges and excitement. I must tell a funny story about yesterday before I get into today. Yesterday morning I awoke to the sound of Joshua's feeding pump going off at 6:00am. I quickly showered and dressed myself as well as Joshua in order to leave the house around 7:00 to make his appointment. I then packed his diaper bag and made sure his milk, medicines and feeding supplies were ready for the day ahead. All the while Elijah was lying awake in his bed. He had squirmed on and off but hadn't cried so I took this extra 45 minutes to get ready. At the very last minute before I had to leave I wanted to hug and kiss Elijah so I went in to get him. As I opened the door I smelled something rather unpleasant and I entered to see that in the 45 minutes I'd left him laying there he had removed his diaper and had left little "presents" for me all over the floor and in his bed (not to mention his hands and feet - UGH). He, along with his bed were completely drenched! There is hope however, since there were invaluable lessons that I learned. Mainly, NEVER EVER put a toddler to bed without pants! What was I thinking? :o) Although at the moment I was feeling rather stressed I can now laugh at the things we go through as mom's! Perhaps there is no greater lesson learned that those made through error!

Ok, just wanted to make everyone laugh! So, today has been a much better day on that front. Joshua has rested peacefully and has successfully taken all 3 bottles (5 cc's per bottle). Again, we learned through error that the best time to give it to him was after he'd feed through his g-tube. He's incredibly smart and when we gave the 5cc's first and in the middle of the feeding it did not go well. He was very well aware that the pacifier was not producing anything and he was not happy about it!

Isaiah is doing well today also. We are praying that he rearrange his sleep/awake schedule since it appears that he's awake frequently overnight. Isaiah was on so much pain medication for so long he has been given methodone to avoid his body from going through withdrawls. They are going to slowly wean him off the methodone in the next several days and they are saying this process can be very difficult for the baby and that I should make plans to be there and comfort him. Please pray with us that he will not go through this difficult period of withdrawls and that his body will react well to being taken off this medication! He weighed 7lbs. 10oz. last night! Tomorrow is Joshua's follow-up with the surgeon regarding his g-tube. He is supposed to have a mick-key (unsure of spelling) button put in place of the g-tube which is a more permanent (although we're not beleive he'll need it very much longer) way of feeding him. The button is nearly flush to his skin rather than the approx. 10 inch tube coming out of him so we're very excited about this. It will certainly make feeding and dressing him so much easier. He can also take a full bath and lay on his stomach with it!

I am hearing some adorable little one's downstairs so I must go. Be blessed!

Friday, March 7, 2008 2:19 PM, CST

So much has happened since our last journal entry. Around 3:00am on Thursday morning we received a call from Isaiah's nurse that he had several spells where he had to be bagged and that his hematocril levels were low enough they needed to give him a blood transfusion. A few hours later his white blood count and CRP (markers for infection) came back very elevated. He once again had became septic. We arrived early that morning and throughout the day he continue to have multiple spells and episodes where he completely stopped breathing. His upper right lung had colopsed and he went into respiratory distress. They re-intubated him around 3:00pm yesterday. Infectious disease came and placed him on 4 strong antibiotics. Surgery has examined him and they have no reason to belive this is gut related, praise God! At this point we are awaiting the results of the blood culture along with other tests. Currently Isaiah is on pain medication to allow him to rest comfortably. He is not tolleratning being touched or moved at this time. Yesterday Frank & I knelt before his bed and prayed in earnest. We are sick and tired of this and simply refuse to allow these attacks on Isaiah to continue! Please pray with us that no matter what the doctor's reports say, this he will be and is healthy and strong in body!

Sunday, March 9, 2008 9:19 PM, CDT

Dear Friends and Family,

As of right now Isaiah is somewhat stable. His nurse last night recorded 101 heartrate drops/spells in a 10 hour period. He is still on the ventilator and remains on 4 powerful antibiotics. Today he developed a rash and we were told it was not antibiotic related. He was given a spinal tap and an EKG. Tomorrow he will undergo a CT Scan to help identify the source of infection. We were told by several attendings that Isaiah's condition is a mystery and that they are very concerned. They would like him to undergo some test realed to immune deficiency if the CT Scan does not yeild any results. In the midst of all of this uncertainty there is one thing we are very certain of - God holds ALL the answers and none of this is a mystery to Him. Please pray and beleive with us that God's great wisdom will be imparted to each and every medical professional working with Isaiah. We continue to beleive for complete healing in his body and will accept nothing less. Please pray for our family during this especially trying time. There simply are not words to describe what we are going through and your prayers truly make such a difference.

With love,
Callie

Archives From Caring Bridge 2/28/08-3/1/08

2009-12-14T07:11:00.000-08:00

Thursday, February 28, 2008 1:24 PM, CST

Isaiah is having a very good day today. The only change I have to report is that he is now taking 26 cc's of breast milk every three hours! I rejoice in this news because it means he is tolerating the feedings very well. I miss him so very much and I truly can't hardly wait to go and see him again. Joshua is having a good day as well. Elijah is such a great big brother. He will come up to Joshua several times throughout the day and pat him, rub him or put his head next to him and hug him. I anxiously await the day all three boys are home, healthy and playing - what a blessing that day will be.

Saturday, March 1, 2008 9:42 PM, CST

After waiting an entire week, I finally laid eyes on and held my sweet little Isaiah today. As I did so I couldn't help but wonder, are there words that can express God's goodness, His mercy and His power? Isaiah is absolutley a miracle and evidence of the healing power of the blood of Jesus! What would I do and where would I be without this knowledge? I do not know the answer to that question but thank God I don't need to. We have had so many people compliment us on how we are handling this situation and I am quick to give God all the glory for it is His hands we are in and in His strength we are walking. I have seen so many hurting mothers and fathers throughout the past (nearly) 3 months and it is my deepest desire to be an encouragment to them. We have had numerous health care professionals throughout this time who have told us that they have often wondered why they are where they are and after meeting and caring for Isaiah they now know. He is a blessing and a jewel and will be used greatly by God! I beleive everyone who meets him knows just how special he is! He had such a great day and is doing wonderful!! Tonight he weighed 7lb. 15oz. and is taking 45 cc's every 3 hours. I even changed his ostomy bag today for the first time. It felt so wonderful to care for him! So, as we pray please beleive with us that he will continue to tolerate his feedings well and that when they go in to reconnect his bowel that every inch will have healed perfectly and that it will be as if he was never operated on.

Be blessed and have a great Sunday!

Monday, March 3, 2008 7:23 PM, CST

Good evening friends and family! Today was Joshua's suck/swallow test and he did well. The study showed that he was still experiencing some laryngl penetration (something that shouldn't be happening) however, we can now start introducing the bottle 3 times a day with 5 cc's per feeding. As the speech pathologist said, I beleive as he begins feeding by bottle again this will grow stronger and stronger! We will go back in 3-4 more weeks for another test to see how he's matured. Please pray with us that each feeding will go perfectly smooth and he will know just what to do and every drop will go in the right place! While at the children's hopital we visited Isaiah and he's doing so well. He's simply adorable and he was very happy in Mommy's arms, although I'd be hard pressed to say who was happier - him or me! :o) He did have a spell that required stimulation while we were there, however I am not moved by what I see and I continue to beleive for his COMPLETE recovery. We are all doing well adjusting to our new arrangements at home and busy is simply an understatement; I can only imagine how full our days will be when Isaiah get's home. Thank God for his grace upon us to do what we cannot do in our own strength!

Archives From Caring Bridge 2/24/08-2/27/08

2009-12-14T07:09:00.000-08:00

Sunday, February 24, 2008 9:46 PM, CST

Hello friends and family,

Isaiah is doing so well today! He weighs 8lbs. 1oz. so he is doing exactly what we prayed he would do - lose his swelling quickly - I praise God for this great news! He is tolerating his feeds good, however they are still taking it very slowly with him so he is still only getting 4 cc's every 3 hours.

Joshua has had a really tough day and so has Mom & Dad. The day is nearly over though and I trust that with the sunrise in the morning will come a fresh, new, peaceful day.

As always, I will end with giving God the greatest praise for all He has brought our family through and thanking each and everyone of you for your continued prayers!

Tuesday, February 26, 2008 1:27 PM, CST

This is the day the Lord has made, I will rejoice and be glad in it! There are days when making this statement comes so easily and there are others where I must literally chose to make this statement of faith. These was great joy in bringing Joshua home and great sadness in leaving Isaiah. As a mother you desire to be everything to everyone and right now that is simply not possible. I will however, give all that I can give to each and everyone of my children and that is love no matter the distance. As you continue to lift the children up in prayer please do so for me as well. I would be dishonest if I said this was not an extremely difficult time with many ups and downs. No matter what heartache may come I continue to rely on God knowing I and my family are safe, comforted and loved directly in the palm of His hands.

Isaiah is having a very good day! He weighs 8lbs. 2oz. and is looking so much better with having lost most of this excess fluid. His feeds have been increased to 8cc's every 3 hours because he continues to tolerate them well. We have a CD player in his room continually filling his heart with praise and worship music. He was also moved from an isolete to a small crib since he's regluating his own body temperature. Frank talked to the doctors yesterday and they told him that Isaiah would remain in the hospital until they reconnect his bowel which would be another 4-6 weeks away. Please pray that our schedules for helpers would allow for me to go and visit as much as possible. Right now I am only getting to go about 2 times a week, which is difficult!

Joshua is doing wonderful; we had a great day yesterday. He goes tomorrow for his suck/swallow so I will update you as soon as possible on this.

Please accept a huge e-hug from our family to yours for all your love and prayers.

Wednesday, February 27, 2008 9:58 AM, CST

Snowed In - That's just where we are today. Early this morning we headed out in our mini-van to Vanderbilt however we didn't make it much futher than our driveway. The tires on our van are not in great shape, not to mention a mini-van isn't the best vehicle to drive on ice. Joshua's suck/swallow is rescheduled for Monday (March 3) morning. Frank is home with us today along with my parents who were planning to watch Elijah and we are all enjoying our day. Mom came in today and her back has really been hurting her so as you pray please remember her.

Isaiah is doing very well today; he slept last night from 10:00pm until 3:30am so I praise God for that. It may very well be that he will be sleeping through the night when he comes home; my will that be a blessing! He stills weighs 8lbs. 2oz.. I was so excited to see him today; hopefully it will not be much longer before I can see him again. Since we have a little extra time on our hands (and great helpers) we will try to put the pictures on the site today.

Once again, I am so thankful for each and everyone of you, your prayers and your kind words in the guestbook. Please continue to leave us messages; they are such an encouragement!

Archives From Caring Bridge 2/22/08-2/23/08

2009-12-14T07:05:00.000-08:00

Friday, February 22, 2008 1:14 PM, CST

Today is such a wonderful day! For the first time in weeks Isaiah's only current issue is severe swelling! He now weighs 8lbs. 15 oz and just prior to his first bowel surgery he weighed just over 6lbs, so that gives you an idea of just how much edema he has. His physicians are telling us this is very normal and will eventually go away. Please pray and beleive with us that every single ounce of swelling will go away quickly! We have other great news today - the surgeons came by and after poking on his ostomy (bowel coming out of his abdomen) stool and other fluids came out! This was the first step that had to take place in order for him to begin feeding again. His nurse said he has been wide awake today and that she's almost certain that he smiled at her yesterday. Oh, how I long for him to be home with us! I trust that the time he remains in the hospital will go by very quickly.

I also have great news concerning Joshua; he had such a great night last night! He seemed happy and content and was just a perfect little angel. It may not seem like alot however I will take each and every blessing as they come during this stressful time. We truly are amazing at how God is keeping us under His wing during this time and how he's so beautifully provided for us.

Saturday, February 23, 2008 6:46 PM, CST

Good evening! I am here at the hospital with Isaiah and he's having a good day. At 4:30pm I was able to give him his first feeding in approximatley 3 weeks. It was only 4cc's (about 1 teaspoon) however it was a start! I put it directly down his g-tube and although it was a very small amount he seemed to be satisfied by it. I pray that he tolerates it well so he will be able to continue feeding. I also watched the nurse change the bag on his iliostomy. I was overcome with so much emotion watching her; how this was so very different than anything I'd had pictured for Isaiah and how I would take this from him in a heartbeat. No matter what we have to go through I truly praise God that he is alive and that I can do this for him. I know it is only temporary and this too shall pass! His swelling has come down slightly and he now weighs 8lbs. 11oz. I held him today and I know he smiled at me at least 4 times. He looks so much healthier and I am so grateful. We are contining to be blessed with great staff, great family and great friends without which I truly do not know how we could go through this.

Joshua is doing great at home. He continues to grow and is simply adorable! He looks so much like Elijah did as an infant. He goes this Wednesday to have another suck/swallow test to see if he can begin taking a few cc's of milk by bottle. Until his Dysphagia is gone and he has matured we will continue to feed him through his g-tube, however, we must continue to do this test every 2 weeks to check on his status. If it's better we can begin introducing the bottle a few cc's at a time until he can build up to full-feeds. Frank was kind enough to let me stay at the hospital tonight and be with Isaiah so I pray for God's grace upon Frank to handle everything needed tonight. He is a truly amazing husband and father so I have no doubt that he'll be great! Please say an extra special prayer for him for me. :o)

With much love,

Callie

Archives From Caring Bridge 2/15/08-2/21/08

2009-12-14T07:02:00.000-08:00

Friday, February 15, 2008 2:30 PM, CST

Since my last journal entry many things have taken place. On Thursday morning the surgeon examined Isaiah once again and determined that there may be additional diseased bowel remaining and that another operation was needed. He had hoped to pull the bad bowel out through his existing ileostomy, however he did end up going in through Isaiah's old incision to take a closer look.

Thursday, February 21, 2008 9:31 PM, CST

I stopped in the middle of my last journal entry so let me continue. Isaiah did undergo yet another exploratory surgery last Thursday and more dead bowel was found. In fact, of the 3 centimeters that were removed some had already perforated which is what was causing him to remain septic. Since the last surgery he has recovered so much better. He was taken off the ventilator yesterday and he looks so much healthier. He still has some extreme swelling and is having a few heartrate dips however apart from that he is doing so very well.

I got to hold him yesterday for the first time in 3 weeks and it was so wonderful. I sang God's praises in his ear for nearly an hour yesterday and I marvel at what God has brought him through. I don't know if I created this phrase or if it already exists none the less I kept thinking yesterday as I held him that "through great adversity comes great destiny." I beleive this is true for my prescious little Isaiah (as well as my other children who have had their own adversities since an early age).

As I hear from family and friend who are praying for our twins and I so deeply touched. I know there are literally people from all over the country who are and have been on their knees praying for our sons. When I hear of this I cannot help but think this - since the moment we found out they were to join our family it has been our sincerest hope and prayer that they would just as we've prayed for Elijah, strong men of God and that they would share the message of Jesus throughout their lives. In a difficult moment throughout all of this I felt the Lord speak to my heart and say that from they moment they were born they have brought people to the Master's feet. Oh my, they are fulfilling their destiny even from birth. May our precious son's continue to do this all the days of their lives. So, with that said, to all of you who are been on your knees and in your secret place of prayer for our boys I indeed thank you. The effective prayers of righteous men and women prevail and my have we prevailed. I know in my heart that God will honor and reward each and every one of you who have done this.

Before I forget, little Joshua was released from the hospital on Sunday and he's doing great. Feeding times are very involved and require intense concentration and with a toddler who already requires your undivided attention it has been quite a challenge. God has blessed me with a beautiful family (mine and Frank's) who have been amazing, truly amazing throughout this experience. Also our church family has been so incredibly helpful along with many dear friends! Withouth all of their love and support I truly don't know what I would've done. God had truly taken care of us and is continuing to do so in such beautiful ways.

Archives From Caring Bridge 2/12/08

2009-12-14T07:00:00.000-08:00

Tuesday, February 12, 2008 4:11 PM, CST

This is my first journal entry since our journey in the NICU began. In order to catch up to where I am you should first read "my story" on our main page. In an effort to make each journal entry short I will try to start with Isaiah & Joshua's current status:

Isaiah

White blood cell count is elevated therefore an infection is suspected - blood culture is being drawn
Blood pressure instability - something that is being watched at this point
Heart murmor is more prominent - echocardiogram is being done
Stoma (his Iliostomy) does not appear to be healing properly and is oozing - culture is being drawn
Continual bradying (heart rate dips) and oxygen desaturations upon being touched, suctioned, moved etc.
While these are the Isaiah's current medical issues the fact still remains that he is healed by the blood of Jesus and we are continuing to beleive for the complete manifestation of that. No matter what the doctor's report are we are standing on God's report. Please continue to pray with us that all of the things mentioned above become normal very speedily!

Joshua

Low hematocrit levels (his body's ability to create it's own red blood cells) - he is being given an injection 3 times a week with a drug that is supposed to stimulate his bone marrow to create it's own red blood cells
Physicians are going to retest his hematocrit levels on Friday and depending on the results we may get to go home this weekend. He has healed beautifully from his gastric tube surgery and has had no problems with his g-tube feedings. We are very excited at the thought of bringing Joshua home for good this time. At the same time it will make coming to the hospital to visit Isaiah much more challenging for me. I trust however, that just as God has made a way for me to come now He will continue to do so.