Brief but GREAT news!

I just received a text message from Carrie that reported " Heath just ate 3/4 jar of applesauce. Maybe bottle tomorrow. Maybe home on Monday or Tuesday?"

This is TREMENDOUS progress for him even since yesterday! I just wanted to share the good news. Carrie will call me later this afternoon so I will update more then.

The New Year looks to be one filled with HOPE!

Blessings,
"Gran" Sarah

Tuesday Morning

I had a lovely visit with Baby Heath and Carrie this morning - in a REGULAR room! When I arrived however there was a flurry of activity and Heath was very fussy (frankly, I don't blame him!). He continues to improve but is very sensitive to sensory stimulation and becomes quite emotional. He saved all his little smiles for his mommy this morning and them promptly teared up- his emotions were a little overwhelming for him! Once the doctors and nurses left Heath's room and it became less hectic, Heath settled down for him mommy to eat her breakfast and for Gran Sarah to rub on that sweet little head of his and look at those big brown eyes I love! He quieted down and was able to sleep a little. I hope it gave mommy a break-even if for just a little while.

Heath's new favorite toy is an empty syringe he has been holding for 5 days and refuses to give up for anyone. So, the therapists have become very creative in using the syringe to help him re-learn some fine-motor skills. Because of the lengthy (and necessary) sedation, Heath is undergoing speech, occupational and physical therapy to learn how to be a 10 month old again. He is certainly getting "up to speed" well but tires easily, so they take it step-by-step.

Heath is still being weaned off of the pain meds but withdrawal symptoms seem much better. The are adjusting his feeding amounts to make him more comfortable and still treating him for high blood pressure. All in all, Heath continues to make amazing progress. Since he is in a regular room however, Carrie and Chris are rotating day-night shifts because someone must be with him all the time now. Heath is most easily comforted by his mommy and daddy so they like to stay close!

Uncle Jamie and "Nana" arrived as I was leaving- two special people who have been successful in coaxing a smile from our sweet Heath. He is doing amazingly well but of course has a long way to go. The Tuttles continue to be incredibly thankful, a bit tired, and so grateful that they can begin to look forward. The idea of going home with Baby Heath is both thrilling and terrifying- emotions Chris and Carrie are trying to adjust to.

Please continue to keep the Tuttles in your prayers.

With a grateful heart,
"Gran" Sarah

Sunday Evening

Chris was gracious enough to call and give me another update. Baby Heath is adjusting well to the step-down unit. Chris said that Heath could "feel" the anxiety level drop when they moved to the step-down unit and he crashed and slept very well!

Chris and Carrie are alternating spending the night with Heath. Heath is consolable pretty much by Mom and Dad only so they are staying very close. Heath did try to pull out his pic line but was (thankfully) unsuccessful! Heath did have a short-lived victory- he pulled out his feeding tube while sitting in Mom's lap no less! Tricky little fellow....but the feeding tube did have to be put back. He has managed to gain one pound since being in the hospital-another victory! (I think he has a secret stash of Christmas cookies!).

Heath's withdrawal symptoms have improved but they are still having challenges with his blood pressure. The doctors are controlling Heath's blood pressure with medication and are trying to figure out the source of the problem. However, all the heart "numbers" continue to look great. Heath is also having some tummy discomfort in the morning for a couple of hours so they are adjusting his feedings a little to try to make him more comfortable.

Chris reported a few small smiles from Heath and his improving interaction with them. So, the good news continues. The Tuttles continue to have quite a road to travel but they are so grateful to have come this far. They are enjoying being with Heath but the days are tiring. They seem to juggle life hour by hour!

Dr. Genie Martin is planning on visiting the Tuttles tomorrow and I am looking forward to a visit on Tuesday. Thank you for your love, prayers, kindnesses and more. Baby Heath continues to improve and heal-and we continue to rejoice.

Blessings,
"Gran" Sarah

December 26- Step Down!

Chris called me this afternoon to report that the last couple of days had been challenging. Heath has had a difficult time withdrawing from the medications. The doctors were trying to wean him off of the necessary pain/sedation meds but felt like the process had gone a little quicker than Heath could handle. So, they have given him a patch and minimal drugs to help him with pain/withdrawal symptoms and things have been much calmer and he has been able to sleep (something that has not come easily for Heath the last couple of nights). He is also quite comfortable on Carrie's lap. So much so Chris is trying to "prop" her up so as not to disturb Heath!

The last couple of days, the doctors/nurses had a difficult time putting in a line (port)for the administration of any necessary drugs (including the antibiotics for the CMV infection) but they were finally successful. As you can see from the picture, the line finally went in on the left side of his neck. They will be testing the port to make sure it is working properly but all seems to be working well.

The Tuttles have enjoyed visits from "Nana" (Carrie's grandmother), Ami and Bob Hill, Uncle Jamie, grandparents Bob and Pat and Genie Martin. The Tuttles were able to spend some time late Christmas Eve with close friends of theirs, the Patty family, who has also experienced a health crisis. The Patty's and Tuttles have been a great source of support for one another.

The 6:00 p.m. update is that Heath has officially moved to the step-down unit!! This is a HUGE step for Heath. Ron Shive (FPC Head of Staff) was visiting with the Tuttles and was able to walk with them to their new room in the step-down unit. GREAT news for Baby Heath (and Mom and Dad). I hope to continue to report more good news in the days to come.

Blessings,

"Gran" Sarah

Christmas Eve

Carrie called this afternoon and was leaving the hospital to take Ella Brooks to the Children's Service at Westminster! They were looking forward to some mommy-daughter time.

Carrie reported a quiet day for Heath. He is still in the PICU until the doctors can stabilize Heath's blood pressure. However, the medical team fully expects him to be out of the PICU in a few days. Heath continues to be progressing well.

The Tuttles anticipate a quiet Christmas holiday with family and plan to stay close to the hospital to spend the days with Heath. They continue to be so grateful for Heath's incredible gift!

The Tuttles are very thankful for your prayers and wish everyone a Merry Christmas!

Blessings,
"Gran" Sarah

Even Better Tuesday!

Tuesday was shaping up to be even a better day for Heath. Now that he is in his mommy's lap, Heath has not found the need to express his "opinion" as much-he is a happy camper with no IV's, no O2, great color (sweet pink cheeks!) and big bright brown eyes. Heath was doing well with his occupational and physical therapists. Our Associate Pastor, Dr. Genie Martin, was playing "peep-eye" with him to his delight!

We have so very much to be thankful for.....Hallelujah!

Christmas Blessings,
"Gran" Sarah

No Ventilator - YEAH!!!!

Great news- Heath is off the ventilator! Both the heart cath. and the extubation went very well. The heart cath. "numbers" were very good. A few numbers are not where they want them to be eventually but are right where they are supposed to be at this stage of Heath's healing.

The only pain medication he is on is Tylenol. His lungs were a little "mushy" earlier today, but since Heath has expressed his "opinion" following the heart cath. (a.k.a. crying and mad!) his lungs have cleared beatifully! So, mom and dad are going to be more "hands-on" in the coming days as he adjusts to being awake more and "voicing" his displeasure about the nurses "bothering" him! I never thought a crying, angry baby would be such great news! Especially when this "Gran" used to head straight downstairs to our church daycare if I heard Heath crying! (even though he was in very capable hands- our daycare was VERY patient with this "Gran"!)

Heath's CMV infection continues to improve and he will likely be on medications to control that for a few weeks. He is beginning to make the transition to oral medications rather than IV medications in preparation for going home soon (but Carrie & Chris affirm- not TOO soon!).

The Tuttles continue to be so grateful for your prayers, kind words and tremendous support. We continue to rejoice for Heath's remarkable gift and to pray for his recovery.

Christmas Blessings!

"Gran" Sarah

Good Sunday!

Carrie and Chris had a good day- they were able to hold Heath for the first time in way too long! Carrie's brother, Jamie, took these great pictures today! Heath will have his heart cath. first thing in the morning and then they will extubate him. Once they extubate him, they can begin to wake him up-Heath continues to improve!

I'll update again tomorrow once I speak with Chris or Carrie. Continue to keep Heath in your prayers as he continues to make great progress.

Blessings,

A Very Grateful "Gran" Sarah

Saturday

Carrie called this afternoon to tell me it has been a quiet day. The doctors had planned on extubating him today but decided not to. Heath had been moving around a lot last night and irrated this throat causing some swelling. They are hoping that with some rest today, they will be able to extubate him tomorrow.

The doctors are still planning on performing a heart cath. on Monday. He will have to be intubated again for that so the doctors are making a decision on extubation based on what will be the least invasive and make Heath more comfortable. Heath has developed a CMV (cytomegalovirus) infection (a herpes like virus) that is quite common for most folks. However, since Heath's immune system is suppressed, they are watching the virus closely. All continues to look good for now and this is not an uncommon occurence.

Carrie mentioned that they had received some Christmas cards from some Burlington folks with family pictures enclosed. The pictures made Ella Brooks very happy. She was carrying them around at breakfast this morning announcing the family members in the photo!

Please continue to pray for Heath and the Tuttle family. He has received a miraculous gift but still has a long road ahead.... We continue to rejoice and trust in God's providential care.

Blessings,
"Gran" Sarah

Improving!

I just returned from a lovely visit with Heath and Carrie. As always, Carrie was so incredibly generous with allowing me time with baby Heath! We enjoyed some breakfast together (Carrie's big treat of the day from Biscuitville!) and then enjoyed some time with Heath.

The good news to report today is that his chest tubes and catheter have been removed! His kidney function has improved greatly. The doctors are beginning to wean him off of the stronger sedative medications. Doctors will take a chest x-ray tonight and begin to work on helping his lungs get a little stronger from some normal post-op/ventilator issues. However, they expect he will be off the vent in a couple of days and begin to be more fully awake then. Of course, the more he is awake, the more time he will need constant supervision from family-what a great problem to have!

I also got to see the "beautiful" line down his chest that points to that beating, healthy heart! What a great line that is! As he woke up a little from the sedation today, he opened those big beautiful brown eyes....good medicine for this "gran"!

As I was leaving Duke today, I also saw Carrie's brother Jamie, sister-in-law Sarah and high-school friend Wendy (who surprised Carrie with a visit). Wendy not only surprised Carrie with her visit but with a lovely "gift" from a fundraiser she had organized. Carrie was so grateful and appreciative that Wendy had offered such a heart-felt gift from folks who didn't even know the Tuttles but wanted to help! Christmas miracles abound!

I hope to update more tomorrow. Our head of staff, Dr. Ron Shive, will check in with the Tuttles tomorrow. Until then...

Let us rejoice!
"Gran" Sarah

Tuesday's News

I just spoke with Carrie and was glad to hear that she is feeling better from a cold she is fighting. She reports being able to get some rest the last couple of nights which "mama" Sarah was glad to hear!

"Gran" Sarah was pleased to hear that our Baby Heath continues to do well but of course is experiencing some normal post-op reactions to the surgery. His kidney function is not quite where the doctors would like for it to be but again, is a normal reaction to this major surgery. Heath spiked a bit of a fever last night but it is better today and they continue to give him antibiotics to fight potential infections. He is a little "puffy" Carrie reported, but they are constantly adjusting his medications in response his changing needs. Tomorrow they hope to wean him off off of the ventilator but will see how he progresses in the next 24 hours.

Monday the doctors expect to do a heart catheterization and perform a biopsy as a normal part of his follow up care. Doctors will continue to perform a heart cath. at benchmarks throughout the next year and then yearly after that as part of the normal course of treatment.

He of course is immunosuppressed so will need to be isolated from outside visitors for some time when he goes home. That will certainly be a challenge for the welcoming Tuttles!

Also, the Tuttles are acutely and painfully aware of the loss experienced by the donor family in order for Heath to have this wonderful miracle. So, they ask that you pray for the generous act of grace extended to them by this selfless donor family. They also covet your prayers for the medical team that is caring for Heath and for Heath's continued healing and recovery.

Finally, Ella Brooks has enjoyed a few days with visiting cousins. She also had a Christmas party at school today - exciting! So "Miss Ella Brooks" continues to enjoy life and make sure that someone is always with her baby brother!

Blessings,
"Gran" Sarah

Monday's News

Our Associate Pastor, Dr. Genie Martin, visited the Tuttles this morning and reported that Heath continues to amaze the doctors with his progress. Heath's new heart is working beautifully and his other organs are responding beautifully. What an amazing gift we can all be thankful for!

I also spoke with Carrie's mother, Ella, today and she has received the information regarding the tax-deductible giving opportunity from Cary Presbyterian Church. Please note the following:

The Session of Cary Presbyterian Church has approved the creation of a “Good Samaritan Fund” which is a designated fund established specifically to receive monetary donations to help pay the medical expenses and/or other expenses of a dire nature for individuals within the CPC family. All donations should be made payable to Cary Presbyterian Church. The donor should specify the “Good Samaritan Fund” and may designate the intended recipient on the memo line. The Session will, in good faith, honor the donor's intent to support the designated family with the donated funds. The Cary Presbyterian Church Session, in conjunction with the Cary Presbyterian Church Missions Team, has the discretion to direct the funds contributed to another recipient should it not be possible to honor the original designation. If you have any questions please contact Cary Presbyterian Church Financial Manager, Barbara Carew at 919-467-8700 or barbara.carew@carypresbyterian.org. All contributions can be mailed to:

Barbara Carew
Finance Manager Cary Presbyterian Church
614 Griffis St.
Cary, NC 27511

Thanks to all who continue to pray for Heath, his full recovery, his family and especially for this amazing miracle we have received....we indeed rejoice!

With greatfulness,
"Gran Sarah"

Doing GREAT!

I went by to see Carrie & Baby Heath and had the wonderful treat of seeing for myself just how great he was doing. After the necessary "Gran" kisses, I looked at the monitors to discover the very good news that his blood pressure, O2, heartrate...everything is exceeding expectations. Of course, the medical team is always cautiously optimistic, but Heath continues to amaze them with his progress. When Heath came out of surgery he was on 70% oxygen and today he was already down to 30% O2. He is still sedated of course, but they may try to lighten his sedation tomorrow and see how he does. Perhaps a couple more days on the ventilator and if all goes well, he may be off of the vent entirely.

The are anticipating a minimum of 2 weeks in the hospital but will all depend on how well he continues to progress. The entire family is pretty exhausted so they were all going home to get some sleep tonight. Carrie is running on lots of adrenaline and is practically giddy with their good news. They appreciate and continue to be sustained by your love, well wishes, prayers and support.

More updates to come.....

One VERY grateful,
"Gran" Sarah

8:45 a.m. update

Heath's surgery actually started a little later than expected, about 4:30 a.m. It is now 8:45 and they are finishing up surgery, the new heart is doing it's job and Chris and Carrie hope to see him soon in the recovery room. Praise God!

I will keep you updated on Heath's day as I receive information....

I find myself humming the Messiah's "Hallelujah Chorus"!!....
Hallelujah, Hallelujah, Hallelujah.......

With a grateful heart,
"Gran" Sarah

A NEW HEART!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At 3:00 a.m. Sunday morning, Heath was headed to the operating room to receive his new HEART!!!!!!!!!!!!!! What wonderful news!!! We are all so excited!! The Tuttles were alerted of the possibility that a heart might be available earlier Saturday evening but could not fully celebrate until the team landed and they were headed to the O.R.

I will be sleeping (ok, maybe not) with the phone in my hand and prayer in my heart tonight!! I will let you know of any updates.... Surgery is expected to last about 6 hours....

A very grateful "Gran" Sarah

Friday

I spent much of the morning with the Tuttles and found baby Heath to be in a holding pattern. The doctors want to let him rest and continue on ECMO for the weekend and not even attempt to "cycle down" because he continues to tolerate the ECMO so well for now.

One challenge has been Heath's sedation. As he becomes accustomed to the sedation medications, he is more easily awakened by voices-especially his mom's! Yesterday he awoke and tried to "make a break for it" as Chris put it. Chris wanted to simultaneously cheer and calm him down! Their little fighter is still at it! So, they have changed the class of sedative drugs they are using to keep him adequately sedated while connected to the ECMO. He was "dancing" a little early this morning but was resting comfortably by mid-morning.

Because of the challenges with the sedation, and Heath's response to voices, the family and medical team are asking that only family be allowed to visit Heath. The extra voices continue to wake him and that is not in Heath's best interest as he continues to rest in hopeful anticipation of a transplant. The Tuttles appreciate your love and concern so very much and trust that folks will indeed honor their request.

They continue to wait in what has become a "holding pattern". So many of you continue to ask what you can do to help and some first steps have been taken towards establishing opportunities for folks to contribute financially to assist the Tuttle family. So, family friends who have been trying to figure out a way to help are working out establishing two options for giving.

Option 1
If you do not need a tax deductible option, a Custodial Account has been established in Heath's name by his grandmother Ella Strowbridge through the State Employees Credit Union. Checks may be made payable to "Heath Tuttle" and dropped off at any State Employee Credit Union branch or mailed driectly to:
Ella Strowbridge
514 Oak Bluffs
Pittsboro, NC 27312

Option 2
Cary Presbyterian Church (Carrie's home church) is in the final stages of creating a fund under the church's 503C status that will be a tax-deductible giving option. Information will be available in the next few days. I will post the information on the blog as soon as it becomes available.

We continue to wait, hope and pray for the Tuttle family we all love and especially for baby Heath.

Blessings,
"Gran" Sarah

Tuesday Holding Pattern

When I spoke with Carrie this afternoon, she said that today had been a frustrating one for the Tuttles and the doctors. The doctors have tried to wean Heath off of the ecmo machine without success. Their hope was to wean him off before his transplant but are realizing that Heath may need to remain on the ecmo until his surgery. The next couple of days they are going to give baby Heath a "break" and let him rest.

Even though Heath is sedated, he still responds to the voices of mom and dad and wants to move around. This picture was taken on a brighter day- Chris's first day in the pulpit with the Westminster Presbyterian Chuch family. Now you know where Heath and Ella Brooks get their great smiles and energy from!

Carrie was exhausted after a frustrating day at the hospital but looking forward to having an evening at home with Ella Brooks. They continue to be in a holding pattern and pray that Heath will have his transplant surgery soon.

For now, the waiting continues....

Blessings, "Gran" Sarah

Stable Monday

Friends:

I spoke with Carrie and Chris this afternoon. They were encouraged that Heath was able to be off of the ecmo (hear/lung bypass) for about an 1 1/2 hours this morning. Heath did well for that time but did need to go back on the machine. While they would like to wean him completely off the ecmo as soon as possible, they are trying to be patient and go at the pace that Heath can tolerate.

That's all for now. I will update with more info as Heath's progress continues.

With much Hope as we wait.... "Gran" Sarah

Big Sister Ella Brooks

Big Sister Ella Brooks and her very own Christmas Tree in her very own room!

Advent Hope at its best.....

Blessings,

"Gran" Sarah

Call From Carrie Sunday Afternoon

This afternoon I received a call and email from Carrie. This is her latest update....

"Dear Friends--
We walked in this morning to the hospital to be somewhat blindsided--first by the fact that they were going to go ahead and start the "tests" to take Heath off the heart/lung machine and then a few minutes later (after my facebook status post) when we were told that there were some problems and they were not able to take him off after all. We were then led into a quick meeting with the surgeon and cardiologist to explain that they were worried a bit about his lung function but also that the synchronicity of his heart was not what they needed it to be. They were going to need to do a short surgical procedure to put different wires right into his heart to help it "fire" the way it was supposed to "fire." Needless to say, after such a good strong day yesterday, we felt like we had been hit by a 2x4.
They did the procedure and it was successful. He is doing just fine. This may actually set us closer to being able to get him off the ECMO (this is the heart/lung bypass). Right now we need his lungs to clear out a little more. If things continue to go smoothly this afternoon, they may try to start "weaning" him off the ECMO more slowly. They really would like to have him safely off ECMO before they do the heart transplant, but we realize that we have a way to go before we get there. Of course, if a heart became available, they would not turn it down, but we have to proceed as if there will be some time before that happens.

We have realized that this waiting room is a place where people come with so many stories, so many sorrows. We have talked with many of the people about how this feels like a "club" that no one ever wants to join, but somehow, there have been beautiful moments of care and grace for each other. The love, support and prayers from all of you have made such a difference for us in this crazy day to day roller coaster of emotion for us. Thank you. We love you.

OH YES--Many have asked about Ella Brooks and how she is doing. She is enjoying the days with all of her family--fingerpainting, hide and seeking, eating, playing with new friends and picking out a Christmas tree. She told us that she would like to have our family Christmas tree IN HER ROOM. She didn't get that, but got a small artificial one of her own, complete with lights and paper chains. She went with Mimi and Papa (Chris' parents) to Westminster (Chris' new church), and had a ball playing with the other children. She is in the bear-cub class Tuesday and Thursday mornings at the Westminster Preschool. She is constantly asking about baby Heath - most importantly making sure he is not alone. "Someone is with him, right?" she asks.

If you are ever in need of medical care, come on here to Duke. As terrifying as this is, we have felt so good about the care Heath is receiving, every step of the way. Doctors, nurses, specialists, nurse practitioners, respiratory therapists, and everyone one else. We are so grateful. Scared, but grateful."


May we continue to wait during this Advent with hope!- Blessings, "Gran" Sarah

Saturday report from Papa Bob

Papa Bob reports on Saturday:

"Baby Heath had a good day today-still completely sedated. Heart-lung machine and pacemaker doing their jobs. Everything but heart seems ok."

Blessings, "Gran" Sarah

Friday afternoon- Call from Chris

Friday afternoon greetings....

I just received a call from Chris. He wanted to touch bases with the latest on Heath's condition. The doctors have begun their attempts to wean Heath off of the heart/lung machine. Upon Chris's call, he had been off of the machine one hour with good results. The procedure to place the permanent wire/pacemaker device went very smoothly. Heath is officially on the transplant list. They are now faced with the reality that Heath will likely remain in the hospital until he receives his transplant.

As you can imagine, the stresses are many. One stress that is growing is the financial stress. The Tuttles are meeting with some financial advisors on Monday of next week to try to establish a fund that helps them deal with the short and long term expenses of this difficult ordeal. Of course as Presbyterians, they want to proceed "decently and in order". So, for those of you who continue to ask, "How can we help?", this might be the answer. They hope to know more next week. As you can imagine, this decision is one of many difficult ones for Chris and Carrie but one made after facing yet another difficulty reality of the costs of Heath's care and the daily "hospital living" for the family.

During this Advent season, we are learning the very real anguish of waiting...

Blessings, Sarah Beth

Friday's News

I spoke with Bob (Chris's father) this morning and he and Uncle Robert had stayed overnight with baby Heath. During the night, his heart rate became irregular and use of a temporary pacemaker became necessary. Today they are transitioning to a more permanent pacemaker.

The good new is that the echo cardiogram revealed improved heart function and good recovery from the heart "episode" earlier in the week. He will continue to be on the heart/lung machine for a few more days. The decision to wean him off will come when it is time. At this point, they are dealing with one decision at a time. Just as the doctors had told them, Heath would continue to experience "two steps forward and one step back" in this process. Yesterday was the "two steps forward" and last night and today have been the "one step back".

Ella Brooks is doing well and enjoys Playschool with the good folks at Westminster. Westminster continues to embrace the Tuttles and provide tremendous love, support and meals.

Your continued prayers and loving support are sustaining the Tuttle family. Carrie and Chris's parents, siblings, etc. continue to help them find their way through this difficult time. Thanks to all of you for your prayers and offers of help.

Advent Blessings,
"Gran" Sarah

Stable

Genie (our Associate Pastor) visited with the Tuttles this morning. She said the doctors were very reassuring to Chris and Carrie this morning. Heath is responding well to the medications, his blood pressure has stablized and he continues to do well with the heart/lung bypass machine. Their goal is still to wean him off in the next 24+ hours.

We continue to wait and pray for Heath to receive the transplant he needs.....

Blessings, "Gran" Sarah Beth

Difficult News

The Tuttles have had a very difficult day. Heath was not feeling well so they took him into the doctor this morning. I called Carrie just to check in and she said she was with the doctor and that Heath was very ill. The doctors were not immediately sure what was wrong but they were anticipating hospitalization. Carrie said she would call me back once she found out more information.

About 4:30 p.m. I received a call from Ella, Carrie's mother, telling me that Heath was in the Pediatric Intensive Care Unit, was very seriously ill and asked me if I could come and stay with Ella Brooks while the family went to Duke's PICU. Of course I dropped everthing, headed to Carrie's home and Ron headed to Duke.

Ron was able to see the family and discovered that Heath's condition had changed very quickly and has been sedated and placed on a heart/lung bypass machine for the next few days in order to give his heart a "rest". The hope is that Heath can be weaned off of the heart/lung machine in a few days and they will consider a pacemaker in the days to come.

For now, the family is taking shifts staying with Heath and caring for Ella Brooks. Of course the family is worried, exhausted and overwhelmed with this difficult turn of events. Fortunately, I was able to spend an evening with Ella Brooks cooking, playing, reading, pretending and keeping her completely unaware of Heath's condition. Chris's parents, Bob & Pat arrived tonight in Durham ready to do whatever is needed.

The doctors are encouraging Chris & Carrie to go home tonight and get some sleep while they can. The coming days will be challenging and they will need what rest they can get tonight. Chris's sister, Sarah, is staying with Heath tonight so Chris and Carrie can try to sleep.

It is late, and everyone is indeed exhausted. As I learn more tomorrow, I will update the blog again. Please continue to pray in earnest for Heath as he weathers this storm and as they anxiously await a transplant....

Blessings, "Gran" Sarah

Turkey Tales

No big updates to report except a funny Turkey Tale from baby Heath. I was out of town for the Thanksgiving holiday and received a call with Carrie's caller ID. I of course was concerned knowing that we had not planned on talking again until after the Thanksgiving weekend. When I answered I soon discoverd that this was not the "usual call". I quickly called Carrie back to discover that Heath was playing with Mommy's phone and decided to make a phone call to his Gran Sarah. Of course, I think he missed me but I am open to the possibility that he simply pushed a button by accident!

I expect to talk to Carrie the first of the week for an update unless Heath calls me sooner than that!

Blessings, "Gran Sarah"

Thanksgiving

I spoke with Carrie today and they are planning on spending the Thanksgiving week with her mom and family close to home. They are looking forward to time together as the extended family arrives this week.

The Tuttles have confirmed the decision to have Heath's transplant at Duke although they were quick to say what wonderful care they received at UNC. Duke seems to be the best fit for their unique needs and they feel very good about their decision.

Baby Heath had some bloodwork done today which he strongly protested to! He goes back on Monday for an electrocardiogram, chest x-ray and to finalize the additional bloodwork needed while under light sedation. I think Heath will approve! The transplant process is moving along nicely but there are so many important details to finalize. They are hoping that by Dec. 4 or 5 his name will officially be placed on the transplant list. While Heath's need for a transplant is urgent, they have the "luxury" of an otherwise healthy baby and the time to thoroughly prepare for his upcoming transplant.

They continue to have their "ups and downs" as the reality of the transplant takes hold but they draw great strength from your love, prayers and support. The abundance of God's grace continues to surprise and sustain them.

Finally, Carrie gave me permission to post these sweet pictures of some family time! The Tuttles wish everyone a happy and healthy Thanksgiving.

Blessings, "Gran" Sarah

In an email from Carrie, she updates us with the following:

Our world has been turned upside down by Heath's sudden diagnosis two Thursdays ago. We have grieved, moved to Durham, cried, laughed, talked, prayed, gone to doctors' appointments, done research, and so much more...

We have been so deeply moved by the messages, cards, gifts, food, prayers and love of so many people--even people we don't even know. One of these days we will share with you some of the moments of unbelievable grace in the midst of heartache. some is a little too raw right now.

We are coming back to the world--looking to start living in the "new normal" that we find ourselves in. And I wanted to say thank you to you all and give you a brief update.

We are in the final stages of deciding which hospital to use--Duke or UNC. Both of which have really good pediatric heart centers and we had great care at UNC already. We were also really impressed with the program at Duke. Our boy should be on the transplant list ASAP. After that, it is anyone's guess as to how much time it will take. I do know that there aren't any other children under one in NC right now who are on the list, though. They estimate that it won't be longer than 6 months, and probably sooner. We'll start making those preparations soon.
Chris starts his new call as Pastor of Westminster Pres. officially on Monday. We have been so touched by the outpouring of care from this wonderful congregation, understanding even more why God has brought us to one another. We are excited to get started! (well, chris is, and I will look forward to driving him a little crazy with off-hand advising!) Ella Brooks will also start at Westminster's School for Young Children the Tuesday after Thanksgiving.

As you can imagine, it has been tough for us to be able to return phone calls and messages in the craziness of all this hospital/doctor stuff, moving and starting a new call. We hope to catch up with many folks soon!

When I called Carrie this afternoon she was enjoying a wonderful afternoon at the playground with Ella Brooks! The were having fun and meeting new friends. I could hear Ella Brooks giggling in the background. Ella Brooks even had a moment in her busy schedule to speak to "Gran Sarah" and fill me in on the important playground activities! Heath and Chris were having some "guy" time at home!

Heath's doctor's appointment today was not as involved as they had anticipated but the doctor was pleased that his breathing had much improved since his initial exam at UNC. With all of the details to coordinate among doctors, procedures, insurance, etc. the labs and consultations should occur later this week. They are hopeful to have Heath on the transplant list as soon as Monday, November 24 or Monday, December 1. In anticipation of the transplant, the doctors are encouraged that baby Heath is physically as well as he could possibly be with this diagnosis. That is very good news!

They have done much research on the transplant procedure and have discovered not only the importance of having a skilled surgical team but the necessity of having skilled post-surgical care. So, just as a precaution, and with great support from their UNC team of doctors, they are seeking a second opinion from Duke later this week. As you would expect, they want to make the best possible decision for Heath's surgery, successful recovery and be reassured they are moving forward well informed.

Finally, as Carrie opened the mailbox today, she and Chris were both overcome with emotion and gratefulness for the outpouring of cards, letters, gift cards, notes, etc. Carrie said in the moments when she does not feel very strong, she gives thanks for the tremendous strength she gains from each of you and your expressions of love and concern. They are acutely aware that God is indeed at work through the love and support of those they know and even those they have never met. They are most thankful they do not have to make this journey alone.

That's all for now. I'll update more later this week.

Blessings, "Gran Sarah"

Some VERY Good News

Due to the genetic connection of Heath's diagnosis of restrictive cardiomyopathy, the doctors recommended that Ella Brooks be examined for any cardio issues. Following an echocardiogram today, they received the VERY good news that Ella Brooks heart is strong and healthy.

Dr. Genie Martin and crew are taking the final items left in the Greensboro house to the new house in Durham. Carrie and Chris as SO grateful for this help. Genie will pass along hugs from everyone.

Carrie is to call and give me a more complete update this afternoon. More updates to come....

A Way to Help!

Bob and Pat , Chris's parents, posted this note today to let folks know of ways they can help during this time. Bob wrote the following:

So many of you have asked how you can help and I've come up with a way.
You may use the following mailing address:

Chris, Carrie, Ella Brooks and Heath Tuttle
c/o Westminster Presbyterian Church
3639 Old Chapel Hill Road
Durham, NC 27707

Cards and notes are all wonderful....don't expect a reply but know that as they have time and emotional energy, they will open them and know of your love and prayers.AND, if you have the means, why not stick a gift card in the envelope to one of these businesses that are nearby..whether it is to a store that you know that they will be buying all of the little things a different house needs or to a carry-out restaurant where Chris can pickup supper on the way home from church. Some of these offer links where you can order the cards and just have the store send the card to them with a message from you. Here are some that are in the neighborhood.
Maggianos restaurant: http://www.maggianos.com/giftcards/
Firebirds restaurant: http://www.firebirdsrockymountaingrill.com/f_cards.html
Ted's Montana Grill: http://www.tedsmontanagrill.com/store_card.php
California Pizza Kitchen: http://www.cpk.com/gift-cards/
Chick Fil-A: http://www.chick-fil-a.com/#cardsandgiftcertificates
McDonald's: http://www.mcdonalds.com/usa/shop/certificates.html
Chili's: http://www.chilis.com/giftcards/
Target: http://www.target.com/giftcards
Boston Market: http://www.bostonmarket.com/card
Costco: http://www.costco.com/
Those of you who are emailing updates on the family to others, please feel free to copy the contents of this note. This is the longest I've been on email in a week!More later....and I can't tell you how good it feels to all of us to hear of your prayers and support! Love, Bob and Pat

Wednesday, November 12

The Tuttle family continues to settle in to their new home. Unpacking boxes continues amid the necessary doctor appointments. Today, Baby Heath and Ella Brooks went to visit their new pediatrician and Chris and Carrie were pleased to have established care close to their new home. Monday, Baby Heath goes back for an important follow up appointment. They continue to finalize details for placing Heath on the transplant list. The picture was taken on Monday, Nov. 10 prior to his release from the hospital.

Carrie says that Baby Heath continues to play and just be his happy, sweet self. Ella Brooks is thrilled with her new green room and walk-in closet for her kitchen toys.

Baby Heath

Friday, November 7 as Carrie and Chris and the movers were packing their home for the move to Durham in preparation for Chris's new call, Chris took Heath to his regularly scheduled pediatric appointment. Upon examination, the pediatrician referred Heath to a pediatric cardiologist who suggested immediate hospitalization.

Once Heath arrived at UNC Children's Hospital, following a heart catheterization, Heath was diagnosed with restrictive cardiomyopathy. Carrie and Chris were given the very difficult news that Heath would need a heart transplant.

Heath was released from the hospital on Monday, November 10 and they are relishing the family time but in the midst of unpacking and moving into their new home. In the coming days they will also be finalizing all the necessary lab visits to place Heath on the transplant list by the end of November. So, right now they are in a "holding pattern". They are requesting no visits or calls but cards may be sent to the following address:

Westminster Presbyterian Church
3639 Old Chapel Hill Road
Durham, NC 27707

Once the time for transplant arrives, a central contact person/point will be posted from Westminster Presbyterian if you would like to help with meals for the family. Currently, meals are scheduled for the next two weeks.

The family is grateful for your well wishes and earnest prayers. I will continue to update as new information is available.

Blessings, Sarah Beth