a smile, some loupe and chips...

We were sitting out in the gorgeous weather in the courtyard at Duke today after taking Heath on the long-requested trip the cafeteria. Since we are desperately trying to get him to learn to enjoy eating again (we're thinking that there is actually some fear in eating after what we learned about his tummy health issues--see below), we let him pick whatever he wanted. He chose baked lays, a huge pile of cantaloupe (called "lroupe" in our house), and some chex mix. He actually cried when we took it away because we were afraid he would eat too much and throw it up--and then we both wanted to cry for joy in seeing our child WANT to eat for the first time in, well, months.

This wasn't the first time that we have shed tears of joy in the last 24 hours. or tears of fear, either, but I am going lean on the joy tears. We waited alot yesterday--to get Heath to drink the contrast dye (anna is a champion!), to go to the CT scan, for results. We hadn't really shared with everyone some of the words that had been dropped about what they hoped to "rule out" with the scan (things like lymphoma, tumors/lesions, weird tissue infections). We kept praying for the "least bad" thing, even though at that point we weren't really sure what THAT was. When we heard the GI specialist say, "well, since we have been able to rule out all these things (the list above), let me tell you what we think is going on...," the tears welled up. I don't think we had even realized how much on edge we really were about the possibilities. It is still not an easy course, but it is something that we can work on, and it is not generally life-threatening. Heath has a sort of GI motility issue that is a random, but seemingly chronic, paralysis of the bowels. This means that every once in a while, things almost stop "moving" altogether and allow for bacteria, gas and poop (I couldn't NOT use that word one time--our nurse teased me about the amazing hand motions that went along with my discussion with the team that was doing rounds yesterday...just ask me to show you sometime. :) to collect and cause him to feel full and sick, not want to eat, get dehydrated, and all sorts of other fun stuff. There isn't really a "fix" but they have him on azithromycin, an antibiotic whose side effect is often moving bowels (well, around 50% chance it will work). And, we're going to just have to work with the GI folks (we have added another specialist to our pretty spectacular list of appts. at duke) to figure out what can help him. We at least have a better understanding of what signs to look for in his behavior to tell us that he is having an "episode" and to keep from what happened this time, hopefully. He was really more dehydrated than they first thought, so he is still recovering his strength and all that goes with that too. BUT, if you consider some of the alternatives, we're thrilled. Bring on the bowels. It is funny how your perspective changes with life experiences.

I think we're looking at heading home tomorrow or Sunday morning. Heath is VERY ready--and we've been very grateful for the distractions of friends, family and neighbors visiting to keep us busy! your prayers and kind words from far away, your visits, the meals, the grass-cutting. for standing with us to hear and cry at the news, both good or bad. for family holding down all of our forts--and taking special time with our girl. I went to bed last night, with a tummy full of broc cass. from Delancy's in Burlington, feeling so blessed to have so many wonderful people in our lives.
As ever, we are grateful for the wonderful care that we receive here at Duke. We learned that the GI specialist and radiologist had combed through all of our xrays from the past 2 years to see the corner of bowel that had been taken while xraying the chest to "put together the puzzle pieces" of heath's problems. Medical staff who we got to know so well on our first "visit" have come by just to catch up OR have seen me in the hall and say, "hey--how is heath?" They care. Of course, there are always issues when working with medical teams and hospitals, but I am still grateful for this chance at good health care, and I wish it for every sick child.

We'll let you know how things go as we get home. I will try not to bring tears to your eyes by telling you about how all things are "moving" in our house. hee, hee. I am a little worried about the potty humor that has krept back into our adult minds in the midst of this newest adventure...

blessings on your motility. :)
carrie

oh hospital, i did not miss you...

We are always grateful for the wonderful care that we get from the folks at Duke and from our wonderful pediatrician. I just wish we didn't NEED to get that care for our guy!

I am sitting in a hospital room at Duke (really needing to sleep, so this is going to be a short one...), wondering about what tomorrow will bring. Heath was admitted yesterday, very dehydrated and pretty angry about being here, dealing with some as-yet undiagnosed GI/energy issues that had really been going downhill for about a month. In the past few weeks, we have worked with our pediatrician and cardiology team to try to "rule out" the big stuff (heart issues were ruled out early, thank goodness), but we have still be unable to figure out what was going on with him. We're hoping that a CT scan may shed some light, and that is on the schedule for tomorrow if Heath's hydration has picked back up. After being stuck a bunch of times yesterday and announcing to anyone who would listen that he was "READY TO GO TO MY HOME!!," he has rallied today and seems a bit more like himself. We've got a ways to go, and many answers to find first.

I kept waiting to write a blog post because I would think, "well, surely we'll have more information tomorrow and there will be more to say..." That has gone on for about a month. So, tonight I ask for your prayers for wisdom and guidance for the medical team, continued improvement for Heath, and patience for the rest of us.
We're so grateful for your continued love and care for us.
i will update with more info as soon as it is available.

blessings, carrie

kindergarten girl!

I was talking with someone recently about parenting and milestones--particularly with my sweet girl starting KINDERGARTEN last week. The person reminded me that the "days can be long, but the years go fast..." It seems like just yesterday that we were bringing her home from the hospital, raising her with alongside our families, friends and wonderful congregations in Burlington and Greensboro. And there she was, walking into her Kindergarten classroom, telling daddy that "she KNEW where her classroom was, not to worry..." Oh, we'll worry, but we'll also rejoice in the special person she is and will continue to become.

WHAT A GREAT SUMMER!! We have so enjoyed a "regular" fun-filled summer with our families and friends. Chris took 2 weeks off in a row for the first time in awhile that didn't include a D.Min. course, and we discovered the joys of really taking the time to relax as we headed to Montreat for a while. EB had a great time in Clubs, we got to see old friends, I got to run with the dog on the golf course each morning, celebrated the 4th, and we had a good relaxing time in the mountains. Thanks to Chris' parents for having us for a LONG time! :) (see pics in the post below) My dad's side of the family gathered at Nags Head for our annual beach trip--thanks to my wonderful Aunt Nancy and Uncle Robert. I think there were 30 of us altogether--lots of children. Jamie and Colleen were even able to be home from Haiti for the gathering and two long car rides with all of the neices/nephews and siblings (they are good sports!!). I forgot my camera, so there aren't any pics of this trip...perhaps we were having too much fun?? family time, with "the cousins" as EB still calls them is so important.
We came back in time to head to Black Mountain to celebrate Chris' grandfather, Bop's, 99th birthday. It was a great celebration (see pics in the previous post--this blog only allows 5 pics for each post...) and really special time to celebrate an absolutely amazing man. Aunt Sarah and Uncle Robert flew in, which was really special for the kids (the rest of us were not nearly as exciting once they were there).
At the end of this trip, we were able to meet the Landreths at the park at Montreat. you may remember hearing about Heath's roommate in the PICU who also had a heart transplant? Well, she is doing really well and lives near Asheville and we keep in pretty close touch. I don't have words for the joy of seeing the two children together, playing in the water and laughing and being "regular kids." what a gift. (the pics are in the previous post)

We spent some other family time with Chris' extended family for some tougher reasons this summer as well. Pat's cousin, Rebecca, passed away after a long battle with cancer, and Chris was honored to participate in the celebration of her life in Greensboro a few weeks ago. We spent some time at Duke in the PCICU as baby Thomas (cousin) had major open heart surgery at 4-weeks-old. He is doing well (is HOME!) but we would be grateful for your prayers for his continued recovery. I continue to be moved by the amazing care that is offered at Duke hospital. It was surreal being in that space and watching "our" medical team caring so beautifully for another family member; stopping by to ask how Heath was doing. I ran into our primary cardiologist, Dr. Carboni, who was leaving the hospital as I was heading to the PCICU. we both shook our heads as he told me that he had just come from sticking his head in to see if we were in the waiting room.
My prayer is that all of the world could have this kind of care.
(I don't have many health updates on heath right now--still dealing with leg thing but everything else is going WELL--we have some check-ups in the next few weeks, so I will update as we go!)

We were able to steal away for a short visit to Harker's Island right before getting back into the schedule. It was gorgeous and just a really nice time. Mom and Strow joined us at the end, and it was so nice to relax together. A perfect way to get ready for school to start. EB and i got to go up in the Cape Lookout lighthouse (pics above), we had a good boat ride and perhaps had the most fun watching Autumn discover her love for swimming in the water!

I had a little "wake up" call to my "always in a hurry/late" ways (those of you who know me well know that this isn't a new theme in my life...) last Thursday with a minor car accident. I was rushing to church and looked back at EB for a split second and barreled into the car in front of me. Everyone was ok. My van was not--pretty significant damage for a rear-ending. The reality of what could have happened hit when i realized that EB had a little "burn" from the seatbelt on her neck. I realized that it was a call for me to take a deep breath and try to live in the moment a little more than I usually allow myself. Really, what is more important that the lives of our children and loved ones? Do I really need to be in so much of a hurry? I talk alot about savoring the moments in life, but I am not sure I live it as much as I should. So, I leave you with that this morning. Fall is always a crazy time in our lives with so many things "starting up." I challenge you to take a breath and ENJOY it instead of just making it through the craziness.

blessings on your day.

carrie

summer fun

YES--this is our wonderful PICU roommate, Olivia. We got to play AT THE PARK together at Montreat. There were no needles, hospitals or procedures involved--only hugs, smiles, laughter, a creek, friends and family and a few tears (happy, though).

a little snuggle time with Papa.

We celebrated Bop's (Chris' grandfather) 99th birthday in late July. It was a wonderful celebration--filled with bbq, coconut cake and bingo. What more could you ask for? Oh yes, wonderful time with family. Aunt Sarah and Uncle Robert came in from New Orleans, which was VERY exciting for the kids.

Ah, the annual 4th of July parade at Montreat. If you have never experienced Montreat on the 4th, well, you should give it a try.

"We're all wearing UNDERPANTS...

...except Autumn" I heard coming from the other room at the top of Heath's lungs. He is very proud of himself for beginning potty training, and I emphasize beginning, my friends. Step by step. Ella Brooks lost her first tooth, exactly a week and a day after her kindergarten assessment (she will start kindergarten in august). Milestones. Regular people milestones. Our newest cousin was born on May 30 (Molly Ketherine is pictured with EB in the picture). Yippee.

Heath had his quarterly check-up at Duke today. We had all the regular stuff--bloodwork, echo, xray, ekg, visit with our wonderful cardiac transplant team. It was confirmed--he is doing really well. All tests were good. The conversations we had with docs were about reminding ourselves about him immune suppression when we get lulled into feeling like all is normal with Heath. This time we learned about keeping out of lakes/creeks, etc...because the levels of bacteria and viral stuff are pretty high for an immune suppressed person. This was fabulous to think about as we are heading for a week at Montreat. hmmmmm...we just have to be careful to wash him off once he is out of the water AND try to keep him from drinking the water. Watch sun exposure. Work on getting him to eat better. Continue to work with PT on his leg issue. I think we can do all of those things--and we can be grateful that those are the things we are dealing with right now.

We have had a busy spring--finishing school, church stuff, a short visit to montreat (so good to see the Peerys!), visits here from family, celebrating Chris' dad's graduation from seminary, a zoo trip with mimi and just general life stuff. We're excited about an upcoming vacation to Black Mountain/Montreat next week. Then we'll have time with my family at Nags Head. Fun things are ahead. We'll update with pictures as we go along.

Wishing you all a safe and healthy and spirit-filled summer--take a few moments to enjoy all the regular "stuff" as well as some of those milestones that you might be experiencing.

an addition to the family...

For those of you who know that my wonderful sister-in-law melinda is about to give birth to a new niece, you might have thought I was announcing a baby--however, "jellybean," as everyone has called her, has not been quite ready to enter the world...we had a great, short trip to northern va earlier this week. The cousins had a really fun few days together! We enjoyed some good family time--and then, we came home yesterday evening just in time to...

GO PICK UP OUR NEW DOG THIS MORNING!!!! :)

Her name is Autumn, and we found her through the Neuse River Golden Retriever Rescue about a month ago. We finally decided that it was time to think about a dog--we so missed having a dog as part of our family. Of course, those of you who knew Zeke and all of his aggression issues also know that we were very nervous about looking for a dog. I grew up with a wonderful Golden, so we decided to check out a Golden Retriever Rescue. We went to an adoption fair to look at one of the puppies, actually, but Autumn really caught our attention--because she was calmly resting in the midst of the chaos of the other dogs and people!! Chris said, "now that is my kind of dog!!"

She was found as a stray in September, and they are pretty sure that she was a puppy mill mommy dog. She is about 2 years old. She has no front teeth because they think she might have tried to get herself out of her cage. She was in such bad shape when they found her that they thought she was 5 years older than she is. She is very sweet and calm...other than a minor issue with separation anxiety. her foster mom was able to work through that in only a week or two, though, so we are hopeful that she'll let me out of her sight soon...:) her name didn't really pass the "test." Our family test for an animal's name is that you have to be able to walk out the back door and yell the name at the top of your lungs and imagine doing it at every time of the year...(i.e. i am imaging a few funny looks from neighbors in the heat of summer as i yell "AUTUMN come here!!!" hee, hee. But we figured that a few funny looks were worth causing her more identity issues--she definitely comes when you call her name.

oh, and she is a bit scared of men (they are pretty sure she was abused by men), which makes for an interesting time for Chris. However, she has not even a hint of aggression and she has been great with the kids. She really likes me and actually follows me around everywhere. She has done pretty well today. She took a good walk with Chris earlier, and then we took a whole family walk on this gorgeous evening. What a joy to be able to take a walk with our dog. It has brought tears to my eyes multiple times today to see how excited my kids were to have Autumn in our home.

we look forward to loving and caring for her and giving her a life that a dog who has been through so much in her short life deserves. My guess is that we'll do a little "rescuing" of each other.

Blessings to you in this Holy Week.

carrie

*thought you would enjoy these wonderful pictures with my mom and nana that we took today. i love the picture of heath squeezing nana's cheeks. oh, the generations together!
(heath is wearing his new t-shirt that says, "IT WASN'T ME" :) very fitting.

the fear of rejection...

the fear of rejection is something that we all deal with throughout our lives. that feeling is more intensified when you are fearful of rejection of an organ in your child's body. we are going to have to figure out how to work through those fears over the years.

the good news is that right now Heath Tuttle is at a 0 REJECTION level! yippee!

Heath had his annual heart cath last Monday. The procedure went well and quickly. When we talked with the doctor, we learned that one number (cardiac output) hadn't been quite right even though all the others were spot on. That number could have been due to a lingering cold, but it also could have been a sign of low-grade rejection. Even though that rejection can be "treated" with a medication adjustment, no one likes to hear the word "rejection." We were admittedly a bit nervous. Heath recovered from the cath pretty well, but then had a little bout of tummy sickness the next day, most likely due to being a bit dehydrated after the cath (and wedding--see below). It scared us--but it went away pretty quickly. In the midst, though, we got the news that the biopsy (they take a biopsy each time) had come back with a 0 REJECTION. we'll take it.

step by step.

i think that is what we have to do with our journey with this special guy--take each day at a time, each good report with joy, each wonderful celebration with family and friends as a great gift. this is, of course, easier said than done on a day-to-day basis, of course. but we try.

everything else is going well. heath has an ear and sinus infection right now, but that seems to be our mode of operation this year. at least it is nothing worse--I am knocking on wood again.

We discovered one other issue that we're working on, and I haven't written about it as we have seen physical therapists, orthopedists, and a neurologist to figure the darn thing out. About 6 months ago, Heath started complaining about his leg hurting. It coincided with a growth spurt, so I thought he was just feeling the growth. His gait was a little strange, but he was 2 1/2 and we let it go for a while thinking it was just a stage of walking. As it continued, we realized that we needed to do something to figure out what was going on. Because he is immune-suppressed, we have learned that his is more susceptible not only to infections and illnesses, but also to things like cancer (which is so much fun with a busy 3-year-old in the sun--i have become a nutty sunscreen mama). Once they did xrays to rule out some sort of mass in his leg (really, never a dull moment), we moved on to PT. We love our physical therapist! And Heath loves the PT room--particuarly the ball pit (I figure this is the only ball pit he'll be able to enjoy--they are germ pits in public settings...). We also saw orthopedists and a neurologist to get to the bottom of the very tight place in his lower right calf. If you watch him walk, you can see that he often doesn't put his right heel down. Basically, it turns out that they believe that he did have a minute neurological issue from his coding/ECMO days and it happened to affect his right calf. it is amazing how the body works. I think I was overwelmed by the initial learning because it hit me how different the situation could be if he had lost oxygen to the brain for any longer periods of time. The leg, well, we can deal with that. It might not be too enjoyable a process. We just got a brace (he calls it his "boot") that should help in stretching the calf. He does NOT love the boot. We're slowly getting him used to it. We're working, literally, step by step. If the boot doesn't work, there are other surgical options. And actually, he could have botox injections in his leg. Who would have thought that heath would be the family member to get botox first? :) But, we're leaving those as later options and working with PT and the boot. Many of you would probably say that you barely noticed his gait. It is not a huge thing--but we want to make sure it doesn't get worse as he grows.

Goodness knows that it isn't slowing that crazy guy down. A few weekends ago we celebrated the wedding of our dear friends Barrett and Peter. It was a wonderful gathering of friends and family in Burlington. Heath and EB were ring "master" and flower girl. I was honored to be one of the ministers doing the wedding. Chris thought he would get to sit nicely in the congregation--but instead he got to be an honorary ring bearer when Heath decided at the last minute not to go down the aisle. :) It was hilarious and extremely moving at the same time. I stood watching my beautiful girl and then my sweet fellas walk down the aisle, in that sanctuary that has been such an important part of my life of ministry, with all of those people who have been such an important part of our life--and I marveled at the way God works in each of our lives. It was a really special celebration of love and friends and family. It was a joy to see my kids enjoy dancing and the fun at the reception--heath preferred the stage with the DJ (that only worries me a little...) As I said before, I continue to work on learning how to revel in those moments of beauty.

i hope you will also be able to revel in the beauty of love and family and friends and good health and the lovely spring days ahead.