Growing Hope...

Heath was a farmer in the halloween parade at westminster school. He carried his cow under his arm (he and nana had been more excited about trying to get a real pig, but no-fun mom made him stick to the puppet...). He had come up with multiple people he wanted to "be" earlier in the month--police officer, delivery agent, witch, UPS man to name a few. I, personally, was pretty thrilled with the Farmer choice because we had all the pieces already! Given the earlier parts of October that weren't so fabulous, we were also thrilled that he had the imagination and excited to WANT to be anything for Halloween...

15 minutes before our neighborhood parade, as we were watching the rain come down harder, he decided he wanted to be a librarian. we settled on a fireman since we had that costume in a raincoat! We celebrated Mason's birthday and then we all tromped down the road in the rain, joining our neighbors in a wet halloween...I found myself walking in the rain with my "pumpkin dog" (see below) and thinking about the last few years. We had our wonderful cousins from Ohio with us last year, as they were here to be with family and to see their beloved papa (my uncle robert) in the hospital at Duke. We had one blissful halloween celebrating Mason's birth and Heath's first halloween--only a few days before our world changed forever...

As we were hanging out in the quad off Franklin St. today with our friends, Meg, baby Naomi and Margaret, we realized that it was the 3rd anniversary of that very day. Nov. 6 was the day of the well-check when the pediatrician "heard something" and life as we had imagined suddenly took a pretty big curve. BUT, it didn't end. It just changed.

We shared a knowing glance and a quick tear and then laughed and enjoyed the really special little people who we have the honor to "parent."
It was extremely appropriate that we were there, only a short distance from the hospital where we spent the night on Nov. 6, 3 years ago. And we were running around. And Heath was wearing his pajamas...(long story).
Then we got in the car and headed to mom and strow's where we did a little more marveling in the hilarious little person Heath Tuttle has become. And, of course, we did a little dancing (we always have dance parties) and I snuggled a little longer at bedtime...

And as I was putting these halloween pics up, I realized that it was extremely appropriate that heath would be a farmer--because he is helping us all grow in so many ways. In all the ups and downs of this crazy journey, we can't help but grow--in love, knowledge, strength, sometimes weariness, frustration; sometimes appreciation for life, joy. mostly in hope--for the future.

don't get me wrong, there have been some downright exhausting days recently, with dealing with more meds, lots of poop/tummy stuff, leg pain (making a 3-year-old wear a brace...) and tons of follow-up appointments. BUT, there have been some magical moments in the midst.

and i am going to choose to let our hope grow out of those. and out of the joy of the two little people who have FINALLY gone to sleep (have I mentioned my love of daylight savings time?? :) upstairs.
So, yes, we're doing just fine. All of our follow-ups at Duke have gone well. We continue to do PT weekly and are working on figuring this leg thing out...We will update you as we have more to share.

Right now, we're going to keep on growing.

Here's wishing you the same.

carrie

Home again, home again, jiggity jog...

i just realized that we didn't write on the blog to let you know that we are HOME!
and, we all have actually had a little "jog" in the last few days. If you had been on our street on Sunday evening, you would never have believed that that the little blond boy "racing" his mom and mimi and dog and sister (who learned how to ride her 2-wheel bike in a day!!) to his dad had been in the hospital a day before. Oh, but he had--and he is really doing quite well.

We came home on Saturday afternoon--after a not-so-hilarious-but-funny-in-hindsight experience of having a completely flat tire on the van as Pat pulled around to pick us up at the front of Duke hospital. I saw it and thought, "seriously?? this is insane." AAA and other family members got us all home, and we had a really enjoyable time watching Heath ask for and eat FOOD!!! and he has been eating and pooping ever since. the meds are still trying to clean out his system of all sorts of things, so both things are a big part of our life right now. I will not elaborate on that part...

we're trying to adjust to a few more times of taking meds right now. the erithromycin was every 6 hours as we left the hospital, so one of us (chris) was actually setting an alarm and waking up at 12:30 to give heath that one. heath slept right through it. mom and dad--not as much. at a follow-up GI appointment yesterday we were given the green light to be a little more flexible with those times, but we're definitely still doing meds at 6, 8, 12, 4, 7...it has my tired mind a little baffled, and I am usually the one who has the meds down to a science! step by step. we have a follow-up with our cardiology team tomorrow as well. heath has declared it a "no shot day," and for once i am able to say, "you're right!" because we were able to work with GI & card. to do all the labs yesterday. poor guy is really traumatized by all those needle sticks at the hospital.

we are slowly trying to ease back into "regular" life. we took him for a haircut on monday morning and have done some errands and played with his playgroup friends for a little while yesterday. today we went to school to see the trucks--church bus, dump truck, firetruck and police cars were all there for the 3-year-old classes. it was nice to see heath start to play with his buddies again, even for a little while. we'll try to do half of school on friday without us around and see how he does.
EB left with mom this morning to go to the Waterford Fair. This is our big family weekend every year, and we (and the docs) decided that it wasn't such a great idea for Heath to be in such a big crowd. So, EB is going up today and I am going to try to get up to VA on Saturday & Sunday (heath loves to be up there, so we're not talking too much about where his sister is...). We'll see how that goes...

So, I am sitting here on my porch on this beautiful NC afternoon--while heath naps--and I am also feeling really, really tired, but also a bit relaxed for the first time in a while. i will pop back up in a half hour and head off to the next thing, but I will enjoy this for a few.
We'll let you know what's happening as Heath continues to recover and as we figure out how to work through all these GI issues.

love to all.
c

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.