summer vacation pics

Heath surveying the landscape at jockey's ridge in nags head, nc.










rock hopping with papa













paddle boating with the family in lake susan.







a wonderful visit with Bop. Chris' grandfather will be 98 in about 3 weeks!!

Sparklers on the 4th! What fun!

home again

hi dear friends.

i am going to only write quickly to let you know that we are home from the hospital--as of about 3:45 this afternoon. heath had still not been drinking and we were pretty unsure about even wanting to go home, but we realized when we finally took him out for a walk around in his stroller that he would eat if he wasn't in his room. it was as if he had fallen into what I have heard called a "hospital lull" where you can't quite feel better because you just sit and sit and look at the walls of your room. the doctors had already suspected as much and they were willing to let us take him home. he stills feels really stinky and only wants to sit on me (which was lovely, oh when he first started feeling bad LAST WEEK), but he is actually reaching for his sippy cup and asked for mac and cheese. SO, we'll take that as a good sign that we are on the mend. sarah and pat are staying here to help out, which is great.

i will write more and do a little reflecting when i am not quite so exhausted. right now, the only other thing i want to ask for are prayers for our dear sweet friend, olivia. she had surgery on thursday at duke, strangely, and we visited in the picu briefly. then, i walked out of our room yesterday to realize that they were OUR NEXT DOOR NEIGHBORS. after all the time we spent as roommates in the picu in the early days of both of them on ECMO (and they are 4 days apart in age), we have been through so much together. what a crazy coincidence. we decided that the next time we see each other it should be at a park in western nc!!!! olivia had a liver biopsy and her gall bladder removed. she is recovering well, and the initial look on the liver seems to be that it is a better case scenario. she still has some tough recovery, though, so please say a prayer for her and her family.

on that note, my friends, good night. i have a feeling it won't be a silent night in this house, but i am so grateful to sleep in my own bed, no matter how long it is.

hospital day 2...

and we're still there. well, chris is there and i am home with eb and pat, who arrived fresh (t(to a very freshly disinfected house--thanks mom!) from black mountain a few hours ago. goodness, i missed my sweet girl this week.

the good news: Heath's heart is fine! We had an echo early today to confirm that there was no heart issue surrounding this virus. everything looked good.

the more frustrating news: heath tuttle is a pretty stubborn sucker. i am reminded by everyone that that is, in fact, why he is alive. he has decided that (this is my observation, at least) a. his throat really hurts and he doesn't want to drink and
b. he is too tired to eat or drink and
c. he said NO! (that is his main word followed by whatever you want him to do i.e. "NO DRINK!"

most days i am grateful for this stubborn streak. today, i am wishing he would relent a bit. he just still is getting hydrated by the iv fluids and he really doesn't have much energy. and he is getting better, just slowly. but this mama wants him to be better NOW! I am also reminded that dehydration is something that can be FIXED, so we really do know that it is going to be ok--just hard to watch your child hurting and not be able to do anything about it.

chris just called and said that heath was eating a ROUND CRACKER (this is a ritz, his favorite) and was still mostly a "no guy" but was at least had a bit more energy. aunt sarah (who stayed with him so we could have some eb time--thanks) said that she thought his vocabulary was growing a bit more than "no" since this morning. :) those of you who know my little fella pretty well would really be shocked to see how little energy he has--but you would not be surprised that he was ready to tell me pretty clearly where he wanted me to put a popsicle i was trying desperately to make him eat this afternoon. :)

we are hoping that we might take him home tomorrow afternoon. i am not going to count on it until i see him drink a bit more. he has to pee his own pee (i.e. off fluids for a while) before that happens. we shall see.

we continue to be so grateful for the love and support from near and far. it brings tears to my eyes as i write this. it makes it a bit easier to get through hard days when you know there are people praying all over. thank you.
i am not surprised, but i am also reminded as i walk through the halls at duke and have staff come over to visit us from other areas that we are so incredibly blessed to be in a hospital like it. what an amazing group of people we have caring for us. i stand in awe.

on that note, i promised everyone that i would get some sleep tonight. it has been a long week.
hope you do too!
hopefully even more positive news tomorrow.

back in the hospital...

I realized that many of you may have heard that heath was sick and not know much else, so i am doing a quick blog update--and will do more later. i am home taking a shower after a night in the hospital with heath. he is doing much better.

back story--on sunday morning he woke up with a fever. there is a virus (or a couple we now know) going around right now, so it made sense that he had picked it up now that we are more "out in the world." at first he still seemed ok so we thought it would just run its course. by day 4 he was not eating or drinking much of anything, was throwing up here and there and was pretty lethargic. but he would rally each night a bit and we would think he was turning a corner. finally, yesterday afternoon, we made the decision, with our wonderful pedatrician, to take him to the ED at duke to get some fluids. we were told to plan to stay overnight so they could monitor him.
turns out he was really dehydrated. and, he has some weird strain (I say weird because i can't pronounce it) of hand, foot and mouth disease. he only has the fever and throat ulcers, though. he has been a pretty sick dude, but we're hoping with fluids he will start bouncing back pretty quickly. this morning he was ASKING for a sip of the drink we had for him, which was great. AND, he had enough energy to do his "almost done" repeating thing in a very mad voice the whole time they were doing his vitals, which was also a good sign.

SO, they have to run the regular tests that they run on heart transplant kids who get sick as well as the regular tests that they run on kids who have this virus, and hopefully we'll be home this afternoon or tomorrow. we shall see.

chris is getting ready to pull into the hospital. he has been in decatur all week doing his last 2-week dmin class. eb has been spending the week with mimi and papa and at clubs at montreat, so she luckily had a great time and didn't have to deal with the sickness of the week. mom, strow and sarah have been wonderful caregivers. whew.

i will write more later today with details. thanks so much for your prayers.
love, carrie

good tired...

AND HERE WE ARE--Hands on hips...observing the chimps in the rain...looking very "in charge..." that is my guy.

We had quite a memorial day weekend! Mimi (Pat--chris' mom) was here. Grandpa strow came over and fixed up a swingset that a friend had given us all day on Saturday (will post a pic of this soon too). On Sunday evening we went to a Bulls game with friends and family (i will post a picture of this soon--hilarious). On Monday we went to the zoo and met our good friends, the Oedys, for a rain-filled zoo extravaganza--complete with an hour or so
in the chimp "house" during a pretty heavy storm. We went straight from the zoo to be with some of Chris' family in Hillsborough for a memorial day cook-out--so delicious and so much fun. wow. we were tired, but a really "good tired." we were feeling so full--of love for family and friends, of excitement for being able to get out into the world. good tired.

it has been so much fun to watch heath enjoy getting to be in the world. he loves it--well, he loves pretty much everything except for being separated from mom and dad (who also have had a few chances to sneak off to join the world too!). we got so excited about joining the world in the last few weeks that I think we almost did a little too much. we're trying to settle back down a little. may was a busy month! i certainly won't complain too much about that, though.

aside from our comings and goings--really good health news! we had an appointment at duke for a regular cardiac transplant clinic check-up. Heath had a grand time with "doctor boni" (dr. carboni, the cardiologist who will follow him throughout the years). I was glad that they got to see him pretty "normal" (he was full of himself). We were able to get him through the echo without being sedated--i must say it may have been thanks to the max and ruby dvd that i brought and the attention of 3 wonderful nurses and mommy lying next to him in the bed--whatever it takes. He also barely cried during his blood draw. I was so relieved. We had all been dreading those two parts. The results--all looks good! They are really thrilled with his continued progress. We were told that there isn't much of anything he can't do now--other than continuing to stay away from sick people (he is always going to be immune suppressed). step by step.

so, i think we'll plan to be "good tired" for a long time. he's a busy, healthy guy.

blessings to you all.

carrie

joining the world...

So we went to church today. That isn't really that different from any other day since Chris works there and EB goes to school there. The difference of this day: Heath joined us. He got to go to church for the first time since last summer. We had been at a few events last week, but it was really cool to take him to the childcare room and drop him off like the other kids. He was the first one there and started to cry when I left. Ella Brooks said, "mommy, i will stay with him to make him feel better..." that is a good sister. And they had a wonderful time.

this is a good day.

we have had a great visit with Aunt Diane (Bob's sister) and Chris' dad. They are here until tomorrow. Chris and i have even been able to get out on the town a couple times this week--shocking. On Tuesday we went to a meeting at Duke hospital as they were bringing together past PICU patient families to gather information about our experiences. It was really good to see old friends (the Landreths) and to share our individual and collective experiences. I stayed talking with several folks until 10pm. It also reminded me not to be completely lulled into forgetting what Heath (and our family) have been through--not to forget to be thankful for each day. It is amazing how easy that can happen. I suppose there is a fine line--you want to be as normal as possible but also to not forget.

We have had a busy few weeks--full of world-joining activities. It started with participating in the Elonthon a few weeks ago. I spoke to the wonderful group of Elon students who were dancing all night to raise money for Duke Children's Hospital. We were one of their "miracle families." I think they are the "miracle" to be such great people giving up so much of their time to help others. The kids had so much fun and so much attention--Heath even ran on the stage. EB continues to be scared of the chick fila cow (long story). Our friends the Hills and the Childs came to hear us. It was a very cool experience--I highly recommend coming to support it next year (I will give more details).

We got to spend a fun time with my Nana visiting at mom and strow's a few weeks back--and lots of good time with "ama" while she was on her break from year-round school. EB got to ride her first horse while on her school field trip. Our dear wonderful neighbor, Bob Sneed (the kids all call him "Bob Sneed" always) re-made a dollhouse that he had made for his daughter 30 years ago for Ella Brooks, and he delivered it, which was a special treat.

And then, we went on a trip!!! AND, our children slept through the night each night on the trip!! It is a banner spring in the Tuttle family.

We made our way to Georgia for my sister, Cindy's wedding. It was a such a great time--see the previous post for more details.

I think I love that I have absolutely NO OTHER UPDATES about health. I hope that I will continue to be able to throw pictures and funny stories to you for a while. Our next doctor appt. at Duke (for just check-up and blood work) on June 3.

have a good, good day, my friends.

spring traveling fun with the tuttles...

Aunt Cindy and Uncle Matt were married last weekend--April 24. We had such a fun time with our family and friends. We got to stay in Atlanta and have a fun evening with Ellen and Kimberly (in picture to the left) and their dog, Roscoe, on the way to Macon. Ella Brooks got to help them make a scarecrow. Well, i think she told them how to make a scarecrow because, of course, that is something that we do regularly in our house. The next day we had some time to visit our friends the Lamars (that is Sam with Heath below) and then we had a wonderful Raging Burrito lunch with the Colussy-Estes. Then we made our way to Macon for the big event.

We were greeted by about 5 buses and a huge portion of the teenagers of the state convention of the Future Farmers of America that apparently was also taking place in Macon the same weekend. add a mix of bikers and a few mennonite farmers, and it was a pretty fabulous sight in the La Quinta lobby. We had such a great weekend of celebrating love and family. Jamie came home. Pete and Melinda and the kids flew in on Friday. Strow's sister, Vicky, came in from California. Friends and family were there from all over. We even got to have a tour of Macon from the bride herself on Friday morning! The wedding was lovely and filled with joy. Sam and Strow both gave beautiful toasts. Matt and Cindy were so happy. The kids had way too much fun on the dance floor. I wish I had some pictures of this, but I was so busy running around after them, I couldn't seem to find time to take pictures...let's just say at one point early on, Heath had several bridesmaids surrounding him on the dance floor. hilarious. it was a really good time.
we even had a birthday cake celebration of Carson's birthday at 9am on Sunday morning.