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.

and the band plays on...

I am sitting in the kitchen, listening to Heath through the baby monitor. He has been loudly calling for me periodically with "I can't sleep." Chris just walked through the room and we both laughed out loud to the "Mommy--come out, come out, wherever you are..." And then, we heard the bow of the violin (he has been sleeping with it in his bed since his birthday) running up and down the rungs of the crib fully expecting to hear "Nobody knows the trouble I see..." coming next.

I am mildly annoyed because I am tired, but I must confess it also brings a smile to my face. we won't go in to get him(and give in to him), but we will enjoy the energy that is coming from that room. I have been putting off writing a blog update for a couple weeks, hoping to be able to finally say, "ah, he feels better" and I think, at least for a day or so, I can say that he is feeling and acting like his regular old self (I am knocking on wood, btw).




We have had a wild month and a half. Mostly good stuff and a little reality check about having an immune suppressed child in the thick of winter cold & flu season. Christmas went well and we had some adventures. For instance, adventure #1 was beating the snowplows to Black Mountain on Christmas morning...sliding down old Dogwood Dr. in the snow that beat us there. Adventure #2 was trying to hear ourselves think with the vast array of musical instruments (accordian, handbells, microphone w/ disco ball, electric guitar, drum pad) that were opened in virginia (i am still wondering what made me think to say, "musical instruments would be a great present")As we were getting ready to come home from northern virginia, we realized that Heath had a fever. We sped on back to our pediatricians office (ok, we didn't speed too much after my recent brushes with the alamance county law) and got some antibiotics. EB got to stay for a fun couple of days with the family. Heath initially recovered well only to pick up another episode of cold that turned croup with a twist of strep. and in the middle we got to celebrate his 3rd birthday!


Heath turned 3 and didn't feel all too fabulous, but we still managed to be well enough to celebrate, hmmm, 3 times! We got to share a fun birthday evening with our friend, Rebecca Mattern, who shares the same birthday. We had a very fun joint birthday party with Heath's friend, Spencer, with all of their school buddies (much fun with playdough--thanks Mimi--trucks, trains, tents and art). Then we got to have a nice dinner at my mom's house with family. whew. Heath received another glorious present--once again, my fault, I am reminded regularly--a violin. He has been sleeping with it, along with a Cat in the Hat sent from Cleveland cousins.

All that is to say, we're doing pretty well. As I have had moments of feeling a little sad about being stuck inside with my equally extroverted son who is also a bit sad about being stuck inside and not feeling so hot, I am reminded that we should be pretty darn grateful for the opportunity to be stuck inside together. We're dealing with regular kid stuff for the most part--with just an added touch of worry after the events of the last few years. We have MANY shows in our house these days. It is fabulously loud and full of good spirit. I am pretty certain you could hear it from outside. But goodness, it sounds really good to us.

extra pics for blog update

working together to write a letter to santa on christmas eve.

I said, "let's put some carrots out for the reindeer..." Heath looked at me like I had said the most ridiculous thing he had ever heard and said, "um, mommy, RABBITS eat carrots, not reindeer." duh.


Christmas Eve before we left for church.





















this is what we do with our extra med syringes these days--ART!!

a dove, a twinkling star and an angel

Last night we had the annual Christmas pageant at Westminster. It was lovely--complete with over 70 children (whew!) who participated in sharing the Christmas story in a way that brings tears to parents, grandparents, and friends' eyes. sometimes you are laughing so hard that the tears come (friendly beasts BATTLING over who gets to sit closest to Jesus was a particular highlight...and Heath telling all of us that he wanted to HUG MARY!!). mostly, though, the tears come at the beauty of seeing all of these young, innocent children tell the story. For our family and friends, there is the added emotion of watching our little "twinkling star" parade around, and our sweet radiant dove (EB) who is growing up so fast, and remembering the anniversary of another gift of life from an Angel.

Two years ago tonight, my brother Jamie and I were standing in a throng of people in the elevator area of duke hospital. It had been a hard day--day 10 on life support, waiting--and he had come back to the hospital with me. Then phone rang.
The voice on the other end: "Mrs. Tuttle, we think we have a heart for Heath..." and everything changed for our family. I remember finding the chapel, staring at the tree of life on the wall--and in that moment, the only thing I could do was pray for the family that somewhere, far away, was having a very different moment in their lives. I didn't know what else to do. That was the only thing that was certain--somewhere there were people in their deepest moments of grief, giving the most amazing gift to someone they didn't know.

I talked to Angelina's mom last week for a really long time. It was so wonderful to hear her voice, talk about how her family was doing, talk about angelina and to be able to tell her how well Heath is doing. I don't think I had the words for "thank you." That couldn't possibly be enough. But I think she knows.

Tonight I am going to go to sleep early (my blessed extroverted child was so excited to be in the world that he didn't sleep much last night...) with a heart full of gratitude and joy and hope, but also a heavy heart for angelina's family in Texas.

I am going to think of last night, standing on the side of the sanctuary, looking out at the congregation that we have come to love so much, loving having so many of our family and good friends and neighbors right there and feeling the great rush emotion seeing our little "twinkling stars" spreading their light throughout the room.

i hope you sleep well too.

carrie

(also--very different subject, but you might like to check out my friend, page's blog about mothering and advent: http://themommyquack.blogspot.com)

the belles of the ball

a couple of months ago, a member of the development staff for duke children's hospital called us and asked if we might be willing to be 2010's Teddy Bear Ball patient family speakers. I actually remembered seeing the posters for it when Heath was in the hospital 2 years ago. we were honored to be asked--and the kids were excited about going to a BALL! (not that they understood either, but it sounded exciting!) Karen had gotten to know us well enough that she said, "now, there will be 750 people there, so it might freak ella brooks out..." she knows my girl. but, the thrill of the ball "gown" outweighed the scary thoughts of all those people. Heath and Chris got fitted for their tuxes, which apparently was hilarious in itself. The duke folks did everything they could to help us be prepared and for the kids to be comfortable--from getting us a suite at the hotel to having us come early in the day to "rehearse" to inviting mom and strow to join us so they could help us with the kids during the evening.

As you can see from the pics, it was quite an evening that none of us will ever forget. We arrived at the hotel to discover that the hotel staff (big cheers for the downtown durham marriott, btw) had left a spray of wine, cheese and fruit and chocolate milk for us...along with a couch full of gifts that brought absolute squeals of delight from my children--teddy bears with scarves embroidered with ella brooks and heath's names, coloring books, a truck for heath and a beautiful necklace/bracelet for eb. Their kindness was overwelming. We got our fancy clothes on (more pictures coming!) and made our way to the ball. The kids were pretty excited about the enormous playhouse that was being auctioned (made by the raleigh builder who did extreme home makeover--such a nice guy), got to drive the Barbie jeep (heath backed it off the playhouse pad and freaked us out earlier in the day!), made friends with lots of people who loved seeing them all dressed up, ran away from Wooly Bull (durham bulls mascot--my kids are not lovers of anything or anyone in costume!). The quote of the night: My mom looked at chris and said, "hey why don't you go grab a glass of wine?" Heath, who was standing next to Chris, said, "No thanks, I don't like wine..." hee, hee. He later did enjoy a little water in his wine glass.

We all went up on stage and I spoke for about 5 minutes. I will try to post the audio if I can get it from the Duke folks. Heath decided while on stage that he wanted the drumsticks that belonged to the band. Oh my. I just tried to step forward and keep talking. It was pretty emotional--but also very difficult to capture our feelings about our last two years and our experience at duke in 5 MINUTES!!! But, I think it went well.

Then, as we left the stage and Heath continued to pine for the drumsticks, they were surrounded by a throng of lovely ladies from Elon who were helping with the event, so they were pretty much in heaven. We're looking forward to the Elonthon--April 8-9, I think.

Heath even went back up and let the mc for the night (brian hoyle who is the "voice of the carolina hurricanes" who is a really great guy!) hold him while they were getting live auction bids. Pretty amazing. It was a moving evening--with beautiful music sung by 3 girls who have been patients at Duke and just the enormity of emotion that comes with seeing people be so supportive of duke children's. Then, the kids got to go have a sleepover with Ama and Grandpa while Chris and I stayed for the end of the fundraiser and a night away from home at the hotel!! ahhhhhhhhhhhhh....

So, you'll hear more about our adventures soon, but i thought I would go ahead and post some pics and tell you a little about our night.

I almost can't imagine, or let myself imagine, what we were doing 2 years ago on this night. What a long way Heath has come!

I ask your prayers for our dear sweet Olivia (PICU roommate) who is back at Duke with some rejection issues. They are having a rough time. And I also ask for prayers for Uncle Robert and Aunt Sarah's family in New Orleans--his cousin's 11-year-old daughter was killed in a tragic accident a couple days after Thanksgiving. There really aren't words for the grief that this family is experiencing right now, and we are with them in Spirit and prayer each day.

Stay safe, warm and grateful for your blessings in this Advent season.

(also, read the blog post below that is also new)

carrie

tumbling through fall and advent

I realized recently that I hadn't made a blog post in a really long time. let's just say that this fall as been quite a wild ride...

We were able to see all of my cousins and their kids at the end of October--quite a wild Halloween time with our neighborhood parade and cousins! My Uncle Robert ("G Robert" to my kids) had been quite ill at Duke, so it was not necessarily for a good reason that we were all together, but as Aunt Nancy reminded us, "We take the gifts we are given and celebrate." Oh, that I could remember those words every day...Uncle G is doing much better and is AT HOME at Lake Lure, which is such a great celebration for our family.

we had a wonderful time celebrating Chris' dad's ordination on Nov. 7. It was my dad's birthday and the anniversary of Heath's diagnosis as well--a big day all around. AND, it was great to be able to be with family and to CELEBRATE SOMETHING so wonderful. Bob worked so hard for so long to get to this ordination. We're all very proud, and we enjoyed seeing so many family and friends during the weekend. It was especially great to see Uncle Robert and Aunt Sarah--we miss them more than we can say!!

My dad came down the next week for a visit--which was so great. The kids really enjoyed having "Pops" around to play with! We had some really nice time with my Aunt Nancy and Uncle Robert, who were still here at Hillcrest at the time.

We had a really nice visit with Nana for a few weeks and then with Grandma Betty and my brother, Pete, and his kids (who most of you who kow EB and Heath know as "the cousins!") for Thanksgiving at Mom and Strow's house. We had dance parties every night and walks in the woods and just good family time. Chris was able to get to Salem, VA, to visit with his parents and his grandmama and Aunt Diane. Grandmama broke her hip and had been in the hospital. She is doing better now, and Chris had a really good "adult" visit (we don't quite know what to do with ourselves as we travel sans our little people...but it is a bit easier). Whew, so we've pretty much seen our whole family, even extended family on both sides, in a little over 2 months!!! Uncle Jamie even came home to the US from Haiti for a while due to some of the violence in Cap Hatian associated with cholera and the recent election. He is working in St. Louis with MFK this month and will return to Haiti in January.

Heath's health has continued to be really good--and even his sleeping has improved a bit. He just loves being in the world, and often that starts at 5:30, which makes me not as pleasant to be in the world by mid-afternoon! :) We have had one minor issue that we are still working on and it has nothing to do with his heart--it is his LEGS! He kept telling us that his legs hurt (in different places) and he was also walking a bit funny. At first it was passed off as "he's just 2 and still developing..." but we started to get a little worried when it was more constant. We had a set of xrays a couple days before Thanksgiving that confirmed that it was not anything scary and probably just a Physical Therapy issue. So, we're going to start some PT this coming Wednesday and see if we can get his legs to stop hurting. Other than that and perhaps his desire to eat nothing but pasta and cheese and bread and drink nothing but chocolate milk (I keep hearing this is normal...), we're great on the health front!

This Friday, Dec. 3, we had the Westminster staff Christmas party at our house. The evening was absolutely lovely--complete with our blessed children "hosting" and welcoming all into the house (they are sometimes more helpful than their parents can take). For us, it was a wonderful way to spend a day that is still pretty fresh in our minds as the day that Heath crashed and was put on life support two years ago. I suspect that those anniversaries will not be as tough as we move along in life, but they are still pretty fresh right now. The whole group decided to sing Christmas carols, and Heath and EB asked if they could "sit" with Monica at the piano. EB handed out books and orders. Heath made himself comfortable and when Monica played, he did too. Her beautiful music was accompanied by a different kind of beautiful music by a sweet boy full of life and energy. As the group sang in beautiful harmonies with the plunking of little fingers on keys in the midst, I couldn't look at Chris across the room. I was so full of gratitude for being in this place, with these wonderful people on such a day. we sang: Silent night, Holy Night. It wasn't silent. But it was certainly very Holy.

the village

They say it takes a village to raise a child. I believe it. As families have moved further and further from living near one another, that village has looked a little different for many people. For us, we are blessed to have family right nearby and also only less than a day's drive away. We are also blessed to have a wonderful church community. Every once in a while I forget how important it is to have that "village" of family, friends and church surrounding us as we try to continue on this journey called parenting.

And then I am reminded...

A couple of weeks ago we went to the Waterford Fair. For those of you who have known my family for a long time, you know that this is a fixture in our schedules each year during the first weekend in October. This year we had over 25 family and friends at nana's house to enjoy each other's company (folks came from Alabama, HAITI, St. Louis, Atlanta, and Colorado!) and the homes tour and crafts fair in her town. It was a wild time of catching up and running after little people and admiring nana's new garden shed (strow calls it the "Jan Kitselman Center for Botanical Studies"--pete, allen and strow built this over a couple weekends and it is amazing! it is in the background of several of these pics)--and going out to have fun at the fair. We were particularly excited to be there this year because we thought that it would really be ok to have Heath out and about and that he would love it. The kids just wanted to be with their cousins.

And it was a really fun time--and then Saturday lunchtime the stomach bug hit. Heath must have picked it up with his immune suppression first. Everyone jumped into gear--Aunt Sam and Kevin taking the girls out, mom with Carson and later comforting sick Heath, Uncle Jamie and Colleen giving up their spaces for Chris and Heath at my dad's house for the "sick bay," family and friends searching until late Saturday night for a 24-hours pharmacy...it goes on and on. I know that is what we just do for each other, but as everyone was gathering to send us off a day early, the tears rose as I realized how rich our lives are with that very "village. "

And then, bless them, many of them got the darn stomach bug too. I guess that is the yuckier aspect of being part of the "village."

It was an ugly virus. Chris got it pretty bad too. Heath took a long time to recover--especially his energy. I finally took him into Duke on Thursday just to get his regular bloodwork and echo just to make sure that everything else was ok. The folks at Duke are incredible. When I emailed late at night that i was worried, I had a text calling me in first thing in the morning. Our amazing pediatrician had been working with us since the virus began--on the phone to pharmacies in virginia, checking in. Again, the "village."

Everything came back looking great, so we knew that he really just needed a little more time than most to recover. and he really has made a great turn in the last few days. If only he would stop waking up at 5:30 every morning!

But alas, i decided to not go to the wedding that Chris was doing in western north carolina for some good family friends, the Swetenbergs, just to be sure. Aunt Cindy had come up from Georgia for the weekend, and the kids and we spent a fun time with mom and strow and Aunt Cindy, who really helped with the kiddos (since daddy had gone to the wedding). Strow did house projects for us while mom and cindy played with kids and helped get stuff ready to have the session of the church over for dinner (Sunday night) while our friends, the Hills, came and escorted EB to a birthday party while i went to help get things ready for the Fall Frolic for Westminster School....WHEW! The "village" in full force.

So i guess it really takes a village to raise a child AND, really, all of us. It takes a village to raise us to the best of who we are. I am grateful for our village.

Have a good week. Love to you all--our village.

carrie

The cousins--helping to "work" on Nana's garden shed.

Aunt, Cindy, Mom, Strow, Kirby and kids with the chandelier that Strow had just moved for me (oh, these house projects are driving everyone a little batty, I think!).