lighting a candle

 Advent has always been my favorite time of year.  I love the anticipation, the preparation, the music, the celebration.  4 years ago my feelings about Advent became much more complex.  My favorite time of year became the hardest time of year as well--a best of times, worst of times scenario.

This year at a time of anniversaries in our life with Heath, I am keenly aware of so many in pain, dealing with their own memories of hard things, or going through hard things of which they will now have "anniversaries" throughout their own lives.  Yesterday I was helping to host brunch in the PICU & PCICU (pediatric intensive care units) at Duke for families and staff--it is always hard to be there but it is also great to be able to feel like we're helping others who are where we were not so long ago.  I was thinking about a friend who had traveled to her hometown to be with family & friends to bury her second close friend who had been killed in a tragic accident this year.  I was chatting with staff and swimming in my own memories of our time in the PICU in Dec. 2008, waiting for a heart for my sweet baby.   And then came the message--learning of the tragic death of the 14-year-old son of a friend from seminary.   Making it only more tragic was the fact that that friend had actually died several years ago, leaving his wife and 4 children.  Sitting in that place, I couldn't even allow myself to feel anything.  It was simply too much.

I came home and painted Heath's bed.  That's what I do when I don't know what else to do--house projects.  Chris raked leaves--we couldn't really speak (wonderful in-laws were here doing art projects with our kids, thank goodness).  As he walked around the corner with another bag of leaves, I said, "here's the thing:  I am tired of having reasons to cherish each moment."  That sounds ridiculous because I am often reminding everyone to cherish their "regular" moments and to hug their children a little tighter, but that was all I could feel yesterday.  I just want the awful hurt to go away for all those people I love who are in really unbearable places.  Heck, even for the people I don't know who are in unbearable places...
But alas, I know life doesn't work that way.  And I also know that we don't stay in the darkness.  The light comes--sometimes dimly at first, sometimes bright and shining.

Tomorrow, Dec. 10, is the anniversary of the day that Angelina's family lost their baby girl.  They were about to turn the machines off when someone rushed in, realizing that they had never been given the choice to donate her organs.  They decided in the most awful, darkest, moment of their life to do something that shed light in the lives of others.  And then they had to wait for DAYS for all the meds to be out of her system, in their grief, so that they could give life to someone else.  I will never be able to thank them, really, for those days of agony.  On Dec. 13, her heart was flown from Texas, and she saved my son's life.  Their gift, their act of hope, is what reminds me that there can be light in the darkness.  I know these anniversary times are so hard for them, though.

Tonight my little cow and my dancing angel sang in the the Christmas pageant.   It was one of those good evenings that makes you cherish the moments (see, I do know these exist!).  They sang beautifully--Light one candle for Hope, one bright candle for hope...
And I do.  For all those people who are hurting in this time of the year when we think we're supposed to be cheerful and full of the holiday spirit.  I light my candle, believing that the light will come, that hope will come, even if it takes some time.

Heath's Leg Surgery TOMORROW MORNING!

Shame on me--here it is again about 9 p.m. on the night before Heath has a procedure, and I am just writing about it.  This one came up pretty fast--and we actually didn't know it was going to happen until this past Thursday!  Heath is having a heel cord lengthening surgery tomorrow morning at Duke at 7:30 a.m.!  (whew, you might first need to say a prayer that we get there on time at 6).  The procedure is only supposed to take about an hour, and I suspect that we'll be home by mid-afternoon.  He'll have to wear a cast for 6 weeks and then will have a new boot that he'll have to wear pretty much all the time after that.  But, it should give him better range of motion, which is what we're shooting for.
background:
I have written many times about Heath's "leg issues."  They think that he probably had a small stroke while he was on ECMO (life support) pre-transplant and that it just happened to only affect the way his right leg tightens.  If you have seen him this summer, you have probably noticed how he looks like he is "toe walking" with only his right foot. Or you might have seen him with his AFO (boot) and said, "what happened?"  Because this is neurological, it does not go away with just PT and some muscle memory work, unfortunately.  This is something that Heath will have to battle with for life- that is a battle we'll all take.  The more active Heath has gotten over the years, the more this issue has caused some pain and frustration.  I am always so proud and amazed by the way he seems to take it in stride, almost as if he doesn't even notice that he can't run as fast as his buddies.  Every once in a while, my heart sinks and the tears well up when he says, "I just am not as fast as those guys..." but then he jumps right back in and comes up with a new game to play.  He certainly is a resilient little guy!

So, we'll let you know how surgery goes tomorrow.  We'd be grateful for your prayers and thoughts during that time and for the week that we're supposed to "lay low" post-surgery (everyone might need a prayer with Heath Tuttle stuck in the house on the couch for a week! whew!).

Blessings and peace.
carrie

annual heart cath tomorrow morning!

we've been so busy and my fella has been doing so well that I neglected to post that Heath is having his annual heart cath tomorrow morning.  We are due to check in at 7 a.m. at Duke, so i am sure chris is upstairs wondering, "what on earth is carrie doing down there..." 
As always, we'd be grateful for your thoughts and prayers in the morning.
We've been at a fun wedding at Atlantic Beach this weekend AND finally have been potty-training (heath, of course), so I guess we've been immersed in living that "regular" life our folks at Duke keep telling us to live...I will have some glorious tales of potty-training a hilariously verbal and full-of-himself 4-year-old once we get this little procedure out of the way tomorrow.
Tonight Heath called chris back into his room and said, "daddy, why do i have to have a heart cath?"  Tough one to answer.  Brought on a few tears as we realized that this is a whole new world as he understands more and more.  "we're just checking everything out, buddy."

blessings on your night.
carrie

coming full circle...

So chris and I had lot of time to reflect on the really great graduation weekend as we drove home for 8 hours in the rain on Sunday.  Chris graduated with his Doctor of Ministry degree on Saturday after working on it for 6 years(so proud of all of his hard work)!!  It was a busy weekend--and we didn't get a chance to see a bunch of people who we wanted to see--but it was a wonderful time of bringing some pretty important parts of our lives full circle. 

For me, it started in the bathroom of the Richards Center at Columbia.  The kids and i had been riding the MARTA for an hour & a half and realized that we really had to go to the bathroom as we got to Columbia for the graduation picnic...Suddenly it hit me that the last time i had been in that bathroom had probably been 9 years ago as I was there for Chris' MDiv graduation, a week before our wedding.  And here I was, with my blessed children reflecting at the top of their lungs about trains (let's just say we were a bit of a hit on the MARTA) and how much toilet paper EB should use and when Heath would stop wearing diapers (daddy is going to work on this post-school).  Goodness life is different now than it was then.  I just laughed out loud, and I think the person in the other stall did as well... 

We had some wonderful time to see beloved professors and friends.  We were able to say "thank you" (doesn't quite seem enough) to the director of the DMin program who wouldn't let Chris quit when Heath was in the hospital in those dark, pre-transplant days.  "We don't need to make that decision right now, do we?"  he had said.

Our children ran around with friends' kids on the quad--only 1 had been alive all those 9 years ago (we were remembering hannah in her baby carrier at our wedding...).  Vickie graduated with her D.Ed.Min. with Chris--having known him as a close family friend since middle school. What an amazing feeling to watch Dawn Martin Hyde graduate with her M.Div.--after spending our time in Burlington together, and our lives constantly intersecting.

On Thursday Colleen and her whole family met us at the aquarium--what a wonderful time to meet new friends (EB made a new special friend in C's niece, Abby).  Ask us about the dolphin broadway show--only if you dare (chris might sing)! On Friday we ran around the playground with the Lamars--smiling as our children enjoyed playing together just as we have enjoyed spending time together all these years.  We had a wonderful dinner with family (cindy & matt, pat & bob) and friends (those wonderful 3 sets of friends who had housed Chris over the years--lamars, kimberly & ellen, colussy-estes) and were thinking about how amazing it is to be able to have those people together, having made so many memories throughout the years together.

We took a walk on Saturday from our hotel (wow--kids love hotels...) to the Centennial Olympic Park fountains.  The joy of watching Heath run through the shooting water was almost too much to take for this mama.  (Aunt Cindy almost got to go in with EB, too!)

Who would have thought, a year or so ago, we'd be laughing at the extreme joy he found in being soaked through, running around with lots of other children? 

We even made it back to NC in time to have a really nice Mother's Day dinner with Mar & Rog and Aunt Nancy & Uncle Robert at Mom and Strow's house.  And we all danced, just in case you were wondering...

I suppose all of this is to say--wow--life really surprises you with the goods and the not-so-goods and all of the time in between.  I am sure that we'll continue to come full circle, or perhaps we'll just keep running in circles (we'll throw chris' new graduation garb in the costume box for the kiddos) but i sure hope that we will be able to stop and appreciate the love & memories & miracles along the way.  I hope you'll do the same, my friends.

Speaking of miracles--we have been able to help jump-start a new campaign for Duke Children's with the Children's Miracle Network that pairs bloggers with patient families.  Shell, who writes the "Things I can't say" blog, wrote about our story and is helping with the Miracle Moms campaign--

http://thingsicantsay.com/2012/05/miraclemoms-helping-children.html

check it out!

we'll be seeing you soon!

We're Home!!!

Well, we're home. We got home around 1:00 p.m. this afternoon. Heath really took a crazy turn for the BETTER yesterday afternoon--it was so great. He colored and played cars with Mimi, threw a plane with Kristi, our wonderful physical therapist who happened to be working in the hospital on Sat. The doctors had pretty much told us that they really wanted to see that he would drink (and hopefully eat) on his own and that he didn't spike a crazy fever again. And then we could go home sometime today.



So Heath Tuttle was fired up about going home. He got a little more fired up about eating as I reminded him of the "incentive" gift hiding in the hospital room that EB had picked out with Ama and Grandpa Strow. He ate more food than he had had in several days (sad this is 5 bites of pizza and half a tub of easy mac--god bless those nurses!). He opened his present (see above pic) and said, "IT IS MY FAVORITE. IT'S A SUMMER VACATION!" It was a playmobil camper/rv complete with "mans" and bikes and a tv and soccer ball. hilarious. We are, however, looking forward to a "vacation" from the hospital. :)
Turns out, Heath really did have those 2 common viruses at the same time that got really bad that also seemed to trigger an episode of his gastroparesis (last hospital visit). We've adjusted meds again and will have to go back for a med level check on thursday. Then, we'll probably wait about a month before we do the heart cath that we postponed last week.

It was really nice today for the staff at Duke to see Heath be so much more the hilarious little person that we all know and love. The hospital staff often only get to see the kids at their sickest, and I love for them to see them happy and healthy to see what their amazing work makes possible. He yelled out the door to the main desk, "I ate some mac & cheese, can I go home now??" and then the nurses got on the intercom to the room and said "Heath Tuttle, you are a good, good boy..."
He was sooooooooooo glad to be home--and now he and EB are dancing around the den with shades down, lights off with the laser fingers that came in one of his wonderful gift bags.

We're going to take it easy this week, so those of you around here might not see too much of us. But we feel really good about where we are. Thank you for your love and support.

emesis is our nemesis!

post that I did not send last night--

ok, so I have been dying to write that title all day long. Each time we're in the hospital, we learn a new word. Last time was idiopathic, which is a fancy way of saying "we have NO IDEA what caused this to happen." So far on this thrilling trip, we've learned 2 new things:

1. Emesis=fancy medical way to say THROW UP

and 2. K.U.B.=fancy way of saying you are getting an xray of your belly (Kidney, Uterine, Bladder but apparently you can't actually see those well on the particular xray? hee, hee)

For those of you who are medical people, I apologize for anything I have written incorrectly. For those of you who have young children, particularly daughters, didn't you like my use of Fancy Nancy phrasing? :)

I am sitting in my bed, showered, semi-relaxed, trying to make myself go to sleep and NOT stay up to watch my WOLFACK(!!!) play the whole game since this is my night to get some sleep. And i am sleepy.

Last night was a long night--I am afraid that emesis was our nemesis in the midst of a 103 fever spike around 11 p.m. He really had a hard time settling down and he just felt really bad, as he had for the last 5 days straight with high fever. We really had no answers, but we did have the sense that we were not looking at something really bad...we also knew that heath really didn't feel well. It is hard to see your child hurting and to not be able to fix it.

As I moved from his bed to the recliner when he finally started sleeping a little more soundly, I found myself wide awake listening to the familiar sounds of the hospital at night. In the dark of night, you hear it all more clearly--a clicking sound from the IV machine with an occasional beep, nurses talking at the nurses' station, one child crying down the hall. The helicopter flies overhead every once in a while--and all you can think is, "oh dear, what has happened to that person? someone's life is changing forever in the whirring of those blades in the air..."

I was reminded of the dark night we spent in UNC hospital with our 9-month-old baby 3 years ago as we realized that life as we knew it had changed. I remember holding onto him for dear life through the night, so scared. Goodness we have come a long way in these 3 years. It is never easy to see your child hurting, though. Some things never change.

OK, so enough of my thoughts on hospital life--you would probably like to know what has happened today. We still don't know a TON. We did learn late this afternoon that the cultures came back showing that Heath does have 2 viruses (adenovirus and metapneumovirus, which are evidently pretty common regular things). We continue to be unclear if there is some sort of secondary infection or not. yesterday was frustrating with his lovely GI tract, lots of gas and discomfort and not much eating. We've had consults with ID (infectious disease--a name to freak you out!) and GI. We've had incredible care. Heath had visits from quite a few of his favorite ladies today--Shelley, Mar, Mattie Anne, Helen, Julie & Kathy (preschool teachers), Renee (we call her Nee), and Mimi. They came with tasty treats, balloons, fun things to play with. Heath's Turtle Class sent an amazing set of treats with police cars that finally helped perk him up and got him playing!!! EB is having a fun sleepover with Ama and Grandpa Strow tonight. As I write this, I am reminded again that incredibly blessed to have such wonderful family and friends in our lives. Our adventures in heart transplant land are not easy--whew--but having the incredible support both here and far away makes it easier, and gives us strength.

ok, so I fell asleep before I finished the blog post last night--and here is chris' morning update. I am still proud of my wolfpack! (and i slept until 8am!!)--

Saturday morning update (from Chris this time). Heath had a really strong night of sleep, a huge blowout poop at 8am, and sweated and rolled around and his IV came out. We may not need it now, though. Heath woke up his very fun self today, playing and asking questions, drinking and playing with his cars and little lego men. Bit by bit. Feeling much better today, though. Thanks to you all!!!

from Carrie again--

We have made significant movement, on multiple levels :) today, but we still don't know what is next. There are still some questions to answer (including whether or not that darn IV goes back in...), but it is much easier waiting for those answers when Heath is a little more himself. We'll keep you updated as we go along.

wacky reunions...

so we had a reunion today that pretty much no one in duke hospital wanted to have--as we were entering the hall to find our room (we had just been admitted--will explain in a sec), we ran into all of our cardiology team doing rounds and they were at the room of our wonderful PICU roommie, who was also here. I said, "wow, its like old home week...but i might cry because none of us wants to be here all together so I am just going to keep on walking to our room..." At that point, Heath was still in a pretty good humor and had actually been giving me a speeding lecture in the car and telling me about the places he wanted to go in the hospital and that he wanted the "orange room." There are so many things that feel "wrong" about all of these statements, but i guess they also just remind me that this is going to be part of our life...

so, you are wondering why we are here at Duke, in this very orange room (of course they got one for us, bless them:)? Heath has had a fever for over 5 days straight. He had had a mild fever/ear infect/cough off and on for the last 3 weeks, but since Sunday this had been different. We came in here to duke outpatient on Tuesday for bloodwork/xray and at that point they said, "you know, maybe we should just admit him for a 3-day IV antibiotic..." Since we still thought it could be viral, we decided to see if it would get better over a day or so and then make the decision. He seemed so much better the next morning and I said, "take us off your radar" to our wonderful Duke team, only to have him spike a 102.8 fever an hour later. when it spiked again today, we decided it was time to come on in. he has been as up and down here as at home, only now he is upset about being in the hospital and being poked (but they did get the IV in ONE(!) stick!!!) and looked at all the time. he did enjoy a fun trip up to see the helicopter on the 9th floor with his dad...step by step.

the initial bloodwork has come back and it looks like he actually does have an infection. they are not sure where yet, so we're doing all sorts of tests/cultures to figure that out. so, we're hitting it with 2 broad spectrum IV antibiotics for a couple days and are hoping that that knocks out whatever it is. SO, as much as we didn't want to drag him in here, we know we need to be here.

as we walked down the halls this morning, we ran into nurses, doctors, social workers, child life specialists, nurse techs, other patients--and our nurse turned out to be a wonderful guy who Chris went to HIGH SCHOOL with in Black Mountain (we reunited with him the last time we were in here too). these are reunions that we'd rather not have--I always prefer to see these wonderful people in target or in a local restaurant--but I am reminded how grateful we are to be in this world-class place with these wonderful, caring people trying to figure out what's happening with our very special guy.

daddy is home taking care of getting our girl to bed and a sermon written. so my sweet fella and I are going to snuggle in the hospital bed and watch some basketball.
as always, we are grateful for your thoughts and prayers and keeping us company (and the wonderful activities from my bible study friends today--bless you!) on this wild and crazy journey. we'll keep you updated.

heart cath postponed!

heath had a pretty big coughing attack that woke him up for 2 hours in the night! ahhhhhhhhhhhhh....so, we just called Duke (well, I attempted to call duke) and said that we didn't feel comfortable having him put under today. Since it is not an emergency, I think this is best for all.
SO, we are postponing the cath. will keep you updated on the next date.

blessings on your day--hope you get to enjoy the beauty and warmth of the sunshine AND a little march madness!!!

carrie

heart cath tomorrow!

I have been admonished by several folks for not telling you that Heath is having his annual heart catharization early tomorrow morning. Well, hopefully he will have it--he is coming off a pretty bad cough & ear infection, so they are going to wait until they see him tomorrow morning before making the final decision about doing the cath. Because this requires general anesthsia, they have to be careful about his airways being clear...
SO, I guess I hadn't really thought very much about it until yesterday...
We've been pretty busy between Heath not feeling great (it just takes him a bit longer than other kids to get his energy back after a cold, etc...) and just general life stuff. I guess thats a good thing--to be so busy and able to do "regular" stuff that we forget about things like heart catharizations, or that they can be a big deal.

so, we'll keep you posted, but we'll also ask for your good thoughts and prayers for heath, us and the medical staff at duke tomorrow morning!

sleep well.
c

ah, parenting...

BIG BOY BED!!!

I have been thinking and talking alot about parenting lately. That reads a little ridiculous as I look at that first sentence--of course that is what I have been doing--but it feels like it has been particularly poignant in conversations.

My birthday was last week. I joke with friends that I got: a new vacuum cleaner, 2 new van tires and bribery presents for our children (heath moved officially to his BIG BOY BED). Chris' birthday was this Wednesday, and he received similar gifts. :)

Ella Brooks said, "Heath, you know what mommy really wants for her birthday? For you to pee in the toilet..." (at least SHE is trained well. ha!) We ate at Cracker Barrel for dinner because
a. we knew our children would actually eat & play checkers (with Chris!!) and
b. we had a gift card. (well, and I love some "Eggs in a Basket...")

I got a couple hours to myself in the afternoon to flip through magazines at Barnes & Noble, sipping on a chai latte, thanks to my sweet husband. It was a good day--as a parent your perspective changes a bit about what constitutes a "good birthday," I suppose.

There is a blog post that so many of my friends have posted or sent about parenting that really struck home: www.huffingtonpost.com/glennon-melton/news/momastery
It's called "Don't Carpe Diem" and it really rings true to the joys and challenges of parenting on a day to day basis. You should read it.

I think after some of the things that we've been through in the last few years that we tend to live somewhere between the "enjoy every moment" and the "don't carpe diem." We know the reality of perspective-building experience, but we also know the reality of a willful child who needs to be treated as normal as possible. We know his wonderful sister also needs to not just be the "sister of the sick kid." It is a delicate balance.

On our medical front--not too much new. Heath has had some good progress with his leg issue (he has been wearing his boot/afo more regularly). We think, after a few weeks of dragging him in and out of the hospital for bloodwork, that we finally have his med levels in check. It turns out that one of his immuno-suppressant meds was reacting with the med for his GI issue. He took it in stride, actually saying to the man sticking him, "I think I would like to come in every day for a finger prick..." He did NOT mean that. We will have his annual hearth catharization in a couple weeks. He is feeling good--good enough to give all of us a run for our money. His wonderful teacher said, "he was a little less stubborn today..." :)

There have been two tragic accidents in our community with kids that have reminded many of us to "savor the moments" a little more (please pray for the Nichols family, whose son is heath's age and recovering from a gunshot wound to the head and Hubbard family, whose lost their 14-year-old when he was electrocuted & fell from an tower). The trick, I think, is figuring out how to enjoy the little things a bit more, without parenting a little less. You can't live every moment of life wondering if it will be the last--it's not healthy for anyone. But it is helpful every once in a while, amidst the chaos of daily life, to remember that we need to find and savor some of those moments a little more than we do.

So, I will settle for the extra moment of snuggling in the big boy bed that took some parental struggling (and, don't judge too harshly, Playmobil BRIBERY) to be in in the first place.

(EB as photographer)
Speaking of parenting, I have some wonderful friends from college who also now go to Westminster with us. They have a great desire to parent another child (their daughter Maeve is EB's pal too) and they have a website introducing them to prospective birth parents-- www.erinandkirk.com/index.html.

I throw this in because you never know who might see something like this and have a connection for them. Just as you never know what else might surprise you in this life journey.

Say a prayer for them, and for all those who desire to parent and are having struggles, for those in the throes of parenting, and for all those saints along the way who help with raising the village!

(heath as photographer--poor daddy is out of town and not getting to experience the joy of his children as photographers...ahhh...)

love, carrie

happy 4th birthday, heath tuttle!!

Heath started making noise in the monitor at 5 a.m., and then he went back to sleep. My brain, however, woke up in a big way...don't you love it when that happens??

We've been busy in the last month, and I suddenly allowed myself to think about what day it is: Heath Tuttle is 4 years old today!!

Sometimes I remember that day like it was yesterday. Sometimes it feels like a million miles away, lost in a fog of what happened at his nine month well-check and after. I have realized recently that that it is not fair to him, or to ourselves, to live too much into this "before the fall, after the fall" mindset, at least when it comes to our family. We're working really hard on living as normally as possible (emphasis on "possible" by the way).

Right now that consists of working on Heath's willfulness, which has been pretty spectacular in recent weeks. Several members of my family have stiffled wry smiles with funny little comments about "payback is hell..."

We had good visits with lots of family for the holidays--and made it though quite a bit of travel with no illness, save Chris' stomach bug on Christmas eve/day (see the recent pics where self-proclaimed "Super Fix" was making his debut & holding Santa's cookie/reindeer carrots).

Now we're kicking off the year getting back to school and routine (daddy just turned in his draft of his DMin final project!!! yippee!). We're trying to help Heath work on the new year's "resolutions" that we have made for him--to get rid of diapers and several other "baby" things that he is adamant about KEEPING (is it fair to make resolutions for your children?? :). Exhibit A: He just woke up and I said, "Happy Birthday, big guy!" To which he answered, "But not too big to sleep in my crib. I will sleep in that big boy bed when I am bigger than daddy!" Awesome. that could be a long, long time, buddy.

Medically, he's doing pretty well. We're still really struggling to get him to wear his boot, and although the botox seems to have helped with his range of motion, he still has periodic bouts of leg pain at night. We had some funny bloodwork results in mid-december, but it turned out to be a medicine interaction issue, and all of that stuff is ironed out. All the other tests came back looking GREAT! We'll do his annual cath late feb./early march. Other than that, we keep plodding along, working on all those other glorious things I have already mentioned, trying to balance expectations about helping him be as "normal" as possible but also realizing that sometimes that is not completely realistic given what he has been through in his short life.

Our dear friends, David and Deanna, came to Greensboro a short time after Heath was born and took the pictures at the top of this post. Wow--4 years ago. And look at my sweet girl--so precious. He's looking up at her, as he still does each day. Heath just asked, "Is that me? Who is that girl holding me??" Then he said (sort of like he was old man asking a rhetorical question to himself), "when did I get so big?" I keep asking myself the same question, but I sure am happy you are so big, buddy.

And then we had a pretty hilarious exchange about babies drinking mommy milk, which i will spare you. :)

Here's hoping your day is full of good things. We are grateful for your love, support & prayers all along this crazy journey. I am going to join my fella in the dance that he's doing right now.

blessings, carrie