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

BRAVERY...

We went to mom and strow's for dinner tonight--a "celebration" of sorts. You see, today is the 3rd anniversary of Heath's heart transplant.

In the dark car on the way home, EB asked about a scheduling issue tomorrow and I said, "well, Heath has a big doctor's appointment tomorrow..." and Heath piped up, "well, there are NO shots at this appointment." I said, "well, no sweetie, that isn't actually true..." trying to figure out how to tell him that he was going to have botox injected into his lower right leg, actually. EB jumped in and said, "but if you have to get a shot, Heathie, you just are going to have to be really brave" to which he answered, "no, ella brooks, I am NOT brave..."

I beg to differ.

The "wreath" that you see around Heath's face in the picture is actually made up of the hands of all of the family members who were here for Christmas right as Heath had his transplant 3 years ago. It hung in his hospital room. He pulled it out of the box as we were decorating a few weeks ago and ran around with it on his head. He would run away from me with that twinkle in his eye and say, "you have to catch me to get that picture..." I can think of no better image as I think through the past 3 years--for where we were, and where we are now. Tonight we danced--hard.

Everything has felt hard, or heavy, in the past few days. We have been on the regular whirlwind of advent and christmas preparation, with some added emotion. This time of year is full of those ups and downs for us--in one moment marveling at the holy joy of singing "Go Tell it on the Mountain" at the top of our lungs with the church staff in our living room a few Friday nights ago. In the next, we were remembering sweet Angelina's family in Texas and the horrible loss they suffered three years ago. We can celebrate Angelina's beautiful spirit and her gift of life as we watch and marvel at our special boy tonight.

Chris and I were able to get a night away (thanks to groupon and his parents!) on Friday only to return to find out that one of the other heath transplant patients at Duke had passed away. I was able to go to the visitation last night--with such a heavy heart. Please pray for Gavin's family tonight. We go tomorrow for Heath to have botox injections in his lower right leg, hopefully to help some of the pain that he has been feeling. We go on Thursday for our quarterly cardiac check-up at Duke.

BUT, generally, we will go about our lives pretty normally (ha--we don't really dare to think that we are really "normal"--just look at that picture of me singing christmas carols with my dog up there...:) with some boot-wearing, and medicine thrown in. We cherish our wonderful little people--their spirit and their spunk. We cherish an amazing family and community of friends and congregations who have held us up when we weren't sure we could stand on our own.

And when that conversation sprang up so innocently behind me in the car tonight, my emotions finally got the better of me. I cried silently in the dark for a few minutes with such an amazing mixture of emotions, and then I quickly jumped back into the conversation--that's the mom's job, right?

Thank you for helping to give us the strength to be brave for the past 3 years.

Thank you for continuing to pray that our wonderful guy will be brave in midst of all that comes his way.
And don't forget, in the craziness of this time of year, to take a few minutes to hug just a little longer, pay a little more attention than you'd probably like to, help a few more who really need it, and to relish in the sacred moments. I don't think you'll regret it.

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