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

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