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

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.