Wednesday, November 30, 2011

Force

Luke just left with Rog to head to his first Force basketball practice. I'm not ashamed to say I cried a little.


If you don't make one shot tonight, Luke, I couldn't be more proud of you.

Monday, November 28, 2011

Half a Year, Whole Lot of Great


Laney celebrated her half-year birthday on November 17. My baby is six months old and we could not love her more. After looking at her growth chart, her pediatrician commented with a smile, "You have one symmetrical baby." That is one way to describe our girl ... but there are so many others, too. In the spirit of descriptive words, here is Laney's six month update:

Symmetrical
Laney-girl weighs 16 pounds, 12 ounces. She is 26 1/4 inches long and her head circumference is 17 inches. All three measurements in the 75th percentile! I have no idea how this is possible, but hopefully she'll get her Auntie, Uncle and Grandma's height and not her mom's!

Lightning-Fast
Watch your food, people, this girl is quick when you have anything edible within arm's reach of her! She has not yet met a solid food she doesn't like and she kicks and wiggles whenever you are eating something and she's not. She would eat steak and potatoes if I let her. Thanksgiving was so fun, letting her eat some goodies off our plates. Nonna even let her try some of her homemade apple pie.

She's also quick to defend herself, getting lots of practice when brother's in her space. At her six month check-up, Dr. Husarik finally had to ask me to hold her arms because she kept blocking him when he was trying to look in her ears. "No question she has an older brother!" he quipped.

Content
Laney has grown into such a content and happy baby. For a few weeks, she would let out a wail if a stranger approached her or if someone besides mom and dad were holding her. But no longer! She is much more open to new faces and letting others hold her. She is truly happy, and that makes me so happy. She is content on the floor, playing with her toys, she is content in her crib, watching her mobile and she is content in the Bjorn, seeing the sights. Her new place of contentment is her exer-saucer. Hours of fun! Okay, not hours. I promise I don't leave her in there that long.

Tough
With a brother four years older than her, she has to be. I've lost count of how many times a dinosaur has whacked her in the head.

Inconsistent
We have seen HUGE improvements in Laney's sleep (thanks in large part to Dr. Weissbluth's Healthy Sleep Habits, Happy Child). Even though she is sleeping so much better (from 7pm to 6am last night!!!), she is still inconsistent in this area. She'll have a 9 or 10 hour night and then she'll have two nights where she's up twice again. We have almost completely cut out her 10pm awakening by letting her fuss that one out. If she does wake at that time now, it's only for a minute or two.

Her naps are inconsistent, too. Some days she'll take two 2-hour naps and some days she'll take two 1-hour naps and then a 45 minute nap in the late afternoon. She definitely naps best in her own bed in her own house. She'll cat nap if we're somewhere else, but that's all I can get out of her. Must be a homebody like her mama!

Curious
This girl can no longer nurse very well unless we're in a quiet room. She is too curious about the world. What happens if I pull this? What does this taste like? What was that giant crash coming from where Luke is?

Active
We finally had to put Laney's bumper up on her crib. She has learned how to scoot backwards using her heels and was continually crying out when she'd bump her head on the crib rails. Sweet girl kicks and moves all. day. long.

Delightful
I think this is the most fitting word of all.

Wednesday, November 16, 2011

Luke's Cardio Appointment: Waiting Explained

Leading up to this cardiology appointment, I had been wrestling with thoughts about Luke's Fontan. As much as I dread putting Luke through another open heart surgery, and as much as I fear the possible complications, I am his Mom and I want the best for him. If the Fontan circulation would help him breathe a little easier or run a little longer, then I want that for him.

I have followed other heart families through their child's Fontan and the difference before and after was drastic. Dr. Stefanelli does not feel like this would be true in Luke's case. With Luke's heart function so good and his sat's relatively high, he does not think Luke would be a totally different kid after the Fontan. He won't go so far as to say Luke will never have the Fontan done, but he is still not ready to put a timeline on this final surgery. He doesn't agree with the school of thinking that once you hit a certain weight you move forward without any other indication. And his perspective is that there is no other indication right now that Luke needs the Fontan. In a year from now could there be need? Of course, but I get the sense that we could still be putting this surgery off a year down the road.

Dr. S. explained the waiting to me in a new way yesterday: As soon as you do the Fontan (and that is to say that it is even successful in the first place and a take-down is not needed), the clock starts. The clock isn't ticking down to heart failure as much as it is to liver failure. As more and more of these single ventricle kids grow up, docs are realizing that the liver does not tolerate the Fontan circulation forever.

So we wait. The risk is too high for how well Luke's heart is working with the Glenn circulation. Although Luke doesn't have any semblance of a right ventricle pump, his heart almost fits into the category of a one and a half ventricle. His left is a big ol' strong pump and for that we are so very thankful.

One new development seen on the echo that we'll be keeping an eye on is a collateral vessel growing off his aorta. It had grown a bit since last May and may start causing Luke's sat's to go up. If it does, Dr. Stefanelli will coil it off in the cath lab at some point. But for now it's just a watch and see. Luke was satting yesterday between 84 and 86%. I really hate those sat machines. It took about three minutes to get an accurate read, and for those few minutes it was reading 65%. Do they know what that does to a mama's heart?!

The coarctation site was still wide open from the angioplasty a year and a half ago, which was great news, and his EKG and blood pressure (100/56) were fantastic.

The actual EKG is absolutely painless, but for most heart kids, taking the stickers off afterwards is the worst part of the appointment. We have never had a tearless EKG until yesterday. I watched Luke just shut his eyes and grit it out, telling the nurse, "Just do it! Just do it!" Stud.

Loooong echo, but my big man did great, watching Peppa Pig and sucking suckers.
We love you, Northwest Children's Heart Care, but we hope to not see you for another six months!

Monday, November 14, 2011

It's That Time Again

The last time we had Luke's heart checked Laney was happily swimming in my tummy. Now she is almost six months old and it is time to have Luke's beautiful ticker looked at again. We would, as always, love prayer for a good report from Dr. Stefanelli. As we get closer to the Fontan, each appointment feels weightier than the last. Please pray for wisdom for Dr. Stefanelli as he plans for this next surgery. And a prayer for Luke's cooperation is always welcome! These are long appointments for a little guy.

Laney-bug will spend some quality time with Nonna while we're at the appointment, but she could use a prayer or two as well. She has such a nasty cold. We took her in on Saturday to make sure her ears weren't infected (they weren't) but she is still so congested, making it hard for her to sleep. Thankfully she's still eating well (I'm telling you, there isn't much that stands in the way of this girl and her food!), but the girl is producing some serious snot. Poor thing.

Luke also had this cold and cough, but just started Azithromycin and is definitely on the mend. Can I just say out loud that I hate cold and flu season?

I will be sure to post after our appointment tomorrow morning. Thank you all!

Please note that Luke is wearing his Christmas pajama pants and his shark slippers. Oh, the kid ...

Friday, November 4, 2011

Retraining my brain?

I just read an incredible blog post. Incredible in the sense that in 783 words, it opened to me a perspective I had never once considered (and I have to admit I do a lot of considering when it comes to Luke's heart).

Amy Verstappen is the President and CEO of the Adult Congenital Heart Association and a heart warrior herself. She writes, "The joke in my family is that I never met a bureau I did not want to move. Although none of us have an athletic bone in our bodies, of my five sisters I am by far the most physically active."

She goes on to say that she was lucky to have both parents and a pediatric cardiologist that never let her in on a secret: Her heart beat too slow in relation to her activity, a condition known as "chronotropic insufficiency". So she would run, jump, twirl and sweat until she felt like she would faint or throw up, all the while, her heart rate never exceeded 90 beats per minute. What she thought was "normal" was actually a side effect of her overworked heart.

As Amy entered into adulthood, she wrestled with the question, "Do I wish I had been told sooner?" As with many questions, the answer was yes and no. But ultimately, she is thankful she didn't know she had limitations, especially as a child and young teen. "If someone had told me early on that I had 'abnormal exercise response,' and that I 'couldn't' run due to my heart rate, I never would have tried."

And today, she baffles cardiologists. Put her on a treadmill for an exercise test, and her results are within the normal limits. Very few complex CHD patients can say this.

Is it possible that these kids with broken hearts experience exercise intolerance because they believe they are exercise intolerant? Could it be that pushing a broken heart actually makes it stronger? Amy would argue yes: "My stamina today may be a direct legacy of a childhood spent pushing to my limit."

I write this knowing full well this is a fine line to walk, and one of those difficult positions parents of heart kids find themselves in.

Luke's pediatric cardiologist has time and again told us to let Luke limit himself, that kids like him under 6 or 7 will really truly self-limit. And time and again we've seen Luke do this. But still, I catch myself (time and again!) wanting to limit him. I'll want to offer him a piggyback instead of making him walk, or I'll want to interrupt his activity to offer him water. I think these are okay in themselves, but what it boils down to is that I don't fully trust Luke to listen to his body. I worry about him when he plays hard and is out of breath and my natural instinct is to take control of his activity level.

Roger and I were faced with our first sports-related decision this summer. Luke was invited to play on a 4- and 5-year old basketball team this fall, coached by the dad of Luke's best friend, Marcus. My honest reaction was not to let him. I didn't want to see him struggle, or not be able to keep up with the other kids. My reaction, honestly, was about me. My husband's viewpoint, thankfully, was more Luke-centered. He reminded me that Luke is currently under no activity restrictions and this may not always be the case. We both value the lessons team sports can teach, and this may be the best time for Luke to participate, when sports aren't so competitive and aerobically strenuous (I mean, how much running and jumping are 4- and 5-year olds really going to do on the basketball court?!)

So we are going to go for it. Coach David is one of our best friends and we trust him implicitly to pay attention to Luke. Our goals for him this "season" are not for him to be the top scorer or the fastest down the court. Our goals are simply this: For Luke to be a coachable kid, to have a blast with his team and to capture some awesome video to post on the blog ;-) As Luke is learning about dribbling and passing, I will learn more about trusting my son to know what his body needs.

And Amy? Armed with a pacemaker, she is as active as ever, thankful her family let her set her own limits. This is a gift I want to give my son, as well.

Go, baby, go!

Friday, October 21, 2011

BooBoo Bear

Just in case your day calls for a baby's laugh...

video

What I especially love about this vid is that Luke is being just so classicly Luke: Has to be in the middle of the action.

Laney has accumulated many nicknames in the past five months. BooBoo Bear is her latest, compliments of Luke (I'm hoping I said it first and he didn't come up with that one on his own). Either way, it is pretty darn cute when Luke baby-talks like we do to his sister, calling her BooBoo Bear.

BooBoo Bear turned five months old on Monday. I receive the BabyCenter email updates each week, which include developmental milestones, tips and tricks, videos and articles centered around your baby's exact age. What it failed to include in this week's edition, however, is any explanation as to how I could have fallen so hard for this little girl. Yes, I fear I will soon be bald thanks to postpartum hormones. No, I am still not getting uninterrupted sleep. Unfortunately, she is still stubborn about the bottle and where she sleeps, but daughter, you have captured my heart. You are worth it.

I think this is what God wants to say to us: You are worth it.

"While we were still enemies, Christ died for us." —Romans 5:8b

Now that is love.

I am guessing the not-so-little-one is 16 pounds now, judging by the difficulty of lugging the car seat in and out of the car. She has loved trying solids, maybe a little too much. After she ate an entire jar of sweet potatoes, I read that you should start with just a teaspoon or two for those first feedings! Whoops. She was a bit fussy that next day, with more spit-ups than usual, so we'll take it a little slower. The girl loves to eat and I love that she loves to eat. Even at 2am. Okay, I don't love it at 2am, but I am far from hating it :)

Laney is typically only waking to eat once at night, right around 2 or 3 in the morning. Then she's back down until 5ish. For a stretch there, she was sleeping all the way until 4 and then down again until 7. Sweetheart, what was wrong with that schedule? I feed her again at 5ish and she'll take another hour cat nap before getting up for the morning. She and I are working hard this week on falling asleep apart from a feed. She is doing so well as long as I don't let her get overtired. I think the longest she's cried is about 10 minutes. I am hoping she starts stretching her naps a bit more, since right now they are all about one hour, sometimes a little less. Right now she's going on an hour and a half ... good girl!

The name Laney means "Light" (this is partially why we picked this name ... her brother's name means "Bringer of Light") and that she is. She is a light and a delight. She is so much more content these past two months. The older she gets, the more I'm convinced her tummy was not the happiest of campers those first weeks. It's most noticeable in the car and what a relief to not have to listen to her scream every car ride.

She is rolling like crazy and so close to sitting and rolling from back to tummy. She is still a wiggle-worm and I'm so thankful to nurse her since that's when I get my snuggles. She is an observer like her brother and wants to see the world, not sit still and cuddle.

Laney went with Luke and I to the pumpkin patch with Luke's class for her first field trip. She rocked it! She stayed in the Baby Bjorn the entire time and nursed while the kids had snack. I was so hesitant to take both kids by myself. It truly could have gone either way, but it went the good way.

Luke and his "best" buddy, Kayser. It's all Kayser, all the time.

Laners and I at the patch
 I didn't expect the stranger anxiety to start so early, but it looks like it's here. Yesterday, while I was at work, my mom watches the kids in the morning and then a sweet girl named Andie watches them in the afternoon. It was the first time Andie had Laney by herself and it was not pretty. I'm choosing to look at the positive and focus on the fact that by the time I got home, Laney was letting Andie hold her without screaming. It can only go up from here. She is a mama's girl and as much as I want her to be attached to me, I definitely want to keep challenging her to be open to new faces.

We love you, Laney. Happy 5 months, girl!

Sunday, October 9, 2011

Mmmmm

I'm pretty sure


a certain little girl


was more than ready


for her very first taste


of rice cereal!


Now THAT is how it's done!

Thursday, October 6, 2011

Photography is not my gift

Which is why we paid the amazing Sara Parsons to shoot our family photos. I am so thankful we did, but kicking myself we didn't do professional photos sooner. Sara, you can shoot our family anytime! She managed to get great shots despite quite the uncooperative four year old (you'll have to trust me on this one, he looks happy as a clam in the pictures!)











Thursday, September 29, 2011

Joy-bringers

Often throughout the day I experience with Laney what I couldn't with Luke at this baby stage: Pure joy. In no way does that statement mean I didn't experience joy with Luke or delight in him in countless ways. It's just that with Luke, those sweet moments were always bordered with concern and clouded with the unknown. Is his color okay? Is he breathing faster than usual? When's his next feed? And did I write down how many cc's he took? Please don't let him spit up. We have to refill his meds. Wait, why is he sleeping longer than usual? Please don't let him get sick.

I could never turn off my "heart defect" brain with Luke. And to a degree, that was okay. I was given him by God to be his mom and his advocate. I needed to pay attention. But there is something so breathtakingly pure about mothering this time around. Making Laney laugh is just about making her laugh. Watching her grasp toys and touch my nose is simply about delighting in her development.

My heart so much doesn't want to put these two experiences in "good" and "bad" boxes, because through each, I am learning exactly what God needs me to. There was no way we could have seen the depth of God's care for us without walking through the hard days of Luke's diagnosis, birth, and life. This is what I call sorrow-joy. At the same time, we could never have known the fullness of God's goodness and generosity without the gift of Laney's health. This is happy-joy. Joy can be found in both because God is using both sorrow and happiness to deepen our trust in Him.

So although I am careful not to generalize Luke and Laney's babyhood, it is impossible not to notice the differences.

It was different for me yesterday when I caught myself feeling excited to see the number pop up on the scale at Laney's 4-month appointment. (14 pounds 11 ounces by the way. Chubby Wubby as Luke sometimes calls her.)

It is different for me to drive into work on Thursdays, hoping Laney does well on the bottle, but knowing she'll be just fine if she refuses it.

Her first cold was radically different for me compared to Luke's. Luke's first cold was shortly after his Glenn and we almost had to readmit him because of fluid build-up in his pleural space. I can honestly say not once have I counted Laney's respirations during this cold. And honestly say how nice that is.

How incredibly different to hand Laney over to a friend or family member without asking them to scrub their hands and then proceed to douse them in Purell first.

Can you call this second time around easier? Maybe. Less stressful? Yes. But better? No way. In the same breath I praise God for my children's perfect hearts.

Saturday, September 17, 2011

Seriously?!

It's how I felt when Roger and I celebrated our ten-year anniversary this August. Ten years? Seriously?! And now I'm feeling it again as little miss Laney-bug turns four months old today. Roger and I were watching her on her tummy this morning, wiggle around to get a touch closer to her toy, then roll over, marveling that soon this little girl will be crawling, and eating solids and driving. Okay, that's still a ways off, thank goodness, but you get my point! She is growing up and is so not my tiny baby anymore. We haven't had her four-month check-up yet, but I am guessing this babe that came out so tiny is creeping up on 15 pounds. She has changed a lot in four months, but not in this area. The girl loves her milk!


She nurses about every two to three hours throughout the day, but can go anywhere from six to nine hours at night without waking. She had about a week where she was sleeping 8-9 hours each night (and the bald spot on the back of her head to prove it), but last week decided to start requesting that 2am feeding again. She is at an age where she is quickly and strongly developing opinions and one opinion she is voicing is anti-bottle. She'll take in when need-be, but she doesn't love it. Bless my husband, he has put hours into helping her take the bottle these past two weeks as I prepared to go back to the office part-time. When I did go back on Thursday, she took three bottles! Not without a little fuss, but she didn't starve! No, no worries about this chub starving.


I love nursing this sweet girl. I love how she grabs onto my shirt when she nurses and how I can see the imprint of her ear on my arm when she's done. I love rubbing her wrist wrinkle and how she almost always falls asleep towards the end of a session.

Many mornings, she is now waking up happy and babbling instead of with hungry tears. I listen to her through the monitor for a few minutes until my favorite part of the day: Her huge gummy smile as soon as I come to pick her up. She makes you feel like a million bucks, even with bed head and bad breath. She is generous with her smiles, but makes you work for her laughs. Her first belly laugh was due to her Papa Pat. She must have a good sense of humor because he is a funny guy.

Laney is not interested in "baby" things. She won't tolerate the cradle hold and is much more content sitting big-girl style in the stroller rather than in her car seat in the stroller. She loves to see what is going on, which may be part of why she still doesn't like being in her car seat. I think I'm going to try putting a mirror back there where she can see herself. Now that she is able to grab at toys, having a toy hanging from her car seat handle has helped diminish the tears in the car (ours and hers!)

Much of her day is one big startle reflex, as brother comes roaring in and out of her space. He is so loud and I'm shocked at how well she tolerates it. I often hear Rog telling Luke, "Get out of her space, dude!" But I truly think she has given the most smiles to her brother.


You have brightened our lives, Laney-girl. We love you, love you, love you!

Monday, September 12, 2011

Bikin' and Sittin'

This summer was a summer of milestones for my little man. First swimming lessons, first time putting his head under water (and subsequently first time needing ear drops for swimmer's ear), first time attending VBS, and first time riding a "big boy" bike.

My mom bought him a sweet Buzz Lightyear bike for Christmas, but it wasn't until this summer that he could finally coordinate the pedals. He would always get stopped and stuck because these pedals brake when pushed backwards. It was a pretty big deal when he finally got it and he was so proud of himself. Lately, his favorite thing to do is ride his bike in our cul-de-sac with the neighbor kids. And here are the bumps and bruises to prove it.



Look at this kid go!

video

Laney-bug isn't bikin' yet, but she's got the sitting thing down pat!

Friday, September 9, 2011

Pre-K, baby!

First day smiles!
He really didn't want me to take his picture, but too bad, buster!

I just dropped Luke off for his second day of Pre-K. Most of the morning is excitement, excitement, but right as we are getting into the car, nervousness edges out excitement. But then Miss Brenda rounds the corner to take her class back to the room and love wins out over both nervousness AND excitement. Luke's face is pure joy when he sees his teacher. I picture the slow-motion scenes in movies when she comes into Luke's view, where the angels sing and a halo of light surrounds Miss Brenda. His first love, perhaps?

When we told Luke he got to have Miss Brenda again for a teacher this year, he couldn't stop jumping. "Really? I really get Miss Brenda? You're not teasing me? Really?" It was pretty darn cute. I was secretly glad he got our beloved teacher again as well, since it has made the start of the year not nearly so nerve-wracking for me.


Luke goes to school Monday, Wednesday and Friday, from 9-11:30am. After I drop him off, Laney and I hit the gym, or Starbucks, or both and get some quiet time at home together. The poor girl never gets peace and quiet at home with a 4 year old brother.

My baby boy is growing up. Next year he'll start kindergarten and then in a blink of an eye, perhaps he'll follow his Auntie Andee to UCLA? He looks good in blue and yellow, don't you think?

Tuesday, August 23, 2011

4 for 4

Every prayer request I posted yesterday was answered: God is good! But here's the thing about faith ... even if something had happened to Luke yesterday, God would still be God and He would still be good.

We checked in to the hospital at 6:30 am (thank you, Mom, for coming to our house so early to watch Laney!) and got Luke back in to the pre-op room. He was a trouper being woken up and the biggest hurdle of the morning was getting him into his hospital gown. After we jumped that hurdle, he was so cooperative with the nurse, jumping on the scale, giving her his arm for blood pressure, etc. Around 7:15 am, the cardiac anesthesiologist came in to chat with us and order up a good ol' dose of Versed. Soon after, Dr. Beck stopped in to go over the plan again and have us sign the consent forms. Luke was content watching Sesame Street on Dad's lap.

We had another little hurdle convincing Luke to open his mouth for the Versed ... he remembered the taste from last summer. Thankfully, only a little came back out and within 10 minutes Mr. Luke was silly boy (check out the video at the bottom of the post). Dr. Beck's nurse came in shortly after that to take Luke back on a "dinosaur hunt". Even though he was willing to go with the nurse, he was still cognizant enough to yell out down the hall at us, "Where are you guys gonna be? When will I see you?" I honestly cannot imagine that part of the day without Versed. I don't think I could do it.

The entire procedure took about an hour and by 9:15 we were back with Luke in the post-op room. Dr. Beck reported that Luke did fantastic and he was able to get everything done. He did end up having to pull that first molar on the bottom left and put a metal spacer in to save that space for his permanent tooth. He also put a crown on the lower right molar and put sealants on the rest of the molars. He mentioned another factor that I wanted to pass on to other heart families. He said he sees a lot of kids like Luke who need Pediasure come in with cavities. Luke was on Pediasure from ages 1 to 4. Just another possible factor and an encouragement for parents with younger heart kids to start seeing a dentist as young as possible! Dr. Beck is hopeful that we will just need bi-annual cleanings from here on out.

When we got to Luke, Dr. Lord (the anesthesiologist!) was holding him in a chair wearing a pink pull-up (Luke, not Dr. Lord). Luke was so ticked and had had an accident. So while Nurse George was changing the bed, Dr. Lord was holding Luke until we got there. There is not much more in life that I'm thankful for than good nurses and doctors. George told us first thing, "Your son was NOT happy with me for putting a pink pull-up on him, but it was all I had!" Later in the day, when his I.V. was taken out and we were getting close to discharge, Luke asked, "Can I take these pink underwear off now?" We had forgotten about them, but he hadn't!

God definitely answered our prayer to help Luke come out of anesthesia easier than in the past. Instead of 2 hours of misery, moaning and crying, it was only about 40 minutes yesterday. Once he was able to say his tummy was hurting, we got Zofran in him and he settled down almost immediately. Watching your child come out of anesthesia is just plain awful. I'm sure some kids come out easier than Luke, but watching him so agitated and uncomfortable and not-himself is hard. After the Zofran, Luke watched some Phineas and Ferb in my mom's lap while I nursed Laney before I burst. From that point on, it was just a matter of making sure Luke was eating and drinking, and that he wasn't in any more pain. By noon, the I.V. was out, the pink underwear were off and we were signing discharge papers. By 1 pm, we were at Target picking out a new dinosaur. Thank you Lord!

At Target, we also picked up pudding, ice cream, Jell-o and Motrin.

As of this morning, Luke is playing cars and not even needing the Motrin. We are so incredibly thankful yesterday went so well and so thankful for your thoughts and prayers. We are continually overwhelmed by people's thoughtfulness and care for our family.

We will follow-up with Dr. Beck in six weeks. In the meantime, we'll be brushin' and flossin' fools!

Sunday, August 21, 2011

Powerful prayer

Our family believes in the power of prayer. We believe that God hears us and responds. No, not always in the way we want, but He does respond out of His goodness. We trust Him with Luke tomorrow and ask you to pray with us that 1) He guides the dentist's, nurses', and anesthesiologist's hands; 2) Luke comes out of anesthesia easier than he has the past few times; 3) there are no complications; and 4) Luke wouldn't be traumatized in any way.

Luke is calling tomorrow "Crown Day!" and is actually excited because after "Crown Day", he can chew on both sides of his mouth!

You're going to do great, Mr. Luke!

Tuesday, August 9, 2011

We have a date

Luke's dentist called this morning and they were able to get Luke's surgery scheduled for August 22nd at 8am. So thankful it's first thing in the morning. We have to go in on the 15th for his pre-op to meet with the cardiac anesthesiologist. Our dentist doesn't think the procedure will last more than an hour, hopefully less. This will include a cleaning, x-rays, fluoride treatment and then the fillings and sealants. Our boy is going to come out sparkly and shiny!

My big question to Dr. Beck was how do we make sure we don't end up back in the O.R. in a year if he gets another cavity. His response was very reassuring. He said the reason we're in the O.R. at all is because Luke is four. Luke at six or seven is a whole different story. At that age, it is super manageable to treat cavities in the office and not have to use any sedation. Our goal, obviously, is to steer clear of cavities in the future, but it's nice to know we won't be looking at another surgery if one does crop up.

We asked all three pediatric dentists we saw their opinion on why Luke got these cavities. The first guy, Dr. O., actually had a theory we are following up on with an ENT doc in September. He noticed that Luke's tonsils and adenoids were enlarged, which could be causing him to mouth-breathe at night. If that's the case (and I have seen it a few times when I check on him in the wee hours while I stumble to little miss' room) then Luke doesn't have the saliva protecting his teeth overnight. I asked him if this could correlate with how gaggy Luke is when he gets a cold and he said most definitely. Not fun to add another doctor's appointment to our summer, but Dr. O. really pushed for us to get Luke checked. And definitely not fun to think about another possible surgery! I vote these heart kiddo's should be exempt from any type of procedure not related to the heart!

Thursday, August 4, 2011

Dental drama

One thing that is increasingly clear in this adventure of raising a heart kiddo is this: nothing is as simple as you think it's going to be. We took Luke in for a routine dental exam three weeks ago, after Luke had complained one night about his molar hurting. This was at our family's dentist and the verdict was two cavities and a crack in the sore molar.

Bleh.

Dr. E. referred us to a pediatric dentist, whom we saw a few days later. This dentist, Dr. O., after examining Luke, felt like that cracked molar actually needed to be pulled as well as the cavities filled. This dentist wanted to be extra cautious, so recommended general anesthesia, which he could do in his office.

Bleh. Through tears, I scheduled that appointment and then put in a call to Dr. Stefanelli, Luke's cardiologist. "No way" was basically his response. No way was he okay with putting Luke under outside of our hospital, without a cardiac anesthesiologist present.

That left us at square one, since Dr. O. does not work out of our local children's hospital, Mary Bridge. We got a referral to another pediatric dentist with privileges at Mary Bridge, Dr. B. Two weeks ago, we went to his office for another exam — yes, that's three already! After looking in Luke's mouth, this doc had a different plan of action in mind. He agreed that Luke should undergo general anesthesia, but didn't think his tooth needed to be pulled. What he wanted to do was put caps on all Luke's molars so that in the next eight years, we wouldn't have to worry about any more cavities in his baby teeth. His thought process was that we don't want Luke under general anesthesia any more than we have to, so let's do this one time and one time only.

Okay. Plan B sounded good to us. We left there with a tentative date in early September for Luke's surgery.

Then, then, we got a phone call from a friend who knew our situation and who also worked in the pediatric dentistry field several years ago. She wanted us to know that she thought we should get a second (actually, third at this point) opinion because she didn't fully trust this Dr. B. Although this complicated matters even more, we felt like we had to get another opinion.

So on to Dr. Beck's office. After examining Luke, he suggested we try to fill the two cavities in office with the help of nitric oxide to relax Luke. This wasn't even on the table at the other's two offices, so we were excited to explore this option. The positive to this plan was — and a big one — that Luke wouldn't have to be under general anesthesia in a hospital O.R. The negative was that if Luke freaked out, we would have to stop the procedure and schedule the O.R. for another date. At this point, we wanted Dr. Stefanelli back in the conversation to help us make the decision. Was nitric oxide safe for Luke? Was this a stable enough environment if Luke were to de-sat?

This is the point in the story where I blather on about how much I love and appreciate Dr. Stefanelli. He understands that with Luke, and many of his patients, it all comes back to the heart. Decisions can't be made apart from a cardiac standpoint. He was completely a part of this decision and I trust him implicitly.

Yesterday, he and Dr. Beck talked. The decision was made to go ahead and get Luke scheduled through the hospital and not even attempt the procedure in-office. A piece of me was disappointed, but of course I want Luke in the safest environment possible, even though it means a day at the hospital.

So I had a little disappointment to work through, but also a little anger. Anger at his heart defect that complicates his little life, that makes things bigger than need be.

But he will be in the best hands at the hospital and he will get his teeth fixed and we will move on, hopefully cavity free!

Thanks to my Auntie Jen

I am stylin' today!

Friday, July 29, 2011

Laney's smile

Laney's smile melts my heart. Every single time. There is nothing better than a smile that involves the entire body.

video

I'm not sure if infant cooing is any indication of a future gabber, but this girl likes to talk! Reminds me of someone else ...

A few nights ago, Tutu and Papa Bill took Luke downtown to get frozen yogurt. And because she's grandma, Luke often gets to watch movies in Tutu's car. This night, however, the remote wasn't in the car, so a movie was not in the cards.

"Oh, that's okay Tutu. I don't need a movie, I can just talk."

The story goes that he did.

Friday, July 22, 2011

From 0 to 60

I am two months old (and 4 days)!

I have already given my parents a glimpse of teenage girl drama when I go from this:


To this:


In a matter of seconds.

I am still growing like a weed, weighing in at 11 pounds, 7 ounces. That's the 75 percentile, which I caught my parents high-fiving over. It seemed like they were pleased with my 22 beautiful, smoochable inches, too.

I am still the queen of spit-up, but since I'm happy 99% of the time I spit-up, and because I am gaining weight, the doctor doesn't want to make me take sour medicine. I guess my mom will just keep having to change her shirts all day!

I love, love looking at my birdie mobile in my crib, but that's about all my crib is good for right now. I sleep best in my cradle swing and my mom said something about survival and exhaustion, so it sounds like she's going to let me keep swinging for now. In gratitude, I gave her another six hour stretch the other night. But I like to keep my mom and dad on their toes, so last night I woke up to eat every three hours.

I am pretty happy when those big people put me on my tummy, and I even impressed them by rolling onto my back two days ago. Don't tell them, but I had no idea what I was doing!

My brother is still really loud, but I think I'm getting used to it. I also don't think he's going to change, so I figured I better! He is such a funny guy, making silly faces and showing me his toys. Just this morning, my mom caught us both in my crib while Luke was showing me his Batman. He is so excited for me to start laughing. He thinks he'll make me laugh all the time, and I think he's right.

So, I love my mobile and my brother and milk, but I also love being outside. If I'm fussy, usually a walk outside will calm me right down. I'm glad my parents are getting to know me better! Now, if I could just get them to stop putting me in the car...

Except for two more vaccinations, I don't go back to my doctor until I'm four months old! I like being two months, but four months old just sounds so cool.

Monday, July 18, 2011

Sat check

After examining, reexamining, thinking, over-thinking and fretting the last two weeks about Luke's coloring in his hands and feet, I finally took him in to our cardiologist's today for a sat check. Two weeks ago, Luke got a summer cold, so I chalked up his purple-ness to that. But his nose has been clear for a few days and I still felt like his color was off.

His sats were from 81-84 at the office today, staying mostly at 83%. This is about the same as when we were in for his big appointment in May. He was congested back in May as well, so I didn't think too much about it, but now I'm wondering if this is his new normal. Since his Glenn four years ago, Luke has always satted 85-87%, so I am not loving the lower 80's. I asked Dr. S. today if in the next couple months they don't bounce back up a bit if we would start talking about the Fontan. His response was that he doesn't really want to talk about the Fontan unless or until Luke is satting in the 70's. He reminded me today that Luke is still strong, sats of low 80's are acceptable, and this next surgery will not be an emergent one. All good things to remember, but I have a hard time seeing any kind of change in Luke.

I know the Fontan will happen eventually. I also know that it can benefit Luke, but there is much of me that wants to believe he'll never need it. Luke has two cards stacked against him going into the Fontan, which cause our cardiologist to hold off as long as possible. One is Luke's history with pleural effusions. The second is his plicated diaphragm. Neither help a body adjust to a Fontan circulation. That doesn't mean that Luke won't tolerate it, it doesn't even mean that he won't sail through the surgery, it just means he has a higher chance of a tough recovery.

After today, and reflecting on how much of my thoughts have been taken up by Luke's health the past two weeks, I realized again how closely worry correlates with the time I spend — or don't — with God. Worry is such a thief; stealing joy and peace right and left. Experiencing peace and joy doesn't mean I don't think about Luke's heart, or advocate for him, or take him to the doctor when I'm concerned. Experiencing peace and joy means that I live with the assurance that God is bigger than a heart defect; that His plan for Luke's life is perfect as is His love for our family.

Today I return to this truth: "You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the LORD forever, for the LORD, the LORD himself, is the Rock eternal." —Isaiah 26:3-4

Monday, July 11, 2011

Miracle worker

We've only had it three days, but it appears that this swing is a game-changing miracle — and the best $129 we ever spent:


Do you see how peacefully she's sleeping? Outside of someone's arms and the front pack? This little one is a finicky sleeper, but I have been able to lay her in this swing (awake!) and she falls asleep! On her own! (Can you tell I'm a tad bit excited?)

Laney sleeps awesome in her bassinet at night, but she has had a hard time sleeping there during the day for any extended period of time. It's usually 30-45 minutes max and then she's up, and wanting up.

Thank you, Fisher-Price! And thanks to my friend Pam who suggested we try a side-to-side swing. Luke's old front-to-back swing will be promptly going on Craig's List.

Speaking of sleeping babes, Laney Jennifer has slept a six hour stretch two nights in a row. I love this girl! (Unconditionally of course ... )


Wednesday, July 6, 2011

My little firecrackers

For our little family, it was a year of firsts this fourth of July: Laney's first holiday party, the first hot and sunny 4th in western Washington in ages, Luke's first time trying the slip and slide, and maybe most exciting of all, Laney's first five hour sleep stretch in the night! Granted, she hasn't done it since, but now we know she has it in her!

Here are Luke and Laney before spit-up and the slip and slide ruined their outfits.




The past two years, Luke would have nothing to do with the slip and slide. His cautious nature has never let him experience the fun before, but yesterday we couldn't get him off the thing! He has been fighting a cold for a few days, so I finally made him sit for a few minutes because he was coughing and coughing from running back up the hill. I hate to make him rest and really believe that he will self-monitor his activity level, but he wasn't letting up and his cough wasn't either.
 

Here is Rog telling Luke how proud he was of him for finally giving the slide a go.


We felt like Laney was a little too young to try the slide, so while brother was slippin' and slidin', little miss was happily being passed around from arms to arms. I so clearly remember Luke's first fourth of July. He was 6 months old and we were a month out from his second open heart surgery. I don't think I let anyone else hold him that day, for fear of him getting sick. What a freedom and joy to let Laney get passed around without anxiety setting in!

And who knows? Maybe 4th of July 2012 will be the year Luke finally stays outside to watch the fireworks!

Friday, June 24, 2011

You know ...

You know you have a newborn when your 4-year old asks, "Mom! Why are you dressed?"

I think I've gotten "dressed" three times since Laney has been born. One of those was on Wednesday when my hubby and I went on a dinner date for his birthday. On the drive to dinner, we realized that instead of going out to eat together, when Luke was exactly Laney's age, we were sitting together in the waiting room of Seattle Children's Hospital as Luke underwent his first open heart surgery.

It still stuns me that Laney is healthy and we are given a chance to experience the "normal" newborn experience. Laney's birth doesn't lessen my gratitude for what we've learned through Luke's life, but I sure am thankful to be going on dates with my husband instead of doctor's appointments!

I am thankful that Laney can spit up like a madwoman and we don't have to panic about the loss of calories.

I am thankful that I can let Laney sleep for as long as she wants without worrying she's sleeping too much.

I am thankful we don't have another appointment for her until mid-July and if that one is like her others, it will short and sweet.

I am thankful that her little nostril is free from an NG tube.

Most of all, I'm thankful for her thigh rolls!

Monday, June 20, 2011

Big Brother and Binky Boot Camp

For you heart mamas, his blue tongue is due to a blue Airhead!

As you can see, Luke seems to be adjusting pretty well to this new little person living in our house! Yes, he gets frustrated some moments, gets impatient others, gives me some seriously sassy looks, and cannot for the life of him stay quiet for very long, but then ... then I catch him this morning by Laney's bassinet, patting her back and turning on her music because she was crying. He got to her first. He loves to give her baths and thinks it's ridiculously funny when she toots (however, NOT funny when she spits up — and a spitter she is — this actually gets his gag reflex going).

One blessed mama

I couldn't be prouder of him, how he's handled this transition. Where I feared regression, he has become more independent. Where I feared jealously, he has grown to really care about his sister. To be honest, he has handled the splitting of my time better than I have! I had several days I couldn't hold back the tears because I missed some of our Mom-and-Luke "routines". Rog had to remind me (gently!) that Luke was doing okay, that he wasn't thinking about the shift nearly as much as I was. That it is natural, good even, for Luke to separate from me a bit.

As for little miss, we have enrolled her in binky boot camp. She has not shown any interest in the binky, but we have seen much improvement the last two days after beginning this intensive program. In fact, I would venture to say that she's beginning to like that little plastic thing! This has made car rides so much better and it is nice to have another soothing tool in the toolbox. She still has some work to do, as it falls out a lot, but we have been assured of positive results if we stick to the program =)

Now we just need to find a program that teaches babies to stay asleep when transferred from arms to bassinet!