Sad Day at the Cardiologist

Well, I guess we were bound to get here, one way or the other.  Just was hoping to hold off longer.  Our Cardiologist wants to do a heart cath in the next few weeks. 

We (Sam and I) went for Sam's regular 3 month Cardio visit today.  Chris is out of town and I was able to drop Luke at daycare before the visit.  Sam was SO good.  I can't even emphasize that enough.  He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach.  He weights 36lbs and is 41.5 inches tall....whoa!  Where did my baby go!

Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath.  He really can't play too long before he gets winded.  This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded.  Now, if you know Sam, you know he vomits A L L THE T I M E.  He's a gagger...it's just what he does.  But the vomiting just when winded is a fairly new development.  Cardio is going to send a referral to GI, just to check it all out.  He doesn't THINK it's heart related, which is good.  But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.

After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung).  It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before.  He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right.  He thinks the lop-sidedness might be causing the out of breath moments.  He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint).  While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming.  More of those have formed since last time too, which might contribute to shortness of breath.  He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more.  Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated.  I didn't think we would make it that far anyway, but hoped we would making a little further than this.  He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer.  We'll just have to see what they find and how much the coiling and ballooning help.

He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery)  kids on Asprin and Lisinopril to help heart function.  He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation.  He said all 3 will be life long.  I hate that.  But whatever it takes, right?

Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage.  It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience.  This is a new program at CHOA.  But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally!  My job will be to string them and start a journal for him for each bead on the string from birth to the present.  I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns.  He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is.  When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!

It may have been a blow, but we are prepared.  I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery.  It will be a rough few months for Sam, unfortunately!  He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away!  Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!! 

On a whole different note, little Luke is growing like a weed!  He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits!  He has the BEST disposition, and hardly cries.  He eats like every meal is his last, and sleeps like a champ.  He is starting to giggle, and loves to talk.  If he keeps being this good, he might earn himself a sister some day!  Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias.  I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta!  I would LOVE to snag a pediatric therapy job there! 

Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip.  We will then be headed to Mobile for Luke's baptism.  I don't think the fun ever ends in our house!

~Kathy

California, New School, and Birmingham...Oh My!!

So it has been a very busy few weeks for us...when is it not?

A few weeks ago, I flew to California with Sam, Luke, and my sister Amanda.  We met up with my parents, and spent the week visiting my Dad's mother and siblings.  I was VERY pleasantly surprised with how well both Sam and Luke did during the flight.  We opted NOT to bring supplemental oxygen this time, since Sam has done so well without needing it on previous flights.  He did great in the high altitudes too, with no obvious increase in cyanosis or his other cardiac symptoms.  Sam truly enjoyed playing at my grandmother's mountain cabin, and loved my uncle's jacuzzi and his house's proximity to the beach!  This was Sam's second trip to the Pacific, and he could have cared less how cold the water was, he was ready to dive in!  Luke was an angel, and decided it was time to start sleeping 6-7 hours at a time!  I hardly know what to do with a baby who sleeps!  The flight back was a little more rough, although not altogether bad.  Sam and Amanda sat together in a row in front of me.  Luke and I were literally squeezed in between two obese men, which made breastfeeding not only impractical but impossible.  Thank God I packed plenty of formula

The Monday we returned from California, Sam started at his new school.  It was tragic.  He hasn't been out of school more than few weeks since his birth.  This summer, not only has he been out of school for 8 weeks straight, but he has had a truly eventful 8 weeks full of Nana's and Yaya's and aunts and cousins...who would want to go back to school after all of that??  But his new school is great, and his sweet teachers have been so good.  I think they were totally baffled and freaked out when I informed them about his heart...I think they thought he might drop dead on them any second.  After a few tense days though, Sam has gotten used to his new friends and teachers, and they have relaxed about him!  He happily walked into his classroom today, and has spent everyday since the first day talking his head off about the new toys and new playground and new friends when I pick him up at the end of the day.

With Sam being out of the house, Luke and I have had some one on one bonding time...which really hasn't happened much since he was born.  Luke is SUCH a laid back kid...NOTHING like baby Sam.  Here's a photo from one of our recent busy days of doing nothing:

This past week, Chris had a business trip to Birmingham, Alabama.  The whole family came with him, even the dog.  We stayed at a nice little Embassy Suites.  We had an eventful 32 hours, which included one room change at the hotel due to leaking sinks, Sam puking in the lobby AND in his bed (sinus drainage caused a cough which caused a gag which caused...well, you know Sam...), and a brave trip to the zoo!  Which Chris was at work, I decided to take the kids out.  It just so happened the zoo was RIGHT next to the hotel, and (bonus) it was half price admission day!  Biggest problem: we didn't bring our stroller.  Thankfully, the rental stroller at the zoo was just big enough to squeeze Luke in his car seat and Sam.  (Note: stroller rental was NOT half price...)  It was warm, but not humid - a real rarity these days.  We thoroughly enjoyed our day.  Sam has a short attention span still, but loved seeing the animals.  I laughed out loud when he called the ostrich a dinosaur.  His favorite exhibit, however, was a the 'kids zoo' that included a water play area.  Luke, again, was an angel, and slept through most of the whole trip.

I have really enjoyed my maternity leave, though it has been extremely busy.  I have rarely had a single day where I just got to relax with my babies.  I don't know how, but the house seems to need more cleaning and more attention when me and the kids are home.  I feel like I'm constantly cleaning.  And I tend to get really bored in the house really quick.  Even though I LOVE being at home with the kids, I am ready to go back to work.  A) Sam's social nature and his super smarts have proven to me daycare is great of my kids development - I truly feel like he would be a different kid entirely if I had been a stay at home mom with him (and I don't mean in a good way).  B) I am a terrible person and wife after being locked in the house all day.  For my sanity and for Chris's, I need to be out and about.  C) I have a whole caseload of developmentally disabled kids who need me back at work!  For most of these kids, I'm their only option for PT.  And I'm happy to get back to them and do what I do. 

I have one more week at home, then it's back to our old routine. I'm ready.  But I'm going to live up this last week!

~Kathy

WHOA, Time Flew By!

I CANNOT believe it has already been 5 weeks since Luke was born!  We have some busy weeks following his arrival.  My mom stayed in Macon after Luke was born to help me with Sam, since Chris went back to work after just a few days.  Chris's mom came up about a week after Luke's birth.  Both Moms and Sam left to go back to Mobile, and gave Chris and I a week to ourselves to get to know lil' man.  After that week, Chris and I drove down to Mobile for a week of vacation.  Luke got to meet the rest of our families, including all his aunts and uncles (minus Uncle Mark and Uncle John) and all his cousin's.  We all came back to Macon and have spent the last week adjusting to being a family of 4.

Naturally, Sam returned to Macon SPOILED ROTTEN.  After a full month of having my mom's full, undivided attention, he has had a tougher time adjusting to being home with ME verses having a new brother in the house!  He doesn't interact with Luke much, but doesn't seem bothered by his presence, which is positive. 

Luke is a natural sleeper.  He goes down around 10-11pm, and sleeps 3-4 hour chunks of time, waking only to eat and then goes right back to sleep.  I could make a list a mile long of the ways Luke has been different from Sam...sleeping and nursing rank REALLY HIGH on that list!

Enjoy a photo of our sweet little Luke dressed as Yoda, which was Chris's Father's Day present!

Welcome Luke Christian!

SUCCESS!  We delivered our sweet boy Luke Christian on Saturday afternoon.

I went into labor on Friday after finishing up my last day at work.  Chris had to go out of town for business, so my parents had just arrived to help me with Sam while Chris was out.  I woke up from a nap in pain but not overly hurting.  My parents, Sam and I went out to eat for one last dinner, and I placed a call and got Chris to start heading home.  I went into the hospital with my Mom around 8pm but got sent home around midnight due to poor progress.  They gave me a sleeping pill, and told me to go home, take it, and relax.  I was a little hesitant but man that sure did the trick!

I woke up about 4 hours later in for real labor pain.  Chris was home by then, and he and I went back to the hospital around 6am.  Things flowed very smooth after that.  Got my room, got my epidural, and by 1130 we were pushing.  I'm a championship pusher (all the nurses told me how awesome I was,especially considering the epidural) and he was born after just 3 contractions worth of pushes.  Seems like there should be some kind of lapel pin or bracelet you should get to wear around for that kind of awesomeness. 

Anyway, Luke Christian was 8lbs 8oz, 21 inches long.  It was truly different getting to hold the baby immediately, keep him in the room with us after delivery, actually NURSE!  I can list forever the things that are already so different about this birth compared to Sam and the heart experience.  We even got to come home WITH HIM after 24 hours!  We got home yesterday afternoon, and have been enjoying figuring out what to do with a true newborn for the first time...it's like being a first time parent.

He slept great in the hospital, but decided last night to stay awake AAALLLLLLL night long...and try to use me as a giant pacifier ALLLL night long.  Sigh.  But we are having a great time.  My Mom stayed after the birth to help with big brother Sam, who is far more interested in having Nana around than Mommy, Daddy, and/or baby.  He does like to look at him momentarily, but would really just prefer to go to another room with Nana to play.  That's fine.  As long as we aren't having meltdowns over the baby like I thought we would, Sam will be fine. 

Say a prayer for us that this nursing thing keeps going well.  We pumped for 4 months with Sam and it was tortuous.  Also, Luke is not without a slight congenital defect.  He has a mild urethral defect that went undetected until birth that will need a specialist's opinion, with a possible outpatient surgical correction.  But we'll take that over a heart defect ANY DAY, and we feel confident all will be fine.  We are happy; we are blessed.

~Kathy

Can't Stay in there Forever!

Yes...still pregnant. 

But not for long!  For one, I'm dialated to 3cm as of today.  Two, this baby's getting evicted, whether he likes it or not, come Monday.  Induction starts at 7am! 

Chris just left town for 48 hours (he'll be 3.5 hours away).  Think I'll go before he gets back?

Say a quick prayer for Cain, who just had his Fontan.  Also for Alexis, who finally received her new heart after 8 long months in the hospital.  Alexis's whole family needs special prayers, too, as they just received word that their unborn child will also have a severe CHD and will need multiple surgeries.

~Kathy

Yeah, Still Pregnant.

I'm pretty over being pregnant.  Work is rough, as I'm either on the floor playing with kids, picking kids up, or holding kids using my whole body strength most of the day.  I'm hungry but can't eat more than a little bit at a time, thanks to a baby taking up my entire abdomen.  It's hot.  And I mean HOT.  My back hurts, I have no energy...blah blah blah...I'm just done.

Two weeks ago we had our 35 week ultrasound to check on the baby's position and size.  I was a little sad we didn't get to see his face since he was turned around backward, and we didn't get a single photo as a souvenir.  Baby boy was head down (which is good news), and was measuring at around 5 pounds 12 oz, which was a little big for his gestational age but that's how Sam was too.  I go to the doctor every week now, which gives me something to look forward to.  Most weeks are boring.  Takes all of 5 minutes. 

The most excitement we have had so far was last Thursday.  I had actual contractions (painful) for about 3 hours that night.  They never became regularly spaced, and slowly faded away.  Sigh.  It was a new experience for me though.  With Sam, my water just broke...I wasn't having any contractions.  The only contractions I got to experience were the ones brought on by a big bag of pitocen, and those contractions SUCKED. 

As far as the rest of the family goes, Chris participated in a Warrior Dash in North Georgia this weekend - an off road race with a lot of obstacles.  He had a good time, and Sam and I kept busy with our own adventures while he was gone.  I took Sam to Monkey Joes - a kid's playplace with a bunch of blow up moon bounce type stuff.  Sam was a little small for most of the stuff, but he had a blast just running around and watching other kids bounce and play. Parents are allowed to get in and help kids under 4 climb in the bouncers, but I didn't exactly want to go into labor at Monkey Joes.  Today, we went to our neighbor's daughter's birthday party.  They had a blow up moon bounce-like water slide.  Once again, Sam was a little too small for it.  It was a double slide, and they had once side with water and one without.  Sam was content with me shoving him up to the top of the dry side, UNTIL he saw the kids in the water.  But it was unusually cold today, and when the water would spray on him he would shy away.  I shoved him half way up the wet side a few times and he would chicken out as soon as the water would start to hit him. Finally, one sweet little girl coaxed him the rest of the way to the top and slid down with him.  Of course, when he hit the freezing pool of water at the bottom of the slide, it took his breath away and he started screaming!  He recovered quickly, and moved on to throwing water balloons at his own feet.  Needless to say, he went to sleep so easily tonight.

A few prayer requests:  A heart friend from north Alabama is having a very rough time with their child, who has a very serious complication in addition to HRHS (Sam's defect).  He is in the hospital awaiting their next move.  Another heart friend from Daphne with HLHS (opposite but similar to Sam) just had his Glenn (Sam's surgery), and is recovering.  And a prayer of thanksgiving for Amelia - niece of a friend of mine.  She was born at 24 weeks gestation the Sam weekend as Sam's emergency surgery 2 years ago.  She stayed in the hospital almost a full year, and has been struggling at times to reach milestones.  However, in the last few months, she has really started to thrive, and their most recent victory is that they are starting to gain ground with getting her to oral feed vs her G-tube.  It's been thrilling to hear her progress recently, and I've always been impressed with how well her parent's have persevered and helped her get to where she is today. 

~Kathy

Two Baby-Moons

Our little family was lucky enough to have the chance to escape our Macon, GA world for two vacations in a row these last few weeks.

First we were blessed by our neighbors, who gave us a weekend at their Fripp Island beach house off the South Carolina coast.  It's a private island, so the crowd was super small.  This was Sam's first real beach experience, since the oil spill ruined our chances to hit up the gulf coast last summer.  He had a freakin' blast.  He saw the water on our first trip down to the beach, and saw all the kids running around without shoes and shirts, and immediately started stripping off clothes while running down the beach to the water.  It was so much fun to see him explore and experience the sand and water.  Our neighbor's beach house was awesome too, and Chris and I got in some good relaxation time.

The next weekend we drove up to Gatlinburg, TN to my parent's cabin.  We picked up my sister Amanda at the Atlanta airport on the way, and then met Chris's sister Shannon and her family up there.  We did a waterfall hike, and Chris, Shannon, Mark and the boys did a bike ride through Cades Cove.  I hope they enjoyed the break as much as we did.  After Chris's sister and her family went back home, my parent's drove up for the Easter weekend.  They picked up my brother along the way.  I didn't think Sam would ever recover from a full week of seeing his cousins and being spoiled by family.  I'm finally getting to that point in the pregnancy where I would rather sit than do anything else, so I hope I didn't ruin anyone else's time...but it was nice to have a full week in the mountains to just hang out with family.

Speaking of the pregnancy, me and baby are doing fine.  I have had 2 nights of braxton-hix contractions, but I'm pretty sure it's because I can't lay off the sweet tea and caffeine.  We had our 35 week ultrasound today.  Everything went great!  Lil' baby had his face hidden, so we didn't get to sneak a peak.  But he is measuring a little a head of schedule, and weighing in a 5lbs 12 oz.  We should finish the last little touch on the room Sam and brother will share this weekend.  Now comes the list of last minute details: pack the hospital bag, bring down the bassinet, buy the last little bit of essentials including little tiny diapers.  I'm ready.  I'm done wondering how this will all go down....I'm ready to just get started!

Kathy