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

Happenings

A glimpse into 24 hours of life with Sam...

We had a big thunderstorm the other night.  Sam (who has rejected his white noise CD ever since we accidentally forgot to hit 'repeat' a few times, causing a very scary heart beat track to turn on and scare the crap out of him) freaked out with the first big thunder boom that came at about 1am.  By the time I got to the top of the stairs, he had his glow worm in one hand and his blanket in the other and was getting out of bed to get the hell out of his room.  He has not slept in our room since he was 4 months old, and he has not slept in our bed since before his surgery at 3 months.  But what other option did I have? 

I laid him down between Chris and I, and covered him up.  He was really peaceful for about 5 min, and I even saw his eyes close a few times.  But, once he realized he was in Mommy and Daddy's bed, he started to play with the covers and ask for the phone (as I'm so sure Nana or Yaya would have wanted a call at 1am).  An hour later, once the thunder had calmed down, I told him "Alright, back to your car bed"...he protested and then pretended to close his eyes.  Too little too late buddy.  Naturally he had no problem going back to sleep, but getting up the next morning was rough.

For one, he didn't want to get up.  Then he didn't want to get dressed.  Then he definently didn't want to get in the car without getting to watch an episode of his beloved Yo Gabba Gabba.  I coaxed him into the car with a 'cookie'....a breakfast cereal bar.  He broke the bar in half by accident, and had a total melt down, asking me to 'fix it fix it'.  It was tragic.

Feeling bad about the broken cookie and rough morning, I took him to get some fries (his fav) at a new Burger King near our house. Daddy was out playing Ultimate Frizbee with his buddies, so it was a Momma and Sam date night. There is a huge play house in this BK...Sam's eyes lit up immediately.  Unfortunately, the makers of this play house failed to realize children younger than 8 might want to play too.  He wasn't able to get up into the tunnels because the stair case was GIANT....well, the first two steps werent, but after that they quadrupled in height.  When I realized he would never make it up into the thing, I had to go in and up the first two steps and pull him, kicking and screaming, out of the play place.  I (with my 7 month preggo belly) had to haul him in one arm and our food in the other out to the car, with him pitching a royal fit the whole way. 

Once again, feeling bad, I brought him to an out door play place at a church that is right across the street from our neighborhood.  You have to hike up a huge hill to get there, and hills really make Sam out of breath (me too, really).  He got half way up before I had to, yet again, haul him and our food (with my 7 month preggo belly) up the rest of the way.  The playground was wet and dirty from the bad rain the night before, and it didn't take long for Sam's pant butt to be covered in brown wetness.  When another little girl and her mom came, I right away told them Sam had cleaned the slides for them - I didn't want them to think he had pooed!  Not 2 minutes later, Sam made a very obvious poo (not audible or smellable...he spent about 3 minutes crouched in a corner grunting)!  Not wanting to break his heart and pull him away from yet another play place, I let him play for a few more minutes and then we made our exit.

I changed his diaper as soon as I got him home, and set him up on the couch in front of the TV (I know, I'm a terrible Mom) so that I could clean the kitchen.  About 5 min later, Sam started crying out for Mommy with a very sad little voice.  I walked out to the couch, and he was holding up his hands to me.  Both were covered in a peanut butter like substance.  Suddenly realizing what it was, I looked at where he was sitting.  Somehow he had pooed (again) and it had come completely out of his diaper (which had become bunched to one side when I put him up on the couch).  Sigh.  Spent the rest of my time cleaning poo off of Sam and the couch. 

Lessons learned thanks to Sam: 1. It takes effort to teach your kids how to sleep in bed with you, and I'm too lazy to try it again - ever. 2. Cookies may carry deep emotional meaning to a child, and you should not lie about what is or is not a cookie.  3. Stick with playgrounds you KNOW are YOUR kid friendly.  4. Poo happens.

Glenn-iversary

Today is Sam's second Glenn-iversary.  Two years ago, after a sudden medical crash where he nearly died, Sam went through a successful Bidirectional Glenn surgery at CHOA-Egleston in Atlanta.  It was at the same time some of the worst and best moments of our lives together as a family.  We went from rock bottom to new life.  Sam has started pointing to his scar recently.  He doesn't get it at all.  He looks at it like he looks at his belly button or his toes...it's just a body part.  But some day I hope he will look at it and feel proud and empowered by what he has gone through.  I remember taking photos of Sam without his shirt on before his surgery (before he got really sick) because I thought I would be so sad when I looked at his little scarred chest...I wanted to remember him 'pure'.  But I love his scars.  They mean life and hope, and remind me what the power of prayer and love can accomplish.  Love you baby Sam!

Oh Collaterals...

We have seen the Cardiologist at LEAST every 3 months since Sam's first open heart surgery 2 years ago.  We have been truly bless by 'good news' appointments.  It was only a matter of time before something turned.  We'll discuss the findings in a minute.  First, let's discuss the laughable disaster that was our visit to the Cardio today...

Sam and I talked about going to the doctor all the way to the office.  He was perfectly happy when we got there, and smiled at everyone.  He charmed the nurse into turning on the big screen in the waiting room (we were the first people there today), and played with their 2 foot tall toy clock - probably the highlight of his day.  Chris met us there and Sam and Daddy played in the waiting room while I signed a few papers.  Another little boy came in.  He had clearly just had surgery, based on how stiff he was moving and how his parents were holding him (you can't pick them up under the arms for 6 weeks after surgery).  But Sam got the little boy to play and it wasn't long before the boy was looking much more 'loose' and comfortable laughing with Sam.  Finally the nurse called us back.   At the same moment, the fire alarm went off.

We all evacuated to the parking garage - Sam, the little boy, the nurses, the doctors...everyone.  We were all standing in a circle talking about how this was their second alarm in 2 weeks.  One of the nurses tried to point out a police car to Sam, and Daddy picked up Sam to help him see.  Suddenly, I noticed a little wet spot showing up on Daddy shirt...apparently Sam's diaper got shifted and Sam got so excited about the police car, he peed all over Daddy.  We walked to the car for a clothing change (for Sam, not poor Daddy), and Sam walked the whole way like he had something terribly uncomfortable in his pants...the doctors and nurses couldn't help but laugh.

Naturally when we returned to the building after the alarm, Sam was pissed...he thought he had gotten out without having to see the doctor.  He cried through his EKG, BP read, and pulse ox read.  His pulse ox was 84%.  I was a little disappointed, since our most recent home readings were at 90%.  Remember, they want him in mid 80s, and dropping lower would mean surgery time.  So in my idiot mind, 90 is close enough to mid 80 to still be pretty damn good.  Anyway, Sam was a good boy for his Echo.  Luckily I had packed foot loops, and he ate them and watched Dora on the tv in the echo room while the lady took 30 minutes worth of photos.

The results were not bad, but not good.  Sam has collateral vessels forming from his aortic arch heading towards his lungs (Aortopulmonary Collaterals...APCs).  They are forming because our bodies are smart.  His body knows he has low blood oxygen levels.  So, it thinks it will fix it by building a secondary pathway for blood to get to the lungs to pick up some extra oxygen.  Sounds good.  But it's not.  I mean, if there was no other surgical procedure, then we would be thanking his body for giving it a good try.  But what initially starts off as a route to increase blood oxygen levels, eventually leads to blood flooding the lungs.  It also increases the work load on the heart, which receives a then increased return of blood from the lungs.  For a little heart already working double duty, this can quickly lead to heart failure. 

The first signs of collateral vessels are increased blood oxygen levels and increased fatigue with activity.  Both of which we have seen.  I was so proud of those 90% readings a few weeks ago, but they may be a sign that some collateral vessels have already grown enough to reach the lungs.  We had written off his seeming increase in fatigue with activity to the cold weather, frequent cold/ cough illnesses, and just a pure increase in chances to be active.  But this may be a sign of the increased work load on his heart.  Maybe.  We don't know.  The only way to know for sure is to do a heart cath. 

Currently, the echo can only detect the start of the collaterals.  They get to small to tell if they ACTUALLY have already reached his lungs, and they can also come from parts of the Aorta that can't be imaged by echo.  Since Sam's EKG, BP, and today's oxygen readings were around his normal, the doctor doesn't think the problem is too wide spread.  He wants to wait to see any changes over the next 3-6 months, and it sounds like that's the way it will be until it is decided that something needs to be done.  If we can hold off the cath until the cath he gets as part of his pre-Fontan surgery work up, that would be ideal.  We'll see.  Collateral vessels are common and almost expected in Glenn and Fontan patients, but I was hoping we could hold them off a little longer.

So it's not total devastating news, but it's just not the best news ever.  We got to pretend for the last 2 years that things were 'normal'...ish.  Trust me, it never leaves my mind what Sam will deal with in his life.  Now I can't stop thinking about freakin' collaterals and what they might mean or do.  BLAH.  I still feel like we are just about the most healthy Tricuspid Atresia/HRHS kid we know...we know plenty of kids with the same diagnosis who have extra diagnoses/conditions/problems on top of that which have caused any number of complications.  It makes me bitter to have to add a complication to our list.

I kept Sam home with me today (today is my one day off from work during the week, usually reserved for cleaning the house and errands).   I wanted to hold him a little tighter today.  We went shopping for new clothes for him, new toys for him, and got a cupcake from a fancy bakery in town for him.  He enjoyed it all, and enjoyed bossing Mommy around all day, too.  I tried to take a photo of him in his new clothes (and his new hair cut from yesterday), but he wasn't having anything to do with the camera today.  You'll have to live off of an older photo (from about a week ago...).  I love him.